Reading my annual birthday note to myself just 7 months after I wrote it felt so surreal! I’m so happy for pushing forward and living life to its fullest. Not only did I complete my one year work anniversary recently, but I’ve traveled abroad on my wheelchair, have taken charge of my health, and have dreams to open a social enterprise with the mission to helping other people with disabilities from all different backgrounds…
Happy Birthday Me
Some say that your career, relationships, physical wellbeing, and sense of spirituality are some of the critical pillars of a fulfilling life. What happens when almost all of them come crumbling down one after another? Well, you slowly pick up the pieces and rebuild.
In the span of two years, I’ve had to recover from broken relationships, dust myself off after losing my job, and face a myriad of diagnoses that range from irreversible to possibly life threatening with still no answer in sight. I’ve seen my dreams shatter into pieces. My ability to walk, run, and have a ‘normal’ life taken away from me. I’ve had the audacity to question whether anyone could even love this ‘disabled’ version of me. Would I ever be able to hold my own child in my arms? I’ve cried enough to fill rivers. I even dared to ask God, “Why me?”
Why is this all happening? I’ll tell you why. I’m the luckiest girl in the world and I wouldn’t be able to see it if all these challenges didn’t come my way. It was hard to break off from old relationships, but it made me a stronger individual and allowed me to focus on myself today when I need to the most. Losing my job saved me from further stress in a hostile work environment that already did so much damage to my confidence and feeling of self-worth. I had to come back to NYC, which I probably never would have if I wasn’t forced to do so. I was brought back to a place of safety and love right in time when I started falling ill. I started falling around Christmas 2016 for no apparent reason. I suddenly started losing muscle mass in my right leg and in the matter of a month went from using a cane to a walker and soon thereafter a wheelchair. The first set of neurologists said that I have signs of motor neuron disease, possibly ALS, even though my symptoms were atypical and not textbook normal. Months of testing ensued. Every possible MRI, a sensory evoked potential test, multiple EMGs, a magnetic stimulation test, and even a spinal puncture was conducted, but something was still off. The doctors gave up in my eyes, wrote me off the ALS clinic, and told me to start taking a drug for ALS patients which has a horrible efficacy rate. I asked if I was being diagnosed with ALS? They said no, since I didn’t have upper motor neuron signs, but taking the drug might be preventative. I asked about my sensory symptoms, which are unheard of in these cases. They couldn’t explain it and just told me to make an appointment with the ALS clinic for further monitoring. If you google ALS, terms like ALS life expectancy come up. Don’t click on those links. They don’t do anything for your spirit, as I learnt the hard way.
The will to fight is such a precious gift that is sometimes lost when others tell us there is no reason to fight. I wasn’t being given a reason to fight. I felt everything slipping through my fingers. Despair and panic attacks started settling in. I thought it if it was ALS, let it act fast. I wasn’t keen on suffering. Some recommended taking anti-depressants.
Anti-depressants. Chemicals to alter my thought process. There was something wrong in this picture.
Chemicals to alter my thought process.
My thought process.
You know those stories when someone dies and miraculously life returns to them in an instant. They gasp that sweet breathe of fresh air that brings them back to life. Similarly, it had hit me and I gasped. I didn’t go through all these challenges that made me stronger to give up. I wasn’t brought back to a sweet and loving home to let myself go. I wasn’t supported by friends and family to just fall through the cracks. I had to fight. I had to fight for myself. Sapere Aude. Have the courage to think for yourself.
The name of a highly recommended doctor at Mt. Sinai sat on my desk for weeks. I never called her since we already had a set of doctors, however, my confidence in them had faded. So I took a chance and made an appointment with her. I thought the worst would be that she would confer with my original doctors. I went into the consultation not expecting anything, but quickly everything changed. She agreed with me that my symptoms were strange and because I lacked upper motor neuron signs that she did not think I had ALS at this stage. She was curious enough to fight for me. She told me to stop taking the ALS medication. Good decision. She ordered a biopsy hoping to find vasculitis, a treatable blood vessel inflammatory disease. I won’t lie. My hopes did go up again, but I was very cautious. I had been so disappointed with all my results so far.
The biopsy results didn’t show vasculitis. I was crushed. To date that was the only plausible explanation with that had a treatment. The doctor continued. The senior pathologist also didn’t think, in her experience, that it was ALS. That caught my attention. Can she tell? I asked. Apparently so. The pathologist’s report came back stating that they found something in my muscle tissue. Abnormal formations that could be a congenital disease that usually 1 in 50,000 babies get, out of which 4% see manifesting in adulthood, a 1 in 1,250,000 chance. The only way to confirm is getting a genetic test and that would only confirm the diagnosis, but unfortunately there is no cure. It might be contained, however. The neurologist said if it isn’t that then it might be some type of localized motor neuron disease, also incurable, but dangerous if it spreads. In the meanwhile, we are trying some IV steroid treatments to see if I will respond.
So, as of now, I see no cure. Still no concrete diagnosis. I had to pause these past couple of weeks to understand what was happening. Things are still uncertain. I don’t know where life is taking me, but my journey has been worthwhile so far. So, I thought what does it matter what the diagnosis was? Does it change who I am? Does it change how I live? Does it change my feeling of self-worth? Does my diagnosis define me? No.
I define me. I choose to live my life on my own terms. I choose to celebrate all the love and blessings that surround me. I choose to pick up my own broken pieces and build my life again. I choose to not be disabled, but uniquely enabled. I will rebuild my dreams, even though they may not be the same as before. I will live life to the fullest, even though I have a different mode of getting around. I accept and love myself, even the broken parts, because they make me who I am and I’m pretty awesome. Lastly, I know someone will love me for me, as all of you have. So, I thank God for all the challenges he has thrown my way, for perhaps I wouldn’t have been able to see how blessed I am by the time I turned 33. What a beautiful birthday gift. Happy birthday me.