Catch 22

July 2, 2015


I find that with my MHE that I am constantly compromising with my body and myself. You can’t fix every ailment that comes with MHE with a surgery, it simply isn’t always possible.

A week ago, I went to see my specialist to discuss the more problematic parts on my body. I have a large tumor on the underside of my right thigh that causes extreme daily pain. Sitting, walking, bending my legs – I feel it all, accompanied by pain, as that tumor catches on tendons and nerves and muscles and whatever else is in there. Sitting on it is uncomfortable (imagine sitting on down with a tennis ball beneath your leg). My right ankle constantly feels as if it’s “locked”, and there is a small tumor on the top bottom part of my left foot that causes me a lot of discomfort.

Then there is my wrist – which quite possibly may be at the top of the list right now for really painful things I’m dealing with. There is a tumor between the two long bones on my arm that is pushing out the inner bone, limiting my mobility and catching on things. I drop things. I can’t write for as long as I used to be able to write (and writing is my livelihood). Certain subtle twists of my wrist will lock it up and it will feel broken, snapped. Stuck. I have to jerk it hard, and it’s not an “easy fix”, it hurts and I cry. I actually cry. I don’t cry very often because of my MHE, but this…this makes me cry.

My doctor (who is a wonderful man, I might add), didn’t exactly have brilliant news for me. The hip is an easy fix – they can remove that and the snapping, pulling and pain should ease up. For that I was thankful – because let’s be honest, with my job (writing), I spend a lot of time sitting down at the computer.

My wrist is more complicated – the tumor between those two long bones is actually providing a lot of support to my wrist, and he worries that my wrist will be extremely weak after the surgery as those bones will not meet up. He could always “make” a ligament between the two. The surgery would fix the mobility issues I have (again, I’m a writer – so my mobility issues with my wrist definitely affect my ability to work), but the weakness might be an issue. It’s like trading a shitty hand of cards for…well, another potentially shitty hand of cards.

My ankle is worse. He’d have to break it, cut a chunk out of it, reset it with plates and pins and the
recovery would be long and difficult. I’d be on crutches for at least a couple of months, and in a lot of pain, and my doctor isn’t sure that this particular surgery would make things better for me. Right now, the ankle is strong – even if it locks up. Rolling it is difficult because it is essentially fused. I opted against operating on that one, because the odds were just not in my favor there.

My left foot may be operable. My two middle toes (second from the big toe and beside that) are fused together, and that complicates things. My doctor was giddy with excitement over those toes though. Apparently, they are fascinating toes. I’ve never had my toes described as fascinating before, so that was nice – I guess.

A CT scan was ordered to check all these sites to determine exactly what they’re doing with, but I’ll definitely be going in the fall to at least have my hip done. I’ve definitely decided against the ankle, because the benefits do not outweigh the risk. I may have my wrist and my foot done – I still need to weigh the pros and cons for my wrist.

My wrist is a huge concern because I am right handed: this is the hand that I use for everything. I need both my wrists to write. My mobility right now sucks – I have to over-compensate with my right shoulder to get my hand in a functional position for writing and that is tiring and painful. But I can’t afford to have a worse trade off.

It’s a catch-22 a lot of the time with this disorder. Things can’t always be healed with surgery. More complications can arise, the benefits do not always outweigh the risk and that can be incredibly difficult to accept, mainly because when you finally call up your specialist, it’s because you’re at your wits end with things. You need something to work; you need something to elevate the pain.

Hearing that it might be better to carry on the way you’ve been carrying on, that can suck. A lot. And it’s okay that it sucks, you’re allowed to feel frustrated about it. But it’s good for me to keep perspective and focus on the positives, even if they seem tiny at this current moment. Even with a fused ankle, I can still walk. Even with limited mobility in my wrist right now, I can still write. Sure, the pain is difficult to deal with and sometimes, I get entirely sick of dealing with it…but pain isn’t something that I’m unfamiliar with. Pain is something that walks hand in hand with this disability.

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