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Learning to Love My Wheelchair, 'Sylvia'

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How does one learn to live with the grief of losing themself? The first time I met Sylvia, I felt disdain towards her. She was in fact lovely in her own way, but I was not ready for all that she offered. The two years before I met her had been difficult and heartbreaking, to say the least. Sylvia represented the version of myself that I was not comfortable with others seeing, with others judging or speculating — a reflection of myself that I was not yet ready to see.

Sitting next to the round wooden table in the nook, I said to my boyfriend (now husband), “I think I need to go to the hospital.”

His mother and father were sitting with us, and his mom politely asked, “Is that what they told you to do?”

“No,” I responded. She knew my doctor had been scheduling lots of tests the last several weeks for the recent acute decline in my health. We left their house and when we arrived in the emergency room, I could barely walk the 20 feet from the car to check in at the window. I could not catch my breath and as I stood my body felt like there was a weight inside of it being pulled down to the cold linoleum below. I wanted to crumple. I was weak and tired, even the thought of lifting my arms would require more strength than I felt capable of mustering.

When I finally laid down, I had never been so happy to see a gurney. As I lay there, my face began to feel hot and it was as if a switch had been flipped in my body, a lightning bolt shot through me, and as I looked at the heart monitor, my pulse rose to 187 and my blood pressure went up right along with it. I spent the next couple of days in the hospital, where 17 physicians evaluated my case. They thought perhaps there was an alternate pathway in my heart and felt fairly certain that I did not have cancer (thankfully they were right about that part).

A diagnosis came after I was discharged from the hospital and the cardiologist I saw who specialized in electrophysiology ordered a tilt table test. I was diagnosed with postural orthostatic tachycardia syndrome (POTS), a condition that is not well understood that is a result of dysfunction in the autonomic nervous system. The prognosis is good in the sense that there is no effect on life expectancy, but difficult because it can have a powerful impact on quality of life. Some of the symptoms I experience on a regular basis in varying degrees are: fatigue, brain fog, dizziness/lightheadedness, elevated heart rate and blood pressure, nausea, GI upset, esophageal reflux, urinary issues, dry eyes, dry mouth, sensitivity to light and sound, muscle aches, joint pain, weakness, feeling short of breath, headaches, and depression.

Looking back, I now realize that I had been showing milder symptoms of POTS on and off since I was a pre-teen, fatigue and occasionally blacking out being the most prominent symptoms. When I was a little girl I wanted to travel and to help other people, as I got older, this dream never changed. In fact, my plan after nursing school was to go to Africa and live and work as a nurse. By the time I was diagnosed with POTS, I had traveled to four continents including North America, had climbed countless mountains, two with glaciers at the top, skinny-dipped in the Caribbean Sea, learned some very basic Swahili, adopted a chihuahua, worked as an RN on a critical care unit, and fallen in love. I was 26 years old when I was diagnosed with POTS.

Now would come the challenge of learning to integrate my illness into my life. Along the journey, you eventually reach a point where you have a choice. Do I keep waiting to get better, or do I endeavor to live my life by accepting and appreciating my life and my body as they are? The answer may not be the same for everyone, and like me, you may find that you reach this point several times. Because after all, it is a journey and not a destination.

To feel like I was living and not just surviving, I needed to stop treating my illness like it was a burden. I needed to stop seeing POTS as an outside assault or a backpack weighing me down, and learn how to treat it like it was a part of me, just as my limbs are a part of me. I needed to stop fighting against my body and start fighting for my body.

My husband and I got married a little over a year after I was diagnosed with my illness. When we took our wedding vows, we had the unfortunate advantage of being well-versed in our promise to love each other in sickness and in health. Finding someone who will love you at your worst and comfort you in ways you need when you are most vulnerable is a gift to be cherished and celebrated.

For our one-year anniversary, we decided to celebrate at one of our favorite vacation spots, Disneyland! The only problem (for me) is that it would be my first time experiencing the Magic Kingdom with the full weight of my illness, and the knowledge that I would need Sylvia to carry me began to settle in. Corey had found Sylvia several months earlier; he knew I needed her long before I had the resolve to acknowledge the true extent of my limitations. She sat for several months. I despised her. Every time I caught a glimpse of her, I would avert my eyes.

To help me make peace with her, Corey took me to the fabric store and I picked out some seafoam green vintage-style material and found some large floral print tape. I came to the conclusion that if I was going to sit in a wheelchair, it would need to have some color and style. Corey bought me a gel foam seat and sewed a seat cushion cover out of the fabric I had found. We applied the floral tape to the panels under the armrests and installed purple grips on the handles. It was after this transformation that Sylvia blossomed into much more than a wheelchair. She grew into a friend that I would learn to rely on. It was Sylvia that would carry me when I was no longer able to carry myself.

It has now been around seven years since Sylvia came into my life. I love her and am so incredibly grateful for all of the opportunities she has given me. She has carried me in airports and to final destinations. We have visited California, Arizona, and Florida. My symptoms are always worse when I travel, and I need time to rest when I arrive, but with Sylvia as my companion, I am able to do it.

Our trip to Florida was my first time on the east coast, and my first time going to Disney World. We went to celebrate my mother-in-law’s 70th birthday, and I cannot imagine a more fabulous place to do that! Sylvia was amazing and although she needed rest the last couple of days of the trip, I realized something magical when looking back on that journey. For most of the trip, my memory does not recall having to be in a wheelchair; it simply recalls the joy of moments, and the wonderful rides and adventures we had.

Originally published: April 11, 2022
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