My stroke was on Thanksgiving Day 2014. Two plus years ago now. But though it’s been so long since that day, and it’s getting better every day, I still have flashbacks of the struggles of that time. The winter months are when the memories return to me the hardest and strongest. That’s when I was in the hospital for 2 and a 1/2 weeks and then outpatient therapy for 3 months. When it all was so very hard. ?
This list is a compiling of things that I’d like to say if I could sit down and talk to my caregivers of that stretch. I really, really have to emphasize though: many of these things were exceptions. On the whole, the majority (and more) of the Doctors, Nurses, Aids, and Therapists were extremely kind and courteous and professional.
Okay here we go, in no particular order…..
1. Don’t look and talk at everyone else and not me.
2. Try to avoid looking like you’re bored when working with me. It makes me feel small. Explain to me what you’re doing and why. That helps us both.
3. Try to avoid looking like you’re bored when working with other patients where I can see you. It makes me wonder if you feel that way with me too.
4. Don’t say to me, “it could’ve been worse”. Just because I’m considered high-functioning and it’s not as bad as someone else’s stroke doesn’t automatically mean it’s easy. I still have to walk through it the way that it is, though yes, it could’ve been worse. Don’t let me wallow in self-pity, but please address me with compassion for how my stroke handicaps actually are, acknowledging the present difficulties, and not a theoretical could-have-been.
5. Let me be myself. For me, I’m introverted and quiet. I’m not a small talker. And that’s ok. Yes, push me beyond what I think I can do, get me to talking when needed, but think through it and help me stay in my personality without judging or getting impatient.
6. I’m not just a room number or a patient. I’m a real person. My emotions are scattered all over the place. My brain’s been damaged. I can’t focus. I can’t think. I can’t make sense of what I’m feeling. I’m slow. I can’t speak right. The world is upside down. But I’m in there. Me is still in there. And I need someone around me to know that and acknowledge that.
7. Understand that just because I’m considered high-functioning, I’m still scared on many levels. Let it be ok for me to feel that. A stroke is a traumatic event. Comfort me. I desperately need that. No, don’t let me stay focused on the fear, but encourage me by empathizing with my fright. To have someone, anyone, who feels with me makes me feel more secure.
8. Don’t assume that because I’m crying I’m being a difficult patient.
9. Maybe you’re having a bad day, but I’m having a worse day.
10. Don’t cuss around me, even if it’s just at equipment. It’s extremely unprofessional. And if you do slip, an apology is warranted.
11. Encourage me. Be pumped. Praise my accomplishments. But don’t make me feel like a 3 yr old. I’m an adult. Celebrate my accomplishments. I need that. But please leave me feeling as if I’m an adult.
12. Listen to me. My body is doing things that I don’t want it to do. The answer isn’t always more meds. Sometimes the answer is to just bear with my inconvenient needs and bed calls without me feeling your impatience. I don’t want it to be this way either, and I totally feel bad about inconveniencing you.
13. I’m trapped inside my body, but I can read you. I can read your kindness and gentleness and respond to it though I can’t react to it. And I can read your condescension and censure and will go deeper into my prison because of it.
14. Don’t assume that I’m stupid, weird, or an idiot because I believe in herbs, essential oils, and good nutrition for health. Be humble about the things in my life you know nothing about. And certainly don’t bait me and get in-my-face about it.
14a. (Yes, this happened to me with a couple of doctors. And yes, I believe my stroke symptoms worsened after that. Even though I tucked in and didn’t fight, I was angry on the inside and it affected things. If you have to feel threatened and rail on someone who doesn’t believe the same as you, don’t do it in an emergency room with a probable stroke patient –or any other patient for that matter).
15. Acknowledge that you can’t understand what a stroke victim is going through. Even if you’re a nurse, doctor, an aid, or a therapist who works with strokies regularly, you don’t understand. So, BE HUMBLE. Even if you work with stroke patients day in and day out…and have for years….you. still. can’t. understand. unless you’ve had a stroke which I would never wish on anyone.
16. And finally, don’t make the victim feel like it’s their fault. For some, it is. Bad lifestyle choices, etc. For some it’s not. There are other things that cause strokes. But either way, no one deserves to have a stroke, and shouldn’t be made to feel guilty.
Be well, friends,?
mary
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