So, what has happened this last year?
tl;dr – nothing happened, move on, nada to read about. Bye gone. Or…?
A few improvements
Well ok, a few things of me may have been a tiny improvement.
There have been quite many tiny “minimal improvements” during this last year. And two gigantic improvements… at 23:59 (11:59 PM if you don’t know we actually have 24 hours in a day).
I speak a lot better than two years ago. Well, I feel that, you may have different thoughts, you who are listening to me.
My last speech therapist said bye-bye, in January this year. She can’t help me anything more. But she also said: “you will never get rid of aphasia“. Ok. Just live with it. Embrace it, Jonas.
Probably only one is getting worse: the fingers on my right hand. Maybe, maybe not worse, but nothing not better. Live with it. Embrace it, Jonas.
I shouldn’t say only worse – these fingers are clearly stronger, and that’s good. They just get more and more cramping, it’s locked into a fist. Live with it. But I don’t want to! I won’t embrace it.
The problem with my fingers is not explained to me, by the true pros doctors. Why? Well they can’t understand… Why why why…
It’s hard to really know: what is truly improved, and what is just me getting more knowledge of my issues, and I work around the issues instead of solving them. I don’t know.
In November, I got surgery in my foot for two reasons: extending the tendon from my toes to the knee, and cutting off the arthritis’ “stone” on my big toe. I had a cask for six weeks, just until Christmas. It was a good job by the doctor, mainly because my big toe is not any more crazy bend down, so I can actually walk easier without shoes to protect my toes.
During the cask, my muscles lost even more. Back to the gym…
I’ve heard here and there that I – little tiny me – inspire others with similar issues in this world. And even those without these issues. I don’t know why, I don’t know what’s special about am. Maybe, an important value is that I like to add more energy than I drain.
I just simply share. There’s no plan, there’s no hidden agenda – I just have to write. I have to get it out of me. When I put words into my thoughts, ideas, feelings, dreams – it gets easier to understand them, to handle them – easier for me to control myself. And, as I have heard, to others as well. It feels like a true bonus result.
I believe, when I started to write, it was only for my practice. I got a bad case of aphasia. I need to write, find when I misspell, when I create weird sentences – I have corrected it. I still continue, always when I write, I have to read through it once, twice, five times to make it be understandable. I hate reading… But I have to. Embrace it, Jonas.
There were some gigantic happenings…
The first one happened very recently – 8 February, 2 years minus 8 days since my stroke – and
I bought a car.
For the first time, a car with auto gears (I’m unsure what it is called in English – please correct me if I’m wrong!). I cannot drive a car with a manual gearbox. Of course because of the damn right-hand issue.
I can now drive. I can shop for groceries. I can let Linda have some wine when we meet friends. I can meet my parents whenever I want to. I can drive to my gym… I can finally make Linda’s life be a tiny bit easier.
The second gigantic started the next day. 9 – 12 February, exactly two years after we were at Hemavan – Linda and I flew up there. Where is that by the way? Hemavan, north of the Wall.
After my stroke, I lost a large part of my soul. I can not ski anymore. It affects me majorly.
I was really nervous about this trip. Can I keep the balance? Are all my muscles gone? Will it take 2 seconds and then I broke my legs?
The biggest issue – will my brain handle it?
After my stroke struck us, Linda accepted that our years of skiing are now gone and over. It’s not happening. Bye bye. Embrace it, Linda.
I could not embrace it, not just yet. I have – have to have to have to – to take it a wild shot. Or a Hail Mary.
I did it.
First 10 seconds:
After these three days on the slopes, I know – I don’t believe, I know – that it’s worth keeping training. Do boring simple muscle training, day and days and weeks and months. I have to. I want to.
Three days with quite different weather, the different snows were nice(-ish) and the sights were… less than nice… Many complications for us going skiing from scratch again gave us some lovely Challenges.
But I did it.
I don’t ski like a God anymore – as I did before (very weird subjective statement – just embrace it please). But actually, for the first three days on the slopes, with a very shaky leg and an almost dead hand – in that situation, I ski like an invalid God. Period.
Do you ski? Have you ever skied without the poles? It’s a bit tricky. You can do that to work out with some special features, or just to have fun.
When the balance is not the best, you need the poles to help you.
Just having one pole, it’s a bad mismatch. You have to find another type of balance. Where do you put your weights, when you turn right, how does it compare with turning left?
Restart from scratch.
Maybe it’s a blessing – I get another restart! Learn it again, and also use all the experience I already have.
My body has worked really hard. It’s sore. Here and there. Not hurt, nothing bad has happened, but sore. I love it…
I trust my brain
My brain? Well the body needs muscle, and it should just do the correct things, at the correct moment. It’s easy peasy.
But the brain has to be working at a higher level, every time I’m out there. Higher than when I’m reading, higher than when I’m at work, higher than when I’m delivering a session on a stage.
This type of sport is my type of sport. Just writing these words, I get goosebumps in my whole body.
Did I say I love it?
So did it work? My brain is tired, but it has had the best days since my stroke smashed me, two years ago. Maybe the best days since… I don’t know. It’s tired, and it just needs to get back. I’m on my way… Embrace the need, Jonas.
Oh, I work now
I am now working again. Currently at 50% at CRMK. That’s fun! Too!
We have the agreement that they give me what I can, but take it slow. I will get back. One day, some year. Take it easy. One day…
I still get a bit of help from “the government”. I still (now again, after a too-long break) go to my “personal trainer” at a small gym, a rehab gym with a focus on me, and many with similar issues. Nick D would never ever go to our gym, he would only giggle loudly at the weights and machines. But it’s good for me.
Another support I get from the government is that they accept that I need to go back slowly. It will probably be the last year at work (from May last year), and I will only go back to 50%. I started 25%, how half a year. First three months, those upstairs paid all my salary. Then they pay 75%, now 50%, and probably the next three months too. A bit boring talk, but it is magic that they want me to get back, and they understand what this rehab needs. Sweden is quite ok.
Number one support
It is natural that my wife, Linda Rapp, is my Number One Support. She helps me, she pushes me, she corrects me when my words don’t come out the way they should, she hugs me when I’m just down for no reason. She has been cooking crazy many times… The extremely boring laundry, she of course does that too… And so on and on…
I’m out of words, I can blame aphasia, but saying what she means to me is completely impossible. I tried, on this Saturday evening up in Hemavan, but I only came halfway, then eyes were drowned in my joy tears, so I ended with a simple Italian “cin cin” and then we cheered and drank.
Why Italian? I have a tic for speaking in other languages. Linda understands me, I hope so, even if I can’t say all the things I want to say.
Push me forward
I get pushed forward, sometimes very unexpectedly. At my work, CRMK, they just push me into a meeting with our customers, pushing me on the stage. They trust me more than I do.
They are right. Thanks so much for pushing me!
I try to push myself. Sometimes very careful, being afraid of what might happen, I feel weak, and I am unsure.
Sometimes I don’t know the words “take it easy”, “accept it”, “try next year”, “it takes time”… Usually my response is “Why not?”. And I continue, smashing my head into a wall, repeating “Why not??“.
Often I have to accept my situation. But now and then, I can continue to try, to test, to prove against the world, that I can.
After less than two years, I have proved that I can:
- Walk good enough
- Talk understandable
- Work 50% pretty ok
- Standing on stage, in England, Scotland, Spain, USA, Slovenia (so far)
- Being on stage talking about my experience to other strokes patients
- Drive car
- Ski like an invalid God
- Love and be loved
What happens during the Third Year, of My New Life?
No idea. Well, a few ideas.
Oh, by the way – THANK YOU who support me, who send me small notes, who trust in me, who read so far as this blog post!