En Route

Instant Post Injection Reaction to Copaxone (IPIR)

2010-01-08T10:41:00.000-08:00

9-ish months or 280-ish days into giving myself a daily injection for MS, I had the Instant Post Injection Reaction (IPIR). I had the feared, the fabled, and the dreaded reaction! a week before Christmas. And guess what? I got through it like a pro and a champ! I was so proud of myself for preparing myself well for this possible reaction because although my reaction was intense, scary, and utterly exhausting, I stayed calm.

So, what is the IPIR? The IPIR is a rare reaction to the medication that can occur 35-45 seconds after you give yourself a shot. It is rare, they don't know why it happens (and it doesn't do any permanent damage), and it is completely random, so it can happen at the fiftieth injection or the two-thousandth or never. It can involve a range of reactions including flushing, sweating, heart palpitations, difficulty breathing, and, in my case, intense nausea.

When I was first diagnosed with MS and I was first considering Copaxone, I had glossed right over this part of the drug warning at first. That is, until I zeroed in on two very helpful blog entries from two different MSers who described an incident of IPIR. They told their stories without fanfare or drama--just the facts ma'am--and it suddenly became clear to me that an IPIR can be incredibly scary. What struck me even more than the details of the reaction, was how each woman emphasized not only how scared, shocked, and caught off guard they were, but also how grateful they were that their significant other was home with them when it happened. In fact, they stressed and underscored how grateful they were that they weren't alone. Uh-oh. Sinking feeling. I live a-l-o-n-e.

I sprung into action to address my intense fears of this reaction. I got a second opinion on which drug to use by traveling four hours away to the MS Center closest to me. I spoke with several Copaxone users, one of whom was a peer-to-peer consultant for Copaxone, who had had the reaction and who was particularly reassuring and gave me some good tips--mainly, to stay calm and to distract myself by focusing on TV or something else during the reaction.

Perhaps most importantly, though I worked with a yoga teacher for five one-on-one sessions--no yoga, actually, just talking--and we addressed my fears around the MS generally and my fears around the IPIR specifically. For me, the fear was so enormous and overwhelming, that I knew that no simple--"it's rare" or "there's nothing to be really frightened of" pep-talk was going to be sufficient. So, working with a mind-body-spirit worker and addressing each element of the fear from a whole-person perspective was essential for me. And, it did the trick. Five sessions later and my fear was non-existent. The reality of the potential reaction was there, but it in no way preoccupied or worried me. Most importantly, I built skills to allow me to stay calm if I had a reaction--I had deep breathing, a soothing mantra, and the realization that it would pass.

On the Saturday before Christmas, I gave myself a shot. I got up to get something from the fridge and by the time I got there, I was hit with a wave of the most intense nausea. My thought was "I. need. to. lie. down. right! now!" Before I could make it to my bed, however, I thought, "I am going to throw up everywhere!" As I sped towards the bathroom, I passed the medicine cabinet mirror. I saw my beet red face in the mirror and I thought, "What is wrong with my face!?" It was then that I realized I was having the IPIR. It was intense. Flushing, flop sweat, overwhelming nausea, difficulty breathing, I couldn't talk really or communicate. I barely made it to the sofa. I sat upright (you're not supposed to lie down during a reaction), and breathed slowly. I spoke calmly, lovingly, soothingly to myself: "You're OK, you're alright. You know what this is."

Within 15-20 minutes, the reaction had passed. And, then I was shaky and utterly wrung out. I mean, the stuffing was knocked out of me completely. I was absolutely. exhausted. And I couldn't get warm.

Before the reaction, I had been peppy--up and at 'em--looking forward to going to the local coffee shop, running errands, etc. The reaction, though, reduced my ability to move and operate to a half foot by half foot.

By chance, I had a massage appointment later that morning and luckily it is a half block from my house because I barely felt up to walking that far and if it had been any further or if I had had to drive, I wouldn't have trusted myself to drive. As I told my massage therapist about the reaction, I teared up. The reaction had really shaken me up. The massage--gentle, reassuring--helped immensely. By the end of the session, I felt re-grounded in my body. I took it easy for the rest of the day and evening. I went home and took a nap. I canceled my evening dinner plans. I took the night off.

The reaction definitely shook me up with its intensity, but my preparation was key in helping me stay calm and not escalating my anxiety. Once the reaction started, I just had to surrender to it because it was already in full force. Even more importantly, once I received the OK from my doctor, I got up the next day and gave myself a shot again and I have given myself one every day since. I have had to let go of the fear and the what-ifs and live in the present. It has been an important lesson--afraid enough to prepare and not so afraid I am paralyzed by fear. And, it has been an important lesson about choice. Taking medication is my choice, staying with this drug is my choice. I may decide something else in the future, but this is my choice right now. Just realizing that this has been my choice has been incredibly essential in my feeling empowered, not diminished by the challenges of this entire year.

Know What "Yes!" Feels Like

2009-08-03T12:43:00.000-07:00

This is a little phrase of wisdom that I believe I gleaned from Oprah. No matter how you may feel personally about Oprah, it's a great principle. In the last few months, I have been feeling so aware and so grateful to have emerged from first the initial shock of the MS diagnosis (November) and then the few months of reeling sadness and free-fall depression (December-March) that I have been practicing saying, "yes." Even during the depression, I realized that even when I felt truly awful, it was activity and company that helped me feel better and emerge from my blues and my funk. This whole summer has been an exercise in trying to say "Yes!" as much as possible. For me, this has meant two things. First, I have been paying attention to the things that I do that give me that deep, gut-satisfying "Yes!" I have been making a list of those things for myself, so I have a better since of what those things are. Biking, blueberry picking, road trips have all made the list. Second, however, I have been saying, "yes," even to things that I normally would say no to. I've been pushing through my own fear and knee-jerk resistance to say yes in spite of my fears. For instance, normally I prefer one-on-one interactions to groups, but I have been saying "yes" to groups. I normally like to be plan-ful and hesitate to do things last minute, but I have been saying "yes" to last minute road trips and other adventures. Ordinarily, I feel nervous about meeting new people, but I am learning to say, "Sure, bring your best friend, your girlfriend, your neighbor!" When have I EVER gone to a bar by myself to hear good music? Well, I did this summer. Last Saturday, I was shopping at the grocery store when I saw one of the handful of African Americans in my predominately white small town and I smiled broadly and said hello. She stopped me because she recognized me by sight from seeing me around although I didn't recognize her. We exchanged information and the next thing I know I had accepted, without any reservations or hesitancy on my part, a lunch invitation at her house this past Saturday. The conversation and food were excellent; I had a lovely time. It is feeling so good to broaden my horizons, to get past my initial hesitancy to embrace all the good things this world has to offer me. And, if something is as truly unpleasant as I had feared, I can simply chose to not do it again. I am finding, though, the rewards outweigh the risks by far.

Adventures!

2009-07-30T12:50:00.000-07:00

It's the end of July, summer is over half-way through, and I have been adventuring. In June, two trips to Philadelphia. The first, ostensibly for a Dr.'s appointment, but more importantly for a long walk through the city, stops at Ethiopian and Indian Markets in West Philadelphia, another stop for cilantro lime gelato, a brief reprieve from a rainstorm in a small cozy independent bookstore, and then, that evening, not just one, not two, but three shared platters of Ethiopian food. Deeply satisfying. Then, a second trip to the Philadelphia area the same month to see several friends in New Jersey to attend several parties and to meet up with several friends in Philadelphia. Spacious. Full of laughter and connection. Then, this month, an impromptu trip to Virginia to see a band and, in a delicious additional benefit, eat bratwurst slathered in sauerkraut. Blueberries came into season this month and I drove out to a pick-your-own farm and picked nearly eight pounds of blueberries. Even more miraculously, I didn't react to the heat beaming down through the noon-day soon. Many MSers are heat sensitive, but that doesn't seem to be true for me. Tonight, I lounged for several hours in a hot tub at 101 degrees and didn't have any neurological symptoms. I feel very, very, very fortunate to not react to heat.

Each morning, I wake up and am deeply and profoundly grateful: "hello, my dear legs, hello my eyes, hello, hello!" I feel corny and goofy and, most importantly, joyous. I am in an MS reprieve and each day of the reprieve is a day I celebrate. I don't know how long this reprieve will last, but certainly while it is here, I am very, very, very grateful.

2009-06-17T07:26:00.000-07:00

I've been feeling great. I've been loving life. And, yet, I have MS, so I am ill, right?

One of the most confusing and baffling aspects of my having MS is the discrepancy between how I feel/look/am. Right now, for instance, I am in full remission; I am having nary a symptom and emotionally, too, this last month I have felt better than I have in months. So, what's the problem? Well, it's that there are odd off-and-on moments when I am forcefully jolted back into the realities of having MS and I am floundering with how to communicate this dual reality to both myself and to the people in my life. How do acknowledge my limits to myself? How do I express my limits? How do I communicate the complexities of my internal realities?

Perhaps the best metaphor I have come up with for my experience is that I am a very full tea cup, full to the brim with tea. I loose sight of how full I am for quite a while and go merrily charging around and enjoying my life, full of vim and vigor. That is, until I get an extra splash on top of the already full tea cup--it could be a piece of unwanted advice about MS, and the whole cup spills over--sploosh. Suddenly, I am very aware of this underlying reality, the very full tea cup. It's so easy, then, to try to blame, regulate, or yell at the splasher--don't give me advice, don't talk to me, don't bring up "X".

There is a place, absolutely, for boundaries and understanding my own limits as well as clearly communicating my limits to the people in my life. Yet, at the very same time, it is important, essential even, for me to recognize that the problem really isn't so-and-so's advice as much as it is MS itself. MS--symptoms, worries about the future, precarious healthcare, potential disability, job security or lack there of and on and on and on--are filling the cup. The splash is really the least of my problems, but it does stir up the whole cup and make me aware of the complexities, contradictions, etc. of the problem and my impulse, my knee-jerk reaction is to try to regulate the splasher and the splash. "See, see what you've done," I want to shout, to holler.

But, of course, no one has done anything. It just is. The MS just is.

The people in my life can love me, they can hug me, they can help out if and when I ask them to. The doctors can advise and give me medication. The therapist can listen and the trainer can help me build a workout program. But the only person in the whole wide world who can drain the tea cup is me.

There are things that aggravate me now in ways that they never had before and that includes advice (have you tried...I just read...), uninformed opinions that are not helpful (my Aunt has that and she never had any problems), and tirades and venting that is circular and without resolution.

I have also been keeping a list of what helps drain the tea cup and it includes the very basics: adequate sleep and quiet down time, good wholesome food, walks in beautiful nature, and time with friends, and making a dent in my work helps, too.

So, I trying to maintain some balance between tuning into my inner realities and remembering to stay tuned to its frequency, so I can clearly communicate and yet at the same time, stay grounded in the world and enjoying this respite from being actively ill.

I've Been Loving You So Long

2009-05-27T07:56:00.000-07:00

Most days, I love being single. Some days, I am even downright greatful to be single. Other times--moments, or even days, I looong for "my person."

I had another great weekend, this holiday weekend: Long days of restful, lazy contentment. I soaked in the warm days upon days of sunshine. I read, I made some good meals, I took walks, and I biked (my very first full 8 miles, go me go!). It was deeply spacious and restful.

Still, by the end of the weekend, I longed for "my person". The person that not only I could tell about the weekend, but who had experienced the weekend with me and who I could say to, "Wasn't that just so gooood?" And, who would KNOW exactly what I was talking about because she had been there and enjoyed the spacious, precious time as much as I did.

My person, who would let me just talk, blab really, about my fears of the illness, someone who would just listen and allow me the space and dignity to work through my own illness dilemmas. My person, who would help me strategize about the illness and come up with how "we're going to manage". My person, who when my eyesight got wobbly or my hands got shaky, would willingly be my eyesight, would be my hands.

Dance, Dance, Dance!

2009-05-17T11:15:00.001-07:00

Last night, there was a band in town I wanted to see. Afromotive, an afrobeat band from Asheville, North Carolina, was playing at a local bar. One fan described them as, "James Brown went to Africa". A combination, then, of traditional African music with funk. I definitely wanted to check them out. When I couldn't get any of my friends to join me, I hesitated. Well, I am tired anyway, I thought. Plus, I can't go to a bar alone, right? And, then, I went. I hustled through the rain, paid the $4.00 cover charge, and entered the crowded bar around 10:30. They were good, really, really good. The musicianship--two trombones, keyboard, bass guitar, traditional drums, and a drum set, was top notch and the joint was jumping. I was there alone and I got up the guts to dance within a few minutes of walking through the door! I danced, I grooved, and I moved. And, then, just before 1:00 a.m., I headed home. I felt revitalized and rejuvenated.

Lately, I have felt like a tree spreading out her roots in search of more nutritive soil. And, I have been taking note of moments and hours, even, like last night, when I feel fully nourished. My friendship circle has been expanding, I have been taking more risks, and I have been rewarded with the joys that growing and stretching can bring. I've been channeling the bravery in me that I know that I have and I am realizing that bravery is a muscle that must be exercised.

Amen, Amen, Amen!

Reflections on My Year Anniversary of My First MS Episode

2009-04-29T07:26:00.000-07:00

i found god inside myself / and i loved her / i loved her fiercely - Ntozake Shange

This is my year anniversary of my first episode (and, if we're counting, my almost half-year anniversary of my diagnosis). I have been reviewing the year and I realize, I have emerged from a storm. When this all began, I truly doubted that I could get through this without a partner, without "my person". I have most certainly yearned, ached even, for my person who would hold me as I cried and hand me tissues during the many, many tough moments that this year has held. Yet, here I am. Still standing. Still standing! It seems miraculous, really.

As in any storm, there has certainly been wreckage. I lost one of my dearest, closest friends this year; our ten year friendship broke down and we broke up. I was stunned by our falling out and so saddened by this loss. Even though I have many other wonderful friendships, I am so clear on the fact that she (nor anyone else) is not replaceable. So, that loss is a sadness I very much carry with me.

At the same time, the blessings I have felt this year has been through all of my friends who have stepped up and stepped forward to be there for me even as they faced their own most difficult and challenging times. I been so lucky, so truly blessed to have thoughtful, courageous, creative, kind friends. I have been given such tender gifts through their presence in my life. Then, too, there have been several new friendships that brought lightness, laughter, and play into my life. Such sweetness! I am a lucky woman.

Moreover, as I look back, I am surprised to to have discovered such strength inside myself. I stepped up for myself and showed myself that I am one of my own best friends and allies. Fiercely devoted and protective. So, at the end of the year, these are all the things I want to hold on to. How much I have. How blessed I am.

Turning Points

2009-04-03T13:17:00.000-07:00

When I took the on-line quiz about self-care and chronic illness. A light bulb went off: Oh, I don't have a plan (for dealing with MS). Medication, I ultimately realized, is not a plan. I sprung into action and am enacting the following plan:

Diet. There are many diet plans for MS (low-fat, gluten-free, anti-candida, etc.). For me, I have deliberately chosen not to believe there is any single one answer, so while I have reviewed the diets that promise a cure from MS and I have taken them into account, I reject the premise of a cure. For me, a cure is too narrow and it doesn't allow me to respond as proactively as I need to my entire health. And, for me, any suggestion of "the answer" has its dangers. For me, a diet without beans and soy is too narrow. A diet that just emphasizes low-fat doesn't take into consideration all of the information on healthy fat. So, I have chosen the anti-inflammatory diet because it emphasizes whole foods + whole grains + healthy fats + sleep + exercise. Low fat meat and fish are encouraged. Processed foods, hydrogenated oils, and sugar are eliminated or kept to a bare minimum. Some anti-inflammatory advocates caution against night shade vegetables including tomatoes, peppers, and eggplant; the evidence against these vegetables, though, is minimal. For me, I have decided no vegetable is my enemy unless I have a pronounced reaction to it (unbelievably, I am allergic to the all-American, inexpensive, and healthy broccoli). Part of my diet plan is to work on effective substitutions. Instead of chocolate chip cookies, I will eat high cocoa chocolate. Instead of Cherry Garcia Icecream, I will try a bowl of cherries. I have also added a regular, high quality fish oil supplement.

Exercise. Exercise is an essential component of reducing inflammation and I have chosen to bike. Training for the City to Shore Bike Ride in October is a perfect goal. For the first month, I am mainly building my base on the bike. Now that I have outlined a five-mile circuit that I can do reasonably well, but not completely (still practicing the hills), I have decided to ride this circuit until I can ride it a full week in succession without getting off my bike once. From there, I will build distance. Slowly, I hope to build to 25 miles. I just read a great article on how to ride hills and I can't wait to get out and try it. In the meantime, I realize I need to create a plan "B" for days like today that are wickedly rainy or in the summer are too hot to ride outdoors.

Sleep. My sleep has been involuntary interrupted for months now and I am trying to get back on track. I have committed to moving my laptop out of my bedroom before I go to bed each night (otherwise, I get sidetracked and delay my bed time or I wake in the middle of the night and get on line for several hours). I often fall asleep with my light on, so my next step is to turn off the light every night.

Flossing. Don't laugh. Flossing is tied to healthy gums - inflammation of the gums is tied to inflammation in other parts of the body, so flossing regularly is key. Of course flossing includes all aspects of dental hygiene including brushing teeth and regular dentists visits.

Most importantly, though, is regular doses of laughter, surrounding myself with positive, supportive people, and a positive attitude. I am committed to using MS as an opportunity for growth. And, on a regular basis, doing activities that make me deliriously, deliciously happy including: listening to good music of any kind and live music in particular, riding my bike, and hunkering down with a good memoir.

Starting the day with the question: What will be most satisfying today? is a great way to move the day in a positive direction.

Right On Time/Ready

2009-04-03T13:16:00.000-07:00

I got the call yesterday. My application for financial assistance for medication has been fully approved by The National Organization of Rare Disorders (NORD). Phew! and Hallelujah! In response to the news that I will be covered 100% for 12 months, I gushed on the phone with the representative: "Oh, this is such good news. This is great! Oh! Wow, this is great news!" I am truly grateful. And, not a moment to soon, too. In other words, right on time.

I am glad that I have had several months now to adjust to the idea of daily injections. The idea of the medication side effects of Copaxone have frightened me so much that I needed the time to really work towards feeling comfortable with this new phase in my life. The process of getting comfortable has been intentional and gradual. Honestly, the potential side effect feelings similar to a panic attack have completely trumped any fears I might have of needles or performing self-injections. Here are the steps I have taken:

Read several blogs on experiences with Copaxone and got real about the potential side effect
Spoke with a friend of a friend who is successfully on Copaxone and very positive
Sought a second opinion for the treatment at the MS Center in the nearest, largest city
Spoke to a member of the Copaxone peer-to-peer education team about Copaxone
Took an eight-week yoga session to get more in touch with my body and my breath
Had five individual sessions with my yoga teacher (whom I LOVE) to come to terms with the diagnosis and to address my fears of treatment by developing a spiritual practice.

I had my last session with my dearly beloved yoga instructor today. We agreed that I was in a very different place then when I started working with her. Mainly, I feel that I have settled into myself and I have embraced this journey with Multiple Sclerosis as-gasp-a gift.

The Power of Tabling It

2009-03-30T09:06:00.000-07:00

Friday was another absolutely infuriating, frustrating, hair-tearing-out-day full of phone calls, in-person trips, and dead ends trying to figure out how to get my health insurance to cover the medication. That morning, I had made a phone call and come up with a solution that I thought might work. Unfortunately, no such luck. By late afternoon, any hope I felt that morning had evaporated. I felt as if my life was a giant sink and I was being sucked unceremoniously down the drain. And, then (to mix metaphors completely), I made the purposeful and empowering, but completely uncharacteristic, decision to table it for the weekend. It was hard, especially the first 45 minutes, because I desperately wanted to vent, rant, cry, and gnash my teeth to anyone who would listen. But, that would have added to my misery and I had already spent several hours that day focused on trying to resolve this issue to know avail.

After a good cry, I forced myself to reopen my computer, to bring the current chapter up to the screen, and to refocus on my dissertation work and just those gestures helped immensely. The thing is, generally, I am a genuinely terrible table-er. In part this is because I am absolutely convinced that tabling will never work. How can not focusing on the problem even for a short period of time work or possibly be useful? Or, how can I possibly table X, Y, or Z when anyone can see it is WRECKING my life and I am at its mercy? But table it for 48 hours, I did. And helpful it was.

So, here's what I did instead of agonize: The next day, I took a bike ride and stopped by the bike store to pick up a tiny bag for my seat to hold my wallet, keys, and phone), so I can bike unencumbered. I rode the beautiful course around the golf course (3 miles). I attended a lovely baby shower. I made dinner for a friend. I talked on the phone and I cleaned my house and made it more comfortable and presentable.

And guess what? Today, Monday, I feel genuinely better. Imagine that. Proving, once again, that sometimes what I instinctually do is absolutely the wrong approach and that what I am convinced won't help can be absolutely necessary.

Truly Blessed

2009-03-22T18:32:00.000-07:00

I had a great weekend--not to sound too grand, but the kind of weekend that reminds me of all the aspects of my life that I cherish. I spent Saturday, Saturdaying--a satisfying mix of cleaning my house, wandering through the local hardware store selecting herb plants--cilantro, basil, and oregano, and then that night going with friends to see the cutest, most charming lesbian singer-songwriter at a local venue. I hadn't been totally sure of her music when I listened to her on-line, but--oh! her voice!--strong and smooth. The stories she told in between songs, her dimples, her intense gaze as she caught my eye (and that of other audience members) and her wonderful guffawing laugh that filled the small venue. And, then, there was the audience itself--full of lesbians--many couples. Short hair and earrings and masculine femininity. And, I had that moment where I looonged and yearned to be apart of that kind of space again--both the space, where a woman puts her arm around me or her hand on my thigh in a public place--and the space of being part of a larger lesbian community.

As a perfect capstone for the weekend, I had a really lovely early Sunday morning bike ride. A friend and I met for breakfast and then loaded up our bikes onto my trunk rack and drove out to bike and explore the new bike path I discovered last week. It was a shivery cold morning and a watery sun hung over the horizon. We road along side the sputtering creek and noted not only the leftover dried berries on the leaves, but also the first signs of spring--delicate new, green growth. Over a several mile ride through partial farm country--we also saw sheep, cows and several baby calves, several geese flying low, a robin hopping along the grass. However, more than even the sights of the ride, I was touched by the spirit of the ride.

I am out of shape and very much a beginner and my friend is a seasoned athlete. So, when we got to the sloping, long and slow upgrade of the hills, I got off to walk and suggested she go ahead up the hill with out me. I felt shy and embarrassed by my need to walk, but I knew it was so early in the season and I had just started riding again, so it was best not to push it. She declined my offer and instead, dismounted to walk with me. We walked. Then, we mounted and road on a flat part of the trail. We rode. Then we dismounted and walked a hill. Then, we rode again. And dismounted again at the next hill. Up and up we snaked. At the top, the very top of several ascents, we stopped and got ready to return. We pushed off and sped down those hills with a blissful--wheeeeeeeeeeee--thrilled to be racing down hill at full speed--we both love a good descent.

I was so touched by my friend's patient, generous spirit toward me. She made it easy for me to lose my self-consciousness and to have confidence that I will be able to complete the 25 mile ride that we're embarking on together in October. As she reminded me later, "We're a team".

This ride served as a perfect metaphor for what I am looking for in my relationships, I want someone who is willing to stay present and to walk with me, even on the hard, slow, uphill parts. I am not ready yet to embark on a serious romantic relationship, but when I am, I am grateful to have a reminder of what a genuine partnership feels like:

Sweet, sweet bliss.

Necessary Reminder

2009-03-20T07:18:00.000-07:00

"You do not have to be good.
You do not have to walk on your knees
For a hundred miles through the desert, repenting.
You only have to let the soft animal of your body
love what it loves." - From Mary Oliver's Poem Wild Geese

Tell. It. Mary Oliver. Tell it!
I have always loved to bike ride. My first bike was a blue and candy pink number with butterflies and multi-colored streamers flickering from the handle bars. In my childhood, having wheels meant freedom. My gang and I biked to the pool and to the park, biked to explore the islands off the local rivers, biked to picnic, and biked several towns over (this was the serious advantage of growing up overseas where bike paths are everywhere) to hang out for the day. After my parents separated and we moved back to the States, I spent much of my seventh grade year (the worst year e.v.e.r. to be introduced to the American school system), biking the town with my friend and neighbor, Amy. At the time, we lived in a small town with a beautiful lake and lots of hills, so Amy and I would alternately, bike around the lake (7 miles, baby) or climb the steepest hills in our town in order to rest at the top for a few moments and then soar down the hill at full throttle. I began to bike again a few years ago when I plunked down the coin for a good hybrid bike (fat wheels, upright handle bars, no cross bar), but I haven't ridden all winter and now that it is spring, I have been eager to ride again.

I live in a beautiful semi-rural area and now that I have a car, I have more options to drive out, park, and explore the region by bike. I devoted much of the last week to getting my trunk rack, which has been a whole project (research, reading reviews, and several trips to the bike shop) and I now have a secure trunk rack on my car for my bike that will allow me to tool around my county, park, and ride. Yesterday, I loaded up my bike and went for my first ride of the season out by the nature reserves. It was a windy, cool, sunny and beautiful day. I arrived around six and the parks and paths were almost empty. I biked up the path, over the stream, and alongside the woods. I felt bliss-full, joyous, at peace. I was having trouble with my bike seat - I couldn't get it to budge and therefore was riding too low (a problem I resolved once back at the car where I had the tool I needed to correct the problem), so I did not explore as far as I wanted to, but it felt great just getting out, pedaling, letting the wind wash over me.

The stress that I had been feeling when I arrived at the park? Vanished. Another reminder, in fact the manillioneth reminder that feeling good is just about feeling good, it is not about actually getting anything solved or resolved. Even more importantly, feeling good does not have much necessary correlation to being good or walking through the dessert on my knees, repenting I am delighted to discover. I needed that reminder.

2009-03-13T21:35:00.000-07:00

Rob Breezny's Scorpio Horoscope for Week of March 12th. "'Here's what I'm looking for,' said a personal classified I read online. 'Someone who can tear me away from living inside my head . . . who sees things in me that I don't see myself.' That's exactly what I want for you right now, Scorpio. Whether this someone shows up in the form of an ally or enemy or beloved animal or invisible friend, I don't care. The important thing is that he or she awakens you to certain mysteries about you that you've been blind to, and helps free you from the unconscious delusion that all of reality is contained inside the boundaries of your skull."

Hee. Hee. As usual, Breezny hits the nail on the head.

In an effort, to get outside the "boundaries of my skull," I decided a few months ago to enter the MS City to Shore Bike Ride in New Jersey this upcoming October. Winter has dragged on, but now spring is here and it is time for me to begin training.

I am currently in the market for a bike rack and for a bike computer to track my miles. I have begun to identify training routes. I am fortunate to live in a gorgeously scenic area and I am really looking forward to feeling the freedom riding my bike brings me.

I have a terrific bike that I love. I am scheduling a tune-up to get her ride-ready. Still, I am out of shape, so I will start s-l-o-w-l-y. Rather than make grand goals or chart out the exact training course, I have decided to give myself a few weeks to a month, just to ride and enjoy it and see where I am at in terms of the number of miles I can easily do. I will build from there.

And, if an ally or friend, or better yet, gasp, a girlfriend, comes along to help me awaken to certain mysteries about myself that I have been blind to, well I will welcome the revelations.

Coming to Grips (Again)

2009-03-12T21:05:00.000-07:00

A friend of mine who has a chronic illness and I have recently begun to meet every two weeks to discuss our experiences with our new diagnoses. Each time, we choose a topic to focus on for our meeting. During our first meeting, two weeks ago, we discussed managing daily tasks (chores, school work, jobs) with limited energy and/or during flare ups. During this upcoming meeting, we will discuss creating and sustaining a support system. While this topic is broad, we plan to discuss how to talk about our chronic illness with friends and families, how to set limits and boundaries, how to maintain friendships, and how to build support with professionals and support organizations. As I begun to prepare for our our topic, I began to think about how the most crucial step, the foundation of all of our topics, in fact, is honesty with myself. How can I clearly communicate with anyone what my needs are or be proactive in building my support system if I myself am not clear with myself where I am at.

For me, I have felt more fragile lately. It doesn't take much these days for me to feel hurt, sad, or overwhelmed, or thrown off balance. I have also been feeling very irritable. Whereas normally I pride myself on being available and being an empathetic listener, lately my ability to be available is very limited. I feel profoundly depleted. At the same time, these states wax and wane--always present to a degree, but sometimes much more intense than others. What has been challenging is staying in touch with how I am feeling and communicating it when it is so in flux.

In addition, I have noticed how much pressure I feel from myself right now. After all, I am not actually ill, I tell myself, so quit whining! It's hard to come to terms both with my illness and with my feelings because they are both invisible, so I find myself questioning their legitimacy and I struggle with how to assess and address my needs.

I found a great quiz "The Coping with Chronic Illness Self-Care Quiz" by Pauline A. Salvucci (find the whole quiz here at: http://www.healingwell.com/library/health/salvucci2.asp). She asks questions such as: Do you follow your doctor's treatment plan? Do you more than accept or deny your illness? Have you made changes to your self-care since your diagnosis? As I answered these questions for myself, I realize that I am still grappling with what my illness means because I am completely unclear how this illness will manifest.

In the meantime, I am not coping as well as I could be. Instead, I am vacillating wildly between scrambling to shore myself up against future possibilities and denial because I am not currently experiencing any symptoms. Perhaps even more importantly, though, is that I feel like I have been left completely to my own devices to come up with a comprehensive treatment plan and to sort through the overwhelming information and claims of "cures". So, I have been casting about wildly, but without a clear vision or understanding of my plan. What I decide on Monday, I completely abandon by Wednesday. I need a clearer way of thinking through and creating a plan for wellness--I need to write down guidelines for myself and make a commitment to it.

Interestingly, and perplexing, I think my brain is short-circuiting partially because nothing I do will "cure" my condition. In the face of the incurable, it has been easy to throw up my hands and think, what's the use of getting enough sleep or eating well, how much can it really do, anyway? Irrational, but true!

This is all still so new; it's only been four months since I have received a definitive diagnosis. This knowledge gives me some patience and compassion and the answers to my quiz give me a place to start coming to better terms with this illness in such a way that addresses comprehensive wellness. And, it begins by writing down a plan.

Q = Quit

2009-03-06T00:45:00.000-08:00

A is for Apple, B is for Banjo, and Q is for Quit.

For weeks now, I have felt like an embodiment of a giant crop circle. I have felt as if I am stand ing in the center of a giant field, arms spread straight out, twirling in a mad circle, clearing every obstacle in my path until what remains is a perfectly round clearing, visible from thousands of miles above. As my yoga teacher quipped, when I shared this metaphor with her, "What message is revealed?"

What message, indeed?

With focus and rapidity, I have been clearing activities, tasks, and people right and left. I have been working simply off instinct, off an inner knowing. I have some things that I have been deeply involved in for years and that I have LOVED and over the last few weeks I have quit them suddenly with only the most minimal notice. Next on the chopping block? Individual therapy.

I have a most profound craving for quiet, for stillness. In yoga, the image that keeps reemerging is of picking up my head and taking it off and setting it aside for a while: no more thinking, no more processing. Suddenly, words are just too much. And, I love words--my profession demands words--but in every form I am craving release: release from reading, thinking, and even talking. I want a capital b-r-e-a-k, BREAK.

Breaks, of course, don't simply come from quitting. It's so easy to quit ABC only to fill it back up with XYZ. True breaks, the best kinds of breaks I have experienced, come from setting an intention of rest, of a sabbath, of a sabbatical.

Alongside all of this quitting, I have had a deep yearning to install a hammock in my apartment. The kind that sags in the middle so that I am nestled and cocooned into the hammock--suspended, weightless.

This image, I have come to realize, is my image of the relationship to God that I am yearning for right now. I just want to trust that I am held. I just want to surrender to a deep rest knowing that I am protected and cared for. I want to lay on God's chest listening to the deep thump-thump-thump of his or heart beat, and sleep the sleep of a slumbering babe--unconcerned, unselfconscious, relaxed, restful, and deeply secure.

Q = Quiet. Q = Quaker. Q = Query. Q = Quest.

I am reminded of that old Quaker bumper sticker: "In case of emergency, please be quiet".
So, my intention for this time, which is not a few hours rest or a weekend sabbath, but rather is a full on sabbatical, is to seek out "the peace that is always already available". To me, this means both seeking out intentional quiet and also bringing quiet and stillness into my busy, well-connected lively life of dearly beloved ones and work and daily obligations. It's not a cloistering or a cutting off, but rather it's seeking to live daily in the intentional presence of the divine.

Q is for Quiet.

Back Up, Don't Beat Up

2009-03-05T14:24:00.000-08:00

Recently we received an e-mail from a lovely and very determined woman with MS, who was reporting her progress and asking a few more questions. She had vowed not to make any mistakes on the diet. The following is what I replied: Please don't fret about mistakes--they can be very helpful. Someday down the line, you want to eat something bad so you can learn what your usual reaction to it will be and then you can see how quickly you can recoup and what works best to get back. You need the mistakes to add to your understanding of your reactions and your body--without mistakes, you will not be as effective in your healing. Everything is reversible so there is no long term effect from them. Once you discover this for yourself, you lose your fear of MS. It is very liberating. So, do make those mistakes.--Ann Sawyer (Co-Author of The MS Recovery Diet).

While these words were in the context of the MS Recovery Diet (which, to be clear, I am not vouching for one way or the other), I thought this was an inspiring and beautiful way to think about mistakes in general and mistakes regarding our health in particular. This is the line that I think captures the concept best: "...without mistakes, you will not be as effective in your healing". Bee-ooo--tiful. Indeed.

Rather than simply bumbling through, though, I am enjoying writing down my experiences--mistakes and imperfections in my health journal. Allowing myself the opportunity to just observe and get curious about how and why I am functioning in certain ways is refreshing. Or, as health consultant Kelly Bliss has so effectively stated "Back up, Don't Beat up".

For instance, I am continuing to have trouble sleeping. On the surface, this seems like a simple enough problem. However, as I have backed up and studied why/how this is happening I have noted that the issue is multi-fold and lasts the ENTIRE sleep cycle. Not only do I have trouble going to bed (anxiety means I push my bed time back until I am absolutely exhausted), but also my sleep is often fitful and I wake up many times during the night. I often wake up suddenly with a jerky wake-up movement which not only shows how cyclical this whole sleep issue is, but also suggests that I may very well have an underlying sleep disorder, such as sleep apnea. Sleep apnea, the temporary stopping of your breathing while sleeping is a serious but treatable disorder.

In short order, I am MUCH closer to solving the real problem. Although my health insurance does not cover sleep studies, as it turns out there are new devices on the market that for relatively cheap can allow you to test for sleep apnea. So, my next steps are to investigate which brands reviewers suggest and to conduct the test.

The larger issue, though, is not so much about any individual problem, but rather what MS is teaching me is that it is my approach and my attitude that make the world of difference. I have never been a kicking ass and taking names kind of woman. While that attitude has its place, it's not my general M.O. The attitude, I am not going to let MS win or I am not going to let MS take my life, just makes me tired. As I read blogs about MS and speak to people who have MS, I find the attitudes that I admire the most are those that highlight an approach that emphasizes joy, creativity, and emphasize how many choices there are towards any goal. The peer consultant I spoke to recently, for instance, shared that she had had a life-long dream to go to Egypt and since she would not be able to tolerate the heat (a symptom of MS), she had plans to go to Egypt during their winter when it was a mild 50 degrees. Same destination. Different route. Love it. It's all about your attitude, baby.

Whiteboards Are My Friend

2009-03-04T20:44:00.000-08:00

After talking at length with a friend who also has a chronic illness, I have begun to think carefully about how to handle the core practical issues with limited energy reserves. After several weeks of being in a serious funk, I am acutely aware again of how feeling ill, makes everything intensely harder. At my sickest in the spring, basic tasks including cooking and cleaning were difficult to impossible. As it turns out, even during the best of times, daily routines are not my strength. I don't practice a place for everything and everything in its place with any consistency. I forget appointments and routinely lose my wallet or my keys. And, while I am not a complete slob, my dishes stack up and overflow too often... So, now while I am feeling good and strong, I want to focus on creating better systems to stem the tide of my chaotic messiness.

Over the past few days, as I have surveyed, my home (step 1), I have begun to identify the chronic issues (step 2) in order to come up with a series of practical solutions (step 3).

But, perhaps most importantly, I have decided that the ultimate goal is not to create routines for routines sake, but rather to create a welcoming environment for me to come home to on a daily basis. Secondarily, the purpose is to create transparency for someone else to follow, if necessary.

I've begun to put systems in place to address the most chronic problems. In order to address my forgetfulness, I have bought huge whiteboards and placed them strategically. The whiteboard on the front of the fridge lists all of my doctors appointments, yoga sessions, gym schedule, etc. and this keeps them foremost in my mind. The whiteboard on the side of the fridge is where I list my menu for the week and write down any items I need to remember to pick up on my weekly grocery run. The whiteboard on the back of my front door is where I list my errands and must-do's. In addition, I placed a small metal basket near my front door, where I put items to be mailed, DVDs to be returned, etc.

Relatedly, next to my bed, I keep a pad of paper to write down my "map of the day" because my days always go better when I have mapped out the schedule for the day the night before.

Since gigantic binge cleaning is unrealistic and unsustainable now, I have put cleaning supplies in each area (saves me from having to trek supplies from one location to the next) and I have also placed an extra dishtray to hold the "overflow" of drying dishes, and I put sponge holders to easily store sponges in kitchen and bathroom. I bought an additional laundry basket, so I have two laundry baskets--one for colors, one for whites. Finally, I replaced all of my open trash cans with trash cans with lids only to keep things looking tidy.

This is phase one and it has been a most satisfying beginning.

Conversion.

2009-03-02T23:02:00.000-08:00

Tonight, I drove a few blocks over and after a brief, friendly chat with the graduate student, I bought the small, lovely, wooden table. Craigslist. $10.00. Done.

I put the table in my room to serve as a meditation table. On it, I put a small red candle and two beautiful strings of wooden prayer beads I made over the weekend. The final touch was a series of small wooden blocks each with a letter. The blocks, a bright mix-mash of letters, represent the idea that I don't have to say anything I need to God in a coherent fashion, even if it is an incoherent jumble, he/she will understand my needs.

The meditation table is the culmination of several weeks of one-on-one meetings with my wonderful yoga instructor. The individual sessions have been powerful. I have been able to grapple not only with all of the irrational questions that have been swirling around me (Did I cause this? Is this somehow my fault? Am I being punished?), but also the pressures I feel (to be positive, to stay open to the future, etc.).

The prayer beads and the meditation table are ways for me to respond to these questions and pressures by developing a daily practice. I want to have a daily practice that will keep my grounded even as I am petrified, sad, or, heaven forbid, going through the worst. The future possibilities loom large, so I am finding it impossible to "just stay open" or "let go and let god (he will provide)" or to believe that "god doesn't give you more than you can handle". I need something I can count on "even if...(fill in-the-blank of hard things)".

I have a profound desire to be comforted and a deep yearning to rest. The kind of deep, spacious, satisfying rest that comes from my best naps. So, together, we tried on phrases that I could use to convey the sense of the divine as ever-present. The practice is in times of fear, or sadness, or even in good times, to work my way bead by bead as I repeat the mantra. Each tradition is different--some might repeat "Om" or part of a bible passage. With her help, I made up my own mantra.

I like the tangible feel of the beads underneath my fingertips and in addition to the prayer bead strings, I made a beaded bracelet to wear on a daily basis. The dark brown, tan, and blond wooden beads hug my hand most satisfyingly.

I feel so grateful to have these sessions with her. Each time, I leave fully grounded because the knowing that I reach in each session comes from deep within and from all of me--body, mind, and spirit.

For me, the MS diagnosis, especially at the heels of several years of incredible and multiple heartbreak, has shaken me spiritually to the core. The practice guides me to a way to reconnect and to feel safe, protected, nurtured, and loved again.

2009-02-24T19:54:00.001-08:00

Oooo-oooh. I am excited! I just discovered that there is a website that is a compendium of MS websites called "Carnival of MS Bloggers'" that can be found at

http://carnivalofmsbloggers.blogspot.com

It's the motherload of blogging on MS all in one spot. Check it out!

Keeping A Medical Journal of your MS Experience

2009-02-24T07:39:00.000-08:00

At my last Dr.'s visit, months ago now, he asked me to describe what kind of double vision I had during my first (and currently only attack) during the spring. "Uhhh...", I responded. "I think it was side by side double vision, but only from one eye." Then, I corrected, "No, wait, actually I think it was one vision on top of the other". In the end, though, I could not remember with confidence this detail. Wasn't double vision, double vision? No, as it turned out. This small detail, had I been able to remember it accurately, would have told him something interesting and definitive about my case.

Now, after a period of not sleeping well, I am back to the importance of recording things in a medical journal of sorts. I bought a small version of one of my favorite types of journals over the weekend and now I need to start using it to record, among other things, my sleeping patterns. I have been waking up suddenly from deep sleep on a consistent basis around 3 p.m. or 4 p.m. in the morning and then I might wake and putter for a bit. Or, toss and turn until around 6 a.m., and then drift into a restless sleep from which I wake up worse for the wear.

My usual M.O. when there is any sort of problem is to begin solving it immediately, which I have discovered is at times based on a completely wrong understanding of the problem or how it works. The best example of this was in the spring when I had vertigo. Solution to vertigo? Lie down, of course! Rest, sleep! Through keeping a medical journal, though, I discovered that lying down was THE factor make my vertigo 10,000% worse. Unbelievable. Quite frankly, I wouldn't have believed it if I hadn't been tracking it. Instead, it turned out that rest was the key, but only resting sitting up with a "husband" pillow gently resting under my back.

I have been struggling a little bit with what do I record in my medical journal? What's important? What's unimportant? How do I set it up? Through a little bit of googling, I found that most recommend charting not only new symptoms and reactions (good and bad) to medication as well as doctor's recommendations and significant events such as hospitalizations, but also broader entries about stress, mood, etc. Here were encouraging words for the broad-style approach:

"As for personal sanity, I suggest writing down any thoughts which scare, frustrate, anger, or even inspire you. Get out anything which is hard to convey to others--undefinable symptoms, personal grief about the situation, or anger for being in such a predicament. No one has to read this masterpiece but you. Sometimes it feels better to vent on a piece of paper than to complain yet again to an innocent, loving, but frazzled loved one. Consider it your cheap, personal therapist."

To that, I say, "Amen!" Because it gives me the freedom to really broadly track my experience, especially now that some of the shock has worn off. It gives me a place to sort things through because even though it's hard for me not to say to myself, "But, nothing's happening. Your fine! What do you have to complain about?" (This is the cranky , impatient old-man-muppets-in-the balcony-me). Emotionally, so much is happening for me, and I need a safe place to truly grapple with it.

2009-01-27T14:09:00.000-08:00

Slow down, you move to fast, you've got to make the morning last...

Twoish weeks ago, as I reported here, I dropped my entire bag with my wallet onto a snowy corner (thankfully, I got it back). Then, I left my wallet in plain sight in my unlocked car overnight. Overnight! When a frantic morning search overturning the house yielded nothing, I headed out to the car only to find my bright red wallet nestled between the driver and passenger seats. A few days ago, I lost my keys--my entire set of keys--house keys, mailbox key, multiple important university office keys--by leaving them in my shopping cart. After frantically pacing, checking and rechecking pockets, and staring into my locked car to see if perhaps I had unwittingly left my keys in the car, I went back into the store and was relieved to retrieve the keys at the information counter.

Last night, I dropped my precious, life-line to the world cell phone into the toilet in one of the slow-movie moments where the phone is slips from my hand, as my mouth opens to in slow-mo to yell, "Ohhhhhhhnoooooo!" I dipped my hand into the toilet water (ew, ew, ew!) in one quick motion and rescued my phone. Miraculously, after a few sputtering fits and starts and several dropped calls, it proved to be unharmed. And, I, who dipped my hand into water with a live battery floating in it, was also unharmed and not electrocuted.

I am a frazzly, out-of-sorts mess. Quietly, I am losing my grip. I am panic-stricken, anxiously clutching and wheeling around, and personally inconveniencing myself.

These small, cumulative losses have gotten my attention. My life has gotten too busy, too noisy, too harried: too much multi-tasking, too much problem-solving, too much googling. I need large doses of quiet lay-a-bout time, stillness, silence. There's no miracle 2-week silent retreat in my future, but rather a series of days (several months worth of days even) with small breaks of deliberate, mindful, conscious moments of quiet. Time again, for the altar space I created in my early twenties: a box, a candle, a small picture and moments upon moments of soaking in the quiet did wonders for my spirit then and so I am drawing on that ever present resource and ritual again. Hold me. Cradle me. Replenish me.

2009-01-13T19:59:00.000-08:00

Tonight, I started my 8-week yoga class. As I sat on my mat in the gently lit, quiet room, slow inhale followed by slow exhale, I teared up. Sitting. Tears. Lying down. Tears. Raising my outstretched left leg. Tears. Flexing my foot. Tears. Breathing in. Tears. Breathing out. Tears. Through the whole class, I cried. I stretched, I moved, I breathed, I cried, and I just let my gentle little grasshopper-self be. In the midst of insurance headaches, treatment plan decisions, and reams of paperwork, I forget just how new this Multiple Sclerosis is. I have only known for sure since mid-November. Gentle little grasshopper.

My energy has been galvanized and geared towards putting together the treatment plan. I have been organized, pro-active, and positive.

Tonight, though, I had space to really just absorb the shock of this news. Just the fundamental reality of "Oohhhh" [I have Multiple Sclerosis].

Out of habit, I had been holding my breath. I have been bracing myself for the daily injections (which I haven't started yet). I have been downplaying any sadness. I don't want to be perceived as "too needy" or "too much" or "making a big deal out of nothing".

Of course, it's all true, all at the same time: I am organized, pro-active, and positive. I am also shocked. I am also so sad. Gentle, little tender grasshopper.

2009-01-12T08:56:00.001-08:00

Good Samaritans. Perhaps this was karmic payback for turning in a set of car keys I found last week on the ground outside the post office. Over the weekend, on my way to a friends, I was concentrating so hard on not falling on the icy snow or dropping the containers of potluck yumminess I was carrying, that I dropped my bag bag and didn't notice. I dropped my bag with my wallet. My wallet with my license. My wallet with my mac card. My wallet with my $60.00 gift card. Geesh.

And...I got. it. back. The bag, wallet, and all items perfectly intact. Amazingly, the woman who found it tracked me down via face book and I got the message before I even realized that I had lost the items. Just like that. Thank you.

2009-01-10T14:54:00.000-08:00

Restored. I had a tired-hangover today. No drinking involved, just the after effects of taking on too much yesterday. So, I dressed, tramped through the snow, and I spent the afternoon at my favorite coffee shop. No computer, no dissertation chapter or scholarly reading material. Instead, me a large pot of Citron tea (with 2 refill options) and three pleasure reading books including the Best Food Writing 2008. It was luverly.

Several hours later and I felt fully restored. Light. Lifted. Joyous.

What a difference a play-day and a good cup of tea make.

2009-01-10T08:49:00.000-08:00

Rookie mistake. Yesterday, I created a plan-for-the-day which helped me move smoothly through the day and stay on task. At the end of the day, though, I was exhausted. I can not emphasis enough how tired I was: worn out, depleted, frazzled, zonked-out. Plus, I've been battling a cold.

As I reviewed the day, however, what became clear is that the numero uno mistake I had made was simple. A rookie mistake. I did not eat well or often enough. I did not drink well or often enough. A nutritionist I saw once, noted that if you start the day out hungry, you will spend the day hungry. That's why breakfast is so crucial.

It's not that I didn't eat yesterday, I did. I just didn't eat well enough to really fuel myself and maintain my fuel throughout the day. I relied on lots of white flour items (bagel, sandwich bread) and sketchy protein (deli turkey). Sugary Chai tea has milk, but also a lot of sugar. I did drink some regular tea, too but not enough to make 8 glasses of water.

I did alright until 4 p.m. when I started to get really hungry. I had a snack (vending machine peanut butter crackers) and that staved off my hunger for a while. However, as I continued to work and power through, I got hungrier and hungrier. I skipped dinner in order to make a 7 p.m. social engagement. By 10 p.m. when I finally sat down for a proper dinner I was stark raving ravenous and so depleted.

(Then, to further exasperate the situation, I was so over-tired that I didn't go to bed until 2 p.m. -- yikes!)

So, today I was more attentive: large bowl of oatmeal with a diced up apple and a sprinkle of walnuts and brown sugar in soy milk for a late breakfast; a pot of citron tea and a biscotti at the coffee shop; a peanut butter sandwich with natural peanut butter and jam for a late lunch. And, tonight, I am going to try my hand at making a new veggies-galore Thai dish.

Half the trick, I am realizing, is to be attentive to my daily routine--as Natalie Goldberg would say, "Make positive effort for the good."

2008-12-20T10:22:00.000-08:00

#$%@%! I don't curse much, but there are times, like this morning when I opened up a claims denial for MRI from the insurance company that it is more than appropriate. I am kicking myself, hard, because it is my fault that I will have to dole out $2020. I got proactive when I scheduled the MRI, but in the process didn't follow all of the appropriate steps--mainly, getting a referral from Student Health Services for the MRI. It didn't even occur to me that I would need one because I am under the care of the neurologist for the MS and I had a referral from him. Unfortunately, not good enough! I will appeal the decision, but in the meantime #$%@%!

2008-12-14T18:33:00.000-08:00

I just called to say I love you.

This is a love letter to you, my dear, dear "village". I have felt your overwhelming support and it has truly made all the difference. I wanted to let you know that I have felt energized and deeply nourished by your tender, loving, care.

DM who accompanied me to my spinal tap, reassured me that these procedures always go better with love, and while I laid down for the mandatory 4-hour post-procedure resting period, read to me from Sara Water's luscious lesbian love story, Tipping the Velvet.

SS who came when I called and helped me figure out the next step after she found me lying on my bed, crying, unable to think clearly or stop throwing up.

JR, BK, MM, and SS who visited me in the hospital and sent e-mails on my behalf
K, B, and A who gave me rides to therapy and the grocery store when walking was a challenge.
MD who sent me the MS Workbook, the Collection of New Yorker cartoons, listened to me as I grappled with being so sick and suggested I keep an illness journal (which helped immensely)

LB who listened and said, "tell me about your anger"; LB who promised to come be with me if I needed that soon or in five years
SK who visited from NYC and lolled around with me for a whole weekend--eating good food, watching "candy," lazing around AND sent me a turkey hat (for T-day and funny, sweet note)
TP who drove out of her way and stopped by en route to Philadelphia to go out for Korean food and for breakfast, just to see me.
C whom spent oodles of time with me cooking meals including Thai food, taking silly pictures of squash on our heads, and making me laugh, and sending me e-hugs.
EK who organized my birthday, contacted all of my friends, and sent me luscious Zingerman scones made from cream, butter, and sugar.
SC who knows how much I love reading memoirs and how inspired I have always been by Natalie Goldberg and sent me an autographed copy of Goldberg's memoir writing book.
KB who gave me a brochure on really neat, useful MS materials including yoga, etc.
APC who embodies my own spirit for cooking and helped me cook up a post T-day storm--creamed cauliflower, pan-seared chicken with sage butter, oven-roasted potatoes dressed with lemon juice, baguettes with fresh pesto and goat cheese.

SS who went with me to the follow-up appointment and heard the Dr. say, "Yes, you have MS" and went to lunch with me afterwards.
S who sent me links to website like passive-agressive notes.com to make me laugh and offered to bring me soup and the entire collection of Freaks and Geeks.
EK who housed and fed me while I was in Philadelphia and came with me to my 2nd opinion appointment.
O who gave me wonderful poetry books on the body and spent a soothing, delightful afternoon hanging out with me.
SW who talks to me often, is a wonderful conversationalist, and sent me a great book on a spirited, adventurous chicken!
RB who sent me a fun, new food memoir.
P who put me into contact with a friend who has MS and is on the drug I plan to go on.
To everyone who called, e-mailed, asked me how I was doing and wanted to hear about my life.

Thank you. Thank you. Thank you. I have felt blessed, fortunate, and loved by each and every one of you.

2008-12-12T14:06:00.000-08:00

My trip to Philadelphia was satisfying and nourishing. In a mere 48 hours, I packed it in. I saw several dear friends, I ate my favorite Thai dish, Evil Jungle Princess, and later a divinely tart raspberry sour at the Bubble House. I soaked in the noise (incessant honking, construction clatter, the hum of conversation) and the people (the rent-a-cop directing traffic, the harried waitress, the throngs of hospital workers and college students) and the sights (lunch carts, thirtieth street station, city holiday lights). In the midst of the pulsing, throbbing city, I felt like some comic or cartoon book character, sucking in the energy to renew my own strength. As I drove out of the city after my time in Philadelphia and zoomed down 76 west in a mad rush of four-lanes-in-one-direction-city-traffic, I felt renewed through connecting with the city. And, more importantly, loved and reconnected by sharing some time with my friends whom I love and don't get to see nearly often enough.

Moreover, the visit with Dr. Wu at the MS Center, was everything I hoped it would be. In the waiting room, I swept up a gazillion MS pamphlets on Yoga, medicinal treatment, etc. Then, when I met with Dr. Wu, I was reassured by his calm, interested manner. He was a good listener, he asked lots of questions and answered all of mine; he laughed at my jokes and made his own. Most importantly, the consultation was thorough. He educated me on all of the medicines, confirmed the diagnosis, reviewed my medical history, and performed a series of neurological tests. He affirmed that I would need to go on medication, but he was more even-handed in his recommendation--suggesting that any of the medicines might make a good choice; it was up to me to decide which risks and side effects I wanted to take on.

In terms of medication, I still haven't decided on which one I will go on. Do I want to deal with the flu-like symptoms of the interferons and potential liver damage or do I want to deal with the potential, but rare IPIR (instant post injection reaction) that feels like a heart attack? I'm not sure.

Yet, I feel light, less preoccupied and much more available, since I have returned. The whole process: tuning into my considerable fear, making plans A-E, doing the footwork, has been so important and crucial. Empowering.

2008-12-07T05:14:00.000-08:00

Last night, I shoved Dave Chapelle's Block Party into my dvd player, pressed play, and laughed, vibed, and grooved for two hours straight. I felt light and light-hearted. Once again, I've proved my motto: Feeling better is just about feeling better [not necessarily about anything actually getting better].

When I was at my sickest in the spring--it was the silliest, most content-free media that gave me the most comfort. I've never been a Will Ferrell fan, but I laughed hysterically while watching Blades of Glory--the retro hairdos, the glam costumes, the outrageous physical comedy. I reconnected with my childhood through a link to the on-line Sesame Street video sent to me by a friend; I watched Cookie Monster sing about the importance of eating vegetables and chuckled. I watched the skit of The Count who returns to the castle with his date. What did you do on your date, count's mother asks. "We counted!" replies the count with such disarming glee, I laughed all the way through his song about counting.

It's true that I am best known for watching documentaries of intractable social problems, and having the audacity to consider this "a break" or "fun". Now, though, I have cued up my netflix with real fun: silly romantic comedies, muppets movies, and episodes of the office are all on cue.

2008-12-05T09:40:00.000-08:00

If I were to write my memoir, I would use my relationship to language as a persistent narrative thread. It's through language that I remember my experiences: The tantrum I threw when learning how to read was not instantaneous. The hilarious pencil scribblings in my first grade diary. My first words in German (I went to elementary school in Germany). More recently, my M.A. degree in poetry, my poetry manuscript, Cargo, and now earning my Ph.D.

The first inkling, though, that something might be wrong started a few years ago when I began to note that repeatedly I was having problems with language, little tiny cognitive difficulties. So mild and small and yet I noticed. It's like going into storage retrieval for a word and not being able to retrieve it or coming up with the wrong one. I keep calling an acquaintance Saul, not Sal. Recently, I meant to type vitamin C and typed Vitamin See. Small, innocuous and yet I noticed. When this first began, I remember asking myself, "Is this an early sign of dementia or alzheimers?"

In my research, I have read that cognitive problems are the first signs of MS, they often show up before anything else.

I am keeping a journal of my symptoms. Right now, they are so small, so slight it seems silly to write them down. The tingling in my feet, a very slight feeling of them being asleep. Last week when I couldn't move three of my toes? At first, I thought I was exaggerating or misunderstanding my toes, but no, the next day when they were back to normal, I knew I had not imagined this brief impairment.

I notice these small glitches and track them, so I have them on record, but then I get back to the many blessings I feel because I feel good right now and terms of organizing treatment, being able to travel for a second opinion, and all that goes with it, that is so welcome.

2008-12-04T15:17:00.000-08:00

Yesterday, as a treat, I bought Deborah Madison's gorgeously illustrated and delectable cookbook, Vegetable Soups. Wild Rice Chowder. Spicy Chickpea and Tomato Soup. Summer Squash in Broth with Cilantro Salsa. Oh my! Just thumbing through her book gives me satisfaction. I'm already starting an ingredient list for this weekend's soup.

Then today, I bought a long string of white lights to hang across the built-in bookshelf in the living room, an small advent calendar, and one red candle. I looked for snowflakes to hang on the window and couldn't find any, but may make my own.

Now this is the me, I know and love and whom it gives me comfort to come back to. The me who is creative and grounded. The me who takes joy in simple pleasures.

For me, health is having a w-h-o-l-e l-i-f-e. Good work, rewarding play.

2008-12-03T16:09:00.001-08:00

For the last 48 hours, my head has been a swirl. All the voices of the last few weeks have converged until my head has vibrated loudly with a noisy buzz of all the well-meaning, yet overwhelming advice on alternative treatments, suggestions for holistic approaches, and rants against Western medicine and the pharmaceutical industry. I've listened and I've nodded. Where I have disagreed, I have held my tongue. Now, I need a different approach.

I think it's hard to understand how overwhelming charting a treatment course for MS is. There is so much conflicting advice and there is tons of downright quackery. Moreover, there are seas of paperwork and multiple insurance hurdles, complex emotions, and a troublesome, complex, overburdened healthcare system full of harried healthcare workers who do not have the time to really help me navigate this illness. Add in all the random, maybe even ill-informed advice on alternative treatments, not to mention the research it takes to sort through what alternative treatments might be helpful, and what I end up with is "overwhelmed soup."

Ooooffff.

Worse, still, somehow, amongst all the "have you tried..." and "you should really...." and "I would...", I have felt--as irrational as it is--blamed for this illness. Yuck.

Time to simplify.

Today, I plan to focus first and foremost on what I can do to take care of myself right now in this moment and assume that all the complex questions about treatment will resolve themselves in time.

2008-12-03T15:57:00.000-08:00

My victory has been short lived. This afternoon I realized that I had confused awesomely well-qualified Grant Liu with resident Greg Wu. Both are neurologists, but Greg Wu is still in training and not the experienced expert I had been hoping for; unfortunately, Dr. Liu only sees MS patients who are having trouble with their eyes. Back to the drawing board. At least now, I know what I am looking for and can re-double my efforts to search out someone I am comfortable with.

2008-12-01T09:02:00.000-08:00

Jackpot. Score. I spent the morning in a whirl of phone calls. Now, I have an appointment with a neurologist at the University of Pennsylvania's Multiple Sclerosis Center in Philadelphia. He specializes in MS. He graduated from Columbia; he had a fellowship at Harvard and, bonus, he was honored in Philadelphia Magazine's May 2002, 2004, 2005, 2006, 2007, and 2008 Top Docs issue and in Best Doctors in America 2003-2004, 2005-2006, 2007-2008. Woohee! I can not overstate how relieved I am. I have found what I am looking for: experience, expertise, excellence.

Although I have full confidence that my current neurologist has diagnosed me accurately, I don't have full confidence in his long-term care and treatment plan. As I have listened to my fears, done some more research, and tuned into my frustrations and growing doubts about my current care, I have realized: Oh. It's not a second opinion on the diagnosis that I need, it's a second opinion on the treatment. MS is a long-haul, long-term progressive disease, and it requires a doctor and treatment plan I can have confidence in.

Did I mention how relieved I am?

Ever since I made that appointment this morning, I have felt lifted. Yes. I feel good.

2008-11-30T10:40:00.000-08:00

I am freaked. Not about the diagnosis, but about the treatment. I have known from the beginning that treatment would present huge obstacles for me. Yet, I have felt fairly confident about the neurologist's recommendation, Copaxone. Yes, most definitely, I was scared about the daily injections; however, I knew I could get through them one baby-step at a time. But, since then, I have done a little digging, and I have learned more about an intense side effect reaction to Copaxone that includes difficulty breathing, chest pain, and a warm flush over the whole body. While I had read about this side effect initially in Copaxone literature, I felt reassured because it only happens to ten percent of all patients; I assumed that if I didn't have an initial bad reaction, I would be in the all-clear.

Most unfortunately, this not at all the case. In fact, a patient can experience this intense side effect at any point over the course of treatment. It could be the first injection, the twentieth, or the three-hundreth. Every MS blogger who experienced this reaction stressed how extremely scary the reaction was and emphasized how grateful they were that a family member was at home with them at the time. The reaction is so intense that it can be difficult to move, call for help, or use the phone. The reaction usually lasts 10-20 minutes and does not require medical treatment, but it is an intensely frightening set of minutes.

Now, I am not much into scaring the pants off myself by reading lots of frightening web material or by projecting what might happen. But, this information has seriously paused me because I need to take into consideration that I already struggle (and for the most part successfully manage) anxiety. Most importantly, I live alone, so I don't have anyone who can reassure me if this should happen.

I have not ruled out taking this medication, but I am using a strategy that has worked in other areas of my life, which is to brainstorm five possible plans and to see which one or combination of several possible answers make the most sense. So, I am seriously considering the following five possibilities:

Plan A: Go on Copaxone. Do nothing about the potential side effects; just see how it goes.

Plan B: Work with my therapist and other complementary healing practioners to create

strategies to manage the reaction in case it happens. Practice breathing, etc. Go on Copaxone.

Plan C: Go on Copaxone + practice breathing + discontinue immediately after first episode.

Plan D: Do not go on Copaxone. Insist on another medication.

Plan E: Get a second opinion on the medication.

Plan A is out, but plans B-E all make sense to make, so I will explore each of them fully.

This side effect reaction is terrifying because the fact that you're not dying is cold comfort when you're in the midst of a reaction that feels like you most definitely are.

2008-11-22T18:33:00.000-08:00

Packages keep arriving. First, the autoject device. Then, a small carrying bag, a cold compress, daily journal, and two magnets (one magnet for me to list the reasons I will take Copaxone, the other to chart the locations of my daily injections). Finally, a large spiral bound patient education booklet and glossy brochures on the benefits of medication.

It's been just ten days since I have been diagnosed with MS. Although I knew this was a possibility, I was stunned nonetheless. What has been hardest is to reconcile how great I have been feeling with the diagnosis. But, as the neurologist so cogently put it, "It is what it is. And, it's been what it's been."

Seeing my brain was cool, though. The neurologist pulled the brain scan up on the computer screen. He showed me layer, after layer of my brain from the base of my neck to my crown. I saw the three old lesions, and one, bright, shiny new spot.

I scheduled my flu and pneumonia shots; I requested the application paperwork for NORD, an organization that helps individuals cover the staggering cost of medication ($2,200/month); I spoke to the Copaxone staff several times; I called the Student Insurance office; I followed up on several referrals; I researched the medication and read up on the side effects.

I am stilling reeling; I am still trying to get my bearings.

2008-09-25T10:35:00.000-07:00

Down the Rabbit Hole...

During an insomniac night a night or so ago, I was tossing, turning, and obsessing. "What if... How will I... Oh, no... What will happen... Should I... Why didn't I think to..." and on and on...and on and on...

Trying to settle or quell run-away anxiety is a thankless, exhausting, depleting task. To say the least.

Anxiety, I've decided, is a rabbit. If I like, I can believe that catching the rabbit is possible and I can run fast and furious to chase the bunny. I can race across the field, trip, fall down the rabbit hole, and much like Alice in Wonderland, end up in a strange and terrifying dream world. Or, as I have been practicing this week, I can simply say to myself each time an anxiety-producing thought pops up, "DO NOT CHASE THE RABBIT".

After all, chasing the rabbit is, especially at first, seductive and intoxicating. I always whole-heartedly believe, every time, even though it has NEVER worked, that I can track down and stop my anxiety by chasing and then catching the anxiety. I say to myself, "You're mine, this time, rabbit!" Instead, the chase is endless, and I get winded, exhausted, dizzied, and overwhelmed. I lose track of time, goals, reason, sense, and myself.

Chasing doesn't work. Stopping the chase does. If I start wondering what's going in a relationship, or what will happen in the future, or...I simply stop myself and say firmly, "DO NOT CHASE THE RABBIT" and return to whatever I need to be doing right now. It's worked wonders.

Coasting, Cruising, or Getting Ready for Change

2008-08-18T19:40:00.001-07:00

Uh. A-hem! So, this image puts to shame A-L-L of my whining about needing to become more physically active. LOL.

I want to become more physically active, but I am intimidated and unsure of how to start. Or, that is, I have decided to participate in a 25 mile charity ride to benefit the Multiple Sclerosis society the weekend of June 18-19, 2009. I can ride 6 miles now. Learning how to ride 4x as much as I can ride now shouldn't be an issue, right? And, it's for a good cause!

Still, although those pesky little doubts emerge. What if I can't handle the terrain or there are too many hills? What if the weather is terrible for riding? What if I can't measure up to the other riders (everyone in the event pictures looks very sporty)? Is it really safe to train by myself (on lonely paths or if I, egads, fall).

My family wasn't a physically active family; we did not exercise as a family. I did love to bike, though, still do. And, I biked e-v-e-r-y-w-h-e-r-e with my little kid-pack of 10-12 year old friends. To the park, to the island for a picnic, to the swimming pool one town over.

Seems like it's time to channel that pre-teen spirit!

Which Way Am I Going?

2008-08-13T20:43:00.000-07:00

I had my follow-up appointment with the neurologist yesterday. Truthfully, I still do not know any more than I did three months ago when I had my attack. During that first episode, I had double-vision, three brain lesions, and my spinal tap results showed inflammation, so there is a decent chance I will ultimately be diagnosed with MS. My neurologist, though, careful and conservative doctor that he is, has cautioned me that he has been fooled before. More specifically, he has had patients who, mysteriously, only have one episode and never develop MS. Therefore, rather than rush to judgement, he prefers to wait another three months, until November, at which point we will have a second follow-up appointment and he will order an MRI. If the MRI shows more lesions (or, if prior to that I have a second episode), he will diagnose me. Although other neurologists might rush me onto medication (research has shown that the sooner medication is started, the better chance it has to alter the disease path), he wants to know for sure that it is MS before he suggests treatment, because the medication is daily, life-long, and toxic. I am reassured by his conservative approach.

At this point, I am feeling optimistic, energetic, and simply buoyed by several months without any symptoms. I am also feeling impatient, extremely impatient. I simply do not want to dwell on, agonize, or conjecture about what may or may not happen. I am feeling good, I have ALOT to do, and I simply want to get on with it!

My first and foremost immediate priority is finishing my dissertation. Moreover, I want to post my dating profile and I am starting a new position in two weeks. There is so much to look forward to.

In the mean time, I will amp up my self-care: adequate rest and naps; wholesome food; daily walks are all on my agenda."Gentle, little grasshopper," I tell myself, "More will be revealed soon."

2008-07-24T07:32:00.000-07:00

Part 1: Being "Here"

I never thought I'd be here. When I made the decision to move from Philadelphia to earn first my M.A. degree and then my Ph.D., I had made a bargain with myself. In exchange, for marooning myself in this small, predominately white, party-college-town, four hours north and four hours south from the nearest city or urban area, I would move back to Philadelphia as soon as I finished my comprehensive exams and write my dissertation from there. For a few years, I would trade the Philadelphia heat, the packed city streets, the glorious crowns of "sun hair" (natural hair, twisted and forming a crown) and all of my favorite spots including Broad Street, Fairmount Park, and Giovanni's Room for an opportunity to study African American literature. Since I would receive Philadelphia back in the trade, it seemed like a risk worth taking. From the get go, I conceptualized "my real life" as back in Philadelphia. Certainly, graduate school was a major stop, but it was also a detour; I couldn't wait to get back to the urban hub and my "real life". In the meantime, my partner and I would have a long-distance relationship and since I would travel back and forth between my new town and Philadelphia, I would "go home" regularly.

Fast forward several years: I finished my M.A., finished my Ph.D. coursework, created my comprehensive exam book list, and started to study for my comprehensive exams...

However, a few months before I took my comprehensive exams, my partner and I broke up and

suddenly I was forced to rethink my path, and my course. Unfortunately, this loss was followed by another major relationship loss, a falling out with a family member, and then this stunning possibility about my health.

I find myself still "here." Here, in this city. Here, still working on Chapter 1 and not having made much progress since I started. Here, feeling the disappointment, bitterness, and grief of the loss of my partner and the major family relationship. Here, feeling frustrated, out of synch, and emotionally distant from my dissertation.

Now, I am at a critical juncture. I am very fortunate to have gotten my funding extended for an additional year, so finishing my dissertation within this school year is paramount unless I want to face a host of unpleasant consequences including loss of health care, uncertain job prospects and general misery. Or, I could decide now, to re-chart my course entirely and decide not to earn my Ph.D. after all. Not going forward with my Ph.D. is a choice that I don't even want to consider: It fills me with terror. Yet, I also am recognizing the importance of really choosing, or, I believe, I will continue to remain as incredibly mired and stuck as I have been. I need to at least consider not finishing, so I can reaffirm my real reasons for finishing. And, that, is the paradox of graduate school ... and life.

(To be continued...)

The Month of Sweet and Savory Salsas

2008-06-30T11:00:00.000-07:00

July. Heat. Porches. Late afternoon thunder showers. Weekly Farmer's Market. Tomatoes. Strawberries. Raspberries. Peaches. Fresh Herbs.

I am declaring July the month of SALSAs. I already make a mean traditional salsa--finely or coarsely chopped tomatoes, onions, avocado, cilantro, and jalapenos tossed with lime juice and salt, but I want to branch out. More specifically, I want to experiment with both sweet and savory salsa by having each salsa highlight both a main ingredient and an herb. Tentatively, I am thinking:

*Peach salsa with finely chopped red onion, ginger and/or mint and lime juice.

*Green olives, black olives, and caper salsa with freshly chopped rosemary and maybe thyme.

*Roasted pepper and tomato salsa with cilantro and basil.

*Cherry salsa with green onions and adobe chiles.

*Roasted beet salsa tossed in dill and a tiny bit of balsamic vinegar.

Paired with the right kind of excellent cheese, melted in a quesadilla. Oh, my!

This quest is as much about the process, as the end result of deliciousness and delectability. The weekly trip to the farmer's market, the conversation with the farmers, the picking out of just the right fresh ingredients, the carrying gently home, the chopping, combining, tasting, and testing.

Stay tuned for a mouth-watering report!

Put the Book Down and Back Away (Part 1)

2008-06-14T19:13:00.000-07:00

The advances that have been made in diagnosing and treating MS in the last 30 years alone, are heartening and impressive. Yet, in so many ways, MS remains a mystery and has generated many theories of how to best and most successfully manage the disease. The sheer volume written on, for example, possible dietary solutions, overwhelmed me. Moreover, the dietary principles are often not just contradictory, but also controversial and based on personal testimony, not scientific studies. To name just a few of the options: federal nutritional guidelines, anti-inflammatory diet, and the gluten free diet.

My initial reaction while reading a book on the gluten free diet, was panic. I felt an immediate urge to rush frantically around to toss the loaf fresh farmer's market whole wheat bread, the stack of tortillas, and the package English muffins. I felt the franticness of imminent, immediate, and unthought-out radical change.

Ultimately, though, I resorted to a motto that I had created to respond to self-help induced panic of any sort: Put the book down and step away.

I am not ready for radical change just yet.

I do know that I make many healthy choices. For instance, a snapshot of my meals on Saturday included for breakfast a fresh fruit salad with a dollop of yogurt, for lunch a veggie burger on a bun with avocado, blue cheese, and veggies, and for dinner a vibrant black bean salad with onions, tomatoes, corn, and beets seasoned with lime juice, cilantro, and a jalepeno over a bed of mixed spring greens.

If this were the whole story, I would be good to go.

Unfortunately, my complete dietary picture on Saturday also included: a giant piece of chocolate cake (split with a friend); a 16 ounce soy caramel mocha latte, a 24 ounce soda, 1 Stouffer's french bread frozen pizza, splitting a 32 ounce soda with a friend at the movies, and finally, as a late night snack, a small yet decadent brownie and a tall glass of soy milk.

Since I struggle with a serious and significant weight issue, which complicates any dietary goals I might set to handle the MS, my first and most sensible step is, I think, to observe my current patterns and commit to small changes first. More specifically, I am a big believer in a strategy I developed a few years ago called, to the left. Since it as as easy for me to reach for whole wheat pasta as it is for white, I reasoned, why not choose whole wheat?

This strategy has worked well at the super market, where I can, and do, choose the healthier option. Yet, I find in certain settings and for certain motivations, I do not resist temptation. I often make choices based on convenience, a desire for comfort, to combat stress, and as a way to socialize.

There are, of course, many to the left options that I could utilize including: downsize by one or more portion sizes, switch to calorie-free beverages; eat mini-meals instead of snacks In terms of stress, Moreover, I could choose to handle my stress in the following to-the left ways: take regular stretch breaks, stop working while I am ahead, plan a regular daily play and self-nourishing activity.

I am not ready just yet to commit to a course of action, even if they are baby steps, but I have strategies in place to choose from when I am ready.

Sanctuary

2008-06-13T21:40:00.000-07:00

In our session few weeks ago, when my therapist pushed me to identify how I was feeling about the implications of a potential diagnosis, I bristled. That's how I first became aware of how angry I was to be facing this potential diagnosis.

This potential diagnosis has triggered a spiritual crisis for me. Yet, in the process, I realized that who I most want to share my anger, confusion, and grief with is God herself. Although I long struggled not to feel that anger is sinful, or that expressing my anger to God is blasphemy, I am taking the risk now to bring my whole, imperfect, emotional self to God himself because:

In the face of this crisis, I need sanctuary.

In the face of this crisis, I need to be comforted.

In the face of this crisis, I need to be held.

In the face of this crisis, I need to express all of my anger.

In the face of this crisis, I need sanctuary.

I have begun to think about both the traditional and non-traditional ways I might find the sanctuary I am seeking. I found a prayer meeting at the local LGBT friendly St. Andrews Episcopal Church that meets daily. I have downloaded the directions and bought the yarn for a prayer shawl, one for myself. I plan to take regular walks--seeing the splendor of unruly wild grapevines and the prickly tangles of raspberry bushes, and the vast green tree-line are also a sanctuary for me.

In addition to these more grand sanctuaries, I have also begun to think about smaller, more subtle ways to encourage myself to find sanctuary--peace, serenity, quietude by: establishing wellness routines (flossing, going to bed at a decent hour, eating breakfast); spending a few minutes each day being quiet; purposefully unplugging from my computer and phone...

Yet, I don't want to forget that a genuine sanctuary makes room for all of me and therefore I need to find meaningful ways to express my anger. Just the idea of letting my anger show is unnerving. But, I know, I need to find visible and visceral ways for show my anger--to be truly vulnerable in the face of this turbulence. Even thought it might be challenging and certainly unfamiliar, I believe it is important and necessary.

Water Therapy

2008-06-13T09:28:00.000-07:00

Yes, that baby is me! To this day, each time I am at the ocean, on the lake or river, or even just near a pond, I feel absolutely giddy and gleeful.

This weekend, at the outdoor pool, as I splashed, floated, swam leisurely around the pool under the hot, cloudless sky, the blues I had been experiencing throughout the weekend--a deep variegated cobalt, indigo, dark blue sadness, lifted.

Floating in the pool gave me visceral reminder of just how good I feel in water. Moreover, since MS is a disease that is managed, but certainly not cured, all of the literature I have read stresses the importance of regular exercise to help manage the disease and the depression that often accompanies chronic illness. So, this weekend in the pool, I made several summer-time resolutions, which will serve me in good stead regardless of whether I ultimately have MS or not. I decided to sign up for the water aerobics class and to register for swimming lessons, too.

On Monday, I pushed through all of my internal reservations, and participated in my first water running class. Much to my surprise and delight, I. loved. it. Since, I don't even run for the bus, I had imagined the class would be dreadful and tedious. To my utter delight, I couldn't have been more wrong. In the water, I am weightless, buoyed up by the water and because class is held in the deep pool, my feet didn't even touch bottom. Instead, I pumped my arms and my legs in a running motion first more slowly for several pool-lengths of warm up and then fast, faster, fastest for an energizing workout. The height of the class were interval training and a series of relay races. I certainly got a work out. Yet, because of the games, it was more playful and interactive than just a regular water aerobics class.

The water aerobics class I took on Wednesday, was a challenging workout, too. My muscles have that pleasant ache that confirm that I have indeed worked out and the past few nights I have been sleeping solidly for the first time in weeks. My next step is to advance my swimming skills by taking individual lessons in in order to learn not only how to crawl, butterfly, but also how to execute that sweet underwater turn that allows a swimmer to reverse and complete a lap.

Still, it is important for me, and, for that matter anyone with a chronic illness, to remember that managing a (potential) disease, is not curing it. On Tuesday, for example, even after the elation the night before of water running, my blues returned and lingered throughout the day. I let it lay there. I was tender with myself throughout my sadness. I did not push myself to just get over it or berate myself for feeling better the night before and now feeling sad again. Instead, I acknowledged the depth of my sadness and yet tried my best to maintain my work schedule.

I appreciated The National MS Society reminder that "wellness is a dynamic state of physical, emotional, spiritual, and social well-being that can be achieved even in the presence of a chronic illness or disability." For example, in response to my sadness, by Tuesday evening, I had had a good cry, shared openly with a friend about my sadness, and had a deeply satisfying phone conversation with a long-last friend. By the end of Tuesday, my sadness had again eased and lifted.

Over the last few weeks as I have gotten more in touch with my emotions--after an initial period of pure jubilation over regaining my mobility-- I have been immensely angry, sad, grieved, and heartbroken over this possibility. What helps me most, in the face of the reality of these feelings and experiences, is to reach out. And, because I value conversation--a genuine give and take--and because I gain so much by the sharing and building community in the face of the toughest parts of life, I'll invite the other person into the conversation by asking questions such as: Have you ever experienced this kind of sadness? How did you cope?

A burdened shared is a burdened halved. True, indeed.

The Waiting Period

2008-06-12T00:13:00.000-07:00

Originally, I had decided to stash the potential of an MS diagnosis in a folder labeled "August 12th," the date of my next neurology appointment. "Why panic?" I asked myself. "When I don't know for sure yet?"

Yet, of course, the limbo of waiting for a potentially life-altering diagnosis is, in itself, scary and terrifying.

In fact, since there is no single test for MS and, by definition, it requires two episodes to be officially diagnosed, almost all people eventually diagnosed with MS go through a waiting period. Fortunately, unlike years ago when people sometimes waited years, often suffering increasingly debilitating attacks before being officially diagnosed, currently there are clear diagnostic standards, the McDonald criteria, that neurologists rely on to make a diagnosis. So, the next step is to wait to see if I have a second attack. It's certainly possible to only have one attack, called Clinically Isolated Syndrome, without ever developing full-blown MS.

And hence, my dilemma, to what extent do I acknowledge and address an illness that I might not even have? Yet, if I do have it, wouldn't I want to use this time to "prepare"?

As I have grappled with these questions, I was reminded of an anecdote from the feminist therapist and author Harriet Lerner. On a team-building white water rafting trip, Lerner, who was terrified, repeatedly voiced her anxiety until she realized it was not only escalating her own anxiety and interfering with her ability to work with her team, but raising her team's anxieties, too. So, she pulled aside one of her very good friends, and shared exactly how petrified she really was. She even gave him instructions on what to do and who to contact (her husband and two sons) in case of her death. Once she had addressed her fear and anxiety, Lerner was able to make a conscious decision to tap into her competence during the remainder of the trip and therefore was able to become a fully functioning, skillful member of her team. Brilliant, sanity-saving strategy, indeed!

For my part, during this emotionally and spiritually turbulent time, I have decided to follow Lerner's lead. I have shared with good friends and God, too, exactly how afraid I really am, and, truthfully, also how angry and at times sad I am, and I will continue to do so as necessary. At the same time, I am tapping into my core competence, to handle this potential diagnosis. On a practical level, this has meant copying my house key and giving it to friends, programming my Dr.'s information into my phone, and doing a little bit of reading (but not too much) on MS. As a dear friend, whose daughter suffers from MS, advised me, "Be informed, but not alarmed".

Additionally, I have made an intention to enjoy my summer--I live in a visually stunning area--a small town surrounded by dark green mountains--and I simply do not want to miss out on all that the summer here has to offer: back yard barbecues, visits to the outdoor pool, summer bike rides, the Farmer's Market, and late summer nights. So, while I wait, I plan to dig into my summer with gusto.

Re-Assessing, Re-Stocking, and Heading For New Territory

2008-06-11T12:33:00.000-07:00

It's true. These last few years, as I have entered my thirties and life has thrown me around, I have become a bit bitter, cynical even. But, the most recent crisis, three weeks of a "neurological episode" that severely impacted my mobility--I had difficulty seeing, walking, and thinking--jolted me. The potential of an eventual MS diagnosis makes me both deeply grateful for what I have and poignantly aware of how precious my mobility is to me.

What became so clear to me during my episode is how quickly a chronic illness can shrink your world. And, so, I decided to embrace all the modes of "travel"--reading, cooking, sight-seeing, traveling, listening to music--that enrich my life daily in an intentional way through this blog. It's a way for me: to actively engage in activities I enjoy, to affirm my zest for life, to strengthen my sense of community, and to live in the questions. In the process, I will interweave my daily reflections with a discussion of the books I am reading, the meals I am cooking, and the traveling I am doing.

Perhaps most importantly, I want to use this blog to purposefully embrace the spirit of mobility--joy, freedom, meaning, playfulness, curiosity, integrity...and, of course, the pleasure of excellent company.

Andale! Vale!