I live in fear that one day I’ll try to put my feet on the floor and my legs won’t cooperate. I’m not scared about being confined to a wheelchair or scooter. I worry about losing my independence; creating the need for me to get home health care or require my parents to move in with me or vice versa.
My concern was cultivated by real events. The connective tissue disease that attacked my organs and gastrointestinal track has decided my spine and the limbs that depend on nerves coming from it is now a good place to ravage. So a simple trip to the bathroom was suddenly impossible one day. In truth, my legs had seemingly fallen asleep several times over the last year despite the fact that they were in use. And once, my left leg even felt like dead weight when I tried to get up from my sofa after a full day trekking around the city. But, a couple of extra anti-inflammatory pills and a nap usually reset my body; that is until that morning.
I woke up and realized I could see my legs but I could not move them. Compounding the problem, my neck was stiff, my left shoulder was immobile and a headache made it hard for me think. Thankfully, my finance was in the bed next to me. Stunned, I didn’t say anything to him about my plight as he raced to the shower in my bedroom to get ready to leave to pick up his son.
I rocked back and forth using my right hand to push me. I’d hoped I could throw myself into the floor and crawl to the bathroom in the hall, which was just a couple of feet away. However, even the slightest movement sent pain so sharp down my spine I couldn’t stop the tears from flowing. Helpless, I waited until I heard the water stop running then I shouted for my fiancé.
He dashed out of the bathroom with a frightened look on his face. “What’s wrong?” He shouted. “Do you need to go the hospital?” “I don’t think so,” I replied as my chest heaved due to my crying. “I just need to go to the bathroom.” “What’s wrong?” “I can’t walk.”
My fiancé rushed over to my side of the bed and lowered himself down. “We’re going to do a fireman’s carry. It’s going to hurt when I pick you up, okay?” “I understand,” I said as I took a deep breath trying to ready myself.
I wasn’t prepared for the amount of pain I felt as my fiancé had me stand still while he pulled down my pants then helped me slink down onto the toilet. I was embarrassed as he stood by the door waiting for me to finish. Even though wiping myself sent terrible aches across my shoulder and up my neck, I was determined to do something for myself.
My fiancé cancelled picking up his son that day so he could take care of me. A few times, when he left the room and returned, he caught me crying. But my tears had nothing to do with my sudden paralysis. I was distraught that he had to give up a day with his son, his true love, to be with me.
The next day, despite nagging pain, I manage to stand up and take short, choppy, excruciating steps. I made sure he saw me so he knew it was okay for him to go and spend the day with his son. I needed him but I couldn’t bring myself to ask for a second day of sacrifice.
For months, my legs worked well enough for me to walk the mile and a quarter to and from the train station every day; that is until that Friday. I was crossing the street a block from the courthouse near my home when my left leg spontaneously crumpled beneath me. I tumbled to the asphalt in the middle of an intersection just as cars began to turn. Luckily, a police officer in a marked car pulled up just as I went down. She stopped traffic until I could get up and gather the few items that fell out of my purse. The throbbing in my ankle told me I was hurt. Yet, I pretended I wasn’t especially when a passing motorist rolled down his window to laugh. I didn’t respond. I held my chin up and limped the two blocks home. The Monday after my fall, I made an appointment at the Hospital for Special Surgery.
After a day of X-rays and an MRI, my pain management specialist described my arthritis, spinal stenosis, inflammation, military neck and bone spurs. My spine was twisted from scoliosis, nerves were pinched, and several of my vertebrae and discs were bulging. A lot of the damage could be traced to my chronic illness.
Together, we drafted a plan that increases the invasiveness of the procedures needed to preserve my ability to walk. In the meantime, I was given a fall risk bracelet and a cane. Armed with all of these things I resumed my life, pausing every two weeks for some sorted outpatient procedure.
Each time I walked out of the hospital, I calm my fear about losing the use of my limbs by vowing to put one foot in front of the other. And, if someday my spine or my legs no longer allow me to walk, I’ll roll on
About the author: Nika C. Beamon is a journalist working in New York. She is the author of Misdiagnosed: The Search for Dr. House, about her quest nearly 20 year quest for the correct medical diagnosis. In 2009, Chicago Review Press published her non-fiction book, I Didn’t Work This Hard Just to Get Married.