Today I have had a hard day. And I could do what I would normally do – let the emotions pass in silence or contain them in a piece of art – but today I want them out in their ugliness. I want to share some of the feelings we so often hide, like fear, sadness, failure. I want to be as real as possible about them.
It could be any type of loss or heartbreak, the emotions are the same. The details are not important. But I have a chronic illness – a medically manageable chronic illness. It’s not even that uncommon. I’ve had it for over a decade. It should not have to affect my life as long as I’m on medication, but it has, and up until about one and a half years ago my symptoms got increasingly worse, to the point of me not functioning. I was in a dysfunctional relationship with an illness, and I let it affect every part of my life.
I took a chance about half a year ago. I went off the medication, and to everyone’s surprise, I got clinically well! As in all symptoms disappeared and I felt better than ever before in my adult life! I could exercise again, I was full of energy and felt strong. I recognised myself, my mind and my emotions, the feeling of a healthy body. My blood tests were catastrophical – I was definitely biochemically ill and no doctors could explain what was going on – but they decided to have faith in the possibility of me being an exceptional case and we agreed that I stay off the medicine but under observation, with the hope my body would heal itself also biochemically and the blood values would improve. We went through the risks and I accepted them.
Today, after spending most of the day at the hospital doing tests, the verdict came that my system has finally failed and I will be in a coma within weeks if I don’t get back on the medicine.
And it could be much worse – there are people every day getting much harsher verdicts than that – but we feel what we feel, and to me, this ultimatum tore down a wall of years of trying to be strong and fight and staying positive and suffering only in solitude, and I allowed myself to just feel. Everything.
I cried through all the tests, I cried on the bus home. I cried sitting watching the ocean and I cried walking home. I cried talking to one of those friends who gives beautiful, silent hugs, and I cried talking to another friend who compassionately set my options straight. I cried trying to eat and cried sitting down to share these feelings with you. And I’m not done crying.
I cried tears of failure, of being beaten by stupid illness, of finally being too tired of this shit to resist or fight. I cried for all the fucking hard years and I cried for the deeply rooted fear of ending up there again – a life that is no life to me, being someone I don’t know. I felt forced back into a dysfunctional relationship, deprived of my freedom. And I felt scared, really really scared. And stuck. And lost. And lonely.
And I started the process of mourning the door closed, that a part of my body has finally physically failed, has died, and I will from now on not live without medicine. We just have to make it work.
I cried for my own outstanding ability to fool the world, including myself. I cried because my body is not telling me it’s failing. It’s lying to me. It’s begging me to believe that all is good! And I don’t know how to trust it now, and that frightens me.
And I cried because it felt unfair, that maybe I was only given a few months of remembering who I am, of trusting myself, of feeling free and reconnected with the world. I cried, and I added some tears of self-pity.
I had no idea I had this many tears.
I had no idea I needed them this much.
Of course I will get back onto medication, choosing life, even if I said months back that I wouldn’t and everyone around me was cheering me on. Faced with only weeks left as the alternative I do believe most of you think it’s a great idea if I give in. The month ahead does not seem fun enough to give it all up for.
Maybe I just really needed these tears of surrender, tears built up over years and years of fighting. Maybe this is the beginning of something new and beautiful. It’s very possible my fear is unsubstantiated. I will not allow what was to come back. Maybe I will be strong enough to keep this feeling. Maybe we will live happily ever after, my illness and I. Maybe we just needed this time apart to find ourselves. But that is not the point. Neither are any solutions to any problems that anyone could potentially come up with, nor any comparisons to anything else happening in the world. The point is my tears, my fear, my sadness. My feeling of failure, of hopelessness, of loneliness. My surrender and my acceptance.
Raw feelings, served on a plate of words.
As I have promised you.
Johanna Benevole 