My Story Till Now
Learn, Understand, Change, Adapt
Learn, Understand, Change, Adapt
Short update and some reflections, Some time since my last update, time passes and I try to find myself, understand who I am now, give my life a new meaning a new content.
June 2025, A little update
Some time since my last update, time passes and I try to find myself, understand who I am now, give my life a new meaning a new content.
And it goes forward, keep in touch with some of those I met at Sunnaas helps, being able to be with them is easier, they understand, don't have to explain why, we know and understand each other, understand that just because it doesn't seem like it ok on the outside doesn't mean everything is okay on the inside.
I feel or rather I know I have challenges with brain fatigue, some days my head feels like it's been swept away by fog, fill with cotton..., even small simple tasks take an incredibly long time to complete, everything goes in slow motion, I get tired of nothing, the day is gone, nothing gets done...,
It feels strange to have it like this, just having to focus on what needs to be written on the shopping list can be enough for my head to say stop, my brain gets tired and the list remains empty, the task has to be postponed, cleaning the house has gone from being something I could do in a couple of hours to a demanding task that sometimes has to be done over several days.
So yes, everything has to be planned, thought through, I have to "persuade myself" to start tasks.
I cycle quite a bit, but even cycling, which is one of the few things I have left that brings me joy in my everyday life, is sometimes something that requires me to push myself to do, even though I know it gives me energy and joy, it doesn't happen by itself anymore. Getting started, even with things that bring me joy, is a kind of demanding task, but I am proud of myself because most days I manage to get started and do the task I need or want to do, I move forward, yes slowly, but forward, but from time to time it feels like I am taking one step forward and two steps back, things take time, patience has not been and is not my strong suit
I have been on a trip to Denmark to visit my family there, it was a nice trip, but again I also feel that I spend a lot of energy on such a trip, that it takes a few days to charge the battery when I get home, but I feel that I have become better at setting boundaries and saying stop, prioritizing myself, and using the tools I got from Sunnaas so that I do things more right for myself, and make such a trip a better experience now.
I have also spent a lot of time thinking about my situation, what happened and the consequences of the accident, changes that are and will be a result of the accident.
I remember what my life was like before the accident, I remember what I did, I remember who I was, I remember what gave my life meaning and content, I remember the joy of my job, I remember what I could do and how it gave me excitement and joy in everyday life, I remember my friends and people with whom I had contact, I remember that I was a resource in my job that had value for the company, that what I did meant something, that I was a resource for other people and that I could help, be there for others, I was a resource person…, so yes I remember…, unfortunately because remembering how I have been and what I could do, feels strange, painful and challenging, when today, I know that I am no longer is that person and no longer can do what I did, that my brain is no longer working as before.
My brain is different, I am different, I am not who I was, and yet I am the same..., on the outside I am the same, and that is what everyone sees, but on the inside I am no longer the same, and I probably never will be again.
I... my brain and how it works is all I have had for so much of my life. I understood things that no one else understood. I designed complex data models, complex information architecture, was innovative and at times groundbreaking in my work. My brain, the way I thought, was who I was, was my job, my identity. Now I don't know anymore, most of it is gone. What shaped me is gone, who am I now?.
Sometimes I think it would be better not to remember, not to know. Grieving for what is lost is a long and demanding process.
To be deprived of the opportunity to choose, and wake up one day and find out that your future is determined without you having had the opportunity to decide for yourself, that you have to adapt to something you never imagined, that most of what you had, what you knew is gone, start a "new" life, learn many things again when you are well over halfway through a life you felt you had good control over, accept it and move on, it takes time, I am on my way..., I think..., I hope, at least I am still fighting.
I am positive about the future, will return to Sunnaas Hospital in August for follow-up, will also join the Sunnaas Foundation at the MTB Camp in Trysil in August, and in August I will also start in an experience forum under the auspices of Sunnaas Hospital, where there will be meetings every 14 days until the summer of 2026.
My goal is to take the mentor training at the Sunnaas Foundation so that I can use my experiences to help others who are in a similar situation, give back the help I have received so that others can have a better life with various disabilities, visible or invisible.
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