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I Win More Everyday

My name is Aleksandra. I have skimmed through this blog several times, and have read many stories of people who share the same story. On December 9th, 2015, I was diagnosed with Transverse Myelitis (TM), a diagnosis I have grown to fear and hate. TM hit me like a freight train, and that is not an exaggeration.

Before December 9th, I was an active, health conscious and optimistic18-year old girl. My feet were my primary source of transportation. I walked between 4-6 miles a day for school, work; everywhere. I felt quite invincible. Then, on the evening of December 9th, my fiancé and I decided to go out to town to spend some time with friends. We enjoyed our time at a local restaurant until I got up from our booth and felt a sharp, breath-taking pain between my shoulder blades. Assuming it was a very bad muscle pain from my workout earlier in the day, I tried to ignore it. Only when it started to radiate into my arms and torso to the point where I was slouching like a hunchback in order to relieve even the slightest degree of pain, did I express my concern.

I remember the fear and pain that I kept inside myself, and held a blank, mute expression on my face as I grabbed the pool stick to break for a game that we were playing with our friends. I lifted the stick and knelt down, and that’s when I realized I no longer had control over my left arm. I tried to bring it up, but it refused. My  fiancé’s face expressed the greatest look of concern, and he insisted on taking me to the ER right away. Being the stubborn person I am, I dismissed it and continued to try and play. I couldn’t process what was happening to me and I was in denial. Was I having a stroke? Is my heart giving out on me? Did I get poisoned?

My thoughts were interrupted by the silence around the pool table, and blank expressions on everyone’s face who saw me. I had not noticed my other arm go limp, and my legs unable to support my weight anymore. It was time to go to the ER. My fiancé and his friend carried me to the car, and they were just as scared as I was. They had to remain calm, and think on their feet as they realized I had progressed within an hour to being paralyzed from the neck down.

By the time we arrived at the ER drop off zone, which was only 20 minutes, I could no longer move. I was transported by wheelchair from the car. Everything is a blur from that moment on while being admitted. I just knew that I was dying. And I couldn’t let go of my fiancé for a second, afraid that those were the last moments I would have with him. Although I was semi-responsive to the nurses who hovered over me, my mind was in a different place. I began to have flash backs of my life, all the lovely things I have experienced, all the people in my life, the things I have done, and the pleasure of spending my summer with a man who turned out to be my guardian angel. I had never known fear until that day. I was brought in and taken to a room minutes after arriving at the hospital. I knew that wasn’t a good sign. That meant that I was a critical case above all the people who were in that waiting room.

I was told to undress, but I couldn’t. I was told to give a urine sample, but I couldn’t. I collapsed in the bathroom, unable to press the help button to call the nurse who was standing outside the door. I yelled and yelled until she finally heard me. They brought me back to my room. All I remember is hearing a code called and I was taken away into another room. Poked with needles 15 times, I cried and begged them to stop. I was in so much pain but I still couldn’t move. I couldn’t wipe the tears off my face. I couldn’t hear or see anything around me. Everyone seemed so worried, so confused, and so perplexed. They didn’t know what to give me, what to do-nothing. Thankfully they did rule out a stroke, but they couldn’t figure out what could have caused any of this. I fell asleep and woke up in an ambulance in the morning. I was being transported to a different hospital and assigned four different doctors.

Two MRIs, two CT scans, and a lumbar puncture later, my neurologist came into the ICU room that I had been assigned and gave the diagnosis – Tentative Acute Transverse Myelitis. I had never heard the name in my life. All I remember is being angry when he said tentative. Did he understand my pain and fear? Did he understand that tentative is not what I wanted to hear? What is really wrong with me? You are a doctor. Help me, please! But I stayed mute. Tears just trickled down my face and a blank expression while he explained to my fiancé and me what it was, how they think it works, and the prognosis. He explained that no signs of infection were found, and that they didn’t know what had caused the autoimmune response.

I was given intravenous steroids and copious amounts of hydrocodone. The opioids did nothing but got me high enough to not care, and to fall asleep for 12+ hours. I was visited by friends and family, and my fiancé who stayed in the hospital with me 20 hours a day, sometimes even spending the night in the empty hospital bed next to me.

The week in the hospital felt like months. I couldn’t do anything on my own, even urinate or control my bowels. It was torture. I felt helpless. My depression grew stronger by the hour. It was the holidays, my favorite time of the year. I watched the holiday commercials on TV of gorgeous women, loving happy couples, and I began to envy anyone who was able to move their body and do simple things like go to the bathroom and walk around and decide when and where they want to go. I felt like no one appreciated just being able to stand or move their body. I wanted death. I couldn’t stand a life like this. It had barely been a week and I was already having suicidal thoughts. Was this going to be the rest of my life? Is this all I will ever know from here on out? All my goals and ambitions of getting a PhD and going to the top medical university in Los Angeles just withered away within days.  I prayed that I would awaken from this dreaded slumber but geez, I couldn’t even pinch myself if I wanted, better yet, would I even feel it? The hilarity. Gallows humor kept me entertained.

Unable to tolerate being in the hospital anymore, I demanded to be discharged, and even bluffed to leave against medical advice. Finally, I was discharged the following Thursday, making it a week. All I remember is the horrific pain I felt every where in my body down to the bone, and trying my best not to puke my guts out. I made it home. I smelled like urine and my hair was globs of oil. But I was relieved to be in a bed, in a place I knew, around people I love. I felt a little more human.

To keep it short, the days and weeks following consisted of more depression, more embarrassing and helpless situations on my end, and yet trying to feel as normal as possible.

Slowly, I began to recover. First one finger at a time, one toe at a time, then holding a fork, picking up a cup of water, brushing my teeth, and putting on make-up. I started to regain hope in myself. I knew who I was, and I started remembering the strong and stubborn person that lived within, who wouldn’t let anything stop her from achieving her goal. I was feeling myself again. I felt hopeful. I wouldn’t let this devil of an illness change who I am, and break me. I fought the sickness and I win more every day.

I pray for everyone who suffers with TM, and I genuinely hope that the odds will be in your favor.

Thank you for reading my story.

Think people should hear about this?
  • Aleksandra

    Thank you for sharing my story.

  • pamela varmette

    My daughter was diagnosed with the same condition and she trained like an Olympic Athlete . She was able to regain lots of previous strength.

  • Jojo Acuña

    It was July 24 that I encountered such pain and fear. It was an excruciating pain I cannot forget. I wasn’t able to move my torso, my both arms and fingers without any symptoms before it occured. I felt like there were demons controlling my body and a bag of cement dumped over my trunk, tears flowed out from my tears due to fear on what my body was going through. I was rushed in the hospital then. My neurologist did advice MRI and a spinal tap. And finally, I was diagnosed of having Myelitis. I have to be stronger and still be positive on having this very rare condition. Thank God that I do have a supportive family and great friends. I am still in steroids and have spasticity and paresthesia but despite of this adversity I am hopeful that I will be fine soon even though I cannot find a support group here in Manila. I am glad I’ve read your blog and I do pray too to those who got this autoimmune disorder to be stronger and just keep the faith that we all soonest be fine. God bless us all and our supportive loved ones. – Jojo Acuña- exanimo_ja@yahoo.com

    • Jojo Acuña

      *tears flowed out from my eyes