I’m 43. I had a stroke. I have questions.
November 4, 2018 4:15 AM   Subscribe

My stroke did not affect me physically. The aphasia is manageable. But I’m unable to sustain high-level planning, attention, and step-building processes beyond an hour or so. I have to spend most of the day napping. Whether I will be able to go back to work is a question. My doctors are hopeful, but there’s no guarantees.

Can you all help me with a script for my friends, coworkers, and neighbors who think everything is “fine” because the effects of my stroke aren’t immediately evident. I am truly grateful that I am alive and can live a normal life, but I’m really frustrated by everyone wanting to pretend that everything is ok, when my brain is not the same. It’s not ok. Four weeks ago, I could think through technical and relational problems very quickly. Now I can barely finish this question and can only stand to look at a screen for twenty minutes at a time.

Bonus for support groups for young stroke survivors with higher cognitive difficulties.

Thanks Mefites.
posted by songs_about_rainbows to Human Relations (18 answers total) 5 users marked this as a favorite
For support and resources your location is important

Short and simple is best I think: my stroke impacts my endurance . Even if I look okay, I can't maintain the level of activity I'm use too. I'm capable but the endurance is gone, and that is hard. I sleep alot and get tired very easy.

Your still in early recovery and your body has been through alot. Keep up hope and take gentle care.
posted by AlexiaSky at 4:49 AM on November 4, 2018 [7 favorites]

I am so sorry! I would suggest saying "The brain is very mysterious and I am still in recovery". Then tell people exactly how you want them to help you - maybe being more patient while you work through a task, or giving extra directions, etc. As for support groups, there's probably stroke support groups out there, but you could also look into TBI (traumatic brain injury) groups. There are a lot of young veterans and athletes struggling with that. The cause of the injury is different, but they share the problem of a brain not working the way it used to.

PS. Your question is very eloquent and logical, you do have quite a few abilities left even though it may have been harder than it once was.
posted by sdrawkcaSSAb at 4:52 AM on November 4, 2018 [2 favorites]

My friend who had a stroke carries a cane with him. Even though he usually does not need it, it is a physical reminder to others that he is not the same as before (it is also good for when in public transport and people jostle others in ablist way).

Our society does not do well with differences, especially non-physical ones, so do not get too frustrated that you will have to constantly remind others. This is a huge transition for you and a therapist would probably be very helpful for you to vent, develop scripts, and build up a toolbox of new skills for you (your local Stroke Association may have suggestions). If you are close to a major research university you may want to connect with a neurologist or neuropsychology department where they may have research studies for you to participate in (plus, you may as well make lemonade out of lemons and have students learn from your experience to improve someone else’s recovery).

I would recommend yoga for you, especially chair/floor based so that you don’t have to concentrate on balance as much as just mindfulness and centering yourself.

Good luck in your recovery.
posted by saucysault at 5:12 AM on November 4, 2018 [3 favorites]

A friend whose husband had a TBI is involved with her local Headway group (one of the main UK charities for people with brain injuries) and as well as the support they give directly, she often shares their posts on Facebook.

They produce a lot of infographics, video interviews etc., that explain in digestible ways the invisible effects of brain injury. It’s a useful way for her to pass that information to friends in a semi-regular, varied way, that also carries with it the ring of authority, because it’s not just her/her partner posting personally. If you’re a social media user and you find a group near you that might work for you.

Or, more simply, even if you’re not in the UK you could still follow the Headway national facebook page for the same purpose.

Best of luck.
posted by penguin pie at 5:49 AM on November 4, 2018 [2 favorites]

Are you familiar with the "spoon theory" as a way of explaining what is actually involved in getting through a day with the sort of invisible injury you've sustained?

The basic gist of the story is that the author, Christine Miserandino, who lives with Lupus, had a conversation with a friend who was trying to understand Miserandino's experience with the disease. Miserandino grabbed a handful of spoons from the table they were sitting at while having the conversation and gave them to the friend. She asked the friend to describe an average daily routine, and she took away a spoon for every step of that routine as an analogy for the energy and effort each step cost out of her limited energy "budget" for the day.

Here are a few paragraphs from Miserandino's piece:
"I explained that the difference in being sick and being healthy is having to make choices or to consciously think about things when the rest of the world doesn’t have to. The healthy have the luxury of a life without choices, a gift most people take for granted.

Most people start the day with unlimited amount of possibilities, and energy to do whatever they desire, especially young people. For the most part, they do not need to worry about the effects of their actions. So for my explanation, I used spoons to convey this point. I wanted something for her to actually hold, for me to then take away, since most people who get sick feel a “loss” of a life they once knew. If I was in control of taking away the spoons, then she would know what it feels like to have someone or something else, in this case Lupus, being in control."

This doesn't directly address the frustration you're feeling with the specific change in your own experience of your brain and its capacities, but it might be something your friends and family could read as a starting place for a script you could all share.
posted by Hellgirl at 7:04 AM on November 4, 2018 [4 favorites]

"I was very lucky that my stroke did not cause problems with my movement. It did cause some issues with my endurance for tasks like reading and screen use, and my ability to concentrate. These effects will likely take a few months to resolve. It's not easy for me to slow down, but it's necessary, so I'm taking some time to receuperate and heal. I'm very grateful for your patience and support."
posted by pseudostrabismus at 7:06 AM on November 4, 2018 [4 favorites]

Have you had or will you have neuropsych testing? It might be early on in the healing process for this, but knowing what your strengths and deficits are may help in discussing and navigating the after-effects of your stroke.
posted by wiskunde at 7:12 AM on November 4, 2018

You might also look into resources for people with invisible disabilities in general, since it sounds like you share some of the same common frustrations (e.g., people saying, "But you don't look sick!").
posted by lazuli at 7:17 AM on November 4, 2018

I'm in hospital recovering from different urgent surgery so i cant reply properly for another 4+ days, no laptop allowed. I have a pretty good booklist and some resources i found useful. I had a series of TIAs not a full stroke, but the hospital after discharge treatment experience and social experience was very similar with another young (50<>
It's exhausting. Part of it is about your own new identity as you figure out this new brain and this new you, and the line connecting you to who you were. Exhausting brain marathon while you want to sleep a lot because your brain is literally healing.

Be grumpy at people. Be blunt. Try out different approaches - frivolous, short, open, whatever clicks. If just saying no is a relief, write it down with the polite full answer underneath.

You had a stroke a few months ago. Be very very kind to yourself and don't waste energy on a script beyond no, I'm tired.
posted by dorothyisunderwood at 7:22 AM on November 4, 2018 [4 favorites]

You might be interested in the autobiography Handywoman by Kate Davies, who after her stroke became a successful knitwear designer.
posted by serelliya at 9:15 AM on November 4, 2018 [1 favorite]

I would certainly not say "These effects will likely take a few months to resolve" because you don't know that. They may resolve or they may not; most likely seems to be that you will see improvement (it's only been a few weeks, you are firmly in the time window where a lot can happen) but your 'new normal' will still differ in various ways from your old normal.

A stroke is like an accident that happens inside your head. It can't be seen from the outside but something very real and potentially life-threatening happened to you. It's a big deal and it's okay to see it as such.

It doesn't have to be all bad: a loved one had a stroke, and negative effects aside, they are now more open and seem to have an easier time talking about emotions. In other words, it's possible that you will notice changes which you consider neutral or even positive.

Strokes are weird like that. A lot of different things can happen and it's unpredictable. The only thing that seems to be pretty consistent is that the biggest jumps in recovery happen in the early time after the incident and it slows down after that. Apart from that, all bets are off. But you are young and your chances are good.

In your place, I would probably say something like 'I'm lucky to not have suffered any physical damage, but there is damage and it's not easy to see. It's impossible to say how much of it will turn out to be permanent. So please don't expect me to be exactly as I was, because I really am not.'

Best of luck to you. I know none of this is easy. Please take as much rest as you need, I agree that your brain is healing and simply needs to be allowed to rest.
posted by Too-Ticky at 9:15 AM on November 4, 2018 [2 favorites]

Script: I am truly grateful that I am alive and can live a normal life, but I’m really frustrated by everyone wanting to pretend that everything is ok, when my brain is not the same. It’s not ok.

...I mean, you put this very well. People in our culture have a weird response to grief, pain, and loss. I am sorry to welcome you to the club of Those Who Know about TBIs and the way life changes on a dime. Do not feel like you can or have to solve this for people. You can be real: I’m having a very rough time mentally and emotionally, thank you for caring.
posted by warriorqueen at 10:35 AM on November 4, 2018 [2 favorites]

I often point out to my patients that the brain uses in the area of a good 1/5 of our energy. A stroke is a permanent injury. Your brain has had an injury and it is trying to re-route and re-build, but like any project (road work, buildings) this often takes a lot longer and is more complicated than we usually expect.

Often I will print out one of the Brain Hat images to indicate the region of the stroke in a layperson-friendly way if it is a cortex-region stroke. Pictures often help people understand the significance of an injury.

Are you working with an SLP who also does or is associated with a facility that does cognitive rehab? I would recommend asking for referral to this. Some facilities, usually associated with larger rehab hospitals, will have programs like cognitive and speech day programs.

If you are still in Kentucky per a previous ask.me question, you may find resources here or here. I can't vouch for them myself as I am not in that area and I don't know any vascular neurologists in that area myself.

I specifically work in stroke, but I am not your medical provider.
posted by cobaltnine at 1:48 PM on November 4, 2018 [4 favorites]

My situation was very different, but when I was in the early stages of trauma recovery (another kind of invisible injury), some very thoughtful friends suggested I write out a note to share with people who I wanted to know about what I was going through. I wrote it on google docs and would text them the link (even if we were physically together).

The note had four parts:
1. This is what happened
2. I’m doing things to take care of myself
3. What is helpful from friends right now
4. What isn’t helpful

I suspect you might find it helpful to write a similar note. That way you only have to do the complicated task of explaining once.

By doing it on google docs, I was also able to edit it to change the list of helpful/unhelpful things as needed.
posted by ocherdraco at 2:14 PM on November 4, 2018 [1 favorite]

A blogger who I have followed for years had a stroke postpartum that permanently changed her life. I recommend her blog both because I think you will find her relatable and maybe even supportive and also in hopes that some of her words that she has used to explain her situation to her readers may be helpful to you. Here are just her brain posts--if you scroll to the bottom, you can read from the first mention of her stroke.
posted by hydropsyche at 4:33 PM on November 4, 2018

I had a massive stroke out of nowhere when I was in my twenties. Spent about ten days in the hospital, then went home and slept a lot. I remember trying to cook something simple, I think it was mac and cheese in a box my kids wanted, and having to think through every single step, like find a pot pick the right size pot put water in it figure out how much water all the while also trying to turn water on hold the pot then walk three steps and put it on the burner light the burner wait until it boils, etc. etc.

Anyway, to the best of my recollection it was more than two months before I got beyond that stage. At three or four months I started driving again, rural and small town, but I still was not really totally functional. I remember one of the (mostly useless) doctors telling me that whatever functionality I recovered within the first year would be pretty much it. I don't know if they still say that, it happened forty years ago this coming January.

The two main things that never came back are my lower left peripheral vision and my ability to remember phone numbers and birthdays. It could be that there are things I don't remember having forgotten. However, I did manage to go on after the stroke and earn some degrees, including an Ivy PhD .

Consider seeing a therapist to help you navigate the emotional and social aspects of your recovery. Tell your friends/neighbors/coworkers that your brain is still healing. Send them a link to this question here. Don't push yourself too hard.
posted by mareli at 4:57 PM on November 4, 2018 [7 favorites]

Almost 4 years ago I went into the hospital, because I had a ...snow. No, a stroke. I had a stroke. My friend and I laugh now, because I really didn't want to use the 'stroke' word to describe what happened to the doctor. Fuzzy falling snow in my brain was bad enough. There were linguistic difficulties, which is what cued my friend into realizing something was wrong, but they seemed to resolve quickly by that evening. The next morning, I woke up without my words.

I had very few physical symptoms, other than some coordination and balance issues and peripheral vision loss. But I couldn't articulate what was wrong with inside my brain, and when I tried to read, most of the individual words had meaning, but a sentence was hard to parse, and a paragraph had no coherence. There were still words in my head, but they wouldn't connect externally.

When I was being tested, one of the things they asked me to do was name five things in various categories. Five common animals--easy peasey. I'm an animal nut. I can name a hundred critters easily. Horse, cat, dog... bra. BraBraBra!! I knew it was wrong, ridiculous, I was laughing, but absolutely utterly frustrated and slightly terrified. And of course, I had perseverance, so I kept going back to the two missing animals, when the docs wanted to move forward with the evaluation. About an hour later, as they finishing the testing and were moving out the door, I sat straight up and shouted, "PLATYPUS!" The mind is weird. It took nearly a month before Bra resolved into zebra. Go figger.

At first I had to hunt words, and I stuttered. Terry Pratchett gave me back the ability to read. I read and reread all his books, and they made sense, because I knew the story, knew there were puns and cross references, I just had to remember how to find them. It was exhausting.

I couldn't remember how to do dot-to-dot puzzles. I couldn't sequence. My PT told me to play the Daily Set game, and it's something I still do. On a good day, I can finish all six patterns, occasionally, I miss one, or even two. That means maybe I better take a nap, or go to bed early, because my brain needs a break. At first I did Sudoku, logic puzzles, find the difference, and hunt the picture games, and it was hard. I probably made hundreds of numbered lists, and I learned not to get impatient, because that would derail what I was trying to accomplish.

The best advice I got from my wonderful PTs was to nap. Nap daily, nap anytime you're tired. Nap after you've composed an email, watched a movie, had a conversation. Let the words soak into you, and take care of your brain by sleeping. You're trying to form connections, and if you get tired, you can't build the bridges back to the words and skills. Nap after PT, nap after you take a walk. Walk daily. Meditate. Take frequent breaks from the computer. And sleep. I swear I slept for six months straight.

People who didn't know me before are surprised that I had severe aphasia. Friends say they can't tell there ever was a problem. I still can feel how things are... different from before the stroke. If I'm tired, I can feel a stutter, even if people say they can't hear one. I can't pull a word into mind, so I have to change to a different word on the fly, so to speak. I get some hella funny malapropism going. I still occasionally nap, if I need to. Stroke survivors need to be nice to their brain.

One other good piece of advice. When you, I, and everyone is talking, it's a good idea to "Pause, Plan, Speak" No one notices if you take a half second to do so, and it's a lot less exhausting.

Take time to heal, and when you finally feel comfortable, read
My Stroke of Insight: A Brain Scientist's Personal Journey by Jill Bolte Taylor.
'Ms. Taylor got a research opportunity few brain scientists would wish for: She had a massive stroke, and watched as her brain functions -- motion, speech, self-awareness -- shut down one by one."
Here is her TED talk.

There's a lot of feels that come along with a major brain injury. Frustration is a huge one. Fear, depression, anger, even embarrassment. (which is silly, but hey it's there) Eventually, there will be a kernel of pride. You are a stroke survivor, and you've done the hard work of healing your brain and getting your life back.

You want those guarantees from the docs! I will guarantee that you will recover. You be able to resume your life and your job. The reason I can do that is because you have had a stroke, and you have written a clear and concise AskMe question. It's early times. If I can do it, you can do it.

I’m really frustrated by everyone wanting to pretend that everything is ok...

I had to laugh when I read that, because that's exactly how I felt for the first year. It is OK. Pat yourself on the back. You have things together to the point that you can fool 'em into thinking you're your old self. The people who know you and love you can finally relax, because they see you getting better daily. It's a PITA, but you will have to remind them that you had a stroke. And you might see them wince, because they've forgotten that you had a major life changing experience.

Another funny story--a couple weeks after my stroke I was out fixing fence with my husband. He was stretching the wire, and I was flailing around with the hammer trying to pound staples. He was cold and cranky and thought I was screwing around, and he groused at me. I whipped around and pointed the hammer at him and said, "I. Had. A. Stroke." I had been doing such a good job of faking being 'my old self' that he'd forgotten.

If you're like me, you generally don't want to play the stroke card with other people when you are having a rough day. It's OK to say, "Give me a minute, I need to process." Or "Excuse me, I'm tired and I'm having trouble working this through." Because EVERYBODY deserves a minute to process, and EVERYBODY has times they're tired.

Now go take a nap.
posted by BlueHorse at 7:40 PM on November 4, 2018 [8 favorites]

I'm so sorry you are going through this. Although I do not know what it is like in your exact situation, I do understand the frustration of not having something visual that non-verbally screams to the world that something happened and you are healing. I am recovering from a rather brutal surgery and while I look fine to passers by, I am NOT fine, nor 'myself'. I'm only about 40% mended and that 40% is apparently just on the exterior. I do understand that part and it can be maddening.

There is some great advice above, so I will just add this: there was a brief period where I literally threw my phone at the wall in frustration of all my well-meaning friends and family saying "let me know if you need anything!" This made me so ANGRY because why the hell should this additional burden be put on me to manage them while I need to focus on healing?! Grr.

Anyway, I then reframed this as an opportunity to communicate what I needed, which was for compassion and understanding. I realized that often people really only know what they see and hear, so if they were not seeing visual cues that something is not right with me and I was not saying anything, this was my chance to do something.

So, I then started to answer "LMK what you need!" With: "Yes, I do need something." To grasp their attention. Then I communicated my feelings, frustrations and worries (tailored to the recipient of course) capped off with asking for their support and understanding. A smile "Can you do this for me" was often sufficient.

Yes, this put a lot of emotional onus on me, but it was surprising how well people responded and how supportive they have become. Just an anecdote and mileage may vary of course. Using the spoon script above works well for this too.

Rest and pamper yourself and nap, nap, nap!
posted by floweredfish at 6:13 AM on November 5, 2018

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