More of Me

For as long as I can remember, I have weighed somewhere between 155 and 160 pounds. I rarely checked my weight growing up, as it wasn’t a major concern. If anything, I was frail as a kid. The only reason I knew my weight was beacuse it was part of my annual physical exam.

In the last three years, however, I have slowed down considerably. I sit in my wheelchair all day and barely walk anymore. As a result, to put it nicely, there is more of me now than there was three years ago.

My body image doens’t really bother me. I am more preoccupied with my mobility than how I look. However, as one chin became two, it is undeniable that I’ve put on considerable weight. It is concerning. In the last three-plus years, I have put on 25 pounds. That is not ideal.

There are three problems with this.

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A Weekend at the National Limb Girdle Muscular Dystrophy Conference

Three weeks ago (time flies!), I had the opportunity to attend the first-ever Limb-Girdle Muscular Dystrophy conference, which took place in Chicago over Labor Day weekend. Although everyone who attended the conference had to contend with the logistical challenges of traveling over a holiday weekend, it was well worth the frustration and hassle.

This was an opportunity too good to pass up.

The idea of having a conference for all limb-girdle patients, regardless of one’s subtype, is not a new one. There are Facebook groups with thousands of members where limb-girdle patients of all subtypes communicate with one another and share advice and experiences. Many are good friends, but have never had the chance to meet in person. Until this year, there has never been an opportunity to bring all these different patients together, under one roof, for any length of time.

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A Sense of Urgency

I reached a personal goal the other day! I finished writing the end of Part One of my memoir. (It will be a two-part book).

Only downside? My goal was to get this far by September….2018. Oops.

I am on schedule, give or take a year. Ok, ok, so it happened a little slower than I had hoped, but I had a perfectly good reason for falling off. I was busy! Busy with my job, attending conferences, going to doctor’s appointments, buying a new wheelchair, fighting insurance, getting my septum un-deviated. Although mostly it was the job. It’s a lot of work, but I enjoy what I am doing so I have no complaints there. It’s just that at the end of the day, I am usually too fried to want to write.

In the last few months, I have maximized my down time on weekends to catch up on writing. This has worked out much better than trying to write at night during the week. I am more productive writing in two days than I would have been if I forced myself to write a few hundred words each day.

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Boston

As I write this, I am back home in comfortable, quiet Connecticut. But my mind is elsewhere.

Recently, I had the opportunity to spend two weeks in Boston, my adopted home for 12 of my 32 years. To say that I was excited to visit the city for an extended period of time is an understatement. I was thrilled.

My years in Boston, from 2004-2016, were the most eventful years of my life. They formed me into who I am today.

Boston was where I went to college, worked for six years, and got my MBA.

It was where I first noticed symptoms of the muscle disease that would take over my life.

It was where I made lifelong friends and lost a dear friend.

It was where I fell many, many times.

It was where I questioned my very existence and the point of this frustrating, maddening hand I was dealt.

Most important, it was where I learned to pick up the pieces of my life and start over again.

Boston is where I grew up.

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Back to Zero

In the back of my mind is an internal clock, one that tracks the time that has elapsed since my last fall. Well, it doesn’t count the exact days (it’s not that good), but it knows that my last fall was on the Fourth of July 2018, a little more than six months ago. I remember that day vividly. I was in North Carolina visiting my sister, and after watching the fireworks on TV, I retired for the night. As I was about to climb into bed, my right knee bumped into the box spring, causing me to lose my balance and crumple to the floor. I was shaken up but otherwise unhurt.

To go six months without a fall, given my advanced weakness, is a miracle in itself. But I knew my good fortune wouldn’t last, that eventually the clock would reset one of these days, in sudden and violent fashion.

That day was Thursday.

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What I’m Grateful for This Thanksgiving

Although my life is chaotic, with its share of frustrations and challenges, on the whole, I can’t complain.

It’s been a while since I’ve done a list, so rather than write a sentimental essay to commemorate Thanksgiving, I figure instead I’d rank everything that I’m thankful for this year. Why not?

Without further ado…

Things that give me joy

18. TV shows. Outside of sports, I never really watched a lot of TV as an adult. Now that I live with my parents and have the post-dinner energy level of a tranquilized sloth, I have become a fan of many shows. I don’t have Netflix, so I watch what’s on cable. Some of my favorites: Chicago PD and Fire, MacGyver, Hawaii Five-O, The Good Doctor, NCIS: New Orleans, and of course that hot new intellectual thriller, Jeopardy.

Bonus favorite show that my mom hates with a passion: The Curse of Oak Island.

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Op-Ed in the Hartford Courant

Hello everyone! I hope you are having a great Sunday.

I wanted to quickly share an opinion piece I wrote for my hometown paper, the Hartford Courant:

http://www.courant.com/opinion/insight/hc-op-insight-anselmo-getting-up-afer-dark-times-20180710-story.html

I wrote the piece on a whim, after learning about the suicide of Anthony Bourdain, who I was a big fan of and got the chance to meet back in 2012. There is a lot of despair in the world today and I felt – I hoped – that by sharing my story, I could show others that what helped me through my struggles was not some innate desire or ability, but rather a skill that everyone has – empathy. It’s a skill worth fighting for, even in this broken world.

I hope you like it!

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Invaluable

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.

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Paying It Forward

Blogosphere,

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.

At this point, you probably have a few questions:

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Busy Busy

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.

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