What if the year 2020 disappeared? My kids are big fans of the youtube show, Aunsum Time. Aunsum Time asks some hypothetical, philosophical, and scientific questions. Lately, they have been posing the question, what if certain years vanished such as, “What if the year 2020 disappeared?”
Disappearance of time, disappearance of cells, they way or normal lives have changed, all these concepts float in my mind. Time floated by slow and fast in the year of 2020. Here we are already, at the one year anniversary of life changing. My CD20 B Cells that attack my myelin disappeared on Friday during my Ocrevus infusion. Today is the day before my birthday, tomorrow is the day after.
So many have felt the loss of this year. When the Covid-19 lockdown started, everyone seemed to be focused on survival until life went back to normal. However, when would we get back to normal? Many doctors were predicting that this drastic change may last years: we were holding our breath beneath a mask, until the next week, the next month, the next year. My life, however, had already prepared me to live a little outside the norm. Sufferers of chronic disease often experience social isolation, shrinking to the sidelines. Call us wallflowers, call us whatever. I became comfortable hiding, because I was uncomfortable with people seeing my disease. It was the BIG MS, and I wanted to mask it. I was ok with laying low. I had been doing it for years.
I had been set up in life, with the unique opportunity to notice the way time can vanish. At the age of 4, I had my first “real” birthday, on the first Feb 29th since my day of birth. We were living on my Grandpa’s childhood farm, and we had the party in the whitewashed brick house my Great Great Grandfather built. I approached my ancestral home, shaded by overgrown Ailanthus trees. My extended family was there, everyone shouted “surprise!” We had a “weenie roast” over an open fire, my mom brought out my favorite strawberry short cake, and I was the focus of attention and admiration. It was set in my mind as the perfect birthday. The day was marked for its rarity.
However, my real “fourth” birthday, at the age of 20, brought a new kind of attention. I had been experiencing mysterious numbness and tingling after a sledding accident. My urinary frequency, and crushing fatigue had been increasing, so before the birthday, I saw a neurologist. He ordered an MRI and five days after that pivotal fourth birthday, I was diagnosed with MS. My life was changed in ways I would not comprehend until my next relapse, two years later. That October, I was forced to reckon with my MS; I woke up and found I couldn’t hop out of my bed. I slunk out and clung to the walls. I was a Mormon student at BYU, but by all appearances it looked like I had drunk too much at a frat party. (BYU doesn’t have frats and Mormon’s don’t drink.) I was again a unique oddity, but this wasn’t in a special way. This felt sad. I did not feel safe to stay at school. I didn’t know how I could reach my classes as I lived off campus in a third floor apartment and regularly walked 2-3 miles a day. I borrowed my Grandma’s cane that she no longer needed. The stress was compounding, and that brought painful and violent back spasms. I withdrew from my classes. I had support: my family and a long distance relationship with my boyfriend. However, I had never felt more alone. I knew there were others like me with MS, but I only had met one woman, a friend of my aunt’s, with one variation of the disease: Primary Progressive MS (many MS patients eventually develop this more severe form, PPMS). I moved back home with my parents, and folded myself into the isolation of the mountains of Western North Carolina.
I worked hard to finish my degree, but I also despaired. My icon became the disgruntled “House” character (Hugh Laurie), a brilliant but sardonic doctor who walked with a cane and solved medical mysteries. I kept going, but I felt like time was falling through a sandglass. My recovery was taking much longer than I expected for a 22 year old. My neurologists didn’t understand my intermittent walking issues and violent back spasms. I went out sometimes, but I was afraid to drive because I didn’t know when my nystagmus would cause my vision to blur. I was afraid of parties because the noise was overwhelming. Most of all, I didn’t want to have to explain why I was this way and I didn’t want anyone to see me at my worst. I wanted to keep it private.
But I didn’t want to feel sick anymore…
My parents took me to a reading of Spoken Word by the poet Saul Williams. I was fascinated by his global perspectives. (I had been studying anthropology and international development at BYU.) Then he revealed his birthday, Feb. 29th and I cheered loud, a lone voice of commonality. I do not know what it is to be black. I was raised in a world of relative safety, and got to spend a childhood without so much care, besides intermittent illness. I was privileged to grow, having my needs met. I grew in a society that accepted the way I looked, and did not cast aspersions against my skin color. Friends and family still wished me happy birthday, in years when I had none. I had lived a lone Leap Yearer, and here was Saul Williams who shared the day. He could know without me explaining the difference of time we experience. The years marked by multiples of four.
After his performance he stood, relaxed in the lobby of the auditorium with a line of college students waiting to talk. I longed to shake his hand, and tell him how he spoke to me. He was the first person I had personally seen or heard speak that shared my birthday. His unique perspective was inspiring for an aspirational writer. However as I sat holding on to my cane, I thought of the impossibility in that moment of me waiting in that line. I didn’t feel I belonged. I still felt other, without the courage to raise my voice for the attention it may bring. So instead I wrote a blog post:
Thank you, for sharing my day of birth and telling me what you have learned. All days of birth must be shrouded with uncertainty. The existence of a birth, half believed through evidence, and a lack of knowledge of what came before first memory. But you know it. Aloof, floating in the mists of Brigadoon, February 29th.
When I was in Paris I studied Language, through the medium of undergrad anthropology, through the medium of BYU, through the medium of text, language, and internet. I remembered reading that everything we know and are taught is prior text. Culmination of generations, thoughts formed, truths learned, opinions gleaned. Giving us commonality to share experiences. So there is enough commonality to bridge the gap of “race.” A black man can speak to a white girl. She struggles to express voice, organize scattered thoughts. She writes the voices that whispered to her while you talked. The tangents taken and thoughts bubble through. Then a shift. I needed to listen to you. But I couldn’t listen without the other. The realizations. Ortega was right. All utterances are exuberant and deficient. I didn’t even hear everything. And that missing will lead me to study your work. Everything has changed. Thank you.https://elizabethmcl.blogspot.com/2010/02/
Where is this all leading? What commonalities are shared by the year of 2020, the sometimes absence of my birthday, and my intermittent loss of time due to symptoms caused by MS?
So many have felt the loss of this year more than me. So many have lost people important and invaluable. Lives cannot be replaced. I have not been untouched by this pandemic. I have less access to care in North Carolina as I have out of state insurance, this impacted my Ocrevus infusion. I got help from Patient Navigators and they helped me find a way, so I would not be faced with the risk of traveling to and from California so close to my infusion. We, with Chronic Disease may be used to our lives being interrupted, but so many are also experiencing interruptions in Healthcare.
We got through 2020, but 2021 is facing us and we are faced with still getting through the Coronavirus pandemic. A year was already lost. A year of my kids not being with their Dad, their Dadi, and Dada, and all the rest of their family in California. I have felt so much guilt over that lost time. On my real birthday last year, before the shut down, I was looking forward to traveling and sharing about my condition of Multiple Sclerosis. I finally found comfort sharing my story, and being transparent about my vulnerabilities. So did I miss it? Did I miss that year? Was it sucked away to the mists of Brigadoon along with all my missing birthdays?
The greatest gift my birthday has given, has been the marking of time by years of four. May I propose we look at the time of Covid-19 as ¼ of four years. My next birthday, my 10th birthday, I will turn 40. I have hopes for what my life will be in the interim. I hope to be living with my husband and my kids, having written a book or two, and maybe even get the chance to meet Saul Williams. I am going to keep sharing my unique perspectives on life as a Leap Yearer, my Life with MS, and Life going on in the time of the Coronavirus.
Please, before you go:
For this year’s unbirthday, I am hosting a fundraiser on Facebook, for the Race to Erase MS Foundation. They donate 71% of their funds to multiple sclerosis research.
Please also check out this video of spoken word by Saul Williams. If we really support #blacklivesmatter we need to listen to the inequalities suffered, and the way slavery still permeates our society. Thank you for reading my thoughts. May God be with you till we meet again.
Just for fun. 😊