On our first date, we saw the movie A Beautiful Mind and I had no idea how prescient that movie choice would be for our lives together. I do not know if I did know if I would have walked away. Me, who never wanted to get married or have kids, wound up meeting, falling in love, moving in with, marrying, having kids with an Irish-looking police officer — of all things. Not at allll what I thought I would do, wind up with or even consider.
For many years, I dealt with his issues with ANGER — hot, white, extreme anger. I did not want to feel the pain — the pain of loving someone who is their own worst enemy. The fight, the losing battle against a mental illness that is too strong to win against. The meds that “work” but cause havoc on so many things and lastly, the paranoia. The fixed paranoia that will never, ever go away…
Most of the time, it is controlled but when it is not, when it flares up like a malignancy and wrecks his abilities to function, to be present, to be the man I love — well when that happens after I no longer built up my walls, after I gave up the anger, after I came to understand that this man — who though not by any means perfect or well — helped me survive cancer and did always love me and still does despite my faults — I recognize that all I feel is bereft, sad, scared and so so afraid for him. Not of him. Never of him. He is a gentle soul — he would not hurt anyone or anything.
In this country, mental illness is maligned and blamed for every bad thing that happens. I get it — I was very ashamed of his issues and also unsure of what this future would entail as for us, in sickness and in health was a vow we took on shortly after our marriage. It did not begin with cancer. It does not end with cancer.
For many years, I took care of him and handled all of the things that he could not. Those things have come back to my domain since I finished my cancer stuff. There are things that still are not done — do not judge my backyard when you come over as the garbage was not taken out for a few weeks — he literally cannot do it and I struggle with being out in the cold and touching garbage while on a clinical trial pill. Do not judge him for being spacy and confused — or for sleeping often during the day — he is struggling with a disease — just like I did with cancer — but his disease is not understood, is feared, is reviled, makes people not want to know him when he lets his guard down, makes people judge him, take steps away from him as though he smells, and manipulate and abuse him, too.
He is a trusting soul and the beginning of his biggest downfall was from trusting the wrong person many years ago. He went from being a police officer in the biggest city, busting bad guys, to having to defend himself against someone who tricked him fully into a faulty business arrangement.
For many years, his medical team told me to expect nothing from him, that he would never recover. He spent years on the couch, unable to function, unable to do anything but sleep. I moved around him, I tried to include him but when I could not, I took on the role of mother and father and anger. Anger was always inside me, the “unfairness,” the trump card that was mine — having married someone who could not function, who could not live up to the basic tasks that are needed to survive — to bring the car to the shop, to clean up after themselves, to take out the trash regularly, to help raise the children, to care for his mom in her old age, etc., etc.
When I was first diagnosed, I expected him NOT be there — it was all I knew. The night before my first appointment at Sloan, he was “sick” — he could not move from the bed. I knew in my heart that I would be alone again and in a way, as it is what I expected and was used to, I knew how to protect myself and how to propel myself forward. But then, he jumped out of bed and got ready and we went and he did not miss an appointment at all period full stop. I was flabbergasted and I still am — I gave up my hard coating, my self protection mechanisms and now all I am in exposed to emotions — as an “ice princess” I did not handle emotions.
Post-cancer, emotions are different — I feel them more, I experience them fully. But here I know I cannot move on — that this disease he has will not go away. It might dissipate when the pressure recedes but it also might not. The past has shown him to be resilient and bounce back from the brink but I now fear the opposite more than I used too — in the past, I would often think that I would be better off without him (why yes, I was a terrible person) but in my “defense” I had spent years trying to separate from the pain — trying to not worry about him — he who came home from NJ once beat up and broken and continued to have weird, strange things happen — he who left and was gone for days at a time with no word, no phone calls — the list goes on…
Now, though, I just want to figure out how to stop my crying, how to get back into “balance” with the world that he lives in — to know that all I can do is pray and hope and not worry because no one is in control — he has no oncologist (God forbid) planning his treatment and “cure” — there is no cure for what he deals with — much like others with mental illness — there is just managing symptoms. Many folks ask me why he can’t focus on getting better or work to take control of his demons but they just do not truly understand mental illness. Yes, there are things he could in theory do but in reality he cannot plan to work out more, to sleep better, to be more involved — he can only stay status quo with meds and maybe someday find a way through to being more proactive… I feel this is like blaming the victim in a way — I could not stop myself from getting cancer and he can’t stop himself from being who he is either.
This is the most raw thing I have ever written — I have tried not to disclose too much about what my husband deals with or tell his story but his story is entwined with mine — we are one, I guess, right? That is what they tell us during our marriage ceremony. Please, be kind — if you see someone struggling, do not assume they are a piece of shit or lazy — think about what demons people face and what they are equipped with or not — be kind in his name and pray for those who cannot live the life they should due to invisible illness.