A letter of goodwill

On September 10th (or so) 2021, I had what is commonly called a stroke. It’s a medical emergency. The brain is time. I didn’t have that time. I had six TIAs and a stroke, and I awoke, and I carried on with life thanks to some fortunate occurrence of damage that it hadn’t been worse than it should have been. The stroke that clotted me was bilateral, went straight up both sides of the cerebellum and blocked much need blood and oxygen to the brain. It removed itself eventually, overnight. No help from the medical staff. Hurrah. I had two blocks that overnight, as I lay in a hospital bed cradling my cranium finally broke through like the Dam Busters, and let my brain activate again. What a flipping trauma. Now, here I am post stroke. Whichever way you’ve had it, stroke is unusual, despite millions having experienced it, but we are all fairly disparate when it comes to everyday living.

My brain is me, as I am me. I think therefore, I am.

But this is not half of it, it controls and manages a whole set of bodily functions that responds back to it.

I am at a point now in my recovery (one and half years) where serious questions about progress need to be made. A fellow stroke survivor who runs a podcast made the statement that recovery never ends. How do people feel about that? Do we address out goals accordingly?

So, I have written a letter in goodwill to our recovery journey …

Dear humanity,

I have had a stroke, and would like a room with intuitive temperature. I would like a bed and pillows as soft as feathers, but without the cartilage please. I would like a window that lets in fresh air, air that fills my lungs and makes me breathe easy. I would like a mattress that ebbs and flows to my tosses and turns.

I would like to wake when I feel ready, and if I wake and do not feel ready, I would like tot be able to turn back into sleep.

I would appreciate if you could turn down the sound of society. I can’t concentrate on all this noise. Please make sure that the rest of the world turns while I sit and ready myself for it.

I would like meals, beverages, and any other comestibles served directly. I would like to take these depending on my mood. If I am not hungry, I don’t wish to eat, and if I am craving some ravenous feast then please serve it at once.

I don’t follow instructions very well, so can I have tasks and duties put aside until I am ready to face them. I would appreciate of these are incremental and paced at my level of attention. Thank you.

I enjoy the company of others, but the triflings they go on about are not my own. Granted, I will pay them due respect but until I have the attention of myself, I cannot give in my full capacity.

I am anticipating that everything will be in reach, I cannot move by inches without predestining where something is and how I will manage it. If you could look after this obstacle, that would greatly be appreciated.

That’s enough for now.

Coffin cynnes,

Rupert :grin:


Hi Rups.thank you for, as always, an articulate post. You are still in the early stages of recovery and recovery does continue. However, it continues with ups and downs, or, more correctly, highs and lows. I am six years on and still constantly assessing where I am and what I’ve achieved. Walking with a stick is okay, but my drop foot still causes problems; left hand can do some things, but can’t hold a fork and can’t carry anything beyond lightweight things; mood varies, but I bite my tongue.

As for conversation…too much detail wears me out. I don’t like rooms where everyone talks at once. I don’t mind some praise for my efforts at recovery, but I don’t like ‘you do look well’. I don’t like anyone rushing to my aid if I totter slightly.I let my partner help me when I need it, but that’s what a relationship is all about, I hope.

I can change a bed, cook a meal and make a loaf. Fortunately, I can afford aids to assist me. I can go on short breaks and days out. One tip is to research things in advance. Yesterday we went to the Portrait Artist of the Year exhibition at Compton Verney. Entry fee a bit pricey, but my partner could come in free as my carer. There was disabled parking right next to the entrance and a shuttle bus from there to the house. There were lifts to all floors and good seating and disabled aids available. It was busy and, as always, you become a bit invisible. People stand firm and don’t move as you hobble towards them. Others crisscross in front of you, oblivious of your presence. That said, I enjoyed it immensely.

Good luck as you journey onwards.


Hi @Rups , another great post!
I’ve been discussing with work recently about reducing my days to try and concentrate on recovery as I feel I’m making no progress and find little time to focus on it (due to work). I’ve explained to them that I absolutely want to continue working as it is something I can still do almost to the level of pre-stroke. It is one of the most important aspects to my mental health but have to be careful not to let my physical health deteriorate. A difficult juggling act.
Your post comes at a time I am also questioning my recovery and fortunately my senior manager (who I talked with yesterday) is very sympathetic to my plight.

Keep up the good work and let’s continue our baby recovery steps. I think we probably are still improving but it now is such tiny increments it will take months to notice a slight change rather than days/weeks as it was in the first stages of recovery. Frustrating but I’m hopeful it can/is still happening. Of course this is all going on against the physical aging process so somewhat “peeing into the wind” :rofl::rofl::rofl:.

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Good post​:+1:t2: Whenever someone asks how am I doing, I respond with “ I am getting there. I don’t know where ‘there’ is, but I’m getting there”. The new me is continually forming and moving forward one step at a time and before long hopefully I notice - or someone tells me - that the many small steps have turned into a walk. I am typing this sitting on a sunny balcony in Turkey so I can claim that “I’m getting there”. Keep going…:+1:t2:

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Just came across this post in my exploring and this particular one still resonates to me over 2 years on :smile: I wake up, open my eyes, realise I’m not done yet and close them again. Sometimes it can be as late as midday before I know I’m done sleeping and can get up. Family have even come in and spoken to me, as though I’m wide awake, but I never remember. My daughter says it’s sleep paralysis, all I know is I don’t argue with it :laughing:


After stroke, I decided I had had enough of artificial time scheduling, I wake now at about 9:30 am - 10 am, I could wake earlier if necessary but without assistance, I will be busy dreaming. Okay, so I am not upright but that doesn’t mean I am not doing something. I am fascinated by my morning dreams, and I tend to re-run them in my mind once I have woken. I connect them to waking life occurrences and enjoy replaying some of the dialogue in my head. I keep a dream diary, so the good stuff gets penned.

Looking back on that post, I haven’t read it since writing it, my grammar is all over the place, it is encouraging to see that I am making improvement.


Great post Rups. I admire all of you who accept the situation we find ourselves in. I am finding it impossible to do that. A friend once said to me after her stroke that the stroke had ruined her life. At the time I thought she was exaggerating as she was talking and eating and walking with a rollator. However I now know what she meant and I feel exactly the same. This stroke has ruined the rest of my life. I am very much a pessimist and although I am walking with a stick I am very frustrated by the situation I am in and feel that I am not making the progress I was expecting and hoping for. Wrong attitude I know but I just cannot see my life improving to the level I wish for.


Shwmae @Apple, I think my life has gone from 100% to 30%, so now I have this lingering 70% to fill somehow, to bring myself back up to 100%. A different 100% but, at least, to my full potential again, or what I now consider to be a full potential.


Mood up and down with my headache and stroke

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On my right-side I am

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