Birthday today and time for reflection…
September 16, 2006; fresh start at the University, everything is possible:)
many future plans, never heard of AVM.
September 16, 2007; nine months ago I was diagnosed with cerebral AVM,
this year has been a year full of investigations, MRI, sleep deprived EEG, MRA, angiography, functional fMRI, decision time, waiting.
September 16, 2008, decided to postpone treatment until the end of the academic year,
managed to finish the second year at Uni just a week before embo.
Rikshospitalet, embolization (20%), hemorrhage, paralysis, exaggerated startle reflex
(no one had never even seen or heard of this before in the national hospital!)
Wheelchair, physiotherapy, stroke unit Ahus, Cato Center rehab, home for a short period.
September 16 2009; a year more or less in hospitals, Sunnaas, rehab, epileptic hospital, new home,
electric scooter, crutches, ambulance, three more hospital stays, swimming, more physiotraining, Sahlgrenska hospital in Sweden investigating exaggerated startle response.
September 16 2010; another year full of challenges, started studying again, my father died :(
Trip to Tromsø, managed to do one exam in Bioscience-, ethic-, and environmental philosophy :)
Helicopter ambulance at the Uni in the middle of a lecture, news from the neurosurgeon, no further treatment, no more embos, not able to do more studying this spring semester, another hospital stay, managed to do a MRI with exaggerated startle reflex :) no rehab at Sunnaas after all the effort,
no gamma in Bergen because the risk of getting paralyzed is 100% (!),
...so no more treatment options at all!
No sign of communication with the national hospital! Proton treatment in Uppsala, Sweden??
Mobilizing all my energy, decision time again…
August, decided to start at the Uni again (!)
managed to do two exams (oral and written) in immunology :)
September, course in molecular biology started.....
Status today: I can walk short distances without crutches, I can dance (!) and swim 2 km without a break :) almost no exaggerated startle reflex when I am in familiar surroundings, I can walk on wobbly paths in the woods with crutches, and it is possible for me to sit in a full hour lecture x 2 without getting seizures.
I am not able to run, bicycle or drive a car, I can not be in a noisy environment, take public transport a long distance or do serious shopping, such as shoes and clothing...yet....
For a long time I thought the only way to get on with life was to remove the avm and refused to accept the decisions that had been taken. At the same time, I was also very anxious that further treatment may lead to complications, as it did last. What would gamma rays actually do to my head?
I was terrified! I did not know what I wanted, but I knew I wanted to take the final decision myself.
Now it is not up to me to decide the rest of my life. So it feels....
The news that treatment is not an option for me anymore, has been difficult to digest, at times totally unreal! It came to a point where I felt completely paralyzed, unable to think ahead or plan the future.
At all! I was quite resigned.
Aside from the fact that I have not been physically or mentally able to continue my studies after embo,
due to the fact that I was paralyzed and without a home, being separated from my children,
in the middle of a divorce etc. I was no longer able to actually focus on concentration.
For me this was worse than not being able to walk!
Long periods of constant worry about where to live, when I would see my children again,
how I could get on my feet again, walk without crutches, driving a car, if my AVM will burst,
if the ambulance would pick me up after seizure and drive me to the hospital again,
if there would be a treatment option for me...at all?
And if so, when, where and what? How much longer until "everyday" life begins again?
During this period I learned I had reasons to fear but also how to live with it without anxiety.
I know it sounds strange, but in this difficult time it has been important to me to try to complete my studies, to complete something I had begun. Something I felt was a sort of under my control.
It was like my whole life had bumped into a stop button, all I wanted was to search for the start,
or fast forward.
I just wanted to be able to move forward in life, but did not quite know how to?
Study worked as therapy for me, the brief periods I was able to focus, to follow a lecture and complete an examination was as wonder drug for me :)
...but it were also times I felt it was a nightmare, when I was not able to physically attend a lecture,
when I had seizures in the classroom, when my head was completely empty as cottonwool,
when I could not fall asleep in the night, could not get up in the morning, was unable to eat or worse of all, having to sign of courses I had begun. Depression.
Today I know that even if I find the challenge of studying nourishing, I also know that this does not mean that I can not go further in life if I do not finish my studies, or that there will not be new opportunities for me. There are so many other things I can fill my day with, such as macro photography, walks in the woods or just see a beautiful sunset over the fjord, etc...
Being with my children in my new home. I love it :)
An important reflection that makes me better equipped to face the life that awaits me.
Yet I choose to give my studies a last chance. Yes, I have been extremely tired at times because of it,
and it also happens today. The reality of the life I live now.
I have had to learn how to live an exciting life without being fatigued.
I have learned to listen to the signals that helps me make the right choices, to rest, eat, to slow down,
to recognize when the task is too much, to change my mind if that is for the best for me, and I accept it.
Being busy with things I love to do improves the quality of life, which again combat fatigue...
It's really liberating when I can now see opportunities where before I only saw obstacles.
I hope I'm strong enough to carry out these thoughtful thoughts of introspection into practice.
Only time will tell.
Positive thoughts to all of you from Hanne xxx
