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

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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