Living With an Undiagnosed Partner

On June of 2017, I got a phone call from Matt’s workplace telling me my husband had been taken to the ER and I should go there immediately. He had fallen at work. I went into action mode and hightailed it to the closest hospital near his workplace. Upon arrival he was conscious and they were running the usual battery of tests they run when someone is in the ER and someone passed out. Several hours later, he was released.

Days later, we were at my parents house visiting. I went to a nursery on Sunday morning to look for a plant and when calling the house I learned Matt had collapsed again. This time we went to the ER where my friend worked. This time they held him overnight and did a barrage of tests. Only to find… nothing.

Thus began our journey of the mysterious illness known as mysterious illness. Our long journey into… knowing nothing.

It’s been nearly two years. We’ve been to Mayo Clinic, to neurologists, cardiologists, psychiatrists, sleep doctors, endocrinologists, you name it. Doctors who care and doctors who look at Matt like he belongs in the loony bin. But no matter what… no real answers.

Light headedness has turned into weakness in the legs. Weakness in the legs has meant falling down. This week it’s turned into uncontrollable tremors which now means falling down continuously.

Somewhere about a year ago, I began to accept that we may never find a diagnosis. I’m not speaking for Matt, just me. That there are zillions of diseases we probably don’t know about and that this is one of those zillions and we may be stuck in the world of traditional western medicine. I wasn’t trying to be negative. Really. Only realistic. We turned a different direction with alternative treatments; acupuncture, functional medicine, nutritionist, chiropractic.

Lots of people have opinions. Guesses. Ideas. All of that has been appreciated, yet here we are two years later with my husband looking worse.

Here we are as I watch him deteriorate, our mutual dreams of a family and a life on hold. I’ve gone through a range of internal dialogue:

“It’s not that bad. It’ll go away. It’s just something mental. Just try to act normal for his sake. Tell him to get off his ass. Don’t fall apart in front of him, he has enough to worry about. It’ll get figured out. It will never get figured out. It will never be over. My life is to just be a nurse maid forever. My life is over. Why is happening to my poor husband? Why is this happening to me? Why does western medicine suck so much? Fuck, I am scared out of my mind. Fuck, I am going to lose it. Hold it together, he needs you. Oh just go ahead and fall apart, what’s the point anyway? This is just the new normal, accept it. No no!!! This is NOT normal. We’re gonna find a cure! We’re never gonna find a cure! Maybe we should just do the twitchy dance together in our living room…”

It goes like that, one sweeping thought after another… accompanied by anger, sadness, coolness, humor, numbness, pain, heartbreak, longing, loneliness. All the things.

I talk to my therapist. I talk to my friends. I rely on my spiritual path which is complicated right now itself! (Read my other blog post for details of that)

I try not to talk to Matt too much about how I feel because he does the thing where you go into self-blame mode. That thing where he starts thinking it’s his fault for affecting my life. As though dis-ease is actually ever anyone’s fault. We want to blame someone though. Especially when the answers just don’t exist and you’re left with just space. Open ended space is quite scary for me. Sometimes I would like to blame him and sometime I do blame him. It’s never rational but it comes up. But that self-blaming thing is just evil. That ridiculous pattern where one person goes into beating themselves up and where the other person lets it happen because blaming someone feels better than not having any answers at all. That toxic shit makes everything ten times worse for him and ten times worse for me. Because it’s a sham – in reality, there’s no one to blame.

This is not what I thought life would be like. But we never know what life will really be like. It could be worse, it always could be worse. It could be better too. But however it’s supposed to be, this is just what it is.

My friends gave me advice. One day at a time. I’m trying to take that. Except it sucks when today is a sucky day. Still there’s something comforting about reminding yourself that when your eyes open the next morning and you take a breath as the world comes into focus, anything can happen. So I’ll take the advice. Today is a new day, with new promise and anything can happen.

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