Stick Semantics

Until January of 2008 no one could tell there was anything wrong with me. Every day I left my purple house and crossed Park Street to stand on the Watchung Avenue platform and take the Midtown Direct to NYC. At Penn Station I walked up the stairs and then a few blocks, then down the stairs and up the stairs and down the stairs, and up the stairs and one block to my office. And while this was a challenge, it was something I was proud to be able to do. I have had Multiple Sclerosis since my 20th birthday. Walking and stair climbing has always been an effort for me. MS has robbed me of balance, coordination and stamina. Yet in spite of this no one would have noticed that I was different from any of the hundreds of commuters that move as one.

When dizziness was added to my MS symptom buffet, everything changed. With an increased unsteadiness even the most basic things were not a given and the commute was more like an outward-bound adventure. But I loved it; being part of this mass of silent people moving in unison toward their destination. I knew if I wanted to continue I would need something to ground me. But what were my options? A cane? A cane means old, disabled, infirmed. I’m young. A cane just doesn’t fit.

So I didn’t get a cane, I got a walking stick. Don’t get me wrong – it’s a cane, but I call it a walking stick.  So I got it home and tried it out, and the internal debate began. Could I make this part of who I am?

I was just about to turn 40 and though I had been living with a different-ability for two decades, I didn’t announce it to every one I passed. A cane, excuse me, a walking stick would do that. So I pushed myself like a kindergartener on the first day of school. Forcing myself to be outed, to show the world who I really am.

What I didn’t know at that time was how empowering this decision would be. I thought that by using this walking assistant I was admitting defeat. As if I was making a statement to the world that MS has me in some way. But what happened was really quite the opposite. The stick has given me power. With this visual recognition I brought out the best in the people around me, who treated me with concern. They recognized I had more to contend with than the average commuter. And with that, I learned how to walk proudly while carrying my big stick.

~This short essay ran in the Montclair Times during MS awareness month.. that being now!

Loss(t)

I’ve had MS for 21 years, 6 months, 16 days, 19 hours and an undetermined number of minutes.  Of course this was only accurate for the brief moment when I typed it and now the number has changed – as has my experience with loss.

As the words Multiple Sclerosis rolled off my diagnosing doctor’s lips, my fear lingered on what I would lose. It was all I could hear. From that moment on my future would be dictated by the loss de jour. With no menu-board telling me what I could expect to be served, I flinched not wanting to look forward. I began my 20s with undetermined, inevitable loss. And though my actual symptoms were slow to start… the loss (of security, confidence, constancy, steadiness, reliability, uniformity, evenness, permanence, solidity, stability, sure-ness) leaves me lost.

I lost my best friend 1 month, 9 days, 18 hours and an undetermined number of minutes ago, and that number is constantly changing. In all of my years of living with loss, nothing could prepare me to cope with losing her. It is a wound that will never heal. Like the scarring on my brain that doesn’t allow me to stand too long or walk too far, no neurons will compensate for the ones that have died. And while I will go on with my life, I have to relearn who I am without her. And I flinch not wanting to look forward.

My loss goes beyond physical limitations or the uncertainty I must embrace to keep going. My loss lives in the fear that I can’t be me because of all that isn’t here.

***

Life isn’t static. Everyday we all have new input, new experiences, new reactions and new understandings. For me, one day can bring multiple levels of change. Like the other day, I thought I would run an errand. We needed some miscellaneous items from the town stationary store and my daughter had some money burning a hole in her pocket that she felt sure would be much happier in the local toy store cash register. So we set off and I dismissed the question marks that always fill my head when I leave the house without Keith. Of course I can go pickup a few things with my daughter. What is more basic than a mom running an errand? Unfortunately my apprehension was validated. After finding a parking spot too far away, walking to the stationary store and the toy store around the corner, I was exhausted. I could barely stand up as Madeline raced around trying to decide what her spending money would allow her to take home. I counted down the minutes I had left on my feet and alerted her to our pending departure. In a quick moment she made her decision and purchased a bear made entirely out of recycled plastic bottles. But as we started to leave she had changed her mind and wanted to return it. I’m not sure how I would have handled it, had I had the energy to make a reasonable decision. All I knew was that if we didn’t leave the store soon, I wouldn’t make it back to the car. After explaining that I couldn’t stand anymore, an angry Madeline left, ran ahead of me and out of sight. Unacceptable behavior under any circumstances – but it left me stranded in inadequacy. I was unable to be a mom on the most basic level. Frustrated and deflated, I limped toward the car, silenced by the distance and my lack of ability.

Of course she knows that running away from me is wrong. Was she just the petulant child storming off because she didn’t get what she wanted?  Or was she running from the reality of my MS and how it impacts our everyday.

At home that night, Keith and I were discussing how we would talk with her the next day, and I was feeling lost and un-able on so many levels. It is so hard to be forced to look at the basic things I can’t do. It knocks me off of the optimistic determination that carries me on most days. And I’m flailing as I search desperately for a foot-hold.

Later, I im’d a friend venting my frustration and adding to my list of witnesses. He told me of when he was teaching his kids the importance of holding his hand. Saying he needs to hold their hand so that he doesn’t get lost. And if they separated, they would grab his hand and say “Daddy, you don’t want to get lost.” It wasn’t too far a leap to recognize that Madeline and I both need each other to be safe in the world and stable on the ground. Reminding me of the very recent memory of two dear friends who came to rely on each other in just that way.

This is the loss I feared, 21 years ago at my diagnosis. I left that toy store unable to keep my daughter safe. Watching her do what I can’t do, out of the realm of my protective arms. She, running from my MS, masked by anger and frustration about a bear, and I slowly follow, wondering who I am. And just now, as I type this on what would have been Linda’s 43rd birthday, I find her… I know what she would have said had she been here. And I know that her presence will always help me- be found.

A pregnant pause…

Deciding to have a baby when you are living with MS can be a tough decision. Or not. If you’re like me, you know you want a baby under any circumstance. Whatever the case may be, I hope that by sharing my story, I can provide what I longed for when my husband and I were making our plans; that being a positive experience to support the decision we had already made. While everyone has a completely unique and unpredictable  MS path and all-of-the-above is true for how any pregnancy might play-out, each telling offers an inside-line of possibilities.  Here’s mine.

Everything about planning to have a first baby is filled with question marks even without MS. How long will it take to conceive? (How to take the reckless bliss out of marital recreation) What will being pregnant be like? (Puking, constantly pee-ing, and walking like Frankenstein’s monster….)  Will it be a smooth delivery? (How the HECK are they gonna get that baby out of me!)  and How will it change our lives? (Will we ever have reckless bliss again?) When MS is part of the equation, the question marks are bigger, bolder and have potentially long term implications. What about all of the meds that make my life livable everyday? If I don’t have bladder control now….? Will my MS be worse after I have the baby?  Will I be able to care for a new born? a toddler?  a teenager…? Okay, wait a minute, no one should be thinking about a teenager when considering to have a baby…. although it may have a significant impact on rising populations! ☺

The year was 2000, and there were a few things I had decided already about how my pregnancy would go – I would stop my Copaxone while trying to conceive- although the prospect scared the *!#@ out of me. At that point I had been on it for 7 years and it was doing remarkable things to improve my everyday with MS. There wasn’t much that was known about the effects of the drug on pregnancy and I wasn’t taking any risks. Adding to my comfort in this decision was that once I got pregnant I would likely feel much better than I do normally. It is known that the immune system is naturally suppressed during pregnancy to allow for a foreign entity (ie. the baby) to coexist inside you.  And so, the said immune system no longer randomly attacks the precious myelin that keeps our neurons functioning healthy! (note to self: if true, explore surrogate motherhood as vocation!)

I was afraid of what my MS would look like without Copaxone or the benefits of a pregnancy-based suppressed immune system. So it was the “in-between time” that had me worried. With the over-speculation and hyper-assessing I take to anything; I read, and wrote and thought. And talked. And talked. And talked.  For me, rehashing and reconsidering any and all possibilities gave me a sense of control over any situation. Silly mortal!

So I stopped the Copaxone, (My neuro told me it would take no more than a week for it to be totally out of my system) and immediately starting working the ovulation predictors. (Say goodbye to spontaneity)  I wasn’t going to waste a moment. I knew that the quicker I got pregnant the better.  It’s a crazy game trying to enjoy the process (if you will) with so much riding on it! (if you will!) Luckily it only took us three months to conceive and my health didn’t falter.  Check.

What came afterward was all good. I had a wonderful time being pregnant. Okay, maybe that’s slightly sugar-coated. But the truth is as they predicted my immune system took a break. And all my cells came together in their pregnant bliss and rejoiced! My energy was up and I could walk farther than ever. Of course I dealt with the normal joys of pregnancy: nausea, headaches, heartburn and the inevitable transition in to the incredibly enlarging woman. But all paled in comparison to the normal MS symptoms that I had become so accustomed to.  What really tickled me at the time was that I was treated in such a way that would be very helpful in my every day life with MS. I was offered a seat wherever I went and always made aware of the closest bathroom. We went to see Chicago on Broadway and I was escorted to a super-secret bathroom in the mezzanine. Wow! I immediately began to consider ways I could develop a prosthetic pregnancy suit for just those scenarios in the future. Think of the possibilities!

When the big day came I delivered Madeline after 6 hours of labor, 2 of which were “hard” then ultimately cushioned with the once-removed feeling of an epidural. (Someone is having a baby here… though I’m not clear on who! ☺)

Then we got home and wasn’t so easy. Recovering from delivery and having to learn how to do EVERYTHING is challenging for everyone. The breast-feeding, the diapering, the clothing, the bathing, the burping, the sleeping or rather the not sleeping, all created a veritable tornado of learning and uncertainty. Luckily it was cemented together with the unbelievable love you can only know in your baby.  Keith and I spent all day and night in that first week marveling at our perfect little person. Nothing could have prepared us for that emotional magnitude. This couldn’t possibly be what everyone else is doing!

And while I was coping with post-partum depression and fear I would not be able to physically do everything a new baby required, we found the support we needed and tried to be patient that the rest would come.

16 days later was 9/11.
Whatever feeling of parental mastery we had gained shriveled in our fear of the world we brought sweet Madeline into.

• • •

When all is said and done my greatest hurdle was emotional. I never had the MS relapse that was often sited in the “literature”. And though I had challenges that were uniquely MS, none were above and beyond my ability to cope at that time. The depression that began after Madeline was born, merged with the anxiety that we all felt after that September day.  And though my pharmaceutical cocktail continues to include ingredients that address these issues, I can’t help to wonder what that graph would have looked like had those two events been further on the timeline.

When I began this entry, I thought it would be an opportunity to share my experience with pregnancy and childbirth from an MS perspective. What I hadn’t realized was that irrevocably intertwined in my (and Keith’s) most precious life experience is the residual impact of that tragic day.  It’s impossible to think of one without the other and so much sadness and resentment surrounds that pairing.

If anyone reading has questions about having a baby with MS — please feel free to contact me and ask the details that didn’t make it into this final version. Right now, I’m carried away in the other place this writing took me, trying to weed out the memories I want to magnify and lose those I long to forget.

A letter to Dr. Jill Bolte Taylor

Dear Jill,

I have just finished reading your book, My Stroke of Insight, and I am so completely moved by your experience. While it is true that any person with a brain would be taken in by your story, my relationship with my brain has been a challenging one and thus it is that much more a significant read for me. I have just celebrated my 20th anniversary with Multiple Sclerosis and your book has driven me to revisit my relationship with said brain.

Over the years my brain has been many things. My brain was labeled average in a lacking school system that didn’t recognize different learning styles. As I entered college and tried to see what it was made of, I was diagnosed with this unpredictable disease. From an early age I learned what I can’t or won’t be able to do.

But my brain ultimately came through with a positive attitude that has served me well in spite of life’s pitfalls. Experiencing my version of MS, I grew stronger in outlook and my brain and I lived happily until the new next episode hit and I feared I could not handle it. But we became partners again as my right hemisphere gave me courage and my left side joined in with a plan to manage the loss. This sequence happened repeatedly as I lost abilities or gained symptoms. Ultimately my strength of character (right hemisphere?) came through and served my brain well.

The relationship with my brain remained stable as long as I could handle the blows that my immune system was dealing me. When symptoms arose I doubted my ability to incorporate them in to my daily routine. Depending on the symptom, the arc of acceptance varied in size and length. Pain was one that was particularly hard to handle. Luckily my brain found a way to make it more manageable… and eventually a new circuitry was established with which I could cope. So you see the rollercoaster ride my brain and I have been on these 20 years.

What I realized in reading your book is that my brain deserves applause for the cellular genius that it exhibits everyday. My brain isn’t my enemy… it’s a victim of these unwarranted attacks from my confused immune system. It needs the encouragement and rewards that you have illustrated in your story. There are many symptoms for which my brain has found a new neural network – giving me back abilities I’ve lost. For the symptoms that are constant I realize now that I can rally behind my brain in an encouraging way.

Your experience is beyond the comprehension of most people. To have a tabla rasa, to rebuild from 0 is more than most of us can begin to imagine. Your telling of that experience is awe-inspiring. But more importantly you have shown me (and so many others) that these internal conversations, and use of energy that is beyond our human limits to understand is in fact scientific… not speculative hope. And that is power beyond our neurons.

Thank you Dr. Bolte Taylor. You have given the world an enormous gift. One that I will enjoy daily on this neural escape called life.

P.S. I will most certainly donate my brain to science.

Blog Blog Blog.. is that all you ever write about?

An obscure altered quote from the Bill Forsyth Scottish hit movie of 1981 Gregory’s Girl. That was back in 7th grade for me. I even remember when and where I saw it. (The Forum Theater in Metuchen, NJ)  An obscure reference to say the least. It’s not even among IMDBs listing of quotes from that movie. Yet, it continues to hog space amongst the old phone numbers and birthdays of people I will never speak to again. And of course.. those scars. Those MS lesions that have been accumulating for 20 years.  

I take about 30 minutes every morning to peruse MS blogs, and write in my own. (actually this is a new addition to my daily routine, I like to make public statements like that so I can commit myself to things!). I read over and over how people are living with this disease yet it doesn’t define them.  It makes me wonder.

I’ve mentioned that since I was diagnosed at 20 years old, MS underscores my every fiber. I speak of how it molded me and shaped me to be resilient and powerful.  It forced me to recognize that I can accomplish far more than I thought, neatly categorizing my life in to sections. Sections entitled “fear of uncertainty”, “pain of speculation”, “coping alone”, “coping while dating”, “coping through marriage, childbirth, Life stressors, advanced degree, business efforts”. Every stage and experience of my life has been punctuated by my MS and the unique symptoms it doles out regularly.  So, I hesitate when I read other people’s experience that “ms doesn’t define” them.  I’ve never been a grown woman without MS and I’m not sure who that person would be. 

Or maybe I can find that person with some effort, and I don’t want to. I teeter nervously on speculation. I can look at who I am along with MS. But when I even begin to look at myself without it.. for the sake of discussion… I only come up with points I’d rather not even consider.  It only serves to illustrate a loss. What I can’t do. What’s the point.

So MS does define me. It offers me constant daily challenges for which I work hard to rise to the occasion. To add strategy to my belt of coping and you know what? That empowers me for the next step.  So I won’t question my definition. I’ll relish in the me that has happened with MS. 

I’ll try that on for a while. In the mean time feel free to share your definitions of self.

~ag