Hopefully the wheelchair wouldn’t disappoint me this time. “Bet I’m faster?” I asked the fellow patient in the rehabilitation clinic. We both sat in such an electrically powered vehicle. But my wheelchair was the newer model, and only it had a racing rabbit representing the highest speed level (and a turtle representing the lowest). So good conditions. Still, I wasn’t quite sure. A few days earlier I had tried the horn button and pulled out into the parking lot in anticipation of a piercing signal. But then it just squeaked as if a mouse had gotten under the wheels.
The racing hare kept his promise and gained a lead of several seconds. I triumphed, let the wheelchair squeak and switched back to turtle. Back at the clinic, the high spirits continued. “You see, Adorno,” I thought (and was aware that I hadn’t understood him), “and does that exist: a real life in the wrong one.”
Living with a serious, chronic illness can feel wrong. When it becomes clear that the coming years will probably not bring a comprehensive recovery. In my case, this is due to a rheumatic disease, ankylosing spondylitis (in German: ossifying inflammation of the spine), better known as Morbus Bechterew. The immune system attacks structures of its own body. As a result, the vertebral joints become inflamed, and the body forms bony bridges between the individual segments of the spine as a defense. This hurts and increasingly restricts mobility. Other joints and tendons can also become inflamed. The inflammation weakens the entire body, so that Bechterew’s disease not only manifests itself in the affected areas, but can also affect the entire person.
In my case, the disease has also spread to the metatarsophalangeal joints of the big toes. The eaten joint on the left foot could no longer be saved and was therefore stiffened. If the consequences of the operation would have healed in a few weeks, I would no longer be able to roll my foot normally, but I would still be able to walk with less pain, so I hope.
If it becomes apparent that many physical limitations will remain or even increase, it takes the insight that something feels right at all: There are more important things in life than health. Of course, well-being is easier to achieve when there is no illness. And there is definitely a limit beyond which there is no room for anything else because of the suffering. Nevertheless: that health is the most important thing in life – this attitude can be afforded above all by healthy people. Those who are permanently ill, on the other hand, quickly ask themselves: And what about me? Does that mean nothing in my case anyway?
Certainly not. If it becomes unavoidable, stats other than health can also top the rankings. Even when illness distorts life, it can still be shaped for good and right. Yes, these are the words of a fox for whom the sweet grapes hang too high and which therefore declares them something to be dispensed with. So what? Sometimes it takes a fox to give encouragement when “health” is too big a word for one’s life.
It’s about dealing with the given constellations instead of having a plan
What can the alternative be? The answer is easy to say. But putting it into practice is probably one of the most difficult tasks a person can face: coming to terms with what is – and despite everything, recognizing the good, the beautiful, the funny in as many moments as possible. “We have to accept our existence as much as possible; everything, even the unheard of, must be possible in it. That is basically the only courage that is required of us,” writes Rainer Maria Rilke in one of his “Letters to a young poet”.
At 28, I realized something was wrong. Because of back pain I could only sleep on my knees and only change my clothes in the morning in the shower because I could hardly move without the hot water. I received physical therapy and medication. They should contain the overzealous immune system and thereby the inflammation. I was fine with that at first. The fact that the disease cannot be cured did not particularly bother me at first, as it was said that it was usually easy to treat.
That is comforting as long as one belongs to that majority. Today, twelve years after the diagnosis, I have tried numerous therapies and still have increasing problems in my back, shoulders and knees, hands and feet. On a good day, these body parts just feel stiff and less resilient. I can hardly use them on bad ones. In addition, there is a deep exhaustion, as well as side effects of the strong medication.
Reason enough to look for a way that I can do well even with ailing health. Orientation is provided by the late author couple Farideh Akashe-Böhme and Gernot Böhme. It is important that “disabilities are not understood as restrictions on life itself, but as conditions under which life takes shape,” she writes in her book “Living with Illness”. The task is not so much to formulate specific goals in life as to react flexibly: “Most of the time it is more important to be able to deal with given constellations than to have a plan.”
Comprehensive acceptance and openness are therefore required, which also leave room for ugly twists and turns. Is there anything else? Those who perfect this attitude can also call themselves enlightened. For the normal mortal, on the other hand, that sounds unattainable at first. Doesn’t matter. Because it helps to get on the way to this goal. This is tedious, but has one great advantage: behind the abstract concept of acceptance lies an attitude that can be practiced. Health, on the other hand, is in many cases a gift that you are given and allowed to keep – or not.
So the task was: practice accepting. This in no way excludes rage and howling at fate. It might even need it. It only helps if at some point the insight follows: I would like to change the situation, but I can’t. Of course, I would like to take care of my horse, an Icelandic gelding, myself. Sorry that doesn’t work. But my quarreling doesn’t help Hölmi. He wants food, a clean stable and exercise. So it needs others to care. Hölmi is now 30 and at this age in a much better condition than I am, not even half as many years old.
It takes inner stabilizing strength to still lead a good life
Regardless of whether they are sick or healthy, no one should waste their time in a passive attitude of whining. A line by Reinhard Mey, often heard as a child at home and now remembered as a gentle reminder: “What is passing is my life, maybe my best time.” The Austrian psychiatrist Viktor Frankl took on the subject with a significantly more imperative in his voice. He writes: “Where, in the face of a difficult fate, I can no longer meet him with an action, i.e. no longer with an action, there I have to meet him with the right attitude.”
There is an art to being sick in such a graceful way. That takes time, just like they need muscle to grow. Just think of the deep muscles that stabilize the core. You can’t see them from the outside, and their training can be brutally tiring. But once it is strengthened, you go through life more upright. Anyone who wants to lead a good life despite poor health also needs such an inner stabilizing force.
Only the training of these mental deep muscles is not easy. Adversity lurks along the way, such as pain. Some of them just walk along like shadows in everyday life. I can’t get rid of them, but we know each other and they don’t particularly bother us. Get upset, let yourself be pushed back into your limits with psychological tricks, for example by imagining my godchildren laughing or by listing what is good despite everything. Sounds trite, but it helps. Sometimes, however, pain grows from follower to leader. Then they determine my beat, weigh me down like a blanket of lead. They make every movement, every thought infinitely tedious. My world is shrinking. I usually only realize how bad it was before this heavy blanket lifts itself.
In such phases I am lost at the end of a seesaw, in the middle of which I try to balance most of the time. On the one hand the world of the healthy, with all the joys, banalities, tasks and adversities that every life contains. On the other hand, the world of the sick, which overall isn’t necessarily darker, is very different. To be equally at home in both worlds, to always achieve balance and to position oneself flexibly where the current situation requires it: That is the art of living. A goal I will never quite achieve.
Understandable when self-pity appears as the solution. But it is not. Self-pity is a cheap drug, and like all drugs, it makes things easier at first, but then only makes things harder. This is particularly fatal when the redesigns that a chronic illness often requires are pending.
At first, I see every forced change of something I love as a small end of the world. I haven’t been able to go hiking or horseback riding for years. I had to replace my beloved sporty bike with an e-bike. I had to get used to writing with voice recognition because typing hurts too much. I haven’t even been able to lift the cast-iron roaster, my late mother’s last present, out of the cupboard for a long time. I rage and cry as if my quality of life depends on a bicycle and a saucepan.
The easiest thing is getting used to it
And that’s what she’s doing right now. After all, it’s all forced farewells that want to be mourned. It’s always the same choreography: first comes the drama, followed shortly afterwards by getting used to it, and then enthusiasm for the innovation that makes life easier.
What I learned from bicycles and kitchen utensils: Just as some things make it difficult to set up a real life in the wrong one, there are also many things that help on this path. The easiest thing is getting used to it. It is not for nothing that humans are considered to be the most adaptable beings of all. I’m “fine” now if the pain, stiffness and fatigue are no more than usual.
But above all, it takes the right people to take away at least part of the horror of an illness.
These are friends in the midst of whom I can be ill in peace. They clean my apartment and bring chopped pumpkin, because there is no better food for the soul than pumpkin soup and no vegetables that rheumatism-stricken hands can handle less well. Friends I can put myself through when I can hardly utter a sound because of the blackness of my soul. Family and friends who are there even if they live hundreds of kilometers away. A psychotherapist whose fine sense of humor makes difficult things easier. Doctors who see me and whose words help even when not much is happening medically.
With all their support, I’m beginning to form an idea of what could be more important than absolute health. A diary entry bears witness to gentle progress. “Happiness is when there’s still a free table in the café. To get help and to be able to help. When the pain goes away. No parking tickets despite a parking ban.”
Cappuccino, pain and parking worries, that’s probably what the balance between a healthy and sick world looks like. And after all, I owe my racing hare experiences to the latter alone. The wheelchair has been returned for a long time, but it is still hardly possible to go for a walk. Another model is now available for longer trips. Without a horn and motor, but you can also use it for races. And winning anyway.