What I Wish My Doctors Would Have Known When I Was A Patient and Caregiver – Part 2
This is part 2 of a 5-part series. To read the other posts follow the links at the bottom.
We know what’s going on in our bodies and want to know more — listen, explain, and show
I’ve learned much more about this in the last few years. As a Gestaltist, I’m trained to be mindful of my own body as well as others. Our bodies tell us when there is something wrong. We don’t always listen. If we are tuned into what our bodies are telling us, we might be able to give you some insight even though we don’t have any medical training.
My best example of this is my son who started having seizures in May of 2021. We did all the medical things. He saw a neurologist who said that about ten percent of the population has one seizure, they never know what causes it, and they never have another one. They did an EEG and an MRI. Neither showed a definitive cause.
He was going on with his life and was past the six-month mark when he had his second seizure this time, he seized so hard he broke his shoulder. We went to see the neurologist again and he said now you have epilepsy. He had another EEG that still showed nothing. He’s also had surgery and a plate put into his shoulder because of that seizure.
About three months after that he had his third seizure after I had taken him to the ER at our local hospital and was told he must have Covid even though two different tests had come back negative. I explained he had a history of seizures. They didn’t listen. He had a seizure later that night.
The fourth time he had three seizures, and we took him to the ER again. This time they put him in the hospital saying he was septic, even though all the tests came back negative, and he was on antibiotics for the next three days.
I’ve told him for years because he was 12 when his dad got sick that he had emotional trauma. From that point, he never knew if we might have to stay somewhere longer than expected or if we might have to leave at the drop of a hat. Then he lost his dad at 17 between his junior and senior years in high school. On top of that, I was diagnosed with breast cancer early in his junior year. Along with his dad’s medical concerns I had chemo once a week and we were still making frequent trips to KU Med Center in Kansas City.
I believe his seizures have been caused by this emotional trauma. It seems like when he is emotionally triggered his body gets his attention by having a seizure. So, in June, I took him to work with a colleague of mine who also does somatic bodywork around the flight, fight, or freeze reaction. He’s been seizure free for six months now. I know that’s not long enough to say he’s done having seizures – it’s a start.
The other thing that has been interesting is how he loved looking at the x-rays and scans to see what was going on in his body. When doctors explain that in ways we can understand it deepens our knowledge and makes us more aware.
Several times when we saw the pulmonologist, he would show us either Mike’s x-rays or CT scans. Even though we really didn’t understand at first our knowledge grew. I would google things as well, so I’d have a better idea of what he was talking about. And the thoracic surgeon would draw pictures as he explained things which was extremely helpful.
I know googling can bring a lot of mixed results. I always stayed with sites that I knew were legitimate. It gave me a better understanding and a basis on which to ask questions. I also realize that I have an advantage because I grew up with a doctor and have talked with so many veterinarians about various issues.
When doctors and patients work together by listening, explaining, and showing it will increase the synergy in their relationship. Have there been times when a doctor explained something that you understood well or didn’t explain something you wanted to know more about? Did they share images with you? Share your stories below or send them to me here.
Make a Connection in the comments below.
Onward!
