I remember it well, I woke up in a hospital, almost 30 years ago now. My leg was severely fractured, my spine was broken, there was no known damage to any nerves, not yet. So, I was told to lay flat on a bed for at least four weeks, and every day my doctor came to touch my toes, checking to see if I still had feeling.
During what turned into 6 weeks I lay flat on that bed – 24 hours a day. I was completely helpless and needed assistance for every move or action…. I only coped by feeding on the energy I received from everyone helping and visiting me. For most of these visitors, I became a symbol of hope. After all, I was the only one that survived the car crash. My boyfriend Barry and my father weren’t as lucky. The thing is, I did not feel lucky at all. I felt the pressure of being their beacon of hope. And since I already felt sad most of my young life, I really didn’t understand why I was the “lucky” one to survive. It seemed like Barry and my father had so much more to live for, so many ambitions and so much energy to give to the world, yet they both…. were gone.
How could I ever survive without both of them? I needed their positive energy, their strength, their being, and their love most of all. Yet, now they were gone…
During my weeks of recovery, the sadness often took my breath away. I wanted to cry, scream or run away. But I was imprisoned, lying flat on a hospital bed. To take extra care of me, someone from my family was with me around the clock, so I was never ever alone. I was – and still am – grateful for all the love and support I received every second. But honestly, the feeling of not wanting to be there, the wish that I was the one who got killed in that car, was strong.
I learned to write my thoughts in a journal and it became the outlet for my emotions, those thoughts and feelings I felt unable to express or say out loud to anyone. After all, those around me were suffering just as much or maybe even more from this trauma and their own loss.
Even worse, I felt guilty. Were we not travelling in that car that day together because of me? I was the reason they were both in the car. It felt like I had caused the accident.
The little book where I wrote all those thoughts was my lifeline. Everyone around me knew it was sacred. They made sure that in every situation, I ALWAYS had the journal and a pen nearby. And nobody ever opened it or asked what I had written – an unspoken rule or even law to be respected.
After six weeks in hospital, I was allowed to go home in the safe care of my family, where I started daily rehabilitation in a center with physiotherapists, plastic surgeons and ergonomists. I had to learn to walk and become self-reliant again. After being so helpless as a patient, I even became somewhat aggressively autonomous. The process of becoming a non-patient, or “unpatienting” is very complex, but I am so lucky to have felt so much progress over time. After approx. 9 months I was physically 90% recovered and started to go back to school. I studied design and when I graduated 5 years later, I had used my experience to create five blank journals for peole struggling like I had: a journal for a patient, a journal for a prisoner, a journal for a traveler, a journal for a prostitute, a journal for a businessman. And I kept up with the one journal for my eyes only.
I still write in journals to cope with life, and I have managed to write and publish my book, Apply Play: To Get Ahead of the Game. Having written so much in my journal, writing this blog was so much harder than I expected, yet now that it’s here on the page, it feels like such a relief. And I am grateful, because with the enormous help of my dear family and friends I feel I managed to discover and retrieve the energy that Barry and my father released that day. Now I use their energy to proceed with life and I have even learned to enjoy it, which seemed such an impossibility before.
Throughout her career, Ellis Bartholomeus has been intrigued with the value of play. She graduated from the Design Academy in 1996 as a product designer and realized that to have audiences own a message they needed to interact with it. Since then she has been designing play as a method/tool to amplify self-motivated learning and enable rich social interaction.
www.ellisinwonderland.nl
@ellisinwonderla
Digging Deep accepts guest posts on many topics from a wide range of experts, patients, health care practitioners, and others who work with sick children and teens. We welcome your perspectives and stories to share regarding ways to support the emotional needs of children with health challenges and the families and professionals who support them. Please email: info@diggingdeep.com if you would like to be a guest blogger.
