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

Saturday, October 11, 2014


I am in Berlin. Yes, Berlin, Germany. If you read my last post, then I know you already know this. But I’m still taking it in. And though I have carved out this specific time in front of my laptop for gala speech-writing, I can’t seem to focus on it. So instead (and since this is why I started blogging in the first place), I’m going write about the space I’m in right now.

Aside from traveling to Mexico here and there,  I have not been out of the country for over 11 years. For a variety of reasons: kids, work, cost. Reality in general.  I have always felt so incredibly blessed and fortunate to have done the kind of international traveling that I did in my 20s. When this last minute opportunity to come to Berlin to meet the scientists arose, though my heart and my mind knew I wasn’t going to say no, my body was terrified. How will I handle the flight? I have never travelled for so long in my “new” body. My muscles have a hard enough time sleeping comfortably and waking up feeling rested at home, how will they feel after 10.5 hours on an overnight flight and then a layover and then another two hours? And how will I cope with the fatigue? And not exercising? Or potentially not eating properly? I don’t get to indulge in that kind of carelessness or recklessness anymore.  I knew it would mean having to go out of my comfort zone, and not just physically. Having to beg for an upgrade on the flight (didn’t happen, but did manage a row of 3 seats to myself). Having to use a wheelchair for the very first time the minute I stepped off the plane in the airport (did happen, but will have to dedicate a separate blog post to that). Having to allow my sister to wheel me around Heathrow airport for two hours (that airport’s a beast so I eventually surrendered to it). Having to invest the effort in trying to get a massage while here (also probably worthy of a more amusing post one day).

So after doing the cost/benefit analysis, the benefits were far too great- a chance to travel, to immerse myself in another culture, even for just a few days, to hear a foreign language, to see a different season of fall, to sit and observe people. It’s truly a thrill. A delight for the senses. So when my sister said this morning that she was going to sit in the lobby (better wifi) all day and get work done in preparation for the meetings tomorrow, I had to make a choice. I could play it safe and stay close to my human cane (who’s taken impeccable care of me and my body while here) or I could do what would come so naturally to my old self- set out to explore. Since I just don’t know how to do it any other way,  I chose the latter. So I took a taxi to Hackescher Markt- a hip area with boutiques and cafe-lined streets.

I stepped out of the taxi and took in a deep breath of independence, empowerment and true inner peace. I felt so proud of myself. And then I started walking. Cobblestone sidewalks. Not the easiest to navigate when balance is already an issue. And then I started going into stores. Every single store had either a one or two step walk-up to enter the store. And no railings of course.  But in those moments, I don’t let myself think. I just do. I also don’t like to miss out, so of course I walked in and out of practically every store. I almost fell a few times. I thought because I was so anonymous in this city, I wouldn’t care. I did. Throngs of people kept passing me by. I could feel people being annoyed behind me or confused once they passed me, glancing back to see what my deal was. But I kept going. Because I will always keep going.

The whole time I was acutely aware not only of how hard it is for me engage in the simple act of walking around a new city, but of how limited my time of being able to “walk” any new city actually is.  This is not me being catastrophic or pessimistic. This is just me being honest with you and with myself. I won’t be able to keep this up for much longer. I’m not saying I won’t travel to new cities again. I’m saying I won’t get to do it this way for much longer. No matter how much will I have, no matter how much spirit and motivation I have to do it, I’m up against something so non-negotiable. I stepped out of  that taxi and felt such an overwhelming sense of gratitude and joy. In truly the most authentic way. I felt how lucky I was. To be able to be here. To do this. And then with every step I took, how unfair it was that I am trapped in this body. That I am constantly having to talk myself down, coach myself through. There’s an art to it that I am continuing to try to master: a delicate balance between wading in the feelings without being drowned by them.

Today I had a lovely day of slowly walking around, doing some shopping, stopping for lunch and slowly walking some more. I didn’t make the decision of what to do today based on fear or on wanting to minimize my emotional discomfort. I made the decision of how to spend my day based on what made the most rational, logical sense. And when I’m in a new city for the first time, it makes sense to go out and be in it. There may be some tears involved when sitting here processing it, but the benefits continue to outweigh the costs.


Tomorrow we will get down to business, so stay tuned…





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