Marianne (33): “After a severe corona infection and a coma of five weeks, I was slowly able to sit and stand again. It’ll be okay, I thought then. My arms just don’t help yet. Paralyzed, the doctors said. But with a lot of practice I’ll get there, right? Then came the harsh words of the doctor who gave me the results of my nerve examination: ‘You will probably have a permanent disability’. And suddenly I realized: maybe I will remain paralyzed by corona forever.
First aid
Exactly a year ago I tested positive for corona. I hope I don’t get too sick, I thought. But after a day or two I started having coughing fits that scared me. For the first time, I almost literally coughed my lungs out. Breathing became increasingly difficult. With a saturation meter I had at home, I tested my oxygen levels. At one point they were below 70 and I had to go to the emergency room. My friend dropped me off at the door. I remember thinking: they’ll patch me up and I’ll walk outside refreshed again. But our wave to each other before I walked down the hospital corridor became our last goodbye to the hell that came after.
‘If we don’t put you in a coma now, you’ll die’
I underwent tests, was given oxygen and a few hours later doctors and nurses in protective clothing came into my room. “We’re going to put you in a coma now,” I was told. I no longer had time to text my mother or friend. I immediately panicked, because I knew the numbers: not everyone comes out of such a coma alive. And I also knew that in some countries they had to choose who would live and who would not. “Do anything for me, do anything for me,” I begged the doctors. ‘Let’s do that. But if we don’t put you in a coma now, you’ll die,” was the last I heard. And then I fell asleep.
Learning to breathe again
After five weeks I woke up. sedated. I couldn’t even lift my head, talk, sit. I was back to square one: a baby. Yet paralysis was not my immediate fear, it is not surprising to lose your muscle strength after a coma. It was weird. I had to relearn everything and even the smallest things were a huge workout. Learning to sit again, for example, was hell. I was then hoisted upright and had to try to stay seated for half an hour. I could only cry, it was so intense, a pure strength training. I also had to learn to breathe on my own again. I had a pipe as thick as a straw in my lungs, sticking out of my neck. Every day the doctors took the ventilator off that pipe and I had to try to suck in air for half an hour. That was tough. But over the weeks we built up the time and so I was able to breathe independently, sit and even stand a little bit and take steps for longer and longer.
paralyzed arms
What was not progressing well was the motor skills in my arms. After weeks of practice I still couldn’t do anything. Due to prolonged constriction during my coma and a nerve inflammation from corona, the nerves in my arms had fallen out. When I heard that, I was quite laconic about it at first. It didn’t get to me. Practice well, I told myself, then everything will grow back. After months of practice I was indeed able to move a little bit again. But for your arm to function fully, all muscle groups must cooperate. It’s no use being able to grab a fork if you can’t move it to your mouth.
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‘Everything has been for nothing’
I kept hope, didn’t want to admit that my independence might be gone forever. And then came that doctor, who told me that I may be handicapped forever. A huge blow. The first three days after that I just cried. What was next? Over the past ten years, I’ve worked hard on my career as a freelance marketer and my client base. Those customers don’t wait for me to get better. It felt like everything had been for nothing.
Children’s wish on hold
My relationship also changed overnight. I can’t look back on our past beautiful years, because it makes me too sad. Everything we did and were able to do together before this is such a distant dream. The loss of that carefree time hurts too much. But we no longer dream about the future. Our wish for children is on hold and what the future holds, we don’t know at the moment. That’s why we live day by day, but it’s hard. “I miss us,” my friend said to me recently. Those words hurt, but sum up exactly what we’re in the middle of right now.
Crack in self-esteem
Lately I have often been depressed. Fortunately, I have a lot of rehab training that distracts me. But when I’m alone in bed, I’m at the mercy of my thoughts. Why is this happening to me? What’s the point of it all? It sounds very dark, but I have lost my independence. I can no longer eat by myself, only go to the toilet and wash myself. I used to enjoy going to restaurants with friends, but that too now feels difficult and embarrassing. I have to be fed there these days. That’s such a blow to my self-esteem.
Raising money for robotic arms
Fortunately, there are solutions. The hospital loaned me two robotic support arms that help me lift my arms. I don’t want to be dependent on everyone all the time. I want to be able to eat again. You can with those arms. The feeling that gave me lifted me out of my dark valley. That is why I now hope to be able to buy two of those arms myself. Because they are expensive, €4000 each, I have set up a crowdfunding campaign, hoping to raise the money. Even if it is only a euro that someone can spare, that would be great. It might lessen the miserable hopelessness I’m in. Then I have a little chance of a normal life again.
embrace disability
Despite the hopelessness, I am slowly starting to embrace my handicap. In the beginning I associated my disability with negative thoughts like: I’m worthless, I’m ugly, I don’t add anything to society, what am I suggesting now? But I am starting to realize more and more that I am much more than my handicap. And that my body is certainly not worthless. Because recently my body has proven how powerful it is. She has dragged me through corona and my coma, she has trained to get stronger muscles again and she is now working hard to restore my nerves. And I will do everything I can to help her with that.”