Before and after October 2020
I write this text as I try again to find the words to make me understand that I am only 32 years old and already have a chronic illness. I say 'again' because I had my annual medical appointment with my neurologist last week. It is weird when
people ask me if it was a good appointment. It would be better, of course, if he said that I was doing so perfectly that I could stay off medication. Even better, I was cured: I could move on with my life without all this medical vocabulary. However, here I am with excellent treatment, once with "only" sensory symptoms, now with a foot drop. A very frustrating foot drop. He says it will probably get better in the next six months because I relapse and remit. Should I be hopeful? Should I believe him? What should I consider about this unpredictable disease?
I am a clinical psychologist, and before the diagnosis in 2020, I was working in a palliative care setting. It was a whole new experience to be on the other side of the table. I was being the patient for the first time in my life. Moreover, I had an intensive understanding of the consequences of poorly delivering bad news. I will never forget that the first neurologist that saw me said I was going to shine - can someone explain what that means? - and it would be a five-day treatment. The second neurologist told me I would have a completely normal life and insisted that I should drink more coffee to deal with fatigue. The same doctor was confident enough to say that my pain was psychosomatic. As a psychologist but mainly as a human being, it was overwhelming to hear those cruel words. It took me months to stop doubting my body.
As someone that works in palliative care, I understand, now from a different perspective, what is total pain. Cicely Saunders, who created this multidisciplinary care, thought pain is not only physical but emotional, existential and social. It is, in fact, all that. Terrible and constant pain in my legs and back, sadness, frustration, hopelessness, and financial burden. How can I find the words to describe the burning sensation in my legs? Does it make sense that it happens even when I am underwater? I had so many plans before this diagnosis surprisingly appeared. Plans for work, for moving away from Brazil, for having children. This illness questions all the sense I have until October 20th figured out for my life.
Although I was used to working with talk therapies, I found out that words are insufficient to describe or tell everything on my mind. That's why I had to find new ways to cope. Writing, painting and gardening are my very best allies in helping my mental health.
I believe it can be so hard for my loved ones to hear my despair. This is one of the reasons I started to write non-fiction short stories. Besides that, I think the writing process allows me to give a narrative to all this MS nonsense. I write again and again about that first day, my first thoughts, and how I dealt with a non-cooperate body. Then, when I am done writing, I feel relieved; I feel like some of my anxiety left my body through my hands. Even though I have lost my sensitivity, I found hands-on activities very pleasurable. I started to do some gardening and painting. I forget about everything as I am concentrated on the green leaves or the brushes. It does not cure my body, but it definitely helps heal my soul.
MS taught me the hard way that life has no guarantees indeed. I cannot change the fact that my foot drop continues to happen no matter how much physical therapy I do - and will continue to do. Without my cooling vest, I cannot spend too much time under the sun. I cannot decide, carelessly, to start trying to get pregnant. But, I can be brave enough to change careers and allow myself to dream big about my moving to Canada. To have a chronic illness can be felt like grief, and as in bereavement, it comes in waves. But, when the sea is calm, I can look forward and see the beauty in life. Despite the toughness of this incurable illness, we will continue to be warriors.
I'm a Brazilian who will soon move to Canada with her partner and two sweet kitty cats. I was once a clinical psychologist and I now dreaming of becoming a horticulturist and, who knows, a horticulture therapist. I love gardening, music, and writing non-fiction short stories. Last but not least, MS happened in October 2020.