In my mid-twenties, I get into training martial arts. I start with Muay Thai and then venture into Brazilian Jiu-Jitsu (BJJ) after turning thirty. I fall in love with it. BJJ engages every part of me: It’s like playing chess with my body. It challenges me mentally and physically, and I really like the community. Apart from keeping me fit, it has become my social anchor. I even compete a few times. I’m not good at it, but I never expected to be. I’ve never been good at any sports, and the fact that I even got to a level where competing isn’t completely nuts is enough for me. I still experience a lot of physical pain, but apart from that, I feel less lost in my body. More at home. Martial arts are making me feel like this body actually belongs to me.
Then my mom dies after a long illness. I travel to India. One of my goals during this journey is to find a solution to my constant back pain. The years that I was my mother’s caregiver have left little space to tend to these things. Though BJJ has helped a lot with my confidence and proprioception, it definitely hasn’t helped with the chronic pain. But things get kind of blurry when you do martial arts. Everybody gets injured at some point and most of us train through the pain at least to a certain extent. Many martial artists don’t have a very healthy relationship with their bodies. We don’t take pain very seriously, unless it completely stops us from training - like a freshly torn ligament or a popped knee cap would. Not chronic pain though. We ignore that. And just like that, martial arts helps me to continue doing what I always did: Ignore what my body is telling me.
In India, I do a lot of yoga. I’m surprisingly “good” at it, though I strongly believe that yoga is not one of the things that should ever be used in a phrase like that. It’s not designed to be something that you’re good or bad at. That’s missing the whole point. However, let’s put it that way: My body easily bends into more complicated shapes. Also, everybody tells you to stretch when you’re hurting, don’t they? And so I stretch, and get massages, and meditate, and try to do a ten day Vipassana retreat where you sit and meditate for 14 hours straight, every day. My pain while sitting is excruciating. But that’s just another thing to get through, isn’t it?
The pain comes and goes. For a minute, during my yoga teacher training, it’s gone, only to come back twice as bad. For a week, I can hardly move. Then, after spending some weeks in an ashram, the pain is so bad that I almost despair. Every movement hurts. I feel like I’m in a body that belongs to an eighty year-old.
After nine months of traveling, I return to Berlin. One of the first things that I do is to return to BJJ. But somehow, I don’t really manage to get back into my old routine. Within just a few weeks, this happens: One morning, I wake up, and my body hurts more than ever before. I feel like the vertebrae of my upper spine are fused together, like I’m carrying a solid metal bar in my back instead of a spine. There is a pain in my left shoulder that flares up every day a few hours after getting up. It only decreases when I lay down and pop up my arm on cushions. At night I cannot sleep and I toss and turn in bed in an attempt to find a pain-free position. This is unbearable. I cannot work out anymore. While usually my pain flares only last a few days, this drags on forever, the pain in the shoulder becoming sharper every day. I order a ruff from Amazon because my head feels to heavy for my neck. And I decide to give the orthopedist one final try.
I’ve gotten diagnosed with autism and ADHD a few months before my mom died. I was thirty-three. Everyone always knew I was a bit different. There have been multiple attempts at explaining my awkwardness: From being found to be gifted as a child in elementary school over effects of childhood trauma, growing up in an alcoholic family and some therapists suspicion I might have borderline personality disorder. Finally, at 33, the diagnosis fits. I intuitively know that this time, I’ve gotten to the core of it all. As I get more acquainted with the diagnosis, I learn that there are a number of physical comorbidities that are often found in individuals with autism.
The orthopedist I decided to see is specializing in one of these conditions: Ehlers-Danlos Syndrome, specifically the hypermobile form.
Hypermobile Ehlers-Danlos syndrome (hEDS) is a hereditary connective tissue disorder in which the body’s collagen is less resilient than normal. Because connective tissue supports joints, skin, blood vessels, and many internal organs, hEDS can affect multiple body systems.
The most common features are generalized joint hypermobility, joint instability and pain, frequent sprains or dislocations, muscle fatigue, and soft or mildly stretchy skin.
The doctor assesses me. My Beighton-score – a way to measure if someone is hypermobile – is seven out of nine. Clearly hypermobile. I tell the doctor about my other symptoms: The difficulty to find a good sleeping position, the pain and stiffness in the morning, the aching joints, the scoliosis, the tension in jaw, shoulders and neck, the degenerations in my spine, the difficulty with knowing where I am in space, my clumsiness, the weakness as a child, the constant pain that varies from day to day and nothing really seems to solve, but that on some days is hardly present just to knock me off my feet the next day, seemingly out of nowhere. He nods. He’s heard all that before. It fits.
He sends me to a geneticist. As an orthopedist, he cannot give me the definitive diagnosis as hEDS is a diagnosis that is reached through exclusion.
“I’m very sure you’ll get the diagnosis”, he says, and prescribes me with months of physiotherapy until I finally can see a geneticist in October, six months away. He also puts me in an online group for people with the same syndrome. “You should take a lot of supplements”, he adds, and recommends a few books I should read. “And get checked for POTS.”
“Do you know of anyone with this diagnosis that does martial arts?”, I ask. He shakes his head. “Contact sports isn’t recommended with this condition. The impact is too high. But generally you can do whatever you want as long as you feel good.”
The problem is, I don’t feel good. Not at all. I stop going to BJJ. There’s been a fallout with my trainer for other reasons, and I don’t feel supported by the association considering my current condition. Instead, I go to physiotherapy, and I lose all trust in my body. The physiotherapist is a blessing, though. She specializes in treating people with hEDS and within a few weeks the gnawing pain in my shoulder and the numbness that had spread through my entire left hand is gone. She shows me exercises to strengthen the muscles that are typically weaker in people with hEDS and puts me through some tests. One includes lying on my back, tucking my chin slightly, and lifting my head a few centimeters from the ground. Apparently, “normal” people can easily hold this for over thirty seconds, while I’m trembling and falling out of position after a mere 17. The picture is getting clearer.
I see another doctor to get checked for POTS. I’ve always felt tired a lot, easily sweating and then cooling off so much that I had to wrap myself in a blanket while everyone else was in t-shirts. Yes, I know that I’ve felt dizzy a lot, and nauseous, and that as a teenager I blacked out easily. Still, I’m surprised when the doctor ends the test a little bit before the usual time. “No need to do any further measurements”, she says, and takes the blood pressure cuff off my arm. “It’s very clear.”
She diagnoses me with POTS. Postural orthostatic tachycardia syndrome. It’s a disorder of the autonomic nervous system in which the heart rate increases abnormally upon standing. POTS leads to symptoms such as dizziness, lightheadedness, fatigue, palpitations, exercise intolerance, and sometimes fainting. In people with hEDS, more elastic connective tissue may allow blood vessels to stretch excessively, causing blood to pool in the legs and abdomen when standing. This can reduce blood return to the heart, prompting the heart to beat faster to maintain blood flow to the brain.
When we end the test which basically consists in standing up for ten minutes after lying down long enough for the heart rate to settle, my feet and hands are purple and ice-cold. The doctor prescribes me with Ivabradin, a heart medication that helps to prevent an excessive increase in the heart rate. I get a tracker that shows me how many times a day my heart rate spikes after simply getting up. Each time I shower the tracker logs a cardio session.
The next months I experience some of the worst pain flares I’ve ever had. I also feel nauseous and dizzy almost every day. Sometimes I have to sit down on the floor at random times. I feel weak. And I am very fucking frustrated. Sometimes I get really angry. How come I’ve had these symptoms for my entire life and all I was ever told was: Everybody feels this way? Because no. Not everybody does. In fact, only around 0,01 to 0,06 % of humans do.
However frustrated I feel, this is also a revelation. Finally, FINALLY, I know what’s up with me. That means that I can start treating my condition. My physiotherapist recommends specific exercises. I start taking some supplements and get my blood work done to see whether there is anything that I could do to support my body more. I wish I could say that I take my supplements regularly, but at least begin to eat three meals a day.
And something else happens: I start to forgive myself. To forgive this body that I hated with such an intensity that I tried to starve it to death when I was fifteen. That I cut with razor blades and filled with substances just so I didn’t have to feel it as much. I not only start to forgive this body. I start to really appreciate it.
Because, come to think of it – the fact that I am able to do so many things, the fact that I am so strong and did get to a point where I was even able to compete in martial arts with my adversaries being healthy, fully able-bodied women – that is amazing. Because my body is disabled. And very resilient.
I file for a disability card. I sit with my frustration and at times I miss BJJ so much that I cry. I get up in the morning, pain shooting through my joints, and I get scared: What if this is how things are going to be from now on? What if it gets worse? Some people with EDS and POTS end up having to use wheel chairs and walking canes. Some are in constant pain. It’s easy to catastrophize. For a while, I feel very low, almost depressed. I don’t even try to work out anymore. I’m too scared to break something, or to wake up again and lose all my progress to another flare.
And then, somehow, it all settles. I start to look at my body with new eyes. I remember that none of us know what the future holds and that nothing is black or white. One beautiful summer day, I take a cab to the open air swimming pool. I take the cab because the idea of having to walk or bike there is too off-putting. So I trick myself into going by making the requirements as doable as possible. I put on my swimwear, and once my body pierces the surface of the cold water, I know that this has been a good idea. I swim. Like I did when I was little and my mom was hoping that by swimming regularly I could avoid spine surgery.
I swim less than half of the lanes that I used to when in better training. But instead of beating myself up about it, I’m proud. I did it. I made it back into movement, back into my body. Two days later, I go swimming again, a little further than the first time.
I’m learning something that I wasn’t able to do until now: Pacing. I’ve always treated my body as something that owes me. Something that needs to deliver. I’ve never looked at it like a living being, more even: The living, breathing being that carries my soul. I always wanted to wring achievements out of it. Now, for the first time, I ask myself: What does this body need? How can we find a common ground? Make peace? Become friends even?
Having to quit training BJJ has caused a crack in my identity. Not because I’ve been particularly good. I wasn’t. After three years of training, I am still a white belt (for a number of reasons, to be fair). The point is that I defined myself through sports. Through achievements. Busyness. At the same time, since I was my mom’s caregiver, I have learned to let go more and more. Giving up BJJ for the time being was another process of letting go. I am no longer the person that works out five times a week, regularly.
Maybe I’ll be that person again. Maybe not. Maybe I’ll work out five times a week for some months and then get immobilized by a pain flare for a bit. I don’t know. And I don’t have to know.
The older I get, the more I appreciate those cracks in my identity. Because honestly: Having an identity is so tedious. It’s exhausting. You need to polish it and construct it and adorn it and it is just a process that involves so much ego. The more I let go, the more I grow into something that feels like my actual purpose, and less like something that I want to display. In twelve step programs we say: “Just do the next right thing.”
For years I wondered: But how do I know what the next right thing is? I started overthinking it like I overthink everything. But little by little, the next right thing has emerged out of the confusion and become clear. Not like a manual. That’s still too complicated. But like a guiding light. Or a warm breeze when you’re cold. It’s just – there. It’s like I’m swinging from bar to bar, and there is only ever one bar in my reach. One step at a time. It’s simple.
I’ll go back to BJJ this week. For the first time in about six months. I won’t compete again. I won’t be able to do take-downs or intense sparring. I don’t know if I’ll still enjoy it if I can’t do it with the same ambition as before. I am happy to give it a try, though. And if it doesn’t work for me, then something else will. And if that doesn’t work anymore, then yet something else will. Things change all the time. We’re all damaged in some ways, but not broken. Nothing was ever perfect and it is beautiful as it is. I’m open to explore this relationship with my body, to listen to it, and have my soul cracked wide open, as layer after layer of alleged identity is removed.
Because I know that we are so much more than that. Beyond all that make believe that we ourselves buy into, there is a deep clarity. Beyond that lie love, and life, and truth. Sometimes I forget. But now I remembered: That’s where I’m headed.
three years n still a white belt ... honestly thats reassuring
Ich wünsche Ihnen Gesundheit 🖤