A Quick Life Update

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.

Book Review: Living Out Loud, by Craig Sager

Last December, I wrote about the passing of long-time sports commentator Craig Sager. I grew up watching him on TV, and I always enjoyed both his pointed questions and his fancy, often colorful, wardrobe choices. He lovingly brought fun and wit to an otherwise monotonous profession. Sager was synonymous with The NBA on TNT, so when I found out that he had lost his battle with leukemia (if you can call surviving three bone marrow transplants, working in-between treatments and remaining positive to the very end “losing”), it felt like I had lost a friend.  Continue reading “Book Review: Living Out Loud, by Craig Sager”

Metamorphosis

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.

Continue reading “Metamorphosis”

A New Life for an Old Friend

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.

Continue reading “A New Life for an Old Friend”

The Unexpected Joys

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.

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My article on the CommonHealth website.

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.

 

Reflections and Resolutions

(Author’s Note: I was originally going to write this post before the new year, but got a little distracted by this bald eagle webcam and college football…it happens.)

I always used to make New Year’s resolutions, but this year, I’m just not feeling it.

It is quite an interesting phenomenon if you think about it. Every January 1st, millions of people around the world pick something in their lives that they vow to improve. We see this one day on the calendar as a clean slate, a source of hope and renewal, just because it is day one.

Every once in a while you hear a success story. For example, I know of someone whose New Year’s resolution was to lose weight, and lo and behold, they lost 50 pounds. For the rest of us, however, more often than not, resolutions end in failure.

I know that has been the case for me. That’s not to say making a resolution is pointless. There is no shame in sticking your neck out there and attempting to improve some facet of your life. In fact, it should be celebrated! I’ve merely come to the conclusion that I’d rather not set myself up for the inevitable failure and disappointment.

This year, instead of making a New Year’s resolution, I decided to take a look back at 2016, reviewing lessons learned while celebrating my many accomplishments that might otherwise fade into obscurity without proper reflection.

2016 was a unique year for me, full of highs and lows I’ve never experienced before. Above all, it was a year of transition. As someone who likes planning and structure, I found myself begrudgingly surrendering to forces outside of my control.

We’ll start with the lows, to get them out of the way. After graduating from business school this past May, I still haven’t found a full-time job. I have been blessed with two great part-time opportunities that have kept me afloat these past few months, but the ultimate goal has proven elusive. It weighs on me every day. Financial insecurity, especially with a disability and with student loans breathing down my neck, keeps me up at night. Thankfully, I planned for this possibility, and I take full responsibility for the situation I am in, so I will rise above it.

Besides, everyone despises job hunting. Repeated, unrelenting rejection is just plain miserable. Through my circumstances, I have come to know rejection quite well, and have learned to harness it into bigger and better opportunities. But even I have my limits. Constantly being rejected for a job, or worse – not even getting back a response – is incredibly frustrating. I just have to keep grinding. I know that the perfect opportunity awaits me out there, and I’m telling you, when I finally do get hired, I will give everything I have to the company lucky enough to hire me.

But I must also confess, I have been picky with my job search. The truth is, I just don’t have the energy anymore to choose “any job”. It has to be the right fit, an opportunity where I can harness my creativity and communication skills, for a company whose mission I believe in wholeheartedly. The role also has to pay well enough to support the additional expenses that my disease will inevitably incur – such as an accessible apartment, personal care attendants, adaptive equipment, etc.

For the time being, I’ve moved home with my parents in West Hartford. I love my parents, and love being able to see them regularly, but we are all in agreement that I am destined to be on my own. I’ve been in the Boston area the last 12 years and love the city to death. It is where I belong. Despite the move, I am fortunate that I have a home to come back to, and the support that I need to stay afloat during this challenging time.

The greatest challenge in 2016? My weakening body. I lost a tremendous amount of strength last year. I finished school just in time, before my disease really started to affect my quality of life. I don’t think I would survive school in my current condition, at least, not without taking some time off to obtain additional resources. It certainly wouldn’t be impossible, but it would be significantly tougher.

For example, at the beginning of 2016, I could get out of a chair without assistance from another person. Now, it’s impossible. Unless I am sitting on a high chair, I need someone to bear hug me to get me into a standing position. At the beginning of the year I was able to go up small steps and inclines with relative ease. Now, it’s a treacherous affair, given how much upper body strength I’ve lost. Declines are just as difficult. Without upper body strength, my crutches become useless if my shoulder gives out.

I’ve also fallen several times this year, and on two occasions, injured my foot. One fall required x-rays; fortunately they came back negative. The pain lingered for weeks, however.

Look, I know what my future holds. As soon as I lock down a job, figure out where I am going to live, and get a few other things squared away, I am going to buy a wheelchair, assuming of course that an injury doesn’t force my hand.

It is time.

I am past the point where I am afraid of what others will think of me in a chair. In fact, I welcome the freedom a chair will provide me. Sure, there is a laundry list of considerations and questions that remain related to how I will adjust to living in a wheelchair, but, as a whole, I know that it will improve my quality of life. I don’t know what it’s like to walk a few blocks care-free anymore. If I can get that freedom back while rolling down the street, so be it.

So yeah, there are a few things on my mind. But you know what? 2016 was also one heck of a year. To recap:

  1. I graduated from Boston College’s MBA program in May. At graduation, not only did the pastor read a quote from one of my blog posts, I also received a standing ovation when I received my diploma, which was completely unexpected (and also flattering). I nearly fainted!
  2. My time at BC allowed me to make many, many close friends with classmates and faculty, friendships which I will cherish the rest of my life.
  3. I went to Texas. I have never been to Texas.
  4. I met my nephew Connor for the first time in August. Although born in October 2015, I was not able to see him until the summer. He is a bundle of joy. I also got to spend a lot of quality time with my niece Sophia.
  5. I finally committed to writing a memoir of my experience with Miyoshi Myopathy. Best of all, I have followed through on this commitment and am making substantial progress. I hope to have a first draft done in early 2017.
  6. I had a piece published on the Boston Globe’s STAT website in February. I was one of the first patients to ever be featured in their “First Opinion” section.
  7. I had the honor of speaking at several exciting events and locations, including:
  • The 2016 Rare Disease Day celebration at the Massachusetts State House (~400 people)
  • The Muscular Dystrophy Association’s “Fill the Boot” camp at Mohegan Sun Casino (~500 people)
  • “Speak Up” storytelling event at Real Art Ways, Hartford (~200 people)
  • The Jain Foundation’s patient conference in Dallas, Texas (~75 people) – here’s the video
  • Boston College “Bounce Back” resilience panel
  • Boston University Medical School genetic counseling class
  • Northeastern University Student Alumni Association club meeting
  • St. Thomas church youth group in West Hartford

Looking back on that list, I must say that I am not good at celebrating my accomplishments. I dismiss them too easily, mainly because I am never satisfied. Maybe that will be my resolution this year – celebrate when things go well! I dwell so much on the negative sometimes, that I forget to also savor my successes. I deserve to give myself a break from time to time.

2016 was, in totality, a very good year. Maddening and frustrating? Yes. But I made significant progress, providing a foundation for success in 2017. Whether I get a day job or live a life as a writer and traveling motivational speaker, I will not stop until I am at a place where I know that all of my struggles have been worth it.

All in all, 2017 is going to be an interesting year. I have no delusions that there will be more turbulence ahead. But I must remember, against all odds – after years of wallowing in self-pity and hating what my life was becoming – I made it this far.

No matter the uncertainty in my future, I must find a way. That is the only resolution that matters.

Craig Sager

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.