#$%@%! 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 $2020. I got proactive when I scheduled the MRI, but in the process didn't follow all of the appropriate steps--mainly, getting a referral from Student Health Services for the MRI. It didn't even occur to me that I would need one because I am under the care of the neurologist for the MS and I had a referral from him. Unfortunately, not good enough! I will appeal the decision, but in the meantime #$%@%! 

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. 

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. 

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. 

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.

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.  

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. 

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. 

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. 

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. 

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. 

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

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?

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."

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

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)

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

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

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

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

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!