Would you stand up for me?

Before Urvi came into my life, I can honestly say that I didn’t realize the degree to which many individuals with disabilities are ignored, segregated, or discriminated against on any single day. With so many problems in the world, taking a look at how your neighbor is being treated may not be as sexy as fighting global poverty or ending world hunger, but the simple ways we act [and react] to individuals with disabilities can shape their self-image.

Of course, I still remember being able to walk. Not just walk, however, but walk with confidence, purpose, and determination. I felt unstoppable at some point and knew that nothing could come in my way. I never made enemies or got into a fight. Yet, just a few months later, as I’m attempting to maneuver Urvi in and out of the subway cars, I accidently touched a bystander’s foot with the rear wheel. I remember warning him and the others around me that I was about to back out of the subway car, but I guess it wasn’t enough. I think I can count on just one hand how many times I’ve been cursed at by a stranger. Being called a b!tch out loud left me paralyzed on the platform. Bystanders just stared at me for a brief second and then resumed their commute. As tears filled my eyes, I wanted to tell that person that I didn’t ask to be in this position and I’m sorry that I can’t walk, but he was already gone. I barely got my wheelchair a few weeks prior with no formal instructions or guidance on how to operate it. It’s terrifying boarding and leaving the train car. You have to get the timing just right, as not all conductors will wait for you to get on safely before the doors start closing in on you. Even worse, some people just don’t move out of the way when they see you or they jump right in front of you to get a spot in the train. But on that crowded platform, no one seemed to understand.

More recently, I was taking the bus to the gym, when a man sitting across the aisle a few feet in front of me decided to throw old newspapers and trash at me that he had in a plastic bag. I was on the phone when I noticed the items dropping at my feet. First I thought the man had dropped something, but as our eyes met, it was clear that he was deliberately flinging the items at me. I don’t know if he was drunk, deranged, racist, sexist, or otherwise. It didn’t matter what the reason was. I felt helpless in that moment. I had nowhere to go and had no idea if this man was a threat. No one on the bus said anything. It seemed like an eternity as this scenario played out, but it must have been only a few seconds before I couldn’t take it anymore. I screamed at him, “Sir, do you have a problem?” Surprisingly, he answered, “No.” I didn’t wait for an explanation and alerted the bus driver of his erratic behavior. The bus driver stopped the bus and made him pick up the trash, but didn’t kick him out. I felt a knot in my stomach form. Although, the bus was a few stops away from where I had to get off, it was the most uncomfortable few minutes of my life as the man just stared at me. Thankfully, the man didn’t follow me and I got out of the bus shaken, but okay.

Only once did someone stand up for me. During rush hour, I was unable to get to the spot in the car that is reserved for wheelchairs. People usually just crowd in that area and ignore me, so I park myself in a way that there is enough space for others to slip out without blocking any of the doors. As the train picked up more passengers and started filling up, a woman came behind me and started mumbling. I didn’t pay attention at first, but as she left the train a few minutes later, she turned back and screamed at me, “You should not be in the train; Wheelchairs should not be allowed on the train!” All eyes turned towards me, but I couldn’t muster the words to come up with a reply. An older man standing besides me, however, didn’t hesitate. He screamed back, “How can you say that? What if you were in the same position? You should be ashamed of yourself!” A million questions ran through my head that I had wished I screamed back at her; What about the other people occupying the train? Why don’t you scream at the people taking my spot? Why couldn’t you just go into another car or wait for the next train? But there I was in the train car frozen and humiliated. I’m not sure if the man who helped me that day heard me thank him as I struggled to speak.

Within the days following this incident, I kept on thinking of the man who stood up for me and how grateful I was. I don’t doubt that I am a strong woman, but it’s scary sometimes being at everyone else’s hip level, strapped in the bus, or stuck on the subway platform. I feel invisible some days, until something goes wrong, and then it’s most likely my fault. I tell my friends and family that when you are on a wheelchair, you attract the good, the bad, and the ugly. While I can’t control the challenges life throws at me on a daily basis, I want to implore you, the reader, to be the good in this world. Have the courage to stand up for someone in need, disabled or not. Even though I was shocked after the lady screamed me, for a moment, I felt empowered knowing that someone had my back. This one selfless act made it easier to wake up the next morning with the same courage to go out into the world again. So, would you stand up for me?


From New York City to the Old City of Jerusalem

As I entered Newark International Airport about a month ago, I barely knew how the butterflies in my stomach would escape. Alone at the check in counter, I found out that my bag was 2lbs overweight and that I’d have to pay for the excess weight. My flight to Tel Aviv with a connection in Reykjavik was on time, so I didn’t have much wiggle room to delay at counter. While mentally prepping for the trip, I told myself that confidence was I all I needed, so I told the lady at the check in counter that I had medical equipment in the bag that they couldn’t hold against me in terms of weight. She looked at me for a few seconds and, without questioning me any further, issued my boarding pass and whisked my oversized bag onto the luggage conveyor belt. What I really had in my bag was a bath stool that I had collapsed and fit in. I wasn’t sure how accessible the hotels and homes abroad would be, so I decided that taking the bath stool would be one of my critical items. Mommy always said to bathe everyday and no inaccessible bathroom was about to stop me from doing so.

The butterflies in my stomach somehow simply transformed into a feeling of wanting to vomit as I passed through security. There was no on board wheelchair on the flight and I attempted to make as many bathroom trips before I boarded. As the first group of passengers were called to their seats, I kept telling myself that it was just 5 hours to Reykjavik and that again, confidence was all that I needed to take the first step. As I finished that thought, I was greeted by the air host who assured me that he would assist me during the flight. With my walker on board, I conquered my fear of flying alone and managed to hop into the cramped airplane lavatory. Success! One fear put aside.

In no time, I reached Tel Aviv and felt a sense of relief as I was greeted by my friend at the airport. It was too dark to see the countryside as we drove towards Jerusalem. I could sense, however, the shift in atmosphere as we entered the biblical city nestled between the hills. The sun rose the next morning and unveiled a beautiful city momentarily unscathed by the politics of the day. Trump had just announced that Jerusalem would be recognized as the capital of Israel by the USA. Many friends advised me from visiting the region in fear of violence due to the news that the American Embassy was to move to Jerusalem, but early that morning all I could see was serenity as I overlooked the Old City, even though it might have been for a brief moment.

The hustle and bustle of the city became visible as I met my guide later that morning. His name was Sam and he was a Christian Palestinian. With Palestinian license plates, Sam was able to drive me around both Jerusalem in Israel and Bethlehem in Palestine. I knew that I had found the right guide to take me around because the first thing we did in Jerusalem was to flag down a guy balancing a large tray of freshly made bagels the size of big foot’s face and convince him to sell us one. Just 6 weeks before I arrived Jerusalem, I had started working with a nutritionist to help me reach my goal weight. This meant no eating no carbs or dairy for the most part. I planned on sticking to my regiment, unfortunately, the offer of a freshly baked sesame bagel was too good to not accept.

With bagel in hand and my weight loss dignity in the back seat, we headed to the top of Mount of Olives to get a view of the Old City, which was clearly marked by fortress type walls. I wasn’t sure if it was to protect the city from outsiders as intended years ago or to contain the political conflict of today. Sam explained that whenever you saw a news story about Jerusalem, it most likely referred to the political atmosphere found within the Old City’s walls, where communities of Jews, Muslims, Armenians and Christians lived next to and on top of each other, all claiming their stake on the biblical site.

After taking in the scenic view, Sam continued to explain the history of the city as we drove towards its gates. Every time we’d get out of the car, he’d have to schlep Bobbie out of the trunk, but he never complained. We soon entered the Jewish Quarter and made our way through the endless alleyways. Rows of shops lined the narrow streets with spices, local delights, souvenirs, and art. Many merchants stared at me as I rolled through the market but a few recognized my guide and invited me into their shops. When traveling as a tourist on a wheelchair, I learned that you are as much of a sight to see as the place you are sight seeing. It’s hard to blend in and not disturb what is happening.  All I could do was smile back and steadily I smiled all the way to the Church of the Holy Sepulchre, the site where Jesus was said to have been buried and resurrected. Worshipers and tourists from across the world were swarming in and out of the Church to get a better view of its grandiose architecture. Although the sketchy wooden ramp prevented me from going into the Church, just being within the walls of the Old City felt like I had stepped back in time into another world, where I didn’t have to worry about airplane bathrooms and excess baggage weight. It finally hit me that I had overcome my fear of traveling alone internationally and actually made it to one of the most famous landmarks in the world on my wheelchair. If I could make it here, then I could go anywhere. It may take some extra time. It may require additional assistance. But with my renewed confidence, I was sure to make the best of this trip.

[Ready] Set, Go!

I don’t think there are enough checklists to make one ever feel really prepared. With my purple suitcase almost packed to the brim and laying half open on the living room floor, I can’t help but imagine that I’m forgetting something. What are the odds that it will rain? Should I bring my wheelchair poncho? I would if I could take another suitcase, but I’ve opted for only one this time. It would be a bad situation if I am unable to carry all my stuff, in the event that no one is available to help me at the airport. There you go again, trying to prepare for another scenario, as if the airports of all the major international cities I’m going to would be empty as a ghost town.

The days flew by so fast since I booked my tickets for my first international trip. Now the time has come to embark on my multi-country voyage. I first fly to Israel and then travel by road to Palestine and Jordan, after which I fly to Egpyt, India, and the United Kingdom, before heading back home over the course of the next 24 days. For the most part, I’m flying alone and even though air travel is second nature to me, this is the first time I’m flying alone internationally since being on the wheelchair. Urvi isn’t coming with me, however. She usually takes a break when I’m out of NYC. My travel wheelchair of choice (as if I had one) is Bobbie, sometimes eluded as the slower, less fashionable cousin of Urvi. Although her motor is not as powerful and precise as Urvi’s, she’s much lighter at 60lbs, folds like a stroller, and can easily be stored in the trunk of a car. Bobbie and I are very different though. I have a love-hate relationship with her as I lose some of my confidence when compared to being with Urvi. I feel like I am sitting on an actual wheelchair when I am with Bobbie and when I look at my reflection as I pass store windows, she never fails to remind me of my disability. Nevertheless, I’m grateful that I have Bobbie to be able to continue enjoying what I love most – traveling.

Between the living room and the dining room, some of the items I still need to pack are scattered around: my snow boots for those chilly nights, my diary, Bobbie’s charger, winter gloves, a pair of compression socks, the two braces that prevent me from falling onto my face most of the time, a spare bookbag, and a pair of crutches. Well, I guess not the crutches. I was adamant on taking them to prepare for an emergency situation on the plane. When booking my flights, the fine print on the airline websites said that if you were traveling solo that you would have to be able to carry out a variety of functions, such as fastening your own seat belt to transferring to your seat from the aisle wheelchair, but most alarming was the ability to get to the emergency exit by yourself. I called the airlines to get clarification and there was no one said definition. I tried to explain my situation as having a broken leg. One representative said that well as long as I was not paraplegic then it should be okay, but basically it would be determined at the airport whether the airline would let me fly alone or not. Later I found out because there is no evacuation plan for disabled passengers, those flying alone need to be able to help themselves. I was shocked but not going to let that deter me from flying solo.

Later that week, I went to my physical therapist and told her that I needed to learn how to use crutches; I needed to prepare. She said it wouldn’t be possible, but I insisted. Hesitantly, she advised that I get a second brace to prevent my foot from dragging. After multiple appointments with the brace shop to get the sizing just right, I was ready to start using crutches. With only 4 physical therapy sessions left, I knew I would be pushing it. Unfortunately, the ease that came from using the walker disappeared with the crutches. My right leg kept on failing to properly support me as I tried to bring the other leg forward. With my last physical therapy session today, I thought I’d give it one more go! My visit turned into a warning, however. I almost tipped over on the crutches, the closest I’ve fallen since my biopsy. The physical therapist stopped then and there, giving her recommendation that the crutches were not a good idea at all. I had to accept it.

In the end, there is only so much you can prepare for. I have my walker to help me get to an emergency exit, even though it’s not ideal for that particular scenario playing in my head. Nevertheless, I accept the fact that I can’t be ready for every possible situation that can come up and that’s okay. I might never be 100% ready to travel alone on a wheelchair, but it won’t stop me from trying, making mistakes, learning to be vulnerable and relying on others. Trying to prepare for every situation just delays us and makes us anxious about taking the next step. Some never take that leap because they wait for the right time, person, circumstance, condition, or situation, but how much do we lose from not jumping into the unknown? What could we have learned from being vulnerable and not fully prepared? Who could we meet and how could we grow? You’ll only know when you take that first step, even if it takes you halfway across the world in a wheelchair. As I packed the last of my things into the suitcase, I put away the crutches, ready to learn and grow on this trip of a lifetime.

On Matters of Love

My alarm woke me up at 5:53AM. Usually my first reaction is to hit the snooze button on my phone, but this time I couldn’t afford to. It had been 6 months since my last electromyography test (EMG) and today was the day that I had to repeat the test to see if my condition was progressing, if at all. I had to be ready to leave the house at precisely 6:59AM, the scheduled pick up time of my Access-A-Ride van. I showered, threw on some comfy clothes, and scarfed down breakfast before heading out the door.

7:06AM – I see the MTA Access-A-Ride van pull up to my driveway. I was happy to have a ride to my appointment so that I wouldn’t have to worry about the subway elevators possibly breaking and delaying me. A friendly driver and a disgruntled passenger awaited us as the lift hoisted Urvi and me into the van. Within minutes, we set off into a sea of traffic. The other passenger mumbled impatiently as the van crawled towards the city. I, however, was not keen on getting to the hospital.

In the beginning of 2017, I had 3 EMGs done within 3 months by 3 different hospitals, requiring their own doctors to analyze the information they received from sending electric shocks and sticking needles to measure muscle activity throughout my body, even my tongue. These EMGs had alerted my prior neurologists that the neurogenic changes in my leg were resulting in the loss of motor function and muscle atrophy. Now 6 months later, I had to repeat the test to reassess the damage.

Worrying thoughts raced through my mind. What if my arms or left leg were affected? What if they tell me that I would lose motor function in both my legs? But worst of all, what if they tell me I have ALS? I had to stop myself then and there and replace those thoughts with what I had learned these past couple of years about love: Give love, receive love, but, most importantly, love yourself.

Love Unconditionally My marriage deteriorated the last 2 years and while I can hopefully say that I tried to save the relationship, there are some things beyond our control. My then-husband had to figure out what he wanted and, in the end, it wasn’t me. I knew for months that he had made his decision, so when he was finally able to verbalize his feelings, I hugged him and told him it would all be okay. That day we both cried as we decided that it was best to end the marriage. Many were angry at him and the situation, but I never harbored ill feelings towards him. I promised myself when we got married that I would love unconditionally in our marriage, even if it meant to love and respect the decision that finally ended it. It’s not to say that I wasn’t upset or saddened, but the choice I made to love unconditionally, meant not to expect anything in return. This made it easier for me to move on with my life.

Receive Love Looking back, I realized that I didn’t receive the love that I deserved, because I didn’t think I deserved it. Giving unconditionally can be detrimental if it’s not balanced. I felt that I gave all the time, especially in my last job, but received nothing in return. There were times when I felt that I went above and beyond to prove myself, but I was met with indifference. Losing my job soon after the divorce made me feel vulnerable and subsequently opened the gates for me to see the love that I deserved. Luckily, I found a job soon thereafter where I felt valued. I would make mistakes my first few months and beat myself up for it, but it was my friends and colleagues who reminded me of my capabilities and urged me to be proud of myself. I was no longer surrounded by people who made me feel less than. Once I was removed from that toxic environment, I was able to open up and let all the love and support fill my life to help me move forward once again to a new chapter in my life.

Love Yourself That new chapter didn’t take long to start. Just one month into my new job, I started falling and 3 months thereafter I ended up with Urvi. My friends and family were by my side, but their love alone wasn’t enough to fight this battle. I needed to join the fight, as well. Since the first fall, I fell into despair, cursing every part of me that didn’t work as I used a cane, then a walker, and finally the wheelchair. My health deteriorated rapidly as the twitching and sensory symptoms spread throughout my body. I stopped living for me and started getting panic attacks. Day and night, I would scan the medical reports for hidden information like a detective looking for clues, but the anxiety consumed me.

Thankfully, I had decided to talk to someone about all my stresses and during one of our talks, she posed a question that I had never thought about till that moment. “Mayuri, does a diagnosis or lack thereof change who you are?” I was caught off guard and didn’t understand what she was eluding to. She asked again, “Does it really matter?” I told her “Of course it matters as the diagnosis would lead to a possible treatment.” She rephrased the question, “Does a diagnosis or lack thereof change the core of who you are?” I stopped. I felt like my own worst enemy. She was right. Whatever was happening shouldn’t and wouldn’t change who I really was. I had halted my life for no reason. I had stopped loving myself a long time ago.

From that moment on, I knew I had to change and that I had a choice to live life to the fullest or drown in my own worries, and I wasn’t about to choose the latter. I decided to start loving myself and being grateful for the person that I saw in the mirror, even though she was scarred and broken. I celebrated every step that I was able to take and rejoiced my resilience even when I wasn’t able to. Only then did the healing process begin from within. We can give love and receive love, but until we can love ourselves it all means nothing. As we neared the hospital, I reassured myself that no matter what the EMG results showed, it wouldn’t change who I was, because I had finally learned to love me.


Society paints images of people all the time.

Sometimes, we blindly accept them as the viewer. Perhaps, it’s even worse accepting it as the subject being painted.

How has society told you how a woman, a person of color, or a disabled person should look like? Do you accept them? I don’t. I plan on painting my own picture and proudly showing it to the world.

Society tends to consciously or subconsciously judge you and put you in a box constructed out of preconceived notions, depending on how you look. There was a span of a couple of weeks in early 2017 when I was reliant on my walker to get around. I didn’t have enough energy to walk a couple of blocks, let alone take the subway and fight rush hour foot traffic, so I decided to take the taxi to and from work. My brother found a cheap taxi service that would charge $60 round trip from the suburbs into and out of Manhattan. I had just started my new job barely two months prior and could not afford to take an extended sick leave. With no other way to travel the 14+ miles to get to work, I had dedicated my paycheck to pay for the cab service.

Most of the cab drivers were nice, but over 1/3 of them had the same question for me as they were folding my walker and storing it in the trunk, “Oh, you work?” Their perplexed looks always had a hint of horror and surprise. A handful of them would pursue the conversation further and would suggest that I go on disability. I couldn’t walk more than two blocks at the time without a good 20 minutes passing by, but luckily my job didn’t require me to make frequent coffee runs. In fact, I had a standard desk job and my arms and left leg worked just fine, so I would reciprocate the look of horror and surprise when they implied that I would not be able to do my job, let alone any job. It bothered me for quite some time how people’s perceptions changed as I walked slower and slower with the help of a mobility device. I realized soon enough that society had decided to repaint my identity without my consent and I wasn’t about to let that happen.

Welcome to Adventures with Urvi! I hope you enjoy the images that I paint of myself in the months to come.