This originally appeared on Medium.
Over a year and half ago I, for reasons still to be explained to me, ended up in hospital after waking up with chest-pains, pain in my left arm and nausea. The good news were that it turned out not to be a heart condition, nor a problem with my lungs. On the contrary. Practically every test they ran looked fine. Except for all the pain.
After months of waiting (Scandinavian healthcare may have some advantages; listening to the patient and speed are not two of them…), I found out I had a couple of dehydrated discs in my thorax, and three herniated ones. Two of those hernias were pressing on the nerves, and were the cause of my pain. Early on I could barely move my left arm for pain, I couldn’t carry a backpack, my duffle felt so heavy I got faint from wearing it, and even the movement of a buss or a car could make the whole world spin.
What no one told me was how relatively uncommon disc-hernias in thorax are, not to mention what they can lead to. Let’s just leave it at me being relatively lucky I’m just in pain. But it’s very unusual for a man in his early thirties to get these. Physical trauma from sports or an accident can cause it, and otherwise they mostly believe it’s genetic. If it’s genetic, the general belief seems to be that they show up in your fifties.
So far, no one has been able to really answer this question. The doctors sodded off relatively early, never really offering anything beyond larger amounts of paracetamol or possibly small doses of codeine. The physical therapist I requested helped a little. I especially remember one time when she had me lying on a bench, while she pulled on my head (quite violently) and there was noise that, in my head, sounded like bones breaking. That was, according to her, the muscles around at least one set of vertebrae finally letting go a little. After that the cramps in my back subsided a little. However, I was nowhere near fine.
But nothing more really came of it. I got a few exercises that felt ok but really did nothing over all, and was sent on my merry way. And since I find it hard to voice my needs to medical staff, that was it. Almost.
My then employer had their own physiotherapist who also gave me the once over. She didn’t have the time, nor resources, to actually do much. Nevertheless, she did recommend I’d seek some sort of psychological therapy as well. Not least because I had initially thought I was suffering a heart attack. Something that rather harshly makes you looks at your self and take stock.
Thanks to a very generous granny I also started visiting a chiropractor around the same time, who, unlike the physical therapist, has helped a lot. He does acupuncture, suggests minerals or other things to eat, gives me painful but useful massage, and have given me a different set of exercises that initially helped a lot. They help less obviously these days, but are still enormously helpful. However, this chiropractor has had to work on me for more than a year, and we still haven’t found a definitive source of my problems. That is, he can’t find what caused them. But the massages, though still very painful, are very helpful.
Enter the therapist. She was my first real therapist, though it soon became apparent I should have done that years ago. Things just came rushing out of me, and it felt very cathartic. Occasionally I would have physical effects from digging too deeply. Muscle twitches, and spasms in my chest that kept me up all night. Yet, over all, it was great. Unlike all the other people I had seen, she did offer an explanation. It involved personal history, choices made by me and for me many years ago. But essentially her view was that the discrepancy between my minds view of how things should be, my hearts vision of how life could be, and reality, became so severe, my back practically broke. Like the proverbial camel’s.
Does that make sense? I don’t know. But seeing as I’ve gotten no other explanation that actually takes everything in to account. It could be right. I’ve certainly had to change a lot since it happened. And right before it did, I had seriously started to reevaluate a lot of things, not least in terms of money, creativity, feelings, personal ethics, women and love. All things my relationship with my father (among others, but mainly him) had made extremely touchy subjects for me.
Today I have, mentally, accepted that I will have to suffer pain for the rest of my life. Mentally, but I haven’t internalised it. There are small-to-slim chances that the spiral stabilisation exercises I do can help and make the hernias retreat, but it’s unlikely. I will always have some pain in my upper back. (On a happier note, the chiropractic have made me between three and four centimeters taller. No really!)
But there is more to it than that. First of all, I am relatively big guy. Tall and broad-shouldered. Not to mention overly helpful at times, and ‘historically’ keen to be liked by everyone. I never knew this could be such a problem.
I can’t really carry stuff anymore. (A good quality backpack and I reach my limit at a MacBook Pro, a Kindle and a notebook.) I can’t offer to carry someones heavy bag, or help a friend move. I have tried a couple of times. It leads to severe pain for one or a few days, usually little to no sleep and often other things as well. I have to say no for my own health.
I had to put summer-tires on my car the other week. Since I am ‘sans-income’ at the moment, I decided, against better judgment perhaps, to do it my self. I shouldn’t have. No sleep, lots of painkillers. Not to mention the fact that I found it hard to cook and impossible to write anything. I also tried washing my car a week ago. Same deal… (Apparently I am a bit slow.)
This is hard to accept for someone who is moderately handy and used to at least be able to do all sorts of stuff for himself. If I’m short on time, I’ll get a guy in to help with whatever. But it’s nice to do or make things yourself. Yet now I can’t. Or at least, the cost is so high I really have to consider if it’s worth it.
Not to be able to do these things because of something largely invisible is shameful to some extent. I feel like I’m being judged as a man full of excuses. As lazy. As someone who doesn’t help out. And that’s on top of the sadness I already have about not being able to do these things anymore. Put another way, if I ever meet someone and have a kid, I don’t know that I will ever be able to lift him or her up past their first year. It may sound silly, but that does make me feel kind of blue.
There are very likely others like me out there. People who in the eyes of the world look normal and healthy, but pain make certain things hard or impossible for them. Sitting, standing, running, helping out, working. All of it has a cost nobody but the painkiller industry ever sees. It’s lonely. It’s slightly shameful. But we are here. We have the right to be here too. I didn’t ask for this to happen to me. But there it is.
I think it is time not only to accept that shame is painful. Pain can be shameful as well. And if you’ve ever read anything by the amazing Brené Brown, you know that for shame to lose its grip on us, we have to admit to it and talk about it. Perhaps we can loosen the grip of pain over our lives if we talk about that too? Sure, the pain will still continue to be there. But maybe others, and more importantly, those of us with the pain, can finally accept it and learn to say no when we need to.