Disability – The Gait

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.

I’m human, not cargo: Navigating the daily challenge of stairs, steps and bad ramps

It was my first night out in my new home city of Mumbai. My mother was staying with me for three months before heading back to our hometown in New Jersey and shrilled with excitement upon discovering my evening plans at Mehboob Studios. ‘Did you know the shooting for Mother India happened there? Of course, that was “my time.”’ I ignored the studio’s fame entirely; my sole focus on the anticipation of witnessing a concert in Mumbai. Clearly, Bollywood appealed to my mother as much as the allure of this new city did to me. I arrived early, as I usually do when checking out a new place, only to discover an already packed parking lot.

I wove through the throng of concertgoers, making sure to place my cane down steadily as a signal to others — I wasn’t someone to be pushed. A security guard emerged from a backdoor. I asked him about the performance. He drew a long finger pointed towards a steep set of steps. ‘Upar hai.’ (It’s upstairs.)

‘Well, shit.’ I stood around for a minute or two with my pre-paid ticket in hand. My friend’s invitation to the show didn’t come with accessibility details, and my eagerness to attend made it slip my mind to ask.

Four years into discovering I had limb-girdle muscular dystrophy, my condition had progressed to the point where stair-climbing was out. Maybe a part of me didn’t care whether or not there were stairs — I was determined to have the experience. There was no service elevator, no secret entrance that allowed me to effortlessly glide into the upstairs studio. My excitement quickly waned. I looked up once more at the long, narrow staircase and promptly dialled Balu, who has worked for my family as a driver for many years.

The guard began to understand the situation and insisted I could be carried up in a plastic patio chair. He’d walk up the stairs backwards, directing Balu and two other men he recruited to carry me up. I hesitated at this large feat: was this too much effort for a concert? Did I want to put myself through this? I turned to Balu, ‘Are you sure about this? Is it safe? There are a lot of stairs, you know.’ I asked myself, is this worth it? At the time, it was. And so up I went, gripping hard at the chair’s sharp edges, trusting nothing would go wrong.

‘Side per reh, side, side, side (Stay on the side),’ the guard shouted on our shaky journey up. The following thoughts ran through my mind: ‘Why am I doing this? Do I weigh too much for these guys? What if they pull a muscle doing this? Can I trust these Good Samaritans? I definitely weigh too much for them. Great, now everyone is staring at me. I hate this so much. Okay we’re almost there. This will all be over soon.’

The men gently placed me down near the studio’s entrance. I thanked them, genuinely grateful for their help. As I sat in the chair for a few minutes more, I hoped the neon lights emanating from the inside stage would soothe any residual anxiety I felt over our ascent.

This wasn’t the first (or last) time I was lifted. The first time was in New York City when I desperately needed to use a restroom. A friend’s brother swept me up and carried me down the basement stairs to the restaurant’s bathroom.

In Istanbul, a dashing dancer carried me up two steep flights of stairs so my mother and I could watch the dervishes whirl.

In Mexico, I was lifted over steep sand dunes to relish the ocean breeze with friends.

At my part-time job in Mumbai, office employees carry me up six steps just to access the building’s lift.

I spend most of the year in Mumbai, a city filled with steps and stairs of all heights: from ridiculously chunky steps to mere two-inch boosts. It’s the city I’m lifted up in most often. When I first moved here, I asked friends why, aside from space constraints, accessible entrances are so rare. Their answers ranged from rising flood levels and architectural aesthetics to complete negligence on the government’s part to either implement or ensure compliance with accessibility laws.

When faced with stairs, I’m forced to make precarious decisions about my body. There’s a level of vulnerability I experience when I walk around with my cane — I’m met with confused stares, looks of concern or pity. I’ve even come to appreciate and enjoy some of it. Hell, the world is my runway. But how much more vulnerable must I be in a public setting, especially when it’s not entirely on my terms?

Was I glad to see the show at Mehboob? Yes. Was I grateful for the support of those who carried me? Of course I was. Except the decisions leading up to that left me with mixed emotions. I had a choice to say no and turn away from the situation. But my desire to enjoy a night out was like anyone else’s — why should I be denied that? I could do without the emotional torment, anxiety and unwanted attention that ensues as I’m carried up. Eyes lingering longer than feels appropriate, on-lookers’ heads moving along my trajectory as they try to dissect what’s ‘wrong’ with me.

There’s a scene from Margarita With A Straw that comes to mind. Staff members carry the protagonist Laila up the stairs when the lift in her college is inoperable. The look in Laila’s eyes is a familiar one — frustration mixed with mild fear and a deep desire for the entire ordeal to be over in a flash. Mostly, Laila seems preoccupied with getting upstairs ASAP to see her boy crush. Still, it’s very easy to feel like cargo in the process.

In Mumbai, for example, most of the accessible infrastructure in place is intended for just that. Five-star hotels have short, steep ramps meant for transporting cargo, not humans. I’ve mastered the art of slowly making my way up these obtuse structures because the alternatives aren’t much fun: getting lifted up, pushing myself to climb stairs with assistance, or turning away from it all.

The fact is that I don’t enjoy the act of being carried upstairs. I understand its purpose and accept it as a means to an end (given, of course, that I have the support of individuals to help me up). I’ve declined/refused the offer to get lifted out of concern for the men carrying me or because I felt unsafe. In these moments, an internal dialogue plays: ‘Is it worth it?’ I ask myself. I don’t always know or choose the right answer. Because other people are involved and a plan is required, my decision is usually time-sensitive. My choice has the potential to invite a host of ordeals: unwanted attention, anxiety, strategic planning, becoming dependent upon the mercy of strangers and being touched by random men who may have ill intentions or are seeking an opportunity to cop a feel.

Having said that, every experience of getting lifted hasn’t been shameful or scarring. It can be a straightforward process that leaves my emotional well-being intact. Sometimes it can even be empowering. I’m not succumbing to inaccessible entrances or washrooms; rather, I am literally rising above them. In those moments, I’m actively choosing to continue living my life on my terms, deciding what’s right for my body and mind, finding a way to ‘make it work’ or saying no.

Upon hearing or seeing the obstacle course I navigate in order to get where I’m going, friends and family members offer their praises, ‘It takes courage to do what you do, you’re a strong girl. Always remember that,’ or ‘If I was in your position, I don’t know what I’d do. I’d never leave the house.’ They tell me they admire my spirit and share how my ‘unbridled fearlessness’ inspires them to push through obstacles in their own lives, no matter what.

I can’t say I’ve made the right choice every time when getting lifted or that I always feel courageous. But it helps when you have wonderfully supportive people in your life. Those people that lift you up — not just physically, but spiritually — and remind you not to feel ashamed but rather empowered, knowing you are living your truth.

Accessibility issues need to be addressed in the city of Mumbai (and all over India, for that matter) but in the meantime, it won’t stop me from living the life I want for myself.

On a recent night out, a friend insisted I join our group at a popular underground club’s basement event space. I heard about the interesting events hosted by the venue and had wanted to explore it for some time. Except it takes navigating stairs, countless stairs to descend into the urban underground scene. My friends assured me that if I wished to go, they’d arrange for me to get in and out safely.

There was no pressure, since I’m past the point of feeling peer pressure in situations like these, only a desire to continue a fun night out with friends. The decision was mine alone. I’d take a look at the surroundings first. When we arrived at the venue, I examined nearby walls, pushing at levers or handrails to test the strength of their support. There was ample space to be carried. I looked over at my supportive friends, standing ready with a chair and smiled, ‘Okay. Are you ready?’

Featured image credit: Alia Sinha

Originally published at blog.sexualityanddisability.org on May 2, 2017.