Note: This piece has been entered in the Patients Have Power Writing Contest run by Clara Health designed to raise awareness about clinical trials. I am passionate about this cause and hope it will help raise much needed awareness about the power of breakthrough research.
About three years ago, I read a news article that I thought had changed my life. A new gene therapy clinical trial was being developed for my disease, Limb-Girdle Muscular Dystrophy Type 2B (LGMD2B). I was on cloud nine. For the first time since I started experiencing muscle weakness in 2008, I felt like there was a cure on the horizon.
Reality soon set in.
Two years later, I checked in on the progress of the clinical trial – a pilot Phase 1 trial – and saw that it was still struggling to meet its recruitment goal of three patients, even though it had been open for almost a year. I groaned. I sighed. I welled up with frustration. What had once seemed like a surefire path to a cure now seemed elusive, yet another false hope on my patient journey. Reality had sunk in – this drug discovery stuff is hard.
I have some exciting news! I am happy to announce that I am raising money for an award at Northeastern University, my alma mater, called the Ralph and Theresa Anselmo Resilience Award, named after my parents. The award – which may end up being two awards when all is said and done – will be given to a sophomore, middler or junior-year student registered with Northeastern’s Disability Resource Center (DRC).
You can find a link to the GoFundMe page here. Any contribution is greatly appreciated! Even if you are unable to donate, sharing the link with your family and friends would mean the world to me.
I can go from months where I don’t notice any change in my strength to days where it feels like I am weakening by the hour. Over the last couple months, another wave of weakness has infiltrated my muscles, right as I was starting to adjust to my new level of strength. I can track my decline based on the everyday activities I perform, and whether or not they are harder to do than the day before.
Lately, getting out of bed with my walker has become a chore. It requires all the upper body strength I can muster, which is not much these days. My biceps have just about shriveled away, following the lead of my triceps which dissipated a couple years back. My chest and abdominal muscles, once muscular (I’m not talking beach body, but I used to be in shape!) have been replaced by fat. I press with all my might to get up, and although I am still able to stand upright, I worry in the back of my mind about the next time. What if my arms give out or I throw out my back? It’s a long way to the floor.
There are different pieces of equipment out there to aid in the transfer and lifting process, equipment that I am going to need to entertain at some point. I also have my dad who can help me, but I can’t rely on him forever – he is going to be 70 in September and has back issues of his own. Unfortunately, every time I go through weakening fits like this, I procrastinate on getting new equipment. It is a bug in my program.
Now, more than ever, I need to get out ahead of my weakness and purchase the equipment I need before I suffer serious injury, or worse, hurt a family member in the process. No piece of equipment have I procrastinated on getting more than a power wheelchair. It is the ultimate form of adaptive equipment, the terminus in a long line of physical concessions. I just haven’t been able to bring myself to start the process.
Let’s face it – I need the chair. I wobble. My legs are unsteady. My lower back bows out uncomfortably, a byproduct of my body’s feeble attempt to maintain a center of gravity. I don’t want to wait until the day I fracture my tibia in a fall, and have no choice but to use a chair. I want to ease into it. I need to ease into it, for my own acceptance. For my own sanity.
I’ve written about my struggle in accepting the need for a wheelchair before and won’t belabor the point here. I’m not necessarily worried about the stigma associated with being in a wheelchair. I’m at peace with it and look forward to the freedom it provides, although I’d be lying if I said I’m looking forward to the experience as a whole.
What I am struggling with now, however, is the notion that once it happens, there is no going back. I can’t try a power chair and say it’s not for me, then never use it again. It’s not that type of disease. I can’t preserve strength through sheer will and by refusing to use a chair. Until the day there is a cure or an Iron Man suit I can use, the chair is the only game in town. It will be the challenge of challenges, the ultimate test of my faith and what I’ve learned about resilience on this long, arduous journey. But I can’t avoid it. Because of my hesitation, I have held off on trying a power chair all this time.
And then it happened. Finally.
Before attending the MDA Clinical Conference this past March, I had asked MDA for a scooter I could use at the conference in the near-guaranteed scenario that I’d flip out when my dad ignored my directions while pushing me in my manual chair. Like clockwork, by the end of the first day we were already butting heads.
On the second day, we went into a side room near the MDA kiosk to pick up my scooter. Staring back at me instead, however, was a red power wheelchair. No, I can’t sit in this, I thought. Not yet. I had always believed that I would need to ease into the thought of using a chair before I’d be ready to give it a try. This? This was pulling off the Band-Aid. Considering that my parents and three MDA staff members were waiting for me to give a yes/no on whether or not I wanted to use the chair, I let out a deep sigh and said yes. It was time.
My dad picked me up and plopped me down in the power chair. It felt comfortable, which I did not expect. It turns out it was the same chair used by the MDA national ambassador Justin a few hours prior, which might have made it more comfortable since it had already been broken in.
I turned the chair on and the control panel lit up in red, yellow and green. It was fully charged, ready for action. I pressed forward timidly on the joystick, and before I knew it, I was off.
I expected to lurch forward in a herky-jerky fashion until I got used to the controls, but it was a smooth ride. I passed between my parents, left the room and headed for the main atrium. There were still sessions taking place in the ballroom, so I had time and space to give the chair a test drive before I had to weave in and out of foot traffic. I ramped up the speed and drove down the hallway, then used the joystick to turn around in a 180. I can do this, I thought. Although I wouldn’t want my real chair to be red in a million years, at that moment I cared more about the fact that I was moving free and independent. Finally.
As I drove, I realized that this was the perfect time to give a power chair a try. It was a muscular dystrophy conference, after all. Everyone would expect to see a patient in a wheelchair at the conference and not think twice about it. It was a far cry from the day in April 2013 when I bought my forearm crutches. That day, I sought out the stares of strangers on the sidewalk, itching for one of them to give me a dirty look so I could have an excuse to release my pent up rage.
Before I could re-enter the ballroom to catch the end of the session, I had one more hurdle to clear. I set the chair on max speed and high-tailed it over to the windows, where the reflection would be easy to see with the sun tucked behind the clouds.
As I approached the windows, I could see myself in the distance getting closer and closer. Ten feet away, I could start to make out distinguishing features. Two feet away, I could see my face. When I stopped the chair, I gave myself a once-over.
Part of me wanted to mourn the reflection in the window. How, after ten years of symptoms, I had finally gotten to this point, stuck in a seated position for perhaps the rest of my life.
After a few seconds, however, a funny thing happened: I was bored. The moment wasn’t nearly as emotional as I had expected it to be. It was just another moment, in a series of up-and-down moments, on my patient journey. Looking back in my reflection was a face that has already been through so much, and still has so much left to accomplish.
I find that weeks quickly turn to months when I procrastinate writing blog posts. It’s been over a month since my last post, but at least this time, I have a good excuse: I’ve been busy! And this excuse involves several speaking and writing opportunities, which is even better. If I’m going to temporarily neglect my blog, it better be for something worthwhile, and everything in the last month falls into that category. I figure I’d let you in on what I’ve been up to.
It’s funny – most of the opportunities in the last month popped up last minute. Although being unemployed has its downsides, this time off has at least given me flexibility, which has allowed me to say yes to things that I otherwise would have turned down.
It all started in late February. As I mentioned in my previous post, on February 22nd I had the opportunity to appear on a local morning show to promote a Rare Disease Day event taking place at Quinnipiac University. I wouldn’t call myself a TV star by any stretch (although the bar has been set pretty low these days so maybe I am?), but I felt like a natural in front of the camera. As I talked to the host, it didn’t sink in that I was being watched by eyeballs all across the state. Looking back at the video, I was impressed by how comfortable I looked, which is a major change from my demeanor even a couple years ago. I don’t mean that in a self-congratulatory way – just that I used to be realllly nervous. Like, voice-cracking-from-nerves nervous.
This is a continuation of my post from earlier in the week, which you can find here.
In Malcolm Gladwell’s famous book, Outliers, he talks about several factors that set high-achievers apart from the rest of the population. One of the main takeaways of the book is something called the “10,000 Hour Rule” – basically, anyone who has ever become an expert at anything has needed to immerse themselves in a task for at least 10,000 hours. This holds whether you’re the Beatles practicing to become the greatest band of all time, or Bill Gates learning to program a computer.
Although the premise has been the subject of intense debate, what is beyond argument is that the more you practice or experience something, the more of an expert you become. It’s rather straightforward.
Assuming the 10,000 hour rule is mostly true, I boldly assert that I am an expert at being a patient with muscular dystrophy. It’s an odd thing to say, but ever since it took over my life ten years ago, it’s always been on my mind. It has changed me physically, emotionally and spiritually. Many of my experiences cannot be adequately explained to the general population, no matter how much someone wants to understand.
My life seems to be moving in fits and starts these days. Two steps forward, one step back.
If you have been following my journey for any length of time, you know this is nothing new for me. It comes with the territory of living with an adult-onset muscle disease. Pick your favorite metaphor – life with this disease is a roller coaster, a series of peaks and valleys, a twisting and turning road. Left, right, up, down – the path is never straight or level. The lack of continuity is often maddening, and always frustrating.
I’ve learned how to keep a level head through it all, but sometimes, life can be too much. Sometimes, no matter how hard I fight, I have to admit defeat. Not a lost war, but a lost battle.
The other day, as I was typing away on my laptop, trying to write a chapter in my book, the “F” key detached for what must have been the hundredth time. Somehow, the underlying pins broke off about a month ago, and, rather than spend $300 to have the entire keyboard replaced, I have been toughing it out ever since.
Enraged, I was tempted to take the key and throw it across the room, but knew that if I did that, the key would win, and I would have to avoid any words containing “F” for the rest of the book. Try to write a paragraph without the words “of”, “if”, “for”, or “from”. It’s not gonna happen.