It’s been a while since my last book update.
I am happy to say that I am still making progress, albeit slowly. Working full-time only affords me limited energy at the end of the day to type coherent sentences, but it is progress nonetheless. In the beginning, I was keeping track of how many pages I had written. Although by now I’ve lost track, I am well over 300 at this point.
Instead of tracking page count, the way I measure my writing progress is by where I am in my story. Right now, I am in late 2012, right on the cusp of the most emotional two months of my life. January and February 2013 was a defining period that changed the trajectory of my life forever. Even now, it still elicits mixed emotions. The pain of loss. The frustration of dealing with a rapidly-weakening body. The nostalgia of living and working in Boston. The satisfaction of realizing just how much I’ve grown since that time.
I didn’t have a blog then, so I’ll set the stage for you a little bit. In December 2011, a little more than three years into the progression of my disease, I had to move out of the apartment I was living in with my best friends from college. It was a two-story walkup in Boston and the stairs had become too difficult to navigate. Three months before, in September, I fell for the first time while walking to the store, which made me realize that I had to move.
I was fortunate to find an apartment in Cambridge on short notice and a roommate who could split the rent with me. But other than my roommate, I didn’t know anyone else in the Cambridge area. I had a couple coworkers who lived a couple miles down the street, but the area felt strange and unwelcoming. I continued to weaken throughout 2012 and fell without warning with increasing regularity. Worse, I was alone and depressed much of the time in a neighborhood I didn’t like.
Then 2013 came, and my life spiraled further out of control.
First, my cousin Laurie – who used a wheelchair all her life and whom I greatly admired – passed away after a brief illness. Then, two weeks later, while walking home from work, I fell on the sidewalk near my apartment and couldn’t get up, leading to a monstrous panic attack. A week after that, my beloved friend and coworker Carly passed away from cancer. The one person who knew how to tell me, in the nicest way possible, to quit sulking and shape up.
Three events that shook me to the core.
It was the most difficult period of my life. It was a time where I had to learn, literally and figuratively, how to pick myself up. A time when I had to make the decision: what kind of life was I going to live? It was hell to go through, but, looking back, it was the catalyst for all the positive changes that have happened since.
Carly’s death anniversary – February 17th – was three days ago. I can’t believe it’s been six years. Looking back, between then and now, everything has changed.
On one hand, it’s hard to think about the freedom and mobility I still enjoyed six years ago, even with all the falling. There was so much more I could do then that I can’t do now. I could still go out with friends and coworkers. I could still ride the subway and walk to and from the office. I could still get out of chairs without difficulty. Life before crutches. I think back on that time nostalgically, grateful for the memories and the relationships I made, many of which continue to this day.
On the other hand, to paraphrase Tom Brady, I’m still here. The difficulties I experienced forced me to grow up. With the sound of Carly’s admonishing voice echoing in my ears, I forced myself to focus on my goals in life that remained unachieved. I went back to school. I gained my patient advocacy voice, and in the process realized how much I loved sharing my story. I found out just how strong I was mentally, compensating for my loss of physical strength.
Yet, as this last month has made aware, I may never fully accept this hand I’ve been dealt. This has not been an easy time for me. I went a month without going outside. It took three weeks for my back to heal. Then my dad got sick. Then I got sick. I’m struggling to make the move to Boston work. Life doesn’t seem to stop throwing roadblocks and obstacles my way, and even though I know I will persevere, it doesn’t make it any easier to handle in real time.
In these difficult moments, the bittersweet memories of my former life come flooding back, a reminder of the life I used to lead, and, with Carly’s voice still shaping me up after all these years, a reminder of what is still possible.
5 thoughts on “Between Then and Now”
Amen . You have certainly taken the bull by the horns, Chris. You have overcome so much and I have no doubt you will do great things and help many people. You have the strength and conviction. Love you.
Your strength and courage is admirable Chris. You may have lost your mobility but what you have gained because of it is remarkable.
Keep writing, working, and moving forward,
On your most difficult days, I pray that you realize the profound difference you and your words make in others’ lives; they certainly do in mine. It’s clear that you are following God’s lead, Chris, as you continue to flourish as a person and an author.
Reblogged this on Fighting Duchenne.