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.