Category: Uncategorized

More of Me

On By Chris AnselmoIn Uncategorized2 Comments

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.

Continue reading “More of Me” →

Happy Thanksgiving!

On By Chris AnselmoIn UncategorizedLeave a comment

Hi everyone!

I just want to wish a happy and relaxing Thanksgiving to you and your family. Unless you are in charge of the food or despise your in-laws. In that case, my condolences.

I’ve had some writer’s block recently, but figured I’d write a quick post and provide a few links and updates:

  • My travels have officially wound down for the year. In 2019, I attended conferences in Orlando, Philadelphia, Chicago, Boston and two in Washington, DC. We drove to all of them! Which ties in well with why I was in DC. In October, I spent 2 weeks in DC attending both the MDA Public Policy and Advocacy Confernce and the NORD Rare Summit. The MDA conference was all about policy, and one of the issues we discussed at length was air travel accessibility (or lack thereof). I wrote about my experience at the MDA conference here.
IMG_1323
Ah yes, I signed a photo release form. Fortunatley, this was a good picture!
  • Recently, I was profiled on the American Neuromuscular Foundation’s website. Also got the chance to shamelessly plug the work of my friend Monkol Lek.
  • Rather than write a new list of all that I’m thankful for, here is my list from last year. It is still relevant today, although this time I’d rank the socks and space heater higher. God. Then family and friends. Then warmth.
  • Speaking of lists, I have updated my list of Role Models, which was about a year out of date. I know there are many more to add, but I am about ready to take a nap and my short-term memory is MIA.
  • My friend and former boss Adrienne Harper founded an organization called Bundles of Joy (BOJ), in Westchester County, NY. They are doing great work! If you are looking for an organization to donate to this holiday season, BOJ provides essentials like diapers and clothing to vulnerable families in the area. So many families are in need of the basics, and just a little help can make such a difference in their lives.
  • This article about friendship really resonated with me. Certainly got me thinking about my own friends and how I can be a better friend.

 

Happy Thanksgiving, from the lurker.

(Seriously though – where are you supposed to hang up a giant photo of yourself?)

IMG_1416

The Whole Story

On By Chris AnselmoIn Through My Eyes, Uncategorized3 Comments

Over the past few months, several people have asked me if I am going to write a book about my patient experience. Although my natural, self-effacing reaction is to think that I am the most boring person in the world, when I take a step back and assess the last eight years of my life, I realize that I have been through a great deal physically and emotionally. There is a story in there worth telling, even if it only resonates with a niche audience.

The truth is, I’ve always wanted to write a book, but I never thought I’d write a memoir. I’ve always had fictional stories running through my mind, but it wasn’t until recently that I considered writing the most truthful story I know – my own. I have been hesitant to get started, because the task seems so, enormous. Writing a book is an endeavor not to be taken lightly. It will be time-consuming, and will require a healthy dose of patience mixed with frustration, as I try to properly convey complex feelings. It will take me back to times that I’d rather forget, and experiences that still send a shiver down my spine.

I have been hesitant to get started, but I’ve been thinking a lot about it, no question. Recently, however, I got the final nudge I needed to decide that yes, this is something that I am going to do, no matter what it takes.

The final straw was a memoir I read this past week, When Breath Becomes Air, by Paul Kalanithi. It is the story of a 36-year old neurosurgeon coming to terms with a diagnosis of Stage IV lung cancer, after spending a career at the intersection of life and death. The book made a tremendous impact on me, and judging by its success (25 weeks and counting on the New York Times Best Seller’s list), it has made an impact on many others as well.

The way he told his story – honest, raw, vulnerable – left an impression. That’s the power of storytelling. Although my disease is not life-threatening (thank God), When Breath Becomes Air forced me to think about my story – what I wanted to tell, and how I wanted to tell it.

So that’s what I’m going to do: I’m going to write a book. It’s an exciting thought but also one that I will need to repeat over and over again to keep myself on track.

That’s the caveat – I am not always the best at following through on things. It’s a sad truth that annoys me every day, but is part of my track record. For example, I remember when I started this blog I was adamant that I would post every few days. Didn’t happen. I told my entire business school class at orientation about the screenplay I was writing. Never finished it (or to put a more positive spin on it, I am waiting for it to write itself). Writing a book is a process; a long, arduous process. I can easily see myself getting discouraged and abandoning it halfway through. I hope that’s not the case, but it can’t be discounted.

If I finish, sorry, when I finish, will it be a Best Seller? Although many people are motivated to write a memoir for this reason, let’s face it, it’s highly doubtful. Success, though, should never be about books sold, especially when you are writing your own story. Instead, a true barometer of success should be in the number of lives positively impacted. I don’t pretend to have the most inspirational story in the world – that’s something I’ve always said – but judging by the reaction to my writing and my public speaking, I have at least figured out how to tell it in a compelling way. My experience is going to resonate deeply with some, and it might just be a good, casual read for others. Some will read a few pages and abandon. I’m ok with that.

But let’s not get too carried away daydreaming at the moment. I can’t start dreaming about who will read my book if I don’t write it. I have to break it down into manageable pieces, into intermediate steps. How will I finish the story? Should I self-publish or hire a literary agent? Those are questions for another day. My first goal, right now, is to get my story – the chronological bare bones of my story – onto the computer. Then I can expand on some events and cut out others. Before I know it, a story with a coherent theme and structure will begin to take shape.

Baby steps.

History Lesson

On By Chris AnselmoIn Through My Eyes, UncategorizedLeave a comment

This has certainly been an interesting time in my life. The last four months – heck, the last sixteen months – have been a complete blur. That is business school after all. That’s what everyone told me would happen. The last sixteen months have been a whirlwind of classes, exams, social events, and conferences. It has been full of sickness (thankfully not norovirus), weakness, laughter, stress, exhilaration and frustration. I even became a New Yorker for a summer.

Through it all, I have managed to stay afloat, although each semester it seems to get tougher. I remember back in September it was especially harrowing, so much so that I wondered how I would ever make it to winter break. Well, here I am – battered, bloodied, but otherwise unscathed.

When I was home for Thanksgiving I was almost through the madness, but faced another two weeks of final exams, papers and presentations. Thankfully, I still took some time to read for fun. I am a huge history buff, especially the Civil War. My mom brought down a few books I had on the subject that were collecting dust on a bookshelf. They provided a welcome escape.

One book was on the battle of Shiloh, one of the bloodiest battles of the Civil War. It was 350 pages, but I flew through the book in no time. It was fascinating to think that the Union army under Ulysses S. Grant could be caught so off-guard by the Rebels. The situation got so bad on the first day of battle that they were nearly driven into the Tennessee River and forced to surrender.

What Grant did next helped motivate me to think of my challenges in a new light. His army was routed on the first day, but it was not defeated. There is no question he shares a lot of the blame for being unprepared in the first place, but his reaction to his circumstances helped change the face of the battle, and ultimately the war. Instead of retreating across the Tennessee as his subordinates pleaded, he decided to fight back and surprise the enemy the next morning (it’s always an easier decision when you receive overnight reinforcements).

The Federals surprised the Confederates and drove them out of all the land they conquered the day before. By the end of Day 2, they had recovered all their lost camps. The cost? Over 23,000 casualties. The Battle of Shiloh was vicious, but it showed the power of keeping cool when everything is going wrong, and of taking bold risks when the situation dictates prudence.

Now, I would not equate what I am going through to war, not in the least. But it is a struggle. Reading about the battle, I almost felt like I was being pushed relentlessly back by adversity to the brink of failure. I had no choice but to respond. I needed to complete my classes. I needed to network and find a job. Failure is not an option for me. I had to push back, and thankfully I was able to. Now I am on break and can rest for a month, although the struggle is far from over.

That’s not to say the last four months have been all sour grapes. In fact, this period of turmoil has been instrumental in forcing me to think about what I really want to do in life. Not what types of jobs I should be getting with an MBA, but what I really want to do. A lot of the jobs posted I haven’t been able to get my heart into, even though they are great positions. Through my circumstances, I have come to learn and to appreciate that I am on the road less traveled, as Robert Frost would say. I have been given quite a unique hand in life. Thankfully it could be much worse, but my disease is an unrelenting nuisance.

Because this condition is so rare, oftentimes I feel like I am alone. I do my best to explain my situation to others, but I still feel like there is a disconnect that can only be bridged by having someone walk in my shoes, and I wouldn’t wish that upon anyone. The only compass I can rely on is the one inside of me. There is no blueprint for how I should live my life with this disease. Only anecdotes.

Although different, I have come to realize that although my circumstances have their disadvantages, they also have their advantages. My disease has lit a fire in me to make a difference in the world. I could easily see myself, without this disease, living a safe, comfortable life. I probably wouldn’t have even gone to grad school. There is nothing wrong with a safe, comfortable life – that is a blessing to have in this day and age. But there is something hard-wired into me that seeks a different life. It’s like I have this burning desire to do something no one else has done. I guess that makes me an entrepreneur, but I don’t feel like I am one in the traditional sense. At the end of the day I want to spend my time doing something that has a true, tangible impact on people’s lives, using my creativity to tell stories and better the lives of those who are in need of inspiration.

How this will manifest itself in my life I have no idea. Should I be a speaker? A writer? All/none of the above? I don’t know yet. I am letting the process play out while being proactive. I have my first speaking engagement in February. If it works out, it may lead to many more, and I may have my answer. Whatever the answer ultimately is, I will be comfortable with it. Long ago I stopped questioning my purpose in life, as the dots seem to be connecting every time I look back. I just have to be patient, and as I’ve said before, trust the journey will take me someplace worthwhile.

And hey, if the road gets bumpy, it never hurts to be reminded that when you are up against a river, you still have what it takes to fight your way back.