Month: September 2018

The Importance of Humor: From Frustrated to Funny

Finding the funny in the darkest of times

I’m reviving my posts from five years ago, when I started blogging for a website by the Muscular Dystrophy Association called Transitions. The posts were written by people with neuromuscular conditions who were in the midst of any life transition: age, disease-related, anything significant that affected his/her life. Starting this off with one of my favorites!

Maintaining a good sense of humor about the various pitfalls I face living with a neuromuscular condition is one my greatest challenges. At first one might ask, what could be humorous about weakening muscles and limited mobility? When I was diagnosed 6 years ago, I couldn’t fully comprehend what life with LGMD would entail and the changes I would need to make to my life. A trip out the door felt like a game of Super Mario Brothers (a testament to my knowledge about current video games) — I had to jump, hop and skip at the right time, be super cautious about my moves, all while having my faithful partner Yoshi by my side for assistance otherwise I’d pay the price: a fall, fracture or worse. I was angry I couldn’t move with effortless grace like other women. Humor came with time and acceptance; I was able to discover the funny in the midst of my frustrations. A sense of humor has helped me deal with accepting living with LGMD and in better fostering my relationships. Instead of spending hours in a downward spiral of depression over something MD related that happened I came to discover time was much better spent finding the humor in these unique life experiences, learning from them and moving on.

Traveling with a disability is certainly not an easy thing to do. I recall a trip the Caribbean I took with a friend. It was our first time vacationing together and even though she was well aware of my physical limitations, I knew going on vacation together would be a whole different experience. The plane landed on the tarmac. Passengers proceeded to exit down the narrow steps. As we waited on-board for my wheelchair, I knew I was going to be carried down. Two disabled service men arrived and I was quickly placed in the chair — standard procedure. What was different this time around from others was that I was strapped in — arms and legs zip tied up. I felt like I was being institutionalized/packaged away for storage. Mildly embarrassed, I thought, ‘Oh God, this is a great way to start our vacation together.” I looked over at my friend, nervous to see her expression. I sensed a twinge of shock mixed with satisfaction that the airline personnel took my care seriously. We immediately both burst out in fits of laughter. We refer to this moment as my ‘psycho exit’. I later came to know it was indeed standard procedure for wheelchair passengers to be carried down in the safest manner possible, ie: securing all appendages in the vehicle. Our vacation turned out wonderfully — a trip to the grocery store became my friend Sam driving me around in the hotel wheelchair as I grabbed bottles of water and snacks from the aisles, dumping them into the basket on my lap. What would have otherwise been intense moments of outrage over my harsh realities became remembered moments for Sam and I. We still talk about the strange nature of some of the places MD has led us (ie: exploring hidden sides to restaurants/hotels/etc so as to access the service elevator, experimenting with whether wheelchairs will roll on the beach and so on). Being able to deal with those moments responsibly and laugh about it was key. It of course makes a difference when you have great friends who support you.

Prolonged staring is a common phenomenon in India. Sure, people are curious by nature but when they can’t make sense of things in front of them, their eyes tend to linger much longer. The stares used to bother me a lot in the beginning. I have my moments now when it still bothers me. What I better understanding now more than ever is that people are just plain curious. Sometimes, it’s none of their business and most of the time, it’s not their fault. Curiosity is a natural human tendency and unfortunately so is ignorance. The best way to combat these two things is with knowledge. The initial look of confusion/curiosity turns into one of understanding. At least, I hope it does. ‘What’s wrong with you?’, becomes ‘How can I help you?’ But not everyone is open to learning more. When staring becomes intrusive or accusatory, I play around with it. One day while visiting family in Delhi, I was feeling particularly tired and so my mom and uncle helped me get to the car. With each one supporting me on either side, an old man on the street screamed out in Hindi, ‘Look at that girl, she’s drunk! And it’s the afternoon!” I wasn’t sure what offended him more — the fact that I was a girl who was drunk or that I was drunk in the afternoon. Just to be clear, I was completely sober but because of my unsteady gait, this man was certain I was in fact drunk. My uncle was quick to correct him but for whatever reason, I found the situation ridiculous and absolutely hilarious. I played along to his idea of my being intoxicated, swaying a bit more than I needed to, my mom, uncle and I in stitches as we gathered into the car. Now I know this isn’t the best/smartest/most mature way to deal with a situation like that, but hey, let’s face it, we have to take those moments when we get them. Humor helped me create memories (albeit, weird ones) with my family and brought me closer to them because I was able to remove myself from the seriousness of the situation.

All this to say, I take my condition very seriously. But I don’t let the weight of it all overwhelm my life. I take pleasure in finding small joys however and wherever I may find them. I used to believe that laughing at my problems was a sure sign of denial or insecurity. That’s not always the case. Humor lightens the mood both for myself and for those around me. And I genuinely find the situations I’ve been involved with very amusing. Remembering to find the funny has been immensely gratifying for me. I’ve accepted many more things about my condition because of the way I look at them now, through smiling eyes.

Opportunity Costs

I was going through old writings of mine and came across blog posts I wrote from MDA (Muscular Dystrophy Association) Transitions. This blog was created to give a voice to people with neuromuscular conditions transitioning from one age group to another. MDA did away with the blog but I have to say I do love what I shared on it, even if the writing style makes me cringe now, the feelings about it remain. I was in my mid-20’s, the peak of my anxiety, when I wrote the below entry about opportunity costs. I still face some of these issues but re-reading this reminded me just how far I’ve come.

“So be sure when you step, Step with care and great tact. And remember that life’s A Great Balancing Act. And will you succeed? Yes! You will, indeed! (98 and ¾ percent guaranteed) Kid, you’ll move mountains.” — -Dr. Seuss, Oh, The Places You’ll Go!

Life is said to be a great balancing act. Humans have been trying to achieve balance since 2,000 B.C. The art of measurement was appreciated in Greek and Egyptian cultures: Dike, the goddess of justice, held tight the balance scales while Egyptian God Anubis weighed the hearts of the deceased to deem whether a soul was worthy of sanctified heaven or destined for the fiery pits of hell. It seemed our decisions and actions came with a cost, some heavier than others.

Why so much thought on balance and scales? LGMD (limb-girdle muscular dystrophy) is such that if you overexert yourself, you’re done for. It demands from you a certain amount of activity and exercise, the perfect type of diet and just the right amount of rest to avoid fatigue. In the past year, I’ve come more and more to a crossroads, picking and choosing between what I want to do, what I can do, what I’m unable to do, and what my body is telling me to do. Which do I satisfy and where do I go? I’m pulled in multiple directions, anxiety and pressure building in my mind. It’s as if LGMD broke me; I used to be fearless but lately I can’t help but feel filled with fear. It can be overwhelming knowing that each decision made will set the tone for the rest of the day, maybe even the week. How do you know which voice to listen to and whether you’re making the right decision?

Being a young person with a disability comes with its own slew of unique struggles, one of which is keeping up with the rest. I was diagnosed fresh out of college when life was meant to be its most exciting. And it certainly was exciting, but not because of my all-star career, dramatic relationships or whatever it was early-20-somethings were supposed to be doing. I was traveling and discovering what it meant to have a neuromuscular disease. Along the way, I learned the tricks and trade of LGMD and attempted to put my best foot forward. But I of course tripped up. Social pressure got the best of me early on and I made poor decisions. I forced myself on solo treks into the unknown wearing questionable footwear, exerting myself physically so many times in an effort to keep up with my peers and prove to myself that I was capable. This usually resulted in me crawling back home a crumbled mess. Back from the parties and excursions where I felt I needed to accomplish something major. Back to my family who always picked up the broken pieces my self. I wasn’t yet able to accept and understand my limitations so I fought hard against them, putting myself in precarious situations. I’m not saying I did this all the time, but in retrospect (which is 20/20), I could have made better choices. Everyone has to make decisions about their lives everyday. But the cost of my actions felt greater, knowing that if I made a wrong move, I might end up paying dearly with a fall or worst yet, a broken bone.

The idea of having to choose between doing one activity over another reminds me a concept I learned about in my college Economics courses: the opportunity cost. It refers to opportunities that are forgone by choosing one alternative over another. Part of the struggle with decision-making is being happy with your choices. What did I lose by not participating in X activity? What memories did I fail to create? Whom did I miss meeting? And what did I gain from not partaking? I wondered what the costs were of my choices and whether I would ever feel satiated.

As I grew more familiar with LGMD, listened to my body and calmed my mind, I was able to identify what my body wanted and what I needed. I understood the difference between physical fatigues and mental mind games. I started weighing the cost-benefit of going shopping versus staying home and not worrying about the opportunity costs. I read the signals my body gives me to help guide my decisions. I ask myself “Is it worth it?” which clarifies any points of confusion about my choices. Some alternatives were tiring and definitely worth it while others simply were not. With time, my priorities have changed and I can say that I am more at peace with my decisions. I still feel overwhelmed at times and try to come back to the scales, the great balancing act of life. It need not be perfect but balance was key.

When I look back on the painful moments of truth I had to experience and still experience, I believe that it’s all certainly worth it — my moments of failure allowed me to build success over time. By sorting through opportunity costs, I figured out which ones mattered most to me. I bought Dr. Seuss’s “Oh, The Places You’ll Go!” when I graduated college to remind myself of the extreme ups and downs we face in life. I won’t always make the right decision but I know that I am not the sum value of my costs. Whether I go for the physical choice or opt out, I know with each step I am moving mountains.