What it's like to live with a progressive neuromuscular disease

Thursday, June 21, 2012

That time of year…

For the last few years, birthdays have been a bit tricky for me.  As I shared in my very first blog posting one year ago (yes, it’s my blog’s anniversary tomorrow), having a progressively debilitating disease can make any regularly-occuring marker of the passage of time anything but celebratory. What’s there to celebrate about being one year closer to worse?

So with that in mind, six months ago I decided that my husband and I should plan to take a vacation alone, just the two of us without kids, on my actual birthday. I figured if I could just “escape” on that day,  I wouldn’t have to dwell on the significance of the day itself and I could look forward to my birthday and the six months leading up to it with a very different kind of anticipation than before. Or at least that’s what I told myself.

And here I am, the day before the big day and I am disappointed to find that although my little strategy did pay off for most of these six months, it doesn’t seem to be working right now. The ineffectiveness of my coping mechanism (aka denial) became evident this past weekend when once again, I had to learn the same painful lesson I always do- there’s no such thing as an “escape” when your  disease follows you everywhere you go.

We took our boys (one and five years old)) to San Diego to a beautiful resort hotel complete with pools, water slides, expansive grounds and a whole lot of barefoot walking. And though I loved seeing their sweet happy faces as they splashed in the water and their delight as they ran up and down the hotel hallways, I was painfully reminded that rather than vacation being a carefree time of relaxation and “getting away from it all,” for me and my life with HIBM, vacation is more akin to going to war without my usual armor. Perhaps that sounds dramatic, but let me explain. These days I don’t leave the house without my leg braces. I simply can’t. They are how I function in the world. And I have figured out how to manage my surrounding environment enough to the point that I generally know what I’m up against and I have a routine to which I have ultimately adjusted.  But when I go somewhere new, I feel vulnerable and defenseless. It requires me to navigate new terrain and in the summertime especially, when the pool is the main activity, it means trying to walk barefoot.  It means having to confront all of my limitations and investing a lot of emotional energy in having to actively redirect my thoughts. All they seem to want to do in those moments is flash forward to the future with all of its unknowns and force me to be in touch with how much harder life will get- specifically activities that used to be so pleasurable and fun. Rather than feel at peace and in the moment on vacation, I find myself feeling anxious, frustrated and sad. Rather than leave my worries from my “real life” back at home, my reality becomes more magnified as I am in my head doing more processing than ever.

This past weekend, my mind produced what felt like  a running commentary. I looked at all the able-bodied people around me, strutting around the pool, oblivious to their every step- where their feet would land and whether or not it would be slippery and I felt angry and sad. But then I quickly made room for the gratitude I had for simply being in such a beautiful place, for being able to afford to take a vacation with my kids, for the slow and calculated steps I still could make. I would see all the moms scooping up their kids and carrying them into the pool, tossing their babies up and down while I stood there stuck, able to hold my 15 month old but unable to take a step with him in either direction until someone came to rescue us. But then I paused, held him tighter and reminded myself how blessed I am to even have children.

I had moments when I was acutely aware of how hard it is for me at this stage and I tried to imagine how I could possibly keep this up with my kids (who are still so young) and with a body that will be even less capable and independent and I am became overwhelmed by anxiety and a desire to just avoid experiences like this one. And then I remembered  that during the last vacation we took two years ago to Hawaii, I spent the first two days crying over all of my losses and I realized that this time, I didn’t cry. I was better able to observe my thoughts and feelings without reacting to them. That was growth that came about only because of all of the sadness I have felt/allowed myself to feel on this journey. I know that the more I expose myself and the less I avoid,  the less the pain interferes with my ability to be engaged in and enjoy the present.

If this post reads as somewhat inconsistent and confusing, that’s probably because it is. With every experience I have in my “new life” and body, there is a cascade of thoughts and feelings, which are often opposing each other. I am constantly mourning the losses while celebrating the gains. I am often wishing I could do all of the simple things I used to be able to do, while still feeling grateful that there are so many things I still can do. I am seeing the future and its potential devastation to my life and I am looking at all the the joy around me, right now in  my life. By no means have I mastered it. I will always be a work in progress. But one thing I do know and am finally starting to believe is that my disease is not the only process that is progressing and evolving. So am I. I am adjusting, I am evolving. And as I go along, I can only hope that I will  continue to adapt new coping mechanisms adequate enough to meet me wherever I end up.

So as I head to the airport tomorrow morning, I will try to remind myself that all of the anticipatory excitement I was feeling about this trip with Noah actually didn’t revolve around me walking around the pool effortlessly or jogging on the beach or being able to wear flip flops. What I was really looking forward to was having uninterrupted alone time. Being able to sleep in without kids or an alarm waking us up. Being able to lie on a lounge chair beside him, read a book and officially celebrate our 9 years of marriage. Framing it that way- being in touch with that reality- makes me want to get off the computer and go pack.

So before I go, I just wanted to thank you for making my entrance into the blogosphere this past year feel so safe and for all of the support and compassion and words of encouragement. If you only knew how closely I’ve held it all to my heart and how I cherish being able to take it with me wherever I go.

Please visit the NDF website for more information about HIBM and how you can help fund a cure

Neuromuscular Disease Foundation

About me