21 surgeries and counting

Posted July 14, 2021

Success consists of getting up just one more time than you fall.
(Oliver Goldsmith)

For me, the question is not whether you get up after a fall, but how often you can do this. Ten times, fifteen times, twenty times, even more?

One could consider major surgical operations are such downfalls for people. The trauma or the slowly rising pain, the (usually) long diagnosis. The surgery itself that takes you out of your everyday life, that’s a break. Then you have to find your way back to normality after a long recovery. Falling and getting up again.

Many have experienced such surgeries, feared, doubted, struggled, and fought back. Surgeries are not uncommon, but the chances are generally good that health could be restored again.

But what if the situation described is not just a brief episode in one’s life, what if it happens again and again? What if one is thrown off track like this constantly? How many times can one or is willing to fight to get up again? And what if there is no end of it, an odyssey?

There are some individuals with hypermobile EDS (hEDS) who live with such a degree and such effects due to a connective tissue weakness. I am one of them, having experienced seventeen surgeries since 2006, twenty orthopaedic surgeries in all.

Twenty times forced to the knees, twenty times immensely struggling to get up again, sometimes laterally from a wheelchair. I can’t even count the days, weeks, and months with crutches, plaster, splints and wheelchair, and I don’t want to. I have the gift of forgetting, or rather, I am good at repressing. That helps for a certain forward-looking normality.

When I had my first surgery, I was devastated. But I am certainly disciplined and motivated and I always managed to get up. It was only after the ninth operation, the sixth within four years, that I began to doubt that I had ‘just been unlucky.’ I was then diagnosed with hypermobile EDS (hEDS). With its many manifestations, my weak points are cartilage, ligaments, and tendons in major joints as well as compression of peripheral nerves – all cause severe pain in my extremities.

On the one hand, I now had an explaining reason that silenced my doubts about my psyche a bit. On the other hand, the hopelessness of a cure cracked my psyche and I fell into a deep depression. It didn’t help that new problems arose in that time, causing new surgeries, deepening the fall. In particular, restrictive C2 neuralgia dragged me down.

I had to realize that every single surgery meant more and more minor or major permanent restrictions on my body. You always leave a piece of health behind in the surgery theatre. At first, I was no longer able to do all the sports I used to: alpine skiing, all game and contact sports, for example, later even all endurance sports. Instead, there were more and more everyday restrictions. So, it took me three years to find my way out of the deep valley of depression. Looking back, it was the biggest knockdown, almost a knockout. I’m a bit proud and still happy that I managed to overcome it after all.

With new courage to face life and self-prescribed personal health management, I mastered the next years and the next surgeries, numbers fourteen-twenty, one every year. I never wanted to fall into a depression again. That was my main motivation to get up again and again and still is!

Unfortunately, the complexity of my health problems is increasing. Initially, I mostly struggled with one main problem only. I could fade out the other latent ones. Now there are several main problems at once and latent ones on top. After the shoulder, just repaired six months ago with tendon and ligament reconstruction and not yet healed, the next major problem has approached. Once again, it’s the right knee, which has been fixed six times already, thereby two reconstruction osteotomies and an artificial knee joint, two and a half years ago. Now, a degenerative rupture of the external ligament apparatus, probably the popliteus tendon has been diagnosed, causing instability and pain. Sustainable repair is likely with a revision of the knee prosthesis only. So, another mega-surgery is due, followed by rehabilitation for the umpteenth time.

I’m fairly sure, that could manage this twenty-first breakdown and will be back on my feet again, provided it will be a successful surgery, as all of them have been so far, thank goodness. I just don’t think about potential failure. There is no scenario for that.

But I am asking myself more often and more insistently: where is my journey going? Obviously, the previous strategy of fixing what is most broken and hurts most while living some normalcy is not sustainable, is it? My efforts and discipline are more and more challenged with increasing limitations and especially pain. How long can I keep up the strength? How long before the careful but fragile house of cards built out of degenerative tendons and ligaments collapses? Will the body or the mind fail first, or both?

Success consists of standing up once more than you fall. I ask myself, how many more times can I stand up, resisting a never-ending story?
I am afraid of failing eventually!

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