I am still in denial that I won't recover, I refuse to accept that compensation is the best I can do. Anger still exists against the medical establishment that has not set forward a strategy for stroke rehabilitation for all survivors. Bargaining I never did. Depression was from the total lack of communication about what recovery looks like. My vision was that in 6 months I would be canoeing again. With no discussion from any medical staff that this was impossible, depression was inevitable. I haven't accepted my physical limitations because I know I will eventually get them back. I have enough drive ,persistence, pugnacity and smarts to move my brain functions around. In any event I set myself a goal to change stroke rehab worldwide, this is probably an insane belief. And the way to do that is to research and plan what needs to be done. Blogging is my starting point and from some of the responses it's doing a good job.
Dean, you have summarized my emotions, spot-on, except for the acceptance part. I will not accept that this is the way I will live my remaining years. I will row; I will live without an AFO; I will carry new plants to my garden; I will walk miles and miles; I will hug my kids and grandkids. I am pissed too at how the medical establishment has decreed that I am finished improving, especially since they are wrong.
ReplyDeleteYesterday, for the first time, I encountered a person who was clearly a stroke survivor out in the community. Why is it that I never see one of us?
Barb, maybe you never see one of us because the stroke person who is out in the community is doing relatively okay, being and looking relatively normal. And that is what we all want, to look and act like every Tom, Dick and Harry who is out there hurrying to a job, like every Mom who is teaching her 3 young kids how to behave in public, like every senior who is out there enjoying their golden years because they do not have to go to work, and are happy about that. I am always pleased when a person does not stand up for me when I am travelling on the bus, because it means they think I am capable of standing, therefore I am blending in with the AB population
DeleteGo Dean!
ReplyDeleteSounds like your journey has similarities to mine...when it came to bargaining it was like being told to stick my head in a dustbin ("put up or shut up!"). & it was months befor i found out that "emotional lability"(heightened emotions,crying etc) after stroke is normal/common. I felt a freak! (It's like being a child again having all your filters that you'd built over th years, strpped bare!Got to start again.)
ReplyDeleteAfter my stroke i was insistent that i was going to make a full recovery. Then the journey of disbelief, anger, depression rollercoaster started. Have started taking St.John's Wort daily for near 9 months now & that's been a tremendous help to get back on an even keel, & more balanced/stable in my moods (which effect everything) & non of the horrible side effects of antidepressants. I was amazed to one day discover that every stroke person in the group i go to, was on antidepressants!?!
Me & another stroke person who was in hospital at th same time as me, w' th help of the Stroke Association started a stroke group (mainly informal thing), where we meet in a cafe in town once a month, for ppl & their partners/carers - that's been a life line & a godsend. There was no support or anything out there for younger ppl- only for elderly! i feel it was especially important to include partners/carers as they are just as affected by th stroke & are even more neglected ..suffer isolation, depression, etc.
& Last year, as the funding for th Stroke Ass was lost/cut, miraculously(!) a stroke forum was set up in our area, so that professionals in th field, with ppl affected by stroke, could coordinate & brainstorm on what was needed in stroke care,hopspital & post stroke & how best to deal w' the coming (more)cuts. Me & my partner have been to all of them except th 1st one. That has been a transforming & empowering thing, & esp 4 me w' speech difficulties - i'm now helping advise on strategy for treatment & care specificly for those w' speech dif's.
I'm amazed/astounded...it seems professionals are just realizing what headway can be made in strokes...& all is not lost, as it seemed a year or so ago when th 1st cuts were announced.
I had not come across forums or bogs to do w' strokes b4 a few weeks back(this blog th 1st one) & i find what you write & post about MOST encouraging & informative/interesting.
All these things counter the knock backs & some of the frustrations. It is an uphill challenging journey of a lifetime...& a most bizarre one.
1 of th things i enjoy & take heart w' is your character,determination - no messin'! Thanku for what you're doing *:D
I found (at 59) that being looked at as "unfixable" was unacceptabe and I'm determined to continue to prove everyone who thought it wrong. It's wonderful to see others are doing the same. I just wish I could see/mix with them, it would help with the low days, and with progress. Is there any group near Derby, England? I have researched, chosen natural remedies, excercised intermittently throughout every day, and I'm open to suggestions for more! This blog is a huge bonus for me.
DeleteVery powerful post Dean. I have been giving it a lot of thought and now that I see a few responses I have even more to think about.
ReplyDeleteI know it is supposed to be a series of stages, but I think I keep floating back and forth. Maybe each bit of recovery puts me in a different place and I start all over with the cycle.
I keep thinking that I am really imagining it all or that I don't actually have a serious problem. (right now I am at a point where a lot of my problems are more invisible so people glancing my way don't recognize me as having a disability.)
Then I find I recover a skill and I think.. wow.. how did I ever imagine that was not a problem before? How was I living with that limitation?
It makes me doubt my judgment about my own skills or lack there of.
So it that denial? I think that if I was really in denial.. I wouldn't work so blasted hard every day.
As far as depression.. anger... bargaining... I think I do all three almost every day with wildly fluctuating moods!
Acceptance? Not going to happen .. I'm with you guys .. I have a life to lead and things to do.
I am certainly starting to care about what is going on with other stroke survivors in my community and I am not "accepting" all the difficulties out there in finding appropriate help.
Linda in Winnipeg
Linda, I also think I go from stage to stage. Until I walk people won't know I had a stroke which is one of the reasons I hate the comment, 'You're looking good!'.
ReplyDeleteBecause I am so progress-oriented, every time someone tells me that I'm looking good, I ask them what I can do now that I could not do last time They saw me. ?The answers are usually gratifying, which I think all of us can use. also, I am not yet on antidepressants, but see that in my future because both my husband and my neurologist have suggested that It would help me.
ReplyDeleteI hate the comment 'You're looking good' Its like your face isn't drooping so you must be all better. Simlar to a friends' dad who hates being told, 'You're looking spry'
ReplyDeleteA great place to start: educate stroke victims from Day 1 that not all "rehab" is the same. My husband was an inpatient at Sparrow Hospital for 6 weeks. Sparrow is a decent-sized, fairly reputable hospital in Lansing, MI. During that time, no one thought to mention that my husband would get the best continued rehab from an organization that actually specializes in stroke rehab. Rather, after 6 weeks of inpatient rehab, they gave him his "walking papers" and told us to make our own arrangements with Sparrow outpatient therapy across the street. It took us months to figure out that my husband was being treated by therapists who were also treating sports injuries. No one was really specialized in stroke rehabilitation, which as you know, goes much further than working on the muscle control to learn to walk again. We were thrilled to finally find Origami in Mason, Michigan which is an entire campus devoted to TBI recovery. Finally! 11 months after his stroke! I feel like we lost precious recovery time.
ReplyDeleteAnd in terms of the stages of grief, it's very difficult to go through the stages a different pace than my husband. He's the stroke victim, but I'm plagued with the idea that he should be going through the same things that I am - ha! how egocentric is that??? But I am much closer to "acceptance" than he is, of course. I want him to at least get to a place where he is optimistic about moving forward.
ReplyDeleteI hate hearing "your loking good". My stroke effected my cognitive, physically I appear the same as always outside, but have some lovely digestive issues, and strenght breathing issues, etc and I cant think, speak clearly , hold a thought, and many other isses. Who cares how I look, I want my mind back, i feel like a prisoner in my body. Pissed doesnt begin to some it up.
ReplyDeleteI agree that having cognitive issues (I have severe short term memory and learning difficulties) are very disabling, but being able bodied makes the AB population far more accepting of you, as they cannot SEE any disabilities, and therefor are inclined to treat you as an equal and with respect. I would trade my very good (retained) maths skills for a normally functioning arm, any day
DeleteI am a speech therapist who works with stroke survivors. I found this blog while looking for info re: stages of grief and stroke. Dean, I found what you said about the lack of communication from the medical community to be especially moving. I try to provide as much education as I can. I find that I am limited by multiple factors including: very concrete, set in their ways doctors who disagree with everything I say (and let me tell you guys, in terms of stroke rehab you should generally put more importance on what your therapists say); progressive funding cuts to rehab programs; black and white insurance companies who cut patients off because the people reviewing therapy documentation are not educated enough to comprehend neurological deficits; and the variability in recovery seen in each person.
ReplyDeleteWe're taught that stroke recovery takes anywhere from a year to a lifetime. There are neurologists and sadly therapists as well who will say that after a year or 2 people cannot progress. My personal experience is that is seriously depends on the individual. I've also noticed that lack of family support, anxiety, depression, limited resources can also negatively impact stroke recovery. Also, as a therapist want to tell all of you survivors and caregivers of survivors (who, let's face it are survivors as well) your therapists want to help you. Every time one of my clients make gains, it lights up my day. When someone I'm working with is struggling, I am wracking my brain, looking up research, trying ot find out what will help.
I am afraid this is getting too long. Here is the advice I can give you:
If you do not experience loss you are weird. You are allowed to feel depression, grief, anxiety, anger, what have you. You are HUMAN.
If these emotions result in decreased motivation or if you are having trouble coping or if the people your love are having trouble coping, seek counseling (a neuropsychologist or someone who specializes in working with stroke survivors), go to a support group, try meditation/ acupuncture/ anti-depressants or whatever will work. It is not fair that this happened to you but you have to fight like hell if you want to recover.
Peer-led therapy groups are awesome. There is a great one in Oakland for people with aphasia.
Educate yourself on your injury and the brain.
Please, please follow-through with your therapy recommendations.
Some things may always be different. Celebrate anything that improves or that you are able to do.
Insurance sucks. But there are coming to be more and more community resources. Use them!
You are all brave and amazing.
Thanks for your comments Zoe, 1 less medical person to convince of the current stupidity. I discarded all my therapy recommendations because they were function-based and that is not how I will be able to recover, I will have to rebuild individual muscles and then put them together. Functional would require my brain to handle 4 tasks at once, willed movement of a specific muscle, shut down the spasticity of the antagonist, register the sensations and space perception. That is not physically possible right now, if I want to control one muscle anything else literally drops by the wayside. I will recover.
Deletegrief for the loss of what used to be. is hard to get over.... my partner has suffered a stroke, and already after a short while, made good progress... i know he will never stop striving to improve, its a trait i love him for... strength and inability to accept failure... keep going everybody... and dont settle for advice or help you are not happy about... its your body, your mind and your journey.....love to you all
ReplyDeleteThank you for admiring your husband and being there for him, during the worst time of his life. Your support will make an incredible difference, as he is working, not just for himself, but to be the man you knew him to be, and know that he can still be. I thought my partner, at the time, felt like you, but, I became a burden, a nuisance and an embarrassment to him, so he dumped me, he wants someone who is his equal, which I can never be.
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