A Lifetime in a Decade

Next week is the big 3-0. To be honest, it feels like just another birthday. Don’t get me wrong, I am blessed for every day I am given, but the number itself doesn’t make me feel any older than I already feel. At this very moment, for example, I am writing with a pulled muscle in my neck from the physically demanding action of rolling over in bed. If anything, 30 gives me a chance to take a step back and assess all that has happened in the last ten years.

My 20s, to say the least, have been difficult. Lately, I have found myself in a reflective state, thinking about what I have been through over the last decade. After all, my entire disease progression took place in my 20s. It was shortly after I turned 21 when I first noticed muscle weakness. It feels like a lifetime ago that my body was in shape and fully able.

So long ago, in fact, that I am rapidly forgetting what it feels like to run, jump, or walk without fear of falling. That is why I cherish dreams where I am running and active; although it’s cruel when I wake up, they are momentary escapes from my current, limited reality. I do, however, vividly remember the feeling when I first realized the magnitude of what I was up against.

The first scarring moment on my journey was not when I pulled up lame while going for a run, or when I was frustrated that I was not gaining strength at the gym. It was actually a year later, in November 2009, when I had a fateful appointment with a neurologist at Beth Israel hospital in Boston. That day, I gained insight into what my diagnosis really meant, and what was in store for me going forward. The naïve belief that I was missing an insignificant protein that would have little impact on my quality of life was debunked for good. The neurologist was a nice guy, but the information he provided – specifically the prognosis and lack of research being done – was a harsh jolt of reality. I left the hospital that day perplexed, and above all, afraid.

I think about how I felt then, and where I am now emotionally. The cloud that formed over my head that day has not left. Some days it rains, other days it thins out so light can shine through. But it’s always there, and, to be realistic, always will be. I’ve experienced so much since that day, the disease uncompromising in its steady progression despite my vain interventions.

What is undeniable about this turbulent period is that it has provided me insight and wisdom I otherwise would not have gained. Adversity has forced me to ask deep questions about the meaning and purpose of my struggle, and of life as a whole. It is a life that has not been easy, and will only get more difficult with each passing day.

But I’ve grown, there is no question. I am far more prepared today to deal with the hardships to come than ever before. And they will come.

I think back often to that day at Beth Israel. I figured, based on what the doctor was saying, that I had five years left to walk, at best. He said many patients are no longer ambulatory by age 30.

I had so many questions, so many fears. All I could think about was what my life would be like when I got to 30. Would I be walking? Would I be happy? Would life still be worth living?

To commemorate turning 30, and since I don’t want to do a cheesy “20 things I learned in my 20s” type list, I am going to instead write two posts in the coming week. First, I will compile my thoughts and fears on that November day in 2009 and write a hypothetical letter to my 30-year old self, asking how life turned out. Then, next Friday, I will write my answer.



5 thoughts on “A Lifetime in a Decade

  1. Pingback: The Gathering Storm: A Letter from my Younger Self | Sidewalks and Stairwells

  2. jorgecisneros@netzero.com

    smile life is a journey full of surprises and this is one. when I got my news about my LGMD2B I was turning 40. Don’t worry about the future cause is the future the time is now today. if you can put a price on your eyes, brain, heart, kidneys, lungs, how much would it be? see your rich very rich so enjoy life accept it as it is and enjoy your journey cause we still have a long way to go. God Bless!!!!

  3. Pingback: Singin’ in the Rain | Sidewalks and Stairwells

  4. Accepting change is never easy. Yes, sometimes the idea of change can bring anticipation and excitement. However, when change means losing something very dear and near and how much dearer or nearer than one’s health, then accepting change is very difficult. I guess it’s called denial. While my condition is not degenerative, my friends have pointed out to me that I’m in denial. I don’t see it because I’m experiencing gradual, very gradual healing. I’ve got more to learn. Reading your experience is helping me gain some more understanding.

    1. Chris Anselmo

      Thanks Jasper, I appreciate it! Nice to meet you as well. I came across your blog a few days ago and think it’s very well written. I have found that connecting with other patients has been helpful to me in grappling with and coming to appreciate some of these heavy issues that we all face as patients.

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