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.
I want to wish everyone a happy and healthy New Year! 2017 was interesting to say the least. May 2018 bring you joy, happiness, and a whole lot of laughter. (And more eaglets.)
Personally, 2017 has been an up and down year, although I’m sure everyone else can say the same. Like any year, there were exhilarating highs and frustrating lows. (Case in point, my “F” key is broken and I’m trying to avoid any words containing the letter “F”, but I’m failing in fantastic fashion.) Overall though, I can’t complain. I made it through another year. I still have my family, my friends, and my health, and I’m still walking on my two feet.
I just wanted to send a quick note that there will be a couple minor tweaks to Sidewalks and Stairwells in the coming days. I’m going to be playing around with the formatting, adding a few links to recent works I’ve written, that sort of thing.
What I’m most excited about though is the addition of a long-form section with the original title, “Long-Form”. This is a placeholder name, but then again, it may be permanent, I’m not sure. Either way, I want to differentiate between my blog posts and some of my longer works. I have a couple pieces that have sat collecting dust on a website that never got off the ground, so I figured I’d post them here instead.
My first long-form post I’m going to share is called “On Eagle’s Wings”, about my friendship with my late friend and coworker Carly Hughes. It is a very personal piece, one that was not easy to write, but is something I’m proud of. I’ll post that Monday.
In the meantime, I hope everyone has a great weekend!
So it turns out I may have jumped the gun a bit on my last post.
About a minute after hitting publish, I realized that I had forgotten a few recent news items, including, oh, I don’t know, a fundraiser that I helped organize for the last six months. My 31-year old mind is not what it used to be. But I can still name the 50 states and all the presidents, so at least I’ve got that going for me.
Since this is my own site and I answer only to myself, I can undo my omissions with a simple follow-up post.
First and foremost on my list of forgotten updates – the rousing success of the 4th annual Strength, Science and Stories of Inspiration fundraiser!
For those of you who are not familiar with the event, SSSI (as we call it for short) is a fundraiser that aims to bring together stakeholders in the Boston-area muscle disease community for a night of entertainment, storytelling and networking. It was started in 2013 by my co-organizers, Sharif Tabebordbar, Albert Almada and Eric Wang, muscle disease researchers who each have a family member with muscular dystrophy.
This year’s event was the third SSSI I have had the privilege of helping to co-organize, and it was our biggest crowd yet – close to 600 attendees! The night was chock-full of laughter and emotion, and built on (or is it upon? I can never figure it out) the success of our previous events.
We had two great patient speakers, Rob Besecker and Monkol Lek, and for the second year in a row our headliner was talented comedian, friend, and ALS family member Max Amini. In addition to our entertainment, we also awarded our very first research fellowship to Maya Maor Nof, a talented postdoctoral researcher at Stanford University. This fellowship has been a dream of ours for several years, so to see it come to fruition was both exciting and emotional.
Overall, it was an exhilarating night, one that I recapped in an article for the Muscular Dystrophy Association (MDA) a couple weeks back.
We announced at the event that we are raising money for next year’s fellowship, so if you’d like to contribute, we are still taking donations! Here’s the link: https://www.gofundme.com/sssi2017
My second update pertains to another MDA article. I was recently interviewed in MDA’s quarterly magazine, Quest, about searching for a summer internship while living with a disability. It’s a topic that I know very well, having dealt with it two years ago. I’ve talked to other patients with MD who have wondered if they could realistically go back to school. I wanted to share my story about my journey so that I could help others believe in themselves that yes, it is possible. School, internship, all of it.
It will require some extra planning, and it won’t be smooth sailing, but it can absolutely be done. In my internship experience, I relocated from Boston to New York City for a summer. Part of the reason I try to push myself is so that later on, I can use the knowledge gained to empower others to do the same thing. So many others have helped me in the same way.
And for my last update – also involving MDA (as you probably can tell by now advocacy is a major part of my life) – I was a last-minute keynote speaker on October 7th!
It was a financial summit sponsored by MDA which took place at the Marriott hotel in Quincy, Massachusetts. The aim of the event was to provide financial advice and planning for MDA families, as this disease can be a burden on a family’s finances. Originally, the MDA national goodwill ambassador, Joe Akmakjian, was supposed to be the keynote, however he got sick and was unable to attend. I was asked Thursday afternoon, and a day and a half later, I found myself in front of a room full of MDA families.
It was a whirlwind day to say the least. Overall, it was an interesting experience – I was told I could just talk about my patient story, but it was a financial summit, so I knew I had to twist my usual story a little bit and talk finances, and how I was able to budget out for things like adaptive equipment and business school.
Although it was last-minute, I was glad to impart some financial wisdom on the crowd, and I know my dad was proud, since after all, he was the one who imparted the wisdom on me in the first place. Without my dad, I don’t know if I would have had the same financial discipline. Well, maybe I would have, but it would have taken much longer to learn.
When I got home Saturday night, I was whipped. The fatigue lasted a couple days, into Tuesday. It was only a week after the Strength Science fundraiser, which also left me tired for a few days. Believe it or not, it can be tiring sitting in a wheelchair all day!
All in all though, it’s been an eventful few months, fatigue aside. As long as I’m able to do all this (without impacting my day job of course), as long as my parents are willing to be my chauffeurs and caregivers, I will continue to stay active in the muscle disease community – writing, speaking, whatever it takes.
I don’t do well sitting still. I think you can tell by now.
Somehow I’ve allowed myself to go nearly three months (!) without writing a new blog post. Shame on me. I feel like I’ve started and stopped on this post ten times alone.
I have no particular topic in mind here other than updating you on what I’ve been up to lately. The last couple months have been a whirlwind. Mostly good, but some not so good.
First the good – I finally have a job! I was offered a full-time role at the company I’ve been working at part-time the last six months. I will be working in product management, focusing on creating new data products, which is exciting. If writing is my first love, data analysis is my second.
I am very blessed to have this opportunity, and it will enable me to have more structure in my life. Best of all, I can work remotely in the interim until I get my legs under me (figuratively, of course). Eventually, I’ll make it back to Boston, but now that winter is approaching, it makes sense to wait until spring. I miss Boston so much, but at least now I see the light at the end of the tunnel.
Not that living at home with my parents is a bad thing, but yeah, I’m 31. It’s time.
Another benefit of my job is that I can plan things out now – like my budget. Now that I know what I’ll be making and what my insurance situation is, I can start planning out how to purchase additional adaptive equipment.
Ah yes, adaptive equipment. Now on to the challenges – the not so fun part.
In the last couple months, in the time since my last post, I have felt my muscles get much weaker. My legs continue to get worse, although that is to be expected. It certainly is disappointing, but I’m used to it. I fully expect to be in a wheelchair in the next year or so, so leg weakness, I’ve come to accept. It’s kind of shocking how matter-of-factly I bring this fact up now, but at this point, I’m so weak, a chair would be more liberating than how I’m currently moving around.
What I’m struggling with, though, is my loss of arm strength. I am a restless sleeper, and toss and turn a lot in bed. Lately, I’ve found it harder and harder to turn over in bed, which forces me to sleep on one side most of the night, which causes my neck and hip to be in pain when I wake up. I recently bought a new adjustable bed frame (thanks new job!) which has helped somewhat, but it doesn’t make turning over in bed any easier. I used to do it so effortlessly, but now it takes three, four, sometimes five tries to successfully turn.
As the result of this, during the day my arms feel like lead. Lifting anything is getting difficult – toothbrush, cup, etc. A couple weeks ago at a fundraiser I was shaking hands and I struggled to get my arm high enough in the air. I had to use my other arm to prop up my elbow.
In times like these, I realize that I haven’t really thought as much about losing my arm strength. I have been so fixated on losing the ability to walk that I often forget that my arms are going to get worse too. What’s going to happen when I can’t lift my arms at all? How will I perform daily tasks, type on a phone, write, eat, brush my teeth, wash my face, hold onto my future child, or anything for that matter?
I know the answer. It’s unsettling to say the least. But let’s not think that far ahead just yet though.
Again, as I’ve said numerous times, I have to take this disease one day at a time and hold out hope that in the future, some device or drug will come about that will prevent that day from happening. Or at the very least, that I’ll have a plan and infrastructure in place (caregivers, equipment, etc.) that will help me. Maybe even a robot assistant.
So yeah, the bad comes with the good, the good with the bad. Never rise too high or sink too low.
On a happier note, I am feeling a breakthrough out of my writing rut. I’ve had a few post ideas pop into my mind recently, things I’ve been thinking about and fretting over, the byproduct I suppose of dwelling on my condition constantly. I’ve also found myself very nostalgic of my undergrad days. It’s hard to believe that next May will be the ten-year anniversary since I graduated from Northeastern. I am getting old.
But hey, I’m thankful for every day. And considering I spent my 20s expecting to be in a wheelchair by 30, to be 31 and still on my feet is a blessing. I’ll take it.