Before and after October 2020

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.