Itās been two years and 8.5 months since my wife had her stroke.
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 didnāt 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. Sheās spent the last two and 3/4 years essentially ārecoveringā. Itās a mental state. Sheās been rehabilitating for nearly three years straight. Sheās taken breaks from appointments, but she was always left heartbroken and defeated because you canāt take a break from your own body and brain.
Iāve been waiting. I see her progress. I see her struggles. Iāve known for a long time that her biggest hurdle was always going to be her mental health and reaching acceptance.
Acceptance canāt be given. I canāt teach her how to accept the complete change of direction her life has taken. Thatās not the right way to put it. She didnāt start a second career. Sheās 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, Iād not recognize her as a person.
The other day she said she had something to talk to me about.
She said she wants to stop her appointments.
Sheās hit a plateau with her vision therapy. Her physio is more about maintenance than neurological progress - remaining active rather than solving a problem. She hasnāt 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.
She said sheās not a failure or giving up.
Iāve 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; sheās an adult and competent if not at a slightly diminished capacity.
I said no, though. She must continue with both her psychologist and psychiatrist.
I explained why. She already knew.
Sheās chosen to cease ārehabā. Sheās ending her ārecovery.ā
Sheās 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 canāt 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. Thatās what you do.
So sheās taken a massive step in her journey to acceptance.
I was so happy for her. Am. I am so happy for her.
Weāre 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. Sheāll 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. Itās 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.
Itās a great thing. Iām glad. Very much so.
