life lessons – 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.

Birthday Growth

Two weeks ago today I turned 31. That number looks old now that I see it typed out. So instead I’ll call it 10 years since I turned 21. Nope, still feels old.

I had a low-key birthday this year and I wondered two weeks later whether or not I should have pushed myself to celebrate big-style. Perhaps last year’s epic drunk-fest to ring in 30 was celebration enough for two birthdays.

I reflected on the past three weeks. The last time I felt motivated to do any real work was right before my birthday. On my actual birthday, I had a yoga session in the morning. I went to lunch with two friends and perused diamond jewelry. I ordered-in dinner with a friend and delighted in every last drop of birthday love pouring in. This seemed fine enough but I wondered: Did I unknowingly slip into a state of depression hence my laissez-faire attitude? Was this a low-life state or was I playing hard to get? Perhaps I wanted my birthday to be a planned affair entirely orchestrated by someone else. Or maybe I wanted to acknowledge it without going overboard. I counted back to previous birthdays of mine (at least the last 5), trying to remember what I did.

What was this birthday anxiety all about?

There’s almost always a pre-planned outfit involved, a silky smooth blowout, and a fresh mani/pedi. Lunch or dinner or both. Cakes, flowers, singing/clapping. But along with this, a lot of pressure, especially this year. What are you supposed to do on your birthday? There’s really no rule of thumb . You’re supposed to do whatever you want. And this year, it was sitting at home in my pajamas watching Netflix with my roommate. She surprised me with a decadent chocolate cake and candles. It was simple, sweet and kind of perfect.

Birthdays should be celebrated— calls/FaceTimers coming from all ends of the world, all day long, with well-wishes and birthday cheers. A showering of love ensues and because of this you feel a little extra special on your day.

On this particular born-day of mine, my back ached. My body wasn’t ready for all the birthday prep and the stamina it required to dress myself up for a night out. My birthday fell on a Monday so the Sunday before I felt anxiety building inside me. I got in the elevator, official met the sweet South African bodyguard on her last day of work and considered a day at the spa. I felt stress/anxiety building inside me and knew this was a wrong move.

What is came down was this: I wasn’t feeling well and I wished I did.

If I let the birthday pressure get to me, I most certainly would have pushed myself to look the whole part even though I didn’t feel it.

Rather than running away from my anxiety and endlessly denying it, I tried to understand it. Where was this pressure coming from? What would happen if I stayed at home? Would anyone know? (the proverbial tree in the forest) Did I feel too self-important and wished people cared more? There’s no birthday police, no one to force me outside of my cozy Bandra apartment. It was all on me.

I’m in India without my core family and friends around and felt it a little harder today. Plus my back ached.

This year I understood it was okay to not feel in tip-top shape on your birthday and I don’t mean because of a hangover: emotionally. Every year when April 10th comes around, in an effort to welcome the incoming age and shed my younger skin (and take decent pictures of myself), I doll myself up and celebrate the birthday with all of the above. “You should go get your nails done, your hair done, the works!” my yoga teacher shouted. Maybe I believed this was a form of practicing self love on your birthday. This year, that would have been the opposite.

This year, I didn’t force myself into a 3 hour salon ordeal. Growth, I thought. This is growth. I made an effort to do small things for myself throughout the day that acknowledged my birthday without going overboard.

It wasn’t the first time I could actually feel myself grow spiritually or experience newfound internal wisdom. If you’re ever felt it happen, growth is 100% a visceral feeling.

I wanted to my hair to just be. My nails remain unpainted, unpolished and uncut. I wished for my back to feel better and to allow myself to soak it all in the love the came through in the form of phone calls, texts, social media love, flowers and cakes. I let other people do the work this year. I didn’t want to play birthday girl and because I realized this, I felt extremely satisfied. Until a week ago when my back pain eased up and I wondered if depression silently clouded any desire I might have had to get up and celebrate.

This wasn’t depression or a battle of mind over matter. I finally listened to my body long enough to rule out my mind in order to feel my best.

At 31, I finally swapped out sparkly nails and blow outs for cotton pjs and curly hair. This was Birthday Growth.

Abracadabra

a closer look @ googling

I’ve been wanting to speak on this topic for awhile. It’s been tucked away in an email draft with the subject: Things I Need To Write About #writerproblems. Some of these ideas never see the light of day/make it through my fingers, though most are good. There are without a doubt terrible ideas I’ve had for pieces that should never come into fruition. Still, I like to keep a record of them if not for making myself feel better that I tried but simply for my own personal amusement over their ridiculousness. #writerproblems.

I’ve written in previous posts about how technology has changed so many things for us–culturally, socially, emotionally/mentally/physically/, the list goes on. It has it’s enormously meaningful impact on the world but comes with dangerous side effects and drawbacks we’re only now starting to understand and accept.

I’m terribly curious by nature and also extremely anxious/strategic (part of the reason it’s taking me so long to get to this idea #overthinkerproblems). It works both for and against me, this very special trait of mine. I breeze through research, knowing the right questions to ask to get the information I need/don’t (good for journalism). I talk to strangers, socialize often and keep chugging along.

Too often I succumb to the darker side of my anxiety/curiosity and I google the shit out of everything. When I came home from buying a new line of products from Clarins (and after evaluating the products in-store and online), I came home to google, “benefits of X product.” I even remember thinking to myself, ‘isn’t this the strangest behavior? Didn’t I just spend nearly an hour in the mall deciding which products I liked, even got a mini-facial in the process to test said products out? Why do I still need to check this out online?’ It was the first time I really took notice of what I was doing. And last month, I started including more vitamins and supplements in my diet. Most of them need to be taken after a meal. I chose them based on what my multi-vitamins were lacking plus whichever I found would help with muscle/bone strength. Even though I already purchased the vitamins and devised a plan for how I’d space them out throughout the week, I came back to my Macbook only to read about the benefits of each one of those pills.

What are we doing to ourselves? Have we become so dependent on technology for validation that we stop using our brains? I’ve become addicted to reading about the benefits of the choices I make, mainly when it comes to my health or body. I’m less concerned somehow about the risks but I pore over the good stuff–how drinking enough water can completely revolutionize my skin, what a good nights sleep can do for your body and mind, the goodness that comes from a dedicated exercise regimen, how thoughts can positively or negatively impact your behavior and body, and so many other meaningless searches. ALL information I’m aware exists and will continue doing regardless of those benefits yet continue down the bottomless pit of interneting away.

DISCLAIMER: This isn’t just because I have too much time on my hands. On days when I’m completely busy with writing, researching, scouring the internet for editors contact information, or just living in India (which requires lots of other types of busy work) I still find myself seeking this information. I had to ask myself why is it that I keep coming back to this same, silly activity? Is it because I’ve written those listicles or articles on the benefits of x thing? Or, worse yet, do I actually care about those benefits?

After all the products have been purchased, the water drunk, the sleep slept, the pills swallowed, the body remains kind of a mystery and no one knows entirely what’s going on inside of it. I suppose its my own fascination with the mysteries of the body that keep me googling but it’s also my inherent desire to be validated–to know that I’m doing something ‘good’ for myself, that I’m treating my body the best I can and heading in the right direction. Its my own congratulatory pat on my back. As we get older there isn’t always someone around to say, ‘good job’ or ‘right on’ or whatever encouraging words people offer one another. We need to believe on our own accord that the choices we are making ARE for our betterment. We validate ourselves and keep moving forward, no matter what Google says.

Googling out our anxieties and fears is the modern version of Abracadabra. We instantly get answers to whatever thoughts/concerns/questions/fears/frustrations/elations we feel, anything we feel! Magic happens in front of our very eyes and before we know it, we’ve got our fix. We instantly feel better or worse, satisfied or left wanting more.

I’ve had to consciously stop myself from googling the benefits of anything these days. Live and let live, I say. I can’t remember googling to validate before the internet existed. It only started about 1-2 years ago. I wouldn’t sum it up to one particular reason but I do believe Google searching has made us so dependent that we forget we already possess a treasure trove of knowledge in our heads. We don’t need the internet to tell us things we already know but we like that it does. And when we start to need it in order to function, we’ve already become addicts.

I remember a book from my childhood (pre-internet) that lived in the study of our house. It was called, “The Big Book of Tell Me Why.” I can remember feeling like I was witnessing something special when I turned its thin pages, being privy to information others didn’t have, gaining knowledge to things no one knew. Learning something new felt exciting and that book held a power over me, before Ask Jeeves or Google ever existed.

Today I caught myself googling the benefits of a new protein powder I’ve been taking for muscle growth. I knew I’d be taking the supplement even if I read something suspicious (perhaps I’m also looking for reasons to not partake in whatever activity or product I’m searching about) yet I still googled away. I guess I’ve reached the point of no return–I’m officially an information junkie, strictly speaking when it come to google searching about the body. Is there internet rehab ™? Someone make that happen. And also credit it to me. Help!

10 Lessons from an uncle

One can earn suitable money at a job, but mastering the art of multiplying money is the key to becoming rich
Give love, get love
Drink at night to forget the day (does not an alcoholic make?)
Forget the day but remember the exact price of everything you own (ie: 5000 rupee shoes)
Calling someone your girlfriend means you have a strictly platonic relationship (hmm…)
In the end, you take nothing with you (amen)
Eating garlic is a cure-all
Spoil your kids rotten then blame them for it
Never trust women
Always be positive