I’m ok… I think I’m ok… well, maybe I’m not ok. Everything feels too heavy, too important, too intense right now.
I tend to answer the question, “how are you doing?” in direct relation to 1) how well I know you 2) how well you know what’s going on in my life already and 3) how good of a listener you are. So if you’re a casual acquaintance or you’re prone to interruption, you will probably get “I’m ok” and it’s not a lie. I get up each morning, I brush my teeth and shower, I make three meals a day (fine, I probably use DoorDash for some of them), I pet my dog and I work full time in a demanding job. So you know, I’m functioning; I am ok.
But beneath all that “being fine,” there is a rippling current of being NOT ok that is ever-present and at times bubbles to the surface. I’m desperately trying to keep a lid on the overwhelm right now because once it opens, I have no idea if I will ever be able to close it again. I have a tendency to over share when I’m overwhelmed, lost, confused or sad. When asked if I’m ok, there is a serious danger of me telling my entire life story and laugh crying my way through it as I do.
I’ve written that I’m hopeful that this procedure will help. I’ve also written that the science behind it is very cool and that I have faith in my medical team. But none of those things negate the fear and uncertainty of the next few months. None of those statements mean something can’t go wrong. None of them ease the burden I’m forced to carry. As much as people can offer to help (and they do!), I made the decision to proceed with a grueling bone marrow transplant. I decided hope was better than sitting back and deteriorating. The choice was mine which means I carry that weight when I get scared or overwhelmed.
When I was a child, I thought my mom and dad could solve any problem. We joke in my family that there were certain topics or areas of expertise that my sisters and I went to my dad for and others to my mom, and there wasn’t a lot of overlap. However between the two parents, there was no topic that they couldn’t advise on. I find myself longing for that type of knowledge and guidance. I want someone to tell me what to do. I want the all-knowing parent to hold my hand and speak from a place of authority. I want to unload my emotional and physical burden and have my mom make it better with her homemade chicken soup or lemon tea. Unfortunately, that isn’t their role any longer. My mom and dad can help me through this but they can’t make it better or make it go away.
Mental health is an internal struggle. I share my struggle with my doctors, friends and family. I love therapy (and strongly believe everyone can benefit from therapy). I have a brilliant support system full of people who love me and I still feel alone in this. There isn’t one thing anyone can do. Calls, texts and Marco Polos let me know that people in my life are thinking of me and provide momentary relief but I’m just not in a place where I have a tremendous amount of capacity to be emotionally stable. That sounds intense and it is.
Emotions don’t exist in a vacuum, they mix together. I have moments of joy, gratitude and elation but more often than not, I have worry, fear and trepidation right alongside the happy times. Chronic illness, MS, treatments, drugs, healing and acceptance are ever-present. I no longer have the luxury of a mental break from being ill and the daily decisions I must make to manage my illness. I’m trying to ride the wave and settle into this new normal. In my years of therapy, especially during dark times, I always knew (and still know) that ultimately I want happiness and strive for the light, but wishing doesn’t make it so. I have to be ok with my feelings and the fact that they change by the day, the hour and the minute.
I’m trying to find the comfort to relax into these dark times. It isn’t easy. Call it what you want – depression, anxiety, mood swings, overwhelm or just being human. Life is hard right now. Every decision I make involves intense and heavy feelings. So I talk, I write, I cry, I laugh and I continue to exist and work my way through the avalanche of emotions.
The author Matt Haig has become a personal favorite in recent years. He openly writes about mental health and his personal struggles in such a way — both fiction and non-fiction – that I feel seen and understood. If you or someone you know is struggling, pick up one of his books. It might help you understand the immense burden of these feelings and the internal monologue of trying to sort through them.
I’m productive and high functioning, but I guess my goal in writing this is to say it’s ok not to be. Just be.
“And that sadness is intrinsically part of the fabric of happiness. You can’t have one without the other. Of course, they come in different degrees and quantities. But there is no life where you can be in a state of sheer happiness for ever. And imagining there is just breeds more unhappiness in the life you’re in.”
Matt Haig, The Midnight Library