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 quivering voice of Carly’s mother, Irene, echoed loudly in my head.
It was November 2014, and I had just finished giving a speech to my classmates in the Boston College MBA program. The topic of my TED-style talk was my transition from ability to disability over the previous eight years of my life. Classmates were coming up to congratulate me on a job well done, yet I couldn’t shake the fact that, when speaking about my friend Carly and the impact she had on my life, I had forgotten key details of our time together.
Ever since I started business school three months earlier, I had longed for an opportunity to tell my new group of friends about my journey living with Miyoshi Myopathy, a form of muscular dystrophy that had turned my life upside down. I wanted to answer the questions they never asked me, but knew they had. More than anything, I wanted them to know that I was not always disabled, and that I was not ashamed of the person I had become.
In the rehearsals leading up to my talk, I barely mentioned Carly in my story, for fear that I would run over my time allotment. However, in the heat of the moment, in front of an audience of sixty classmates and professors, I realized that I couldn’t tell my story – especially the part about how I was able to turn my life around – without mentioning Carly. To leave her out would be an injustice.
Before I knew it, I was gushing about her bravery and how her cancer battle inspired me to reexamine my attitude toward my own disease. I knew I succeeded in conveying how she made me feel, which at the end of the day is what was important to share. But when it came time to talk about her joyful personality and the many laughs we shared, I blanked on specifics.
I realized that some of the details of our friendship – actual events that took place and conversations we had before she got sick – were starting to fade from my memory. I felt guilty, as if I had abandoned a friend.
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.
Last Friday, I found myself scribbling down notes while listening in on a work call. Every few seconds, I would jot down an action item for follow-up, with an occasional inane doodle in between. I know what you’re thinking – it’s 2017, why am I still writing down my notes? You’ll be happy to know that I use my computer (Evernote) most of the time, it just so happens that, when I want to brainstorm ideas, write down a quick list of to do’s, or take notes passively while listening in on a conversation, nothing beats pen and paper.
Which is why this latest discovery was all the more unsettling.
When I was three months old, my grandmother (“grammy” as we affectionately called her) gave me a white teddy bear for Christmas, outfitted with a matching red beanie and scarf. The bear and I quickly became inseparable, even if it took me a few months to grow to its size.
For reasons that will forever remain a mystery, I named him Bill. Not Teddy, or Buddy, or even Billy. Bill. An old man’s name. (Is his true name William? We will never know.) All I know about my thought process as a three-year-old was that I most likely chose that name at random, or based on a TV character long since forgotten.
Regardless of how Bill was named, he (it feels weird to call Bill an “it”) was far and away my favorite stuffed animal growing up, even after I lost his hat and scarf. Then again, the hat and scarf were a suffocation hazard, so maybe they were taken from me.
A couple weeks ago, I had the opportunity to have my patient story recorded by Annie Brewster at Health Story Collaborative. The end product will be a 10-15 minute audio clip chronicling my journey over the last nine years, from my first symptoms to present day. It was a fantastic experience, and I’m glad I reached out to Annie on a whim after watching her TED talk.
Towards the end of our call, I asked about CommonHeath, a healthcare blog run by WBUR, Boston’s NPR station. While researching Annie’s background before our call, I noticed that she had written several pieces on the site, and was involved with curating patient stories. I asked her if my story would be a good candidate for CommonHealth, and she said it would be.
Encouraged, I reached out to Carey Goldberg, the editor of CommonHealth. One thing led to another, and, with the help of Carey and another editor, Ginger Marshall, we decided I would write about my thought process in accepting that I needed to get a wheelchair.
It’s a difficult subject to write about. First off, it’s a heavy topic, fraught with emotion. Second, it is difficult to convey, in 1,200 words, what it feels like to come to this acceptance. I could write 10,000 words on the topic and it would be incomplete.
Difficulties aside, I am proud of how the piece came out. The title isn’t my favorite, but I understand why it is so straightforward and blunt. It clearly states what the article is about, in no uncertain terms. As an opinion piece, you are either interested in reading more, or you’re not.
It was a thrill to see my article on the CommonHealth website and the WBUR Facebook page, sites that thousands of people frequent on a daily basis. More importantly, I was heartened by the positive reaction of other patients, and how those going through a similar situation could relate to what I wrote. The truth is, I was initially reluctant to write the article, mainly because it is a touchy and emotionally-charged subject. I know how I feel about the experience, but it is difficult to put into words. What if someone takes something I wrote the wrong way, or reads into it something I didn’t intend? Despite my initial hesitation, I decided it was a risk worth taking.
The article had a good run on social media, but, like everything else on the internet, I figured it would fade away into obscurity.
Or so I thought.
Yesterday, around midday, I was checking the WordPress app on my iPhone, casually glancing at Sidewalks and Stairwells’ page views for the day. On a good day, I usually get 20-25 views on my website. I checked the app: 200 views. I wish you could have seen my face!
Initially, I thought my site was being flooded by bot traffic. Then I saw a comment on my front page mentioning they found my site via NPR, and it hit me – my post got picked up by NPR’s social media accounts.
I checked, and there it was at the top of the NPR Facebook page, which has nearly 6 million followers. This article that I wrote, partly for my own healing, was now being read by millions of people.
The comments started flooding in. I was hopeful my article would have a positive impact on people, but part of me was nervous that there might be some negative, troll-ish comments that would make me regret being so vulnerable (I know, I know, I should never read the comments section). Fortunately, there were only a couple bad ones, and they were so comically off-base that I found them more amusing than anything. You truly can never please everyone.
By the end of the day, I had over 1,100 views. Yesterday, I had 450 more. 1,500+ in 2 days. Not bad!
I have been hoping and praying for a day where my blog, my little slice of the internet, gets seen by a wide audience. I don’t want this because I want to become famous (I am an introvert after all), rather, my hope is that the more people who read this site, the more people I might be able to help. I share my story, warts and all, because I want it to resonate with others.
I am grateful for the outpouring of support by complete strangers around the world. Overwhelmingly, the response to my article was positive. Patients shared their own struggles, and readers who were not disabled valued the perspective I brought to the table. If I can use my journey, which was once an intolerable nightmare, to inspire and inform, that is a good thing.
I hope yesterday is just the beginning, the big break I have been waiting for. I am only one person, but I know the impact one person, with the right message, at the right time, can have on someone’s life. I am here to pay it forward.
This past Tuesday, I had the honor of sharing my patient story at Spaulding Rehabilitation Hospital in Boston, one of the great medical facilities in the country. In my talk, “Partnering with Patients on the Road to Acceptance”, I chose to focus primarily on my interactions with various healthcare providers over the years. Just like anyone else dealing with a chronic disease that involves a revolving door of doctor’s visits and specialists, I had many heartwarming and nightmarish stories to share with the audience.