Alas, none of the bottles had the right thing, so I went to my own accumulated ✨things✨, trying to think whether I’d have the right size bolt somewhere for something else.

I did.

I brought it in and tried it out and it fit.

Problem solved.

For reference: it was not a cutesy, demure stroke. It was a hemorrhagic stroke in her brain stem that presented with the classic half of the body does not work. She didn’t know who I was for a hot minute. Well, 18 hours from the moment the doctor finally roused her with violently aggressive sternal rubs, she said no when he asked if she knew who I was, to the next moment I saw her conscious again and she knew who I was.

She was in hospital for 105 days. The first couple of weeks were in the neurosurgical step down unit at a hospital about an hour away. She had a drain (two, actually, because she yanked the first one out in her sleep) placed into a ventricle in her brain to drain cerebrospinal fluid that was the colour of fruit punch instead of the usual clear. Then she was sent back to our home hospital. Then she spent six or so weeks at a complex care rehabilitation hospital relearning how to walk, wash, use the toilet, and all of the very basic things she needed to be able to do in order to be safe in our home.

Anyway. She’s spent the last two and 3/4 years essentially “recovering”. It’s a mental state. She’s been rehabilitating for nearly three years straight. She’s taken breaks from appointments, but she was always left heartbroken and defeated because you can’t take a break from your own body and brain.

I’ve been waiting. I see her progress. I see her struggles. I’ve known for a long time that her biggest hurdle was always going to be her mental health and reaching acceptance.

Acceptance can’t be given. I can’t teach her how to accept the complete change of direction her life has taken. That’s not the right way to put it. She didn’t start a second career. She’s significantly physically disabled. She has cognitive impairments. She is my wife and I love her and she is exactly who she has always been, but I also know that if I went to sleep the night of her stroke and woke up today, I’d not recognize her as a person.

Anyway.

The other day she said she had something to talk to me about.

She said she wants to stop her appointments.

She’s hit a plateau with her vision therapy. Her physio is more about maintenance than neurological progress - remaining active rather than solving a problem. She hasn’t done occupational therapy in a very long time. Her support worker who took her for walks before her toes started curling and now mostly helps her to fold laundry or bake usually cancels their appointments, and while this is hugely irritating to me it is usually a relief to Spencer.

I said okay.

She said she’s not a failure or giving up.

I’ve told her that countless times over the past 2.75 years.

She wondered if she could also stop her therapy.

That was a hard no from me.

She can, of course, do what she wants; she’s an adult and competent if not at a slightly diminished capacity.

I said no, though. She must continue with both her psychologist and psychiatrist.

She was fine with that.

I explained why. She already knew.

She’s chosen to cease “rehab”. She’s ending her “recovery.”

She’s moving on to learning how to live how she is rather than exhausting herself trying to reach something that is unlikely to be reached through conscious effort.

You can’t speed up nerve growth. All you can do is do things that prompts your brain to create new neurological pathways.

And you do that by living life. At this point. That’s what you do.

So she’s taken a massive step in her journey to acceptance.

I was so happy for her. Am. I am so happy for her.

We’re still trying to solve some problems. Such as her curling toes and fingers. But that involves orthotics and DIY experimentation and Botox injections.

Yesterday we figured out a potentially hugely impactful solution to her curling toes. Arts and crafts and walking laps whilst naming cities in alphabetical order.

So at the end of the month, Spencer will reduce her vision therapy to once a month rather than weekly, and then that will be further reduced to a check-in to ensure no regression every couple of months. She’ll stop physio but continue with shockwave therapy for her toes, and she has found a program at the university designed specifically for adults with disabilities. It’s essentially an accessible open gym concept. The people working there will help with safety, moving equipment, demonstrating exercises, etc. She will cancel her March of Dimes support worker.

She will have less on her mind, more freedom and flexibility to go out and do things with people.

Wife: That’s David Tenant and Cush Jumbo.

Me: …..

Wife: …..

Me: …..

Wife: [slowly realizes]

Me: Do you really think that I mistook The Doctor and a black woman for Jason Bateman and Jennifer Aniston?

Wife: No.

I'm upset that my wife had a stroke. I'm upset that my wife has a brain injury forever. I'm upset that my wife who had a stroke and has a brain injury forever has to deal with that, and that I can't take away that pain and turmoil and strife and agony because I can't intellectualize her experiences for her. I am upset that how I travel through life is not a transferable skill.

I'm upset that my wife's post-stroke-and-brain-injury symptoms are compounded by the autism and ADHD and anxiety and depression that were already on her plate.

I'm upset that I'm upset that my wife's post-stroke-and-brain-injury symptoms are upsetting to me. I'm upset that my upset about my wife's post-stroke-brain-injury symptoms are compounded by my own autism and ADHD and PTSD and life.

I'm upset that I haven't yet gotten the hang of stopping what I'm doing and going to be alone in the dark and quiet before being upset turns into a meltdown.

I am upset. And constantly dysregulated or just barely hanging onto regulation. And upset that I can't stay regulated and that that is unlikely to change because you cannot have order and routine and a script when both people are autistic and have ADHD and their own separate traumas and one of them has a brain injury.

I am upset.

I am not upset that my wife had a stroke and has post-stroke-and-brain-injury symptoms. I am upset that I can't fix them and that my own brain won't help me to be better at not being able to fix them.

I'm upset that I won't stop. I'm upset that it is 100% understandable that someone in my position would need time to do absolutely nothing so that I could just exist and do whatever I feel like doing at any given time so that my brain isn't so full so that I can be better at the important things which are not working or making money or anything other than being content and helpful and caring and supportive and not only seeing my wife for a few hours a day at the end of the day when I'm already coming to the end of my ability to exist in everyday life and other people take her to her weekly appointments and help her with paperwork and pick up prescriptions. I want to cook and tidy and go to the movies and go to the botanical garden and go for walks and sit on a bench to watch ships go by and sit in the backyard and have a fire on a Wednesday night and not use my weekends for the things I can't do during the week like groceries and vet appointments and building shelves and cutting the grass and getting gas for the lawnmower and hanging curtains and building decks. Those are things I like to do. They're not chores. They become chores because they can only be done on the weekend when I've decompressed from the work week.

I'm upset that I broke my ankle and now everything is harder and painful. And I'm upset that this temporary minor inconvenience is upsetting me while my wife deals with the fact that the left side of her post-stroke-post-brain-injury body just doesn't do what she tells it to do. And I'm upset that I know that both of those upsets can exist at the same time and that comparisons aren't helpful or needed and that if our positions were switched I'd be appalled that she was upset about being upset. Except I know she is upset about being upset that I'm upset that she's upset and repeat forever. Like being happy that she's happy that I'm happy. Equal and opposite.

I'm upset that when I'm upset my wife tells me I would be less upset if she weren't here. I might be less upset for specific reasons, but I would still be upset and not be happy and I would not exist.

Super Bowl LI halftime show, Lady Gaga, Million Reasons, flipping up on “believe”. Scrub ahead to 1m20s if you want to get straight to the good stuff.

I have never been more aware of how much I fidget. I saw a couple of guys pick their nails once or twice, there were a couple old dudes chatting at the back, but I swear to god most of them were like statues. Sitting or standing still. Didn’t look away from the screen. Meanwhile I’m wiggling and jiggling and shifting and adjusting and staring at the ceiling and having adventures in my head.