Category: Through My Eyes

What If?

On By Chris AnselmoIn Through My Eyes1 Comment

Someone asked me the other day if I had studied abroad while at Northeastern. I told them I had the opportunity in my junior year but I turned it down. I had no desire to leave Boston or incur extra expenses for my parents, who were paying for my education at the time. I wasn’t much of a traveler; instead I enjoyed hanging out with friends and living in the city.

After that conversation, something began gnawing at me. What if I had known? What if I knew the challenges I would face after college?

I was diagnosed with my disease in high school, but I didn’t grasp its magnitude. I had no symptoms, so I didn’t find it necessary to do any research. I had no inclination that it would manifest so quickly. In retrospect, this casual attitude towards my condition was both a blessing and a curse.

If I knew the struggles I would experience after graduation, would I have traveled more? If that was the only decision I would be faced with, then absolutely. I would have taken the opportunity to travel somewhere – Europe, Australia, maybe even South America. I was fully-able in college, energetic and without limitations. Even though I didn’t have much money at the time, I would have found a way to explore the world while I still could. I would have appreciated that I had a narrow window of opportunity and I would have taken advantage of my mobility. Under these circumstances, I certainly wish I had traveled more.

But I don’t feel regret, mainly because I know that advanced knowledge of my disease would have had far-reaching ramifications. Had I known my condition, had I truly understood that seven years after graduation I would be falling regularly, and that I would have to purchase a scooter to travel long distances, I would have been crushed by the knowledge. It would have been too much for me to deal with while trying to remain a normal, fun-loving college student. College is the last period in your life before the real world takes away your remaining innocence. Life shouldn’t beat you down so soon.

Considering the emotional struggle I encountered when my symptoms manifested, I don’t think I would have handled this foresight very well while still in school. I would have felt like a ticking time bomb, always wondering if an ache or a pain or a feeling of weakness would be the start of my descent into disability. Perhaps I would have been so paranoid and depressed that I wouldn’t have found the enjoyment in traveling abroad.

On the other hand, maybe I would have enjoyed each day even more, and taken the opposite approach. I could have been galvanized by my impending limitations. The truth is I have no idea, and I never will have any idea. I shouldn’t go back and wonder what could have been, because the past is past. I lived the best I could with the information I had available at the time. Could I have done some more research on my disease? Of course, although it probably would have exposed me earlier to the dark reality I would soon face. Being naive isn’t always so bad.

At the end of the day, I take comfort in the knowledge that everything seems to have turned out the way it was supposed to. Had anything in my past occurred differently – earlier understanding of my condition, traveling abroad when I had the opportunity – I don’t think the sequence of events would have taken place that have put me in the situation I am in today. Any change in my mix of frustration, sadness, pain, and ultimately, determination, could have led me to a much different future. Maybe I wouldn’t have been as motivated as I am today, or I might have put myself in a situation where I fell and got hurt. Maybe I wouldn’t be walking right now. Looking in the past is counter-productive. It is trying to change something that cannot, under any circumstances, be changed. I have to be content with how things turned out, and I am.

Besides, the greatest travels are the ones still ahead of me, greater than any semester-long trip across the ocean. I do not know my ultimate destination, but I know that I am on the road less traveled.

Courage

On By Chris AnselmoIn Through My Eyes1 Comment

I woke up Sunday morning to the awful news of Stuart Scott’s passing. Although any death is tragic, his especially hurt. He was an influential figure for me growing up, as I transformed into the ravenous sports fan that I am today. Scott’s tenure on SportsCenter coincided with my coming of age. Every time I flipped over the pillow and felt the coolness against my face, his iconic catchphrase came to mind. Every time I held a roll in my hand and reached for the butter, I cracked a smile. The entertainment factor he brought to SportsCenter was unlike any other anchor to set foot in Bristol. Sure, some anchors are entertaining, but their personalities are merely an evolution of Scott’s. He was the reason they crack the jokes they do today. He was the trailblazer. Any time Stuart Scott hosted, it became must-see TV, even if SportsCenter came on at 1am on a school night.

I will remember him for the laughs he provided, but more importantly, for how he conducted himself in his final years battling cancer. Since 2007, his legacy transformed from being a source of humor to being a source of courage. Reading his obituary on Sunday, I learned that he worked out at an MMA gym in my hometown of West Hartford, CT. That brought chills down my spine. I am honored that he chose to battle back against this awful disease in West Hartford, and fought his fate in my hometown until the very end.

His ESPYs speech last year was one for the ages. Like Jim Valvano in 1993, it would be a speech that unfortunately preceded a passing a few short months later. Scott’s words inspired me that night, just like they inspired millions of others.

I have learned a lot from people fighting cancer. I hope it is a fight I never have to face. Their battle puts into perspective how insignificant my fight is every day with a muscle disease. Looking back on the blog post I recently wrote about pain, my troubles feel so small compared to what cancer patients have to go through. My situation is quality of life threatening; theirs is life-threatening. Yet, between Scott, Valvano, and other heroes of mine such as Randy Pausch and my dear friend Carly Hughes, I have shining examples of how to live life. When people are faced with a life-threatening illness, it is easy to give up. Instead, more often than not, you see someone who truly values each and every day, down to the most minute detail. Sunshine. A warm breeze through an open window. The taste of ice cream. Things we take for granted, valued to the utmost. That is the attitude of someone who has learned the meaning of life.

To fight cancer with a positive attitude is to personify the meaning of courage. Stuart Scott believed until the day he died that he was going to beat this disease, never caring to know what stage he was in, because he didn’t want to change his approach to fighting it. Carly knew she was going to win up until the final moments. It’s funny; we always seem to read that someone “has lost their battle with cancer”.

I don’t see it that way at all.

Stuart Scott would also disagree. “When you die,” he would say in his speech, “it does not mean you lose to cancer. You beat cancer by how you live, why you live and in the manner in which you live.” If you live to be 100 but you don’t live a meaningful life, with treasured relationships and genuine love, is that better than living to be 49, and truly understanding the beauty of every moment?

There are few diseases in which there is a tangible, physical cure. To cure a disease mentally is even tougher. There is no doubt that in the way Stuart Scott lived, he cured cancer in his mind.

His attitude applies to any disease, whether or not it’s life-threatening. For people afflicted with a disease, too often we see our lives through a distorted, demented lens. It is easy to let life be defined by this lens; I can attest to that. To be able to come to peace with your circumstances, and to accept that your disease is a fact of life comparable to your age, or to the color of the sky – that is winning the battle. As Valvano said at the end of his iconic speech, “Cancer can take away all of my physical abilities. It cannot touch my mind, it cannot touch my heart, and it cannot touch my soul.”

At the conclusion of his own iconic speech, Scott said something that particularly resonates with me to this day: “Live! Fight like hell. And when you get too tired to fight, then lay down and rest and let somebody else fight for you.”

He has joined the hallowed group of people who have won their battle, even if they are not here on this Earth in the physical form. On the days where I need that extra push, or feel that I can’t get through the day, they fight my disease when I am down and help me make it to the next day in one piece. They are my inspiration to keep moving forward on this bewildering, sometimes lonesome road I find myself on.

Stuart Scott has left behind many catchphrases and quotes that I will recite for years to come, but when I think of him going forward, on those days where I feel bad for myself or fall down or am in a great deal of pain, two words will stand out above all else:

Thank you.

 

 

Stuart Scott’s speech:

Jim Valvano’s speech:

The Breaks of the Game

On By Chris AnselmoIn Through My EyesLeave a comment

Over the last couple months I have experienced a series of muscle pulls that have tested my threshold for pain. The resulting discomfort affected my mood, and often forced me to stop what I was doing and lie down with a heating pad. If I happened to be in class, I resorted to pain medication, which sometimes worked and sometimes didn’t. Every time this type of pain occurs, on top of my day-to-day aches, it frustrates me to no end. My productivity evaporates into thin air as my concentration shifts from the task at hand to dwelling on the discomfort. Quite simply, my tolerance for pain is not where it needs to be given its prevalence in my life.

Pain, discomfort, soreness, aching – if you have a neuromuscular disease, you experience it all. Last March I attended the Muscular Dystrophy Association’s Clinical Conference in Chicago, and one of the speakers presented on the topic of pain and how it is often a forgotten symptom for someone with a muscle disease. Thinking of my own experience visiting doctors, it sometimes got pushed to the back burner, behind assessing my loss of strength and writing prescriptions for mobility aids. Of all the talks at the conference, it stuck with me the most, and I wrote about it in a blog post during my time there.

Pain is a tough subject for me to share my personal experience, for I always feel like I am complaining when I know full well that others have it worse. I don’t have to go far in my own life to know that.

But the pain I do experience I have to deal with better, because it exists in some form all throughout the day. From the moment I wake up in the morning, I am greeted by the unwelcome presence of stiffness and soreness. After spending hours lying down, I wake up and my body is newly stiff and sore. After rising, I limber up and shower and it temporarily subsides, but it often comes back in greater magnitude later in the day. Occasionally the pain doesn’t diminish to a level where I can tough it out and I take ibuprofen which provides temporary relief. Sometimes though, especially if the discomfort originates in my neck or shoulder, it causes a tension headache that radiates to the top of my head and sinuses, which causes my head to pound mercilessly. If I don’t catch the pain in time I am left with a thankless dilemma: take ibuprofen to ease the shoulder and neck pain, or take Excedrin to eliminate the headache. I go for the headache each time, as that ends up being the most debilitating pain.

It is what it is. I say that casually because, to be honest, it has been a part of my life for so long that I can’t remember what life was like before my tendons stretched and my joints scraped against one another. I can’t remember the last time I had perfect posture or was fully limber.

For patients with more progressive disabilities that use a wheelchair, the pain can be much worse. Imagine being in a chair all day, every day. Your muscles begin to tighten, cramps and strains develop, and you can’t go anywhere. You can’t adjust your body well enough to take the pressure off of where it hurts.

This could very well be my future, or it could not. As I mentioned before, I don’t handle my current level of pain very well to begin with. Just a little bit of pain can make me miserable, and render me unable to focus on classwork or whatever task is at hand. There are days when I’ve woken up and have felt perfectly calm, perfectly devoid of feeling. This moment of bliss, even though I don’t take it for granted, is usually shattered moments later by something as mundane as drying my hair with a towel, or getting up out of a chair. I perform the activity, then turn my head and bam, a shooting pain in my neck. I move my neck around and it’s still there. It remains with me the rest of the day, tugging at my concentration, testing my endurance and tolerance. And I crumble. It throws a wrench in my day, and I either get an excruciating migraine from the tension or am unable to do much of anything besides lie down and wait for pain meds and a heating pad to work their (temporary) magic.

Worse, part of the pain is exacerbated by fear and anxiety – the pervasive gnawing at my soul that my pain and discomfort may very well get worse before it gets better. Then there is the worry of what could happen if, the next time I fall, I hear a snap, followed by unimaginable agony. It has happened to other patients with my disease. I’ve read the horror stories of someone reaching for something on a shelf, losing their balance, and breaking a leg. Or the person who tripped on an uneven sidewalk and fractured a hip. Then there was the woman on the MDA Facebook page who, I presume in a moment of extreme frustration, posted a picture of her x-ray showing a compound leg fracture for the world to see, followed by her swollen, discolored leg after surgery.

I think about what that pain would feel like, hoping and praying that I never encounter it. I shudder to think about it – I know I shouldn’t – but I have to live with this possibility. Not only would a break like that be the end of walking as I know it, it would cause me pain that I’ve never experienced before. If I struggle with the pain and discomfort I feel now, how am I supposed to cope with a break?

These thoughts sometimes overwhelm me, but I have to remember to take it one day at a time. I have to focus on the now, and make sure that every step I take in the present is the safest one possible. That’s all that I can do. It would be reckless for me to deny the possibility of breaking a bone in the future, but at the same time it’s unhealthy to let this fear consume me. In a quest for inspiration in the face of adversity, I’ve been turning to other examples of people who have had to endure far worse anguish than my own.

It’s funny how life often directs you exactly where you need to go.

A few weeks ago I was watching television (which I rarely do anymore), and came across the trailer for Unbroken. I hadn’t heard of the movie, or the book it is based off of up until then. Since I am on break, I decided to purchase the book, and I’m glad I did.

Sometimes it is refreshing to read about people who overcome adversity, including pain, no matter how severe. The book, by Laura Hillenbrand, is about Olympic runner and WWII POW Louie Zamperini. His life, and all that he had to endure, is nothing short of remarkable. Although I haven’t had a chance to finish the book yet (I will in the next couple of days), the anguish he encountered surviving on a raft in the middle of the ocean for 47 days, followed by the pain from constant beatings as a prisoner of war, is unfathomable. Broken bones, concussions, illness, starvation, thirst; he experienced it all.

Yet he overcame. He endured. His human spirit could not be broken, hence the title of the book. I am amazed by each page that I read – to think he lived to be 97 after all that he went through is mind-boggling. I am running out of words to describe “it can’t be believed”, because it just…can’t.

I don’t think I’ve ever been punched before (and would like to keep it that way), but I have whacked my head on a cabinet door, or recoiled and hit my head on a wall, and it hurts. To get consistently beaten, day after day, requires an extreme tolerance of pain, and enormous mental strength.

But it shows what can happen when you master pain. You defeat it. Pain doesn’t go away by wishing it away. You might take drugs or medicine and it goes away temporarily, but it always comes back.

I have to get better at dealing with the discomfort, because my pain wont go away quietly. I need a better attitude. There are definitely other ways to attack the problem. I have heard the benefits of altering one’s diet to reduce inflammation, and am trying to incorporate this diet into my day-to-day life by eating smarter and more strategically. Perhaps that will offer some relief. Sure, there are some alternate forms of pain relief out there, but at the end of the day, the pain will always come back as it is a chronic condition. Overall, I need to improve my mindset.

As humans, we are capable of mastering pain. I must put my mind to defeating it by not letting it destroy my spirit. I need to break the grip of pain from my life before it breaks me.

 

Reflection

On By Chris AnselmoIn Through My Eyes1 Comment

Looking back to August, my main concern was surviving business school orientation. Those three days were a whirlwind: meeting new people, getting acclimated to chaos, all while trying to come to grips with the demands about to be placed on me. In the months since, I’ve survived about as well as I could have hoped. The end of the semester is in sight. In the blink of an eye it is already Thanksgiving; it is crazy how time flies.

The constant stress and hectic pace have worsened my muscle disease, which I knew would happen when I made this decision. Experiencing it in real time is frustrating. I am in constant fear of falling and getting hurt, and being too weak to perform basic daily tasks. I still worry that I will not make it through the entire program in one piece. But I must press on. Fear is not an excuse to stop.

More importantly, I have a lot to be thankful for. Thanksgiving break is the perfect time to remind myself of why this struggle is worth it.

First and foremost, I am thankful for the people I am surrounded by in my life. My parents mean the world to me. I am more reliant on them now than at any point since I was a young child. I have a wonderful sister and a young niece whom I adore. My friends – what can I say – they have seen my worst days, and my best. They are always there for me when I need them.

I am also thankful to have made so many friends already at Boston College. Although the small size of the class wasn’t my only reason for deciding to attend the program, it has made all the difference in enabling me to thrive. People know who I am, and they know what I am dealing with. I have taken advantage of the platform of Eagle Talk, a sort of TED talk for our MBA class, to tell my life story, and it has lifted a tremendous weight off my shoulders. People know what I am going through now and understand my vulnerabilities.

Second, I have my health. I’ve been sick a few times this first semester, as I got acclimated to being a student again and being in a building full of germs. When I am sick I am miserable, especially since I am so weak. However, it has given me a great appreciation for my overall health. I also know others who are going through much worse. Keeping this perspective is very helpful. Besides love, there is no greater wealth in the world than being healthy. We only get one shot at this life.

Lastly, I am doing what I want to be doing, even though I don’t yet know what I want to be doing. That may seem ridiculous, but it isn’t. I am motivated by change – making a positive change in my own life (furthering my education, and hopefully my income), and in the lives of others. I want to help as many people as I can, especially those with disabilities. The MBA program will lead me in that direction. I am beginning to understand my true purpose, which I realize is something that not a lot of people can say.

My condition is not something that I enjoy. But with a little reflection, and some time off to breathe, I get to see that there is so much more to life than my frustrations. Life is worth fighting for, every minute of every day.