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I saw the light
The end of April 2020
By Sofia Otmalm
For 28 years, Sofia, has been living with Hypermobile type Ehlers-Danlos syndrome (hEDS), 22 spine/neck injuries and for the past eight years, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS)
I couldn’t see anything but I felt a blade against my throat. I couldn’t move. I was filled with pain but I couldn’t call for help. Electric shocks consumed my body and travelled like darts to my fingertips and down to the soles of my feet.
I could feel more and more of my joints dislocating but I couldn’t do anything to put them back into position. My days were *full* of suffering, from sprains, pinched nerves and damaged ligaments. I couldn’t even speak because of the shock my body was in due to the pain. I was in a constant fight for survival.
On the fifth day, the pain I had felt in my body was so intense, I felt I might die. I was ready to go. I hadn’t had anything to eat or drink in a long time. *I was so thirsty*. I was ready to die. I didn’t mind, I had fought for as long as I was physically able to, and I was happy about the life I had lived.
Then suddenly, something happened. There was a sensation of light and warmth coming towards me, and my pain was replaced with a beautiful sense of wellbeing and ease. I was free! I’d never thought it was possible for me to experience the kind of happiness that flooded through my whole being at that particular moment.
As the light came closer, I saw something out of the corner of my eye; there were dead bodies, millions of them, heaped on the bottom of the sea. I knew they were people who had met the same fate as myself. They also had severe illnesses but were invisible to the health care system, and it had been going on for far too long. Not even on our deathbeds did the *health* care system take responsibility for us! I refused to be one of them! I refused to be swallowed up by the huge wave of an uncaring health care system and society! I refused to be just another victim on the bottom of the sea! Then I felt something lift me up out of the water, and I was back in my dark room and my torturesome body.
This is when my private, silent, invisible fight for survival changed, and I became who I am today. I don’t just fight for my own survival, I fight for all the victims before me, who did all they could, and for those victims that will follow, unless something changes. I believe in change. I believe that things can change for us, but only if we can be heard and seen. There is still time for us.
I want to help build a society where everybody has a voice that can be heard, where everyone simultaneously receives the help they need and the support they’ve been searching for, for so long now. It is time to open our eyes to what is possible, what we can do!
How I made my invisible injuries and illness visible.
The whole thing started with me losing faith in the health care system, but what I found was faith in myself. According to the doctors, my illness was ‘all in my head.’ I could agree to that to some extent, so I asked for an MRI scan of my brain. When the results came back, I was told everything was in perfect condition, as usual; however, my voice and faith in myself had grown stronger, so I took matters into my own hands.
Like a stubborn 6-year-old child, I said to myself, loud and clear, ‘I know best!‘
I knew that I had more knowledge about my situation than the doctors and there were things they couldn’t see that I could feel. I could see the whole puzzle but the doctors were blindly searching for a corner piece, and without it, they wouldn’t even start laying the puzzle with me. I went back to the MRI clinic, got my scans transferred to a CD and went home. This ordeal left me feeling completely wrecked; the pain in my nerves and the muscle cramps that pulled my joints apart had kept me awake that night.
The day after, I was determined to continue on my mission. On shaky legs I walked into my office. I started the computer and looked at the scans that were supposedly ‘perfect’. My heart stopped. I broke into a cold sweat, and the only noise I could hear was the sound of my own pulse. The shock rushed over me like a cold wave as I inspected my scans. My brain looked beaten to bits; parts of it had fallen down into my spine and my vertebrae looked broken. I had to prove what the doctors said was invisible!
After fighting for another few months, I finally got to see a neurologist who could confirm my injuries, and a lot more! He could see the blade I had felt towards my throat; it was pieces of bone that had been created by years of repeated leakage by disc herniations.
The journey home from the appointment with the neurologist was a long one. I had no one to help me with my wheelchair, so my injured cervical spine was injured again. I knew that the effort would make my condition worse, but I had no idea that I risked my life in order to make this invisible disease ‘visible’.
I don’t want any more people to endure this fight in silence. The doctors can’t call our disease ‘invisible’ when they are blind to the tests that are actually there to prove our injuries. Truth is, that in today’s Sweden, there are people with severe illnesses that don’t get any treatment. The truth is ignorance is reaping young people’s lives. Truth is, I’m far from the only one with similar experiences.
I am just one of Millions Missing.
Do you see ME now?
Full post reading by Jenni Pettican