At a recently held event in EU Parliament, Geography matters: Inequalities in Access to Stroke Care and Innovation a stroke survivor from Belgium shared his story with the auditorium. He agreed to share it also here, so more people could see his testimony.
“My name is Marc van Dorst.
I live in Wilrijk, a suburb of the beautiful city of Antwerp.
I am 62 years old, happily married and a proud father of 4 children.
On Sunday July 23rd I was working in the garden of my daughter’s house.
I felt good but suddenly, I felt a weird impression.
The same feeling as getting up too fast.
What do you do as a stunned smoker? You grab your bag to take out your cigarettes and your lighter, because smoking a cigarette will make you feel good!
But the cigarettes felt to the ground.
I did not manage to pick them up. Every time I grabbed them, I missed.
It’s then that I decided to go home and to rest a bit.
My vision was blurry, the images changed too fast, I wandered and I sought some support leaning on the wall to go back to the house.
There I had to overcome 3 small steps. I couldn’t.
It felt like I was forgotten how I needed to go up the stairs.
Fortunately my daughter arrived, she grabbed my arm and helped me climb these steps, and as we only live 100 meters away, she brought me home.
Marina, my wife, recognized the symptoms immediately as she was involved when my father had a stroke some years ago. An Ambulance was called.
The ambulance arrived quickly.
They asked me if I knew the date, when I was born, what was my name.
They told me that I had to go to the hospital , I didn’t understand why.… Meanwhile: always these same questions, name, day, season.
I only felt a bit dizzy and my vision was blurry and, OK, It was a very strange feeling. Sometimes I was looking at someone and when I looked again then this person was gone and then back again. Crazy conditions. Maybe I’m tired and to sleep will help.
They brought me to the University Hospital in Edegem. There a scan was taken. And again the same questions: day, year, name, age, date of birth etc …
Meanwhile my wife was informed of the fact that I had a stroke. We had been lucky because we had responded so quickly. They would immediately go for a thrombolysis, administering a high concentration of blood thinners in the hope of dissolving the clot. My wife was also told a special intervention team was standby if a thrombectomy was required. I had no idea of all these information, or at least I didn’t realize.
Probably due to the beginning of the thrombolysis, I suddenly realized that I was locked up in my own head. I understood everything that was said and asked. But yet I heard the people saying: “no, he doesn’t understand” “no, he doesn’t answer well”. I wanted to call and I even wanted to shout that I understood every single word, but I couldn’t find the words. I wanted to point out, but I couldn’t control my arm.
They showed me a paper with a few objects. I recognized them immediately, I knew what the objects were used for, even where you could find them at our home.
It was at this time that I realized that I was speaking another language using the wrong words , sometimes even only sounds. I was searching for simple words used everyday, but I didn’t find them back, no matter how hard I tried. I was incomprehensible for my wife, my daughter and all the people around me. I alone, only me, knew what I wanted to say. All form of communication was lost, my language, the coordination of my movements. From one moment to another, I was completely alone in this world.
The crazy thing about this is that today, I still remember most of these items shown on the papers:, glove, seat, cactus, hammock.
I think this memory just proves how hard I tried to find the words, how hard I hurt my brain to find them.
This was also the moment that I did what a man should never do, I wept silently.
I wanted to say “sorry” to my wife and daughter, but I couldn’t.
I even couldn’t wipe my own tears…
My daughter dit it for me…
I felt so helpless and ashamed.
And then, very slowly and very hesitant, I succeeded to speak the words on the cards. The physicians then thought that the thrombolysis was successful and the intervention team was informed that no further procedure was necessary.
But a little bit later, everything was gone again. The intervention team was immediately recalled.
My wife was told that a decision was made to do a thrombectomy to try to remove the blood clot effectively from the brain. I was immediately brought to an operating room where the intervention team was waiting.
The operation was a success! I was transferred to the department of intensive care and in the meantime my speech, my sight were completely normal.
(ONLY) 3 days later, I had to leave the hospital and just a week later I was back to work.
I thank everyone who enabled me to write this testimony and to be here today.
The stroke team for everything they have done and the courses they have followed to learn how to do this procedure. All studies and investments by governments and industrial that have made it possible for an intervention like this.
This testimony demonstrates the feeling of an immense release that it has ended this way.
But certainly and even more important, it’s also a testimony of sadness and compassion, because I realize what so many people still have to experience every single day, day after day, because they couldn’t be helped the way I was helped.
Every day, I realize that people are condemned to solitary confinement in their own body, in their own head, some even lifelong.
I heard them shout at night, I heard their cry for help, but nobody understood them, nobody really knew what they were crying for.
It’s also a testimony of joy because my closest family escaped from the misery of many months of rehabilitation where the daily family life is disturbed, where the joy is replaced by uncertainty, the uncertainty about how recovery will end .
I still have some concentration disorders, sometimes I stumble to choose my words, but is that really bad? Is that what I should complain about? No, that’s just all, so what.
It’s also a testimony of financial happiness. I work, and I hope to work till I’m 65. Not because I have to, but because I want to. No need for sickness fund or government money to help me or my family for many months or years. And all of this because I was so lucky that the University Clinic could help me, that the equipment existed to rescue me, that a team was trained to work with this equipment, that a clinic took the responsibility to invest in the equipment and to have a stroke team stand by.
I believe that all the patients and especially their relatives deserve the same treatment and care I received.
For myself, I ask the question, if the treatment had not been available, or had failed, what would have been the quality of my life? Not only for me, but also for my family?
I hope that my few words did help to convince you about the immense suffering which can be avoided.
So please say with me: can we help a lot more patients and their families ? YES WE CAN.