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

Friday, October 19, 2012

One Day

People often tell me that I’m an inspiration. Or that I’m brave. When you see me, I am happy, I am positive, I am active and busy. I work hard, I’m grateful, I’m a mom taking care of two energetic young boys. And it’s true, I am all of those things. But brave and inspiring weren’t a choice. My alternative to brave is to give up. My alternative to inspiring is to fall into a dark abyss of anxiety and fear.
If you admire it – my happiness, my bravery – I wonder if you should know more about the elaborate coping strategy that goes into maintaining it. I wonder if you should know how hard I fight for it each day that I live with this progressively debilitating disease. I recently came across a video entitled, “Sh*t people say to disabled people.” As I watched it, I was again reminded of how little people understand about what it means to be disabled.
Maybe if I share some of the small moments that make up my every day, you will see how insidiously this disease finds its way into so many of my thoughts, how I must confront it with every movement I make. These are the invisible moments that you could never really know unless you live in this body.

Wake Up. I’ll start with the morning since waking up and falling asleep are two of
the most difficult parts of my day. I rarely wake up having slept all night,
uninterrupted. Whether I wake up in the middle of the night because a part of my
body has fallen asleep (because it doesn’t have the strength to spontaneously
shift positions) and I have to vigorously shake it out or because I simply can’t get
comfortable no matter how I try to strategically place the pillows, I usually wake
up feeling exhausted. The first thing I do is take a mental inventory of what’s still
working and what’s still not working. I try to wiggle my toes though I know it’s
futile. Just a wish that I fantasize about, and test out, every day. Then I see if I
can make a fist with my left hand. Again, same outcome every time. I don’t think
there’s been a morning in the last 6.5 years when I haven’t woken up with at
least a momentary panic. Every morning, I have to talk myself down from the
anxiety that sets in as I wonder how I could possibly wake up every morning for
the next 50 years in my body. And not just this body, but the one that awaits me
in my future. Then I hear one of my boys and I know I have to drag myself out of
bed. I place my hand behind my head because I have learned the hard way that
my neck no longer offers my head the strength necessary to support it when
sitting up. It only causes strain if I try. I put my feet on the floor and stand up. Half
of the time, I fall right back onto my bed because I can’t maintain my balance. Or
my muscles feel so tight that before I try to take a step, I hold onto my dresser
and try to stretch out my calves. And then, finally, I take the first of the many
wobbly, uncertain, anxiety-provoking steps that I will take throughout my day until
I return to my bed at night to start all over again.

Get Dressed. I miss my pre-disease life when the only real “stress” of getting dressed was about what I was going to wear and whether or not it looked good. Now my time in front of my closet is spent wondering what sneakers I will pair with my leg braces and how much walking I anticipate doing. I have to make an informed decision as to whether or not it’s a day I’m up for the stares and whispers that come from visibly wearing my braces with a skirt or over a pair of jeans or whether I should just wear my wide-legged pants to hide from the world. Once I decide on the shoes, I have to take the insoles out of them, get my braces out from the other shoe and then slide them into the chosen shoe. Often times the velcro is stuck together in such a way that I don’t have the hand strength required to peel it apart.  If I’m lucky, there’s someone around to help. Otherwise, I have no choice but to just use my teeth. Once I get the brace on, I have to tie my shoes. It’s no longer a mindless or quick task.  I can no longer bend my left index finger and my right hand is increasingly uncooperative, so I have to use my other fingers to tie my shoes.

Navigate My House. Although I may complain about my leg braces, I don’t know what I would do without them. We have a love-hate relationship. They take me where I want to be, albeit slowly, but they demand a high price. The carbon fiber brace rubs against the back of my heels and the velcro strap around my shin causes soreness. Sitting with my legs crossed is almost impossible as is getting up from the floor. So I usually leave them off when I am at home to give my legs a break. But when I am without my armor, the fight is harder. Everything becomes even more of a struggle. Whether I’ve left my cell phone in another room of the house only to hear it ring from down the hall or whether my son is on the changing table and I discover his pajamas are in the laundry room, I have to brace myself for the journey. And more than that, I have to continue to increase and practice the level of my frustration tolerance because I simply do not have a choice if I want to move forward in some capacity.

Go To Work. Eventually, I make it out of the house. I fish around in my purse for my keys, cursing the fact that I can’t get a good grasp on them once I locate them. I get into my car. The first thing I usually like to do is put the window down, which is relatively easy. But putting it back up is a different story. I have to try to hook my weak fingers under the controls and lift my entire arm up to get it going. Sometimes I reach over with my right hand to do it and sometimes I just skip the fresh air all together. Once I get to work, I drive into the parking lot praying that one of the three disabled spots will be available. I walk down the hall as quickly as I can, hoping not to encounter any patients and once I get into my office, I close the door behind me, relieved that I made it once again without getting caught. (I still haven’t quite figured out how I want to navigate my professional and private life in that dimension).  It’s not comfortable to wear my leg braces, so I take my flats out of my desk drawer while pulling off the straps of my braces, roll down my knee high socks and hide them all behind the trash can
under my desk. And then, I am officially transformed. I am more comfortable. This strategy works well until I inevitably need to go to the bathroom in between patients. It’s too labor intensive to switch back out of my flats and into my braces, so I brave the walk back down the hall to the bathroom defenseless. Only having the walls of the hallway to steady me and a hope that my feet will clear with my steps so I don’t trip and fall. Once I make it back to my office, I can resettle myself. Until it’s time to go home.

Coming Home. My house has a few shallow steps out front.  It seemed impossible to find a house with a completely flat entrance. So when I get out of my car and reach those steps,  I have to put down any bags I’m holding, not just because I feel the burn in my muscles from carrying, e.g. my purse, on my shoulder, but because I have to focus all of my efforts on putting one foot on the step, balancing it there and then slowly swinging my other leg around to put my next foot on the step. And then repeat for the next step. It’s always a bit precarious, and I’m always hoping that this isn’t the day that I fall backwards. Eventually, I make it to the front door.  Now I have to use these fingers to get the key into the keyhole.  But then I am soon greeted by the smiles of my boys. And as joyful as it is to be with them, now begins the next challenge of my day – trying to kneel down to their level, trying to lift the baby up, trying to get to them before they fall off whatever they might be climbing.

I wonder if you are starting to find this a little tedious.  You might not be interested in the strategic thinking that goes into rolling up my car window or putting on my leg braces.  And here we are at dinner time.  We haven’t even talked about trying to cut up vegetables or take a pot off the stove.  We haven’t talked about trying to cut up my kids’ food or open a Ziploc bag.  We haven’t talked about how my muscles now burn because it’s the evening and I’ve been maxing them out all day on the most basic tasks. 

This is my day.  This is my world.  I would love to spend it thinking about something else, but I can’t.  And this is today.  I don’t know if tomorrow might be a little harder.  And what about next month? And what about next year?  How I will be able to continue living this life in a progressively weaker body? 

I usually save those questions for the nighttime, when I’m back in my bed, before this starts all over again in the morning.

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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