Tag: West Hartford

Reflections and Resolutions

On By Chris AnselmoIn Through My Eyes5 Comments

(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.

A.C. Petersen Farms

On By Chris AnselmoIn The Reluctant TravelerLeave a comment

Quick tangent: I am all about using acronyms when possible. I was originally going to preface this title with “The Reluctant Traveler”, in order to distinguish it from my regular posts, but it felt too wordy. Then, I was going to call this “TRT: A.C. Petersen Farms”, but according to Google, “TRT” stands for Testosterone Replacement Therapy, which would be a rather odd thing to associate with my travels. You might forget TRT stands for that but I never would. Needless to say, I will not be using a preface, and will just tag these posts under “The Reluctant Traveler” instead.

Now to the topic at hand. Recently, I had the pleasure of eating at one of my favorite childhood restaurants in West Hartford – A.C. Petersen’s. This landmark has been around in some form for over 100 years, occupying its current location on Park Road in a beautiful art-deco building. I grew up coming here, and it was nice to be back. It brought back a lot of memories from childhood – a much simimg_2257pler time.

My parents and I came here mid-afternoon, after running errands and driving around most of the day. It turns out we were the only customers in the restaurant at 4pm which, for two retirees and this unemployed 30-year old, meant dinnertime.

It was a nice, peaceful break to our hectic day, and best of all, everything was just as I remembered it. The kitchen counter and its round, cushiony seats welcomed us when we entered the front door. Overhead, the old, trusty sign showcasing the restaurant’s dozens of ice cream flavors rotated slowly, still kicking despite its age. To our right was the main dining area, completely unchanged, with dark brown walls and long tan booths in the middle aisle that can sit an entire party of children. Late afternoon sunshine poured through the windows on the right, illuminating the window seats where I’ve spent many a time gazing out at the streetscape while eating ice cream. There was a comfort to this familiarity that I hadn’t felt in a long time.

img_2258The menu, however, was a little different – more options than I remember, but then again, more options is usually a good thing when it comes to food. After carefully weighing the pros and cons of several sandwiches, I ended up getting the tuna club. My mom followed suit with a tuna sandwich and my dad ordered an omelet. As we were the only customers, the food came out quick, and like any respectable diner, the portions were enormous.

Since there was no one else in the restaurant, I didn’t feel weird taking pictures of the interior. However, I still – and always will – feel weird taking pictures of my food, so sadly, no pictures of my meal here. Just imagine a tuna sandwich on top of a tuna sandwich, held together with a toothpick, and that’s what my tuna club looked like. Besides, any time spent taking pictures of my food would delay eating, and I was starving. I devoured the sandwich and the curly fries (seriously, what’s better than curly fries?) in minutes.

Like any responsible adult, I made sure to leave room for ice cream. I ordered the chocolate peanut butter cup ice cream, one scoop instead of my usual two, doused in whipped cream and hot fudge. I don’t usually eat like this anymore, so by the time I was done I was ready to be carted out on a stretcher. It was worth it!

Leaving the restaurant, I was thrust back into the present. The brick Park Road sidewalks aren’t the best for someone like myself, since it’s tough to gauge where there are uneven bricks, and the gradient of the sidewalk can be deceiving. I nearly wiped out walking to our van, but stopped myself in time. I may be living in a perpetual state of change, but it is always nice to have a place like A.C. Petersen’s in your neighborhood that has stayed the same over the years, providing a beacon of comfort and stability. Hopefully it won’t be several years before I go back again.

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Ok I lied. One food picture.

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Fleeting Gifts

On By Chris AnselmoIn Through My Eyes1 Comment

The holiday season is still my favorite time of year, although the reasons why have changed. When I was a kid, I would eagerly count down the days until Christmas, then on Christmas Eve, I would lie awake all night in anticipation of the coming morning. I rarely ever slept. I would think about all the presents Santa was going to leave under the tree and it filled me with excitement.

Once, I tried to convince my sister to sneak down with me at 5 am, but that idea was angrily shot down. Unlike me, she was able to sleep the night before. I was so impatient. I loved ripping open my gifts and leaving the floor strewn with wrapping paper and boxes. I was like a mini tornado. Life was simpler back then.

Just like everything in life though, things change as you get older. In my wise age of 29, I have a much greater appreciation for the true meaning of Christmas. I am proud that I don’t get caught up in manufactured holiday fervor. That’s not to say it’s all bad – I do enjoy the decorations and lights and ugly sweaters. But there is already enough stress in my life – worrying about getting the perfect gift for everyone is not something I choose to dwell on, not to mention navigating the rabid crowds at the mall fighting for every last deal. I hate crowds, especially now that I have balance issues and can get knocked over easily.

In the past it was toys that would bring me the greatest joy; now it is the selflessness of others. Maybe I am more aware of these stories of giving now that I am older, but it seems that they are all over the news these days. That is fine by me – they help to offset the awful events in going on in the world and serve as a nice counterbalance.

The holiday season is the time of year when we are reminded that society still has redeeming qualities. Sadly we need to be reminded of that from time to time. For example, in New Haven, a few days before Christmas, a pile of toys meant for underprivileged youth were stolen from a police precinct (how that happened I have no idea). Parents and volunteers were momentarily devastated, however the community (especially Wal-Mart) came to the rescue and more than made up for it by providing the financial resources necessary to repurchase the gifts and then some.

I could hear these stories all day. In a world filled with strife and hate, it is good to be reminded from time to time that the overwhelming majority of people are kind, gentle-hearted individuals.

That’s what the season is about, and where the true joy lies – showing kindness to others. In short, it is people that make the holidays special, whether it’s being generous towards those less fortunate, or enjoying company with the ones you love. Toys are fleeting and grow old quickly. Love is enduring.

Sadly, that’s what makes this particular holiday season so tough – my aunt passed away suddenly last Monday, four days before Christmas.

My Aunt Gail (we called her Auntie) never wanted anything for herself, and was always generous and giving to others. I never heard her utter a bad word about anyone, and there was not a malicious bone in her body. Her loss has created a void in our family that will not easily be replaced.

Compounding the sorrow, this isn’t the first relative to pass away in my family around Christmas time. My cousin passed away from a heart attack eight years ago, a week before Christmas, and other relatives have died near the holiday and shortly after the New Year. My family seems to take a disproportionate number of hits this time of year, which has gradually made this a bittersweet season for us all.

It is tough, no question. But it brings into focus just how important family is, and how we should never take anyone for granted. Toys are great when you are a kid, but when you grow up, you realize that the best gifts in life are those that will someday be taken away, long before you are ready to let go.