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. 






Friday, April 4, 2014

An Open Letter to Equinox

Dear Equinox Westwood:
I knew I was fooling myself when I first took a tour of your gym 1.5 years ago and thought that it would be a good idea for me to join- you know, given the 2 flights of stairs just to get to the front desk and then another 2 flights of stairs to get to the locker room. But I just couldn’t resist- the incredibly convenient location across the street from my office (and a mile from my home), the almost-never crowded pool where I could start doing the long put-off aquatic physical therapy exercises and of course, the unlimited access to Kiehl’s bath products.  I told myself I would build the stairs into my exercise routine and that even though there was no elevator from the pool to the locker room, I would manage. I wanted it so badly. I wanted to enjoy all of the benefits that other people do from belonging to a fancy gym. I didn’t want to listen to the whispering voice in my head reminding me that I actually live in a different body from all those other people. I didn’t want to miss out on yet another thing because of my disease.  And so I joined.
Of course, first thing I did was look into your elevator access. I was told there is one elevator in the lobby of the building that lets out on the gym floor. I tried it a few times, but quickly learned that it doesn’t have its own call button.  This means that every time I pressed “up” and the wrong elevator opened (I think there are 8 in total), I had to wait to let that one close before pressing “up” again so I could hope for the right one to open.  I move at a slower pace despite having the same time constraints as everyone else, so all that extra waiting wasn’t a feasible option.  I decided I would rather spend that waiting time holding tight to the railing and climbing up one step at a time to the main floor.
When I had inquired about access to the second floor pool on my tour, I was shown the wheelchair lift from the first floor. But I had a hard time believing there wasn’t any access to the third floor locker room, so I contacted your manager and discovered that indeed there is a service elevator from the first floor gym (which houses the small workout area that I use) to the third floor. I was relieved and excited to have this option, especially since I take off my braces when I exercise and this would allow me to just walk a short distance without my braces to get to the elevator and go up to take a shower. Until then, I had to take them off to exercise, put them back on to go up the stairs, take them off again once upstairs to shower and then put them back on again to leave.  But when I asked for access to the elevator, you told me that you were not allowed to give out elevator key cards. But you said if I just walk back to the front desk (which is past the elevator) to alert one of the employees, they would be happy to walk back with me and call the elevator. As always in those situations, I tried to respond positively. I didn’t complain.  I didn’t want to seem unappreciative. I didn’t try to help you understand that having to walk all the way back to the front desk while carrying my braces and my two gym bags in my hands is actually quite difficult and scary for me.  I didn’t tell you that how it feels to have people stare at me while I do it. I didn’t tell you how awkward and uncomfortable it was to have to stand and make small talk with one of the random front desk escorts until the elevator arrived.  I didn’t tell you that it’s frustrating to have to stand there and wait until someone’s free and able to pull away from the front desk to assist me.
Eventually I mustered the courage to share that this plan wasn’t working for me and after some negotiating, you allowed me to exchange my car keys for the elevator key card (for the one day a week that I need it) when I entered the gym so that I could simply finish my work out and make my way over to the elevator on my own time and with some dignity. That worked for a while.
And then yesterday happened. A month ago when I asked for the key card, I was told that you didn’t have it anymore. You told me that a member must have taken off with it because you couldn’t locate it. I figured I could go without it and surely it would be available the next week. And then the next week came. And another. And another. No front desk key card. By then my strategy had been to try to make arrangements with the maintenance man whom I’d befriended who is the only other key card holder. I won’t bother you with the stress that went into trying to make sure he was at the right place at the right time when I needed to go upstairs… 
Finally, yesterday, the fourth Wednesday that I showed up only to hear the same story, I explained that this had gone on for too long and the excuses were no longer acceptable. You apologized and said, yet again, that you’re working on it and that for today, I should call the front desk when I’m done with my workout and you would come bring me the key card. Fine. Not surprisingly, when I called, ready to go up and shower before rushing to pick up my son from preschool, the woman at the front desk had no idea what I was talking about. I then got the attention of the maintenance man and motioned to him from across the room, but he motioned back that he didn’t have it. I felt the anger and then the sadness came flooding in. Exasperated, I gathered my things and prepared for the climb.  
And then I saw you near the stairs. You asked if I had received the card from someone and I told you I hadn’t. I told you that I didn’t expect you to get what it was like for me, that I didn’t expect you to know that I was once like you, able-bodied, that I never imagined I’d be this person having to nag for basic rights to use a gym and get to the locker room easily just like all the other members. I didn’t expect you to understand how emotionally draining it is for me, being constantly reminded of my new disabled life and how much extra effort I’m forced to invest daily to keep it together. I didn’t expect you to know that there’s only so much I can take before I break down. And so I broke down. I walked away crying. I cried my way up each stair as I held onto the railing hoping today isn’t the day I fall, and then I cried even harder alone in the shower. I pulled myself together to leave and then cried when I saw one of my favorite teachers at the preschool and she gently asked me what was wrong. I cried when I got to my office and called my best friend and together we mourned the ignorance and lack of compassion that sadly seems to be more the norm than the exception. I cried in the afternoon when I met a dear high school friend for coffee and she told me she believed in her heart that my progression would never get so bad to the point of being severely disabled. And then I cried once more in the comfort of my own home. That cry was for the weekend I just had.  An amazing, 24 hour resort getaway, just me and my husband, that was infused with a quiet, scary, sickening awareness that my body’s getting worse, that it’s getting increasingly harder to get out of a hot tub and walk over to my towel or take a stroll on the grounds of a such a beautiful place. I get that there are worse problems to have. But there are better ones too.

Part of me wants to quit. Just cancel my gym membership and end this ridiculous but exhausting battle over access to your facility. This same facility that is sometimes painful to be in simply because I have to watch strong people getting stronger, while I get progressively weaker.  But if only it were as easy as cancelling a gym membership to get some space from my reality.  I know that I can’t quit any part of this – not your gym, not this disease, not my will to go on.  So I will fight on. But is it really too much to ask that you look at me, hear me, and then extend me enough compassion and human decency to make this even a tiny bit easier?

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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