LIVING WITH HIBM

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

Saturday, April 26, 2014

Baby Steps

Those of you who have read my posts from the very beginning know that I was not always as open and honest and raw about my disease before I started blogging almost 3 years ago. In fact, for the first few years after my diagnosis, I couldn’t even say the word “disease.” I mean, I literally  referred to it as “the thing” and then later on as my “condition” and eventually, my “disease.” But even though I could finally call it what it was, which was definitely a step towards acceptance,  that didn’t necessarily translate into being ready to fully embrace it or move on to actually sharing it with others or speaking publicly about it. And I most definitely wasn’t open to meeting anyone else with the disease or even reading or hearing about other peoples’ symptoms. I have always allowed myself to go at my own pace when it comes to coping with HIBM. I have always owned up to the fact that for me, seeing other patients farther along the path of progression in a more disabled state only serves to increase my anxiety and interfere with my ongoing efforts to stay in the moment-every moment that passes- and not fast forward to what may come to pass. And that worked for a while. But eventually, that cost-benefit balance started to tip. The cost of not reaching out to others was outweighing the benefit of actually being able to relate to someone who truly understood my struggles. So I enlisted my sister’s help. I had her post on what was then the HIBM Yahoo chat group on my behalf, with the sole purpose of trying to find me an age-matched, level of disease progression-matched, gender-matched patient. And she did. Her name is Harmony. I affectionately refer to her as my HIBM pen pal. She lives in Fresno with her husband and two school-aged kids and we are about the same age. I remember the first time Harmony and I spoke on the phone, rapidly firing questions at each other: What kinds of shoes work for you?  How do you manage with your kids? Do you find yourself staring at and admiring peoples’s forearms and calf muscles? How much do you really share with your husband? Do you try to protect your family like I do? Since that initial contact (and through the ease of the newer Facebook HIBM community) Harmony and I have stayed in touch. We have been on a similar course of progression and we have both felt so lucky that it hasn’t been as rapid as some others in our community. We even met for dinner one night in LA when she was here.

And then a couple of weeks ago, Harmony posted this on the HIBM Facebook page, “I am picking up my new wheelchair tomorrow. I am glad that I will have one and will use it for “long” distances, but I am also very discouraged by the fact that I need it.” I read it just before getting the kids to bed. I had no time to stay with it. Nor did I want to. So I just went about my business. I didn’t speak of it to my husband until late at night. It’s such a delicate dance to do with a loved one, wanting to let them in because you know they want to be there, but also wanting to protect them and not scare them. Wanting them to be aware of the reality, but also wanting them to stay in whatever denial it is they’re in that may be helping them cope. I didn’t cry when I told him. Instead, per my usual, I shared with him all of the evidence that supports why I’m doing well and why I’m so lucky because my progression seems relatively slow and why I don’t need to be considering wheelchairs at this time. And when I stopped talking to him, I had an honest, slightly different internal conversation with myself. I acknowledged  how much slower I am now, how much more often I lose my balance and how much more effortful and exhausting  it feels to “run” a few errands at Century City mall these days. Mostly, it’s my inefficiency that gets to me. I’m a multitasker at heart. I don’t do well with down time. I have always had a tendency to pack in a lot in any given amount of time. I thrive off being able to check all the boxes on my list and then some, finishing up with just a minute on the clock. But now that my body lags so much farther behind my mind, I am finding myself getting increasingly frustrated. Of course, I only let that conversation with myself go on for so long before silencing it.

But as is true of any truth, it doesn’t change, it doesn’t go anywhere and eventually, it will rear its ugly head in your reality over and over again until you are forced to confront it. And confront it I did.


A couple of weeks ago, I became obsessed with purchasing a pair of simple, basic, yet fashionable and therefore expensive (but I’ll justify any cost in these situations) sandals that I knew I’d be able to wear with my braces. Long story short, I finally located them on-line and anxiously awaited their arrival in time to wear with an actual dress for Passover seder. (I used to love to wear dresses and skirts, but  now my usual go-to outfit is slacks with my required lace-up sneakers). I got such a boost just imagining walking through the fashion doors these would open up for me. I even got a pedicure in honor of the occasion. Once they were in my possession, I excitedly engaged in the somewhat ridiculous process of trying to slide my braces and my foot into a shoe that’s usually not intended for such devices, enlisting the help of my husband. I quickly realized that it wasn’t going to work with my carbon fiber braces but I was determined. I then pulled a different kind of plastic brace out of a pair of boots, ones that are intended for post-op patients on the orthopedics floor of hospitals who are doing rehab for their temporary foot drops. They are not meant for multiple wears and I saw how worn and ineffective they had become. But they are much lower profile braces than the big black ones. Unwilling to give up, the next day I called Hanger Orthotics (where I get my braces) and asked how much a new pair of those plastic braces would cost. I didn’t have much time in the coming days to get across town, but of course, I raced over there on Monday after seeing patients and before leaving for seder. 


They brought them out to the waiting room so I could try them on and went back behind the door. No one else was there. I pulled out the sandals, so excited to see how life-changing they would be. I jimmied my feet into them with the braces. I stood up, feeling triumphant. I took a few steps. I didn’t want to admit to myself that they weren’t much more supportive than the ones that I had thought were worn in. I took a few steps more and then suddenly, I tripped. I fell forward, hard to the floor. That is nothing new. But when I put my hands out to protect me, as we all do so instinctively, they slid out to the side and I landed directly onto my face. My forehead, nose and chin felt the cold hard merciless concrete floor that lived just underneath the thin layer of carpet. As I lay there, momentarily stunned both physically (I wondered if maybe I had had a concussion) and mentally, I immediately wished someone had been there in that moment. Not a personal person, but maybe someone who worked there. Someone who could come to my rescue. Someone who could witness what had just happened. Validate how incredibly scary and terrible that was. And then I quickly shifted to feeling relieved that I had been alone. As I slowly gathered myself up, still in shock of the helpless, vulnerable physical position I had found myself in, I felt grateful that I didn’t have to bear any more embarrassment and awkwardness than I already felt in my own presence. I sat up in a chair. Still in a daze. A few minutes later, they came out and asked for my credit card. I went through the motions, thanked them for having them ready so quickly and slowly walked out to my car. Once inside, I didn’t reach for the phone to share with anyone in the way that I so routinely do. In fact, it was one of the first times that I didn’t. Instead, I started thinking about all of the falls people had written about on-line (over the years it has been harder to resist reading). Gashes to the forehead requiring stitches. Being stuck on the floor at home and having to wait until someone got home to help them up. I wondered what I would do if I were seeing patients the next day because I knew it would bruise (and it did). I wondered how much worse it could have been and potentially will be in the future. Then I just felt a wave of foolishness. What did I really think? That these shoes were going to make me able-bodied? That if I could wear sandals and feel pretty one night, it would be as if this disease wasn’t be so bad? Temporarily didn’t exist? I didn’t beat myself up for very long. I no longer invest too much emotional energy in such acts. I have compassion for myself in the same way that I try to help my patients have compassion for themselves. I gently reminded myself that it makes perfect sense that I went on this whole crazy mission in an effort to simply find a way to cope. I didn’t cry as I drove home. I couldn’t. I had to rush home to  my kids, get dressed and spend any spare time packing for our upcoming spring break trip up north. (More on that next time).


You may be wondering what I decided to wear that night. If you know me,  then you know that I did in fact did wear those sandals and braces to not one, but two nights of seder.  I definitely wasn’t the most competent walker and I certainly had my moments of almost-falls, but I got to wear my pretty dress and show off my new favorite light blue nail polish. I am well aware that my stubbornness or vanity or denial might not make sense to some people. But I’m also even more well aware that my ability to pull off such stunts and the ability to even assert my stubbornness or denial is temporary.


I admire Harmony for her strength and courage. For confronting her reality head-on. For not letting her emotions interfere with her rational, practical decision-making process. For me, for now, I am just going to start by simply considering the idea of using a cane. Baby steps. At my own pace. 






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

Neuromuscular Disease Foundation

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