Muscular Dystrophy

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.

Body Shaming in India, for better or worse

It’s a common phenomenon amongst Indians, commenting on another person’s looks, especially when it comes to their weight. Some think this type of critique is generally reserved for close family or friends, serving as either a compliment or perhaps a cause of concern.

In India, it comes at you from all angles: aunties at a parties, uncles in the lobby, co-workers and friends, and most recently, a maid in the lift of my building. Mind you, aside from my coworkers, I BARELY know these people. I’ve probably had one at max two interactions with them and yet they still find it okay to comment on my body.

My co-workers saw me after 3 weeks and one of them immediately commented on how thin I looked.

“Look at her face,” she told our other co-worker, “it’s gotten so thin. What happened?”

I haven’t intentionally been trying to lose weight, just more conscious about how and when I consume food. I told her perhaps I had; I’ve been doing physiotherapy lately but nothing aggressive.

The next day while entering the lobby of my building, an uncle stopped me to say hello. I had a knee brace on and was walking with my cane so planned to keep our conversation to a minimum. We exchanged pleasantries for a good 5 seconds before he said I had ‘gained.’

“You’ve put on weight, has it? You look heavy.”

I didn’t have an immediate comeback at hand and I bristled at his rudeness.

“No, in fact uncle, I’ve lost.”(I wasn’t sure this was even true but I was riding off my co-workers comments the day prior).

“Oh no, you are looking so chubby. Those chubby, chubby cheeks.”

He made a gesture suggesting expansion had taken place and pulled at his own cheeks. He was convinced I had become nothing short of a cow.

“I’ve always had chubby cheeks. It’s my thing.”

I looked at him sideways, curious with a half-smile. This man sees me in a brace and doesn’t bother to ask what happened to my knee but instead goes for my weight? I walked towards the elevator as he continued on about nothing I cared to hear. There was no room for niceness at that point. I was done being nice for social purposes plus I needed to sit down. I didn’t care what he thought of me. He eventually got the hint and waved goodbye.

I didn’t let the uncle’s comment get to me much that day. In spite of having muscular dystrophy, I can still walk and remain active. I knew my body and I appreciated all that it has done for me. It has let me travel to Turkey, Thailand, and Dubai in the last few years. It’s supported my decisions in going out and staying in and lets me exercise it in a mild manner. I finally reached a place with my body where I’m not criticizing it but rather expressing it as much love and gratitude that I can towards it. But here it was, other people’s unsolicited thoughts over my body flying at me

Later that evening, I had gone out to run some errands and was again, headed towards the lobby lift. A nanny/maid from one of the other floors whom I see on occasion called out to me

“Madam, you’ve decreased no? Lost weight it seems.”

The lift had come at that moment and I was totally caught off guard. I blurted out a response, something to the effect of, “Um, what? I don’t know. Maybe? Yes? Ok Bye.”

I was livid. I know most women (myself included) like hearing people say they’ve lost weight, it feels nice. In my case though, my goal isn’t about weight loss — it’s about taking care of my health. Even if I did lose weight, I’m not looking for outside validation. I didn’t ask for a compliment or to tell me whether the number on my scale has gone up or down. My weight isn’t indicative of a strict diet, upcoming event, or new relationship. Whether I’ve lost of gained, my ultimate goal is remain strong and happy, knowing I’m doing the best I can to stay functional.

The manner in which I handle these scenarios is so mood-dependent. Perhaps because these comment were coming at me back-to-back it all felt too much. I’ve been on the receiving end of much worse when I was younger and chubby from family members in India. It all boils down to your emotional state of mind. After the nanny/maid comment, I was a raging ball of anger. I immediately got inside my apartment and called a friend to rant.

Why is this so normalized? Why do Indians feel the need to comment on my body? I didn’t open myself up to this type of scrutiny. I feel obliged to reply back when I truly don’t want to because then I’m participating in it. Why do we have to arm ourselves with ready responses when this wasn’t a topic I chose to engage in? I don’t want to discuss my body weight with someone I barely know.

For better or for worse, I’m simply choosing to love my body no matter what.