It checks out at 115 pages, single-spaced, give or take a few placeholders and incoherent ramblings.
This is a big deal for me. I’ve attempted to write my story many times, always failing. This time, though, is different. I am motivated, and it just feels like the right time. My transition into a wheelchair is nearly complete. It is a natural bookend to my journey.
The key to writing a book, I’ve found through trial and error, is to take a seemingly insurmountable project and break it down into manageable pieces. My immediate goal was to write out, chronologically, all the important events that have taken place in my life between 2008 and the present day. I have accomplished that. The next step is to go through what I’ve written again, and start to turn it into a story. Then in subsequent steps, I’ll add more detail, quotations, and finally, give it one final run-through.
Today I am featured on the WebMD website for Rare Disease Day! It is very exciting. I was interviewed a few weeks back (many thanks to NORD for connecting me) for a series they are running about patients living with a rare disease.
The interview gave a brief overview of my condition, my patient journey, and advice I’d give to others who are newly diagnosed with an adult-onset disease. I always enjoy being able to use my story to raise awareness and offer advice to new audiences.
Today, February 28th, is Rare Disease Day around the world. Celebrated annually on the last day of February, it is a day to celebrate the millions of individuals living with rare disorders who persevere and thrive against tremendous odds. The truth is, many of these diseases (there are over 6,000) are so rare, no one has ever heard of them, including doctors and those who work in the life sciences industry. Consequently, rare diseases get virtually no research funding when compared to the more common diseases that affect millions of people. Even with government incentives the funding gap is astronomical. Worse, some rare diseases have so few patients worldwide that it is nearly impossible to organize a foundation, raise money, and offer support and resources. This only magnifies an already frustrating situation.
That’s what makes Rare Disease Day so important. It is a day where all rare disease patients, collectively, come together as one community. It provides a platform to impart on lawmakers, scientists, and the general public how important it is to support rare disease research, and to raise awareness for some of these conditions. Around the world, ceremonies take place in civic spaces and government buildings, allowing for a diverse set of stakeholders to see firsthand the human impact of living with a rare disease.
I was honored to be part of the festivities last Rare Disease Day at the Massachusetts State House in Boston. I was invited by MassBio to be a patient speaker in the celebration, and gave a short speech in front of over 400 people. It was both thrilling and therapeutic. I met many wonderful patients with other rare diseases, along with advocates and scientists committed to finding treatments and cures. Several people had never heard of my condition (Miyoshi Myopathy), so it was also a great opportunity to educate.
This year I will be working, so I will not be able to make it to my local ceremony in Hartford. However, my thoughts will be with those who will share their patient stories and captivate audiences around the world.
On this day, our collective disorders are not so isolating. It is hard to put into words how much that means.
If you have been to this site before, you know that it looks a lot different now than it used to. Although I didn’t hate my previous blog template, I didn’t love it either. The capital letters in the title. The black band on top that really should have been an image but instead was blank space. The small font.
I spent a few minutes today browsing through the (free) templates WordPress has to offer. I settled on a theme that had a nice, clean feel to it. The picture unfortunately is a stock photo (all of mine were too pixellated when I tried to blow them up), but the New York skyline is an appropriate backdrop, as it was my home in the summer of 2015, and represents a happy milestone in my life with muscular dystrophy.
But I’m happy with how it looks. It is ready for prime time. Besides, although I am a perfectionist normally, I don’t want perfect to get in the way of good.
It has been almost two years since Stuart Scott passed away, an event that compelled me to write a blog post on his impact in my life growing up as a sports fan.
Today, unfortunately, we lost another sports broadcasting icon in Craig Sager.
2016 has been a rough year for celebrity deaths, but this one might have impacted me the most. This hurt. Sager was a fixture for me growing up as I watched the NBA on TV. If Uconn basketball wasn’t playing, I was probably watching the NBA. Basketball was, and still is, my favorite sport, so inevitably over the years I have gotten to know all the sportscasters and sideline reporters who call the games.
Sager was a larger than life personality. His questions were always on point, even if his clothing choices were, let’s just say, not.
This is my favorite Sager video, an interview with Kevin Garnett who goes off on a tangent about Sager’s suit:
Although Sager’s outfits were goofy, his courageous battle with leukemia these last two-plus years was anything but. Even through rounds of treatment – including three stem cell transplants – Sager was fiercely dedicated to his job, working the sidelines even while receiving treatment. He lived for broadcasting.
Like Stuart Scott, Sager was the recipient of the Jimmy V Perseverance Award at the ESPYs earlier this year. His speech was, like Scott’s, incredibly moving. I don’t throw the term “inspirational” around lightly – it seems to be overused these days – but his eloquence and perspective on life was an inspiration to anyone who has been dealt a cruel hand.
His passing was especially difficult today because I was finding myself a bit down. Although my struggles with muscular dystrophy pale in comparison to what Sager had to endure, his example is a reminder to us all to cherish each day no matter what your circumstances may be. Nothing is guaranteed.
Well, almost nothing is guaranteed. I can guarantee that the NBA on TNT will never be same. Although I don’t watch the NBA as much as I used to, I still follow the sport, and tune in to the big games from time to time. Half the fun was tuning in to see what Craig Sager was wearing as he roamed the sidelines.
The best tribute to Sager has been, ironically, on Twitter. With a platform like Twitter, as you know, even the most noble, uplifting, genuine people seem to get knocked off their pedestal by hate-filled commenters. Not today. Not with Sager.
I scrolled through hundreds of tweets, and saw the love from all walks of life – fans, current and former NBA players, even Vice President Biden. Everyone memorialized him, grieved him, cherished him.
Perhaps his greatest accomplishment was when he got notorious curmudgeon Gregg Popovich to crack a smile, which is no small feat:
Sager leaves an indelible, colorful void. He was one-of-a-kind, a decent man in a world that needs more of them.
After writing a blog post about how I was going to write a book, I knew I would have to keep some level of accountability, otherwise it would be a public, unfulfilled promise.
It took me a few weeks to get the ball rolling, but I am happy to say that I am at the 50-page mark of my memoir. I am starting my story around when the symptoms began, in 2008. 50 pages in, and I am just about at 2012. The first draft will easily be over 100 pages, and that’s before I go back and add in more detail.
The process of writing has been fun, but it has not been easy to relive some of my darker moments. I am currently at the time period (2009-12) when I was not handling my symptoms very well. I have been digging up old emails and notes in order to jog my memory, bringing back events and situations that I’d rather forget. However, if not for these moments, it would not be a book worth reading! I need to share the bad in addition to the good. In order to understand where I am today, it is important to convey to readers where I’ve been on the road to acceptance.
It has been a surreal experience. I am amazed by how quickly my body deteriorated, and how unprepared I was to handle my circumstances when they happened. Now, I have the luxury of hindsight and perspective, but at the time, it was extremely difficult.
All I can say is, I have grown so much in nine years. I wish I could go back and let my younger self know I’d be ok.