Silver Lining: My NDF Gala Speech for 2009


Last year I stood up on this stage and for the first time I publicly announced that I had HIBM. It was one of the hardest challenges I had ever faced. I shared some of the most intimate details of my experience living with this devastating disease to what was essentially a room full of strangers.  And while I expected the nervousness and fear that come with making oneself completely vulnerable, there were two things for which I was not prepared. First, I had no idea how liberating it would be for me to “come out.” It meant I no longer had to pretend that everything was okay or feel ashamed or embarrassed by my disease. I could be true to who I was. Second, and probably more surprising, was the overwhelmingly positive response I felt and received from everyone in the room. I was truly blown away by the outpouring of love and support. That night was one of the most meaningful nights of my life. It inspired within me a deep hope that I had not previously felt since being diagnosed. It was so surreal. And for a few hours, I almost forgot the reason I was there.
 It took me a long time to come down from the emotional high of that night. But once I got into bed, it was easy. I was quickly reminded of the fact that despite all of the excitement and hope that was stirred up, I still had the disease.  And nothing had changed that.  I still had trouble turning over in bed just like I did every night, I still had the pain in my low back and hips from walking and I went to sleep knowing that I still had to wake up inside my body the next morning.
After having had such a positive experience speaking at the Gala last year, I actually looked forward to speaking again this year. But when I sat down to write, I was surprised by how much harder it was for me. I was overwhelmed by how much more I had to say from just one year to the next. It was a painful realization to make-that I had endured so many more losses, both physically and emotionally, in such a seemingly short period of time. I knew there was no way I was going to be able to cover everything.
Last year, I spoke a lot about having to constantly navigate the balance between feeling fear and anxiety about my future and maintaining hope that there will be a treatment, if not a cure, before I become too disabled.  As time passes, that balance is tipping and it is becoming increasingly difficult to stay hopeful and positive about having HIBM.  I know this is confusing and upsetting for people to hear, especially on a night like tonight, when we can see direct evidence of how successful the NDF has been at raising awareness and advancing the research. And I know people feel that it is not the “right attitude” to have, but I think if I could just explain how I arrived here, you would understand why living with a progressive neuromuscular disease makes it so extremely difficult to try to stay positive about the future.
When I was first diagnosed, it was still hard for me to tell what was “normal” and what wasn’t. Obviously, I had only ever lived in my body, therefore I didn’t really know what other people were capable of physically.  So I operated with a healthy dose of denial and told myself that everybody probably struggled with the same things that I did--opening bottles, going up a few stairs, holding a one year old. It was all so subjective, I couldn’t really be sure what was the disease and what was just normal.  During the first couple years, I counted on that subjectivity to instill in me the hope that maybe my trajectory wasn’t going to be as steep or as fast as some others’ and that maybe, just maybe, my symptoms would plateau, indefinitely.  I held onto this hope as long as I could until it became no longer possible to deny the reality in which I lived.
I am now three years out and I have plenty of objective signs to remind me multiple times a day how my body is slowly failing me. From the more obvious, like not being able to walk faster than 2 miles per hour on the treadmill (and even at that speed it’s a struggle to maintain my balance) to the more subtle, 
like not being able to hold up a book for as long as it takes me to read a bedtime story to my son because my arm muscles become so fatigued.
In fact, I don’t even have to try to do anything at all to see direct evidence of how this disease has affected me. I can just look down at my body and see the areas that are slowly deforming. When muscles no longer function, they start to waste away. My left forearm has been reduced to literally just skin and bone, and my right forearm is slowly on its way. About thirty-percent of my left calf has melted away. I have no muscle tone on my hamstrings. And I have overdeveloped muscles on various areas of my body where the still healthy muscles are trying to compensate for the weak ones that are no longer working. Before HIBM, I used to look in the mirror and admire the body I saw in front of me, despite of all the areas I thought could be improved. Today, I avoid doing so at all costs. Because whenever I do, I always seem to discover a newly affected area. It’s too painful to seeing the transformation that I’m helpless to stop.
I have always enjoyed being a happy person, but living with HIBM has made it hard to feel truly happy in a carefree way. My happy moments are never secured or guaranteed to last too long. When my symptoms are stable, I am able to feel happy. I regain the hope that maybe I won’t get any worse and I get comfortable with the  way I am. But inevitably, something upsets that hope- either I have a bad fall or I see a mom walk effortlessly across the street holding her child, I see people staring at the way I walk out of the corner of their eyes or I discover something else I can no longer do. I then have to start processing and mourning all over again. Living with HIBM means constantly having to find the strength to readjust to and make peace with the ongoing progression in my body.
When I get worse, it’s almost impossible not to wonder how much or how quickly I will progress. There are HIBM patients who within 5 years of being diagnosed can no longer feed themselves because they’ve lost the strength in their arms and fingers. There are people who use voice activated computer software because they can no longer type. There are people who have to use hand controls in their cars because they no longer have the strength to push the pedals. I used to feel confident that that would never be me.  But when I can’t even bend my left index finger all the way down, let alone use it to do anything, or when it takes me 5 minutes to put on a pair of shoes because I don’t have the strength to uncurl the toes that get stuck inside, or when I have trouble simply squeezing a tube of toothpaste with my left hand, it’s hard not to wonder where it’s all going.
I am 33 years old. In so many ways I feel like I am just getting settled into my adult life. But in so many other ways, I feel like I never really got a chance at it; it’s as if I’ve fast-forwarded about 50 years. I am well aware that what I am experiencing is no different from what most people experience in life. Everyone’s bodies eventually stop working, it just usually doesn’t happen in the prime of one’s life. My life is just getting started- I have a loving husband, a beautiful child, a supportive family, wonderful friends, and a career that is just starting to take off. And I also have a disease that is very slowly stripping me of my independence and self-sufficiency and most painfully, my entire sense of self.
I can imagine that people are hearing me speak and wondering how bad it could really be. After all, when you look at me, all you see is someone who walks slowly and with a limp. What you don’t see is the constant calculating and planning I have to do with every move.  Where will I put my foot down with my next step? How am I going to walk across the newly buffed floors of my office building without slipping? Am I going to embarrass myself and accidentally lean into a stranger while walking on the sidewalk? Will this be the day when my patient asks me why I’m limping? Should I turn back in the middle of the crosswalk when I realize I might not make it all the way?
I often wonder what my thoughts would be composed of if I didn’t have this disease. I can’t remember what I used to think about when my mind was free to wander. The physical limitations and frustrations with which I have to grapple, are nothing compared to the emotional ones. Transporting me from one place to another is only one of the functions my body performs for me on a daily basis-one that can be achieved fairly easily by alternate means. My body represents for me so much more. It is how I present myself; it’s how I take care of my husband and my son, it’s how I cook, how I dance, how I communicate, how I show affection, how I love, how attractive I feel and most meaningfully, it’s how I interact with my two year old son. It’s how I share in his joy and tend to his pain. I can get over the times when he runs ahead and looks back at me and says, “Mommy run too!” or when he’s too tired to walk and he asks me to hold him and I can’t. I have learned how to handle those situations.
It’s times like when I come home from a long day at work and he’s walking down the street and he sees me and his face lights up and he starts running towards me as fast as he can- his arms outstretched and the excitement bursting from his body. For me to not be able to reciprocate and mirror that kind of unbridled, raw excited energy, to not be able to jump out of my car and run towards him and scoop him up, to be forced to just walk towards him slowly and hope that my words convey how I feel is something with which I am still trying to come to terms.
My biggest fear, my worst nightmare in all of this has not been that I’ll end up in a wheelchair for the rest of my life or that I’ll require 24 hour help; it’s that this awful disease would take from me the essence of who I am.
People used to reassure me that I would still be the same person-that my personality would continue to shine through regardless of what my body did. I appreciated their kind intentions, but I also knew that those were easy words to say coming from a body that worked.
Although I have since evolved to a place where I can now believe them, I can’t help but wonder how much of my ability to do so is because I can still walk, I can still drive, and I can still meet my own basic needs myself.  How much of my ability to cope with this disease now is a result of me not being “severely incapacitated” yet?. Right now, they are still just fears, worries and anxieties about the future. But who will I be if and when those fears become my reality?
With the continued efforts of the Neuromuscular Disease Foundation and the generous support of people like you, I pray that that is a question I will never have to answer.
Thank you NDF for being the silver lining in my dark, stormy cloud.
And thank you everyone for being here tonight and continuing in this journey with me.
Thank you