Know What "Yes!" Feels Like

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!

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.

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

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!

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

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

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

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

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

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

"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. 

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)

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

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

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

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.

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. 

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

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. 

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.  

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. 

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.      

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.