I’ve been to hell and came back from that hell. For that reason there is very little that scares or intimidates me. Very little.
You know what would scare me? A zombie apocalypse. See, to get away from a zombie all you have to do is walk fast. I cannot do anything fast so a zombie attack would be quite scary.
Learn these. Every single one of these things has been said to me by one moron or another in the last 3 years.
I’m very much into the whole brevity thing. (If you don’t get that reference I feel sorry for you.) Cut to the chase, get to the point, that’s how I like things. The medical establishment loves brevity. There is an abbreviation or acronym for absolutely everything. And when there is no abbreviation or it’s not used, words are shortened. Prescription becomes script and evaluation becomes eval. Medical people love brevity. Well if you work in this world of brevity and have a stroke, you’re kinda screwed. If you have a stroke, doesn’t matter where the hell you work, you’re screwed. There ain’t nothing brief about recovering from a piece of shit brain injury. You better get used to not being into the whole brevity thing.
When I was 24 I decided to go to school for physical therapy. I was bored and thought well I’ll go do this…. A few years after I finished that up I thought, just to mix it up a little, I’ll have a stroke at the age of 30 and completely F up my life. In school I learned this phrase…”up with the good, down with the bad.” This is how I was taught to teach people with a bum leg to go up and down steps. Up with the good – lead with the “good” leg going up stairs, then bring up the “bad” leg to the SAME step. Down with the bad – go down steps leading with the “bad” leg, then the “good” leg follows to the SAME step. This works perfectly for a sprained ankle or broken leg, not so much with a hemiparetic leg with severe ataxia and an intention tremor.
It’s the down with the bad that was my problem. That first year I had pretty much zero control over my right leg(bad leg). Going down is harder anyway and combine that with severe ataxia and uhhh(insert profanity here). Well, now I have complete control over my right leg. But I didn’t then and I couldn’t “lead” with it if someone offered me a zillion dollars to do so. So for the first year the whole “up with the good, down with the bad” thing didn’t work for me.
So what did I do? I led with my left leg(good leg – opposite of what I was taught) going down steps for about a year until I had the strength and control to do it the “right” way. I also held on to railings for dear life.
But that’s totally the PT in me talking, not the stroke survivor. I don’t think there is a “right” way to do things after a stroke. There are things that you should know to make it easier to get around but there is no “right” way. Do what you can, when you can.
This is the letter that Julia’s husband wrote that will be sent to the CEO, the Chairman of the Board of Trustees, and the Dean/Vice President for medical Affairs at RIC and it’s affiliated medical school at Northwestern.
I am writing to you as a clinical physician, a physician-administrator, and most importantly as the husband of a patient. This letter is a formal complaint against one of your physicians, Richard Harvey, MD, who behaved in a manner that was harmful to a patient, my wife Julia, and to your reputation as the leading rehabilitation hospital in the United States. His recommendations over the phone were superficial, uncaring, based on incomplete information, were psychologically damaging, and not at all what is expected of a medical director of Stroke Rehabilitation at a major center. Whether intended or not, the effect of his words were to tell my wife, “You will not get better, we can’t help you, find a way to enjoy what you still have in life, which I am sure is wonderful”.
Eighteen months ago my wife Julia had a right basal ganglia hemorrhagic stroke due to a cavernous malformation, leaving her with significant left hemiparesis and sensory deficit, but intact cognitive and language abilities. She has made improvement in her walking ability, not using either a leg brace or a wheelchair as of six months post-stroke, and is no longer using a cane at home. She cares for herself alone at home while I am at work. Unfortunately, her arm recovery has lagged her leg, so she is still unable to work or take care of our home, which she loved doing. For this reason we were considering coming to Chicago from New York City, where we live, for an evaluation and initial therapy to see if an intensive full-day outpatient course of therapy at RIC might be beneficial. Toward that end we called Dr. Harvey last week.
I understand, as should Dr. Harvey, that by its nature, a phone consultation is a challenge, preliminary by definition. When I called him I briefly outlined Julia’s history, similar to that stated above. I then brought Julia onto the phone for a three-way conversation. What most upset both Julia and me were two issues: 1) once Dr. Harvey became aware that Julia had seen Joel Stein, MD, a stroke physiatrist and chairman at Columbia Presbyterian New York, he took a step back, deferring to a close colleague’s assessment as reported by us without even speaking with that colleague himself, saying that he and RIC would have nothing more to offer than Dr. Stein and his institution, and 2) a clear underlying message that Julia has essentially no chance of regaining hand function, neither wrist nor finger extension, so she should stop spending most of her day doing rehabilitation at home, and essentially, “get a life”. His presumptuous and culturally insensitive words were, “You have a great life”, just learn to accept your (fixed) limitations. Julia could see where he was headed, and attempted to stop him, saying, “Please don’t go there”, but he plowed straight ahead anyway, saying what he apparently thinks he needs to say to all or most patients regardless of their values.
My Harvard-educated physician and award-winning graphic designer wife did not get where she is in life by being complacent and compliant. She works harder than anybody I know and is uncompromising in her standards. She wants to get everything or almost everything back in terms of left arm and leg function, and has worked and will continue to work ceaselessly at it. I thought that’s what the rehabilitation field’s ethos was – to understand each individual patient’s values and goals, and to work creatively and tirelessly to help her achieve them. And that’s why we called what we thought was the No.1 rehabilitation center. Instead, Dr. Harvey’s words were tone-deaf and harmful. He spoke insensitively to someone teetering on the edge of despair, and pushed her right over the cliff. And I have had to spend the last week helping her crawl back to solid ground.
I was taught that the physician’s art and skill lie in asking the right questions, but Dr. Harvey didn’t even ask us any follow-up questions about Julia’s hand function, which is actually not as black-and-white as he assumed. A physician must also have both the humility and the patience to reach his own conclusions, not blindly accepting others’ assessments, as Dr. Harvey did as soon as he heard our report of his friend Dr. Stein’s assessment, which was from well over half a year ago. He also seemed to adhere to the overly simplistic and reductionist formulation of 3 month/6 month/12 month benchmarks for stroke recovery and prognosis. Finally, it seemed that his interest in Julia ended when it was clear that she didn’t fit into his research protocols for transcranial stimulation.
In summary, we found Dr. Harvey’s approach to Julia’s request for help to be lacking the professionalism, compassion, and respect that should be standard at an institution of RIC’s caliber. Was that too much to ask of Dr. Harvey or RIC?
I was talking to someone recently in the midst of this cycle and I thought I should write a blog post about it. What happens is this – when you injure something it’s painful. This pain causes the surrounding muscles to spasm. This spasm cause more pain, which cause more spasms, which cause more pain, which causes more spasms………… It’s a vicious cycle and it has to be stopped!! You have to interrupt this cycle and cold is the best way to do this, especially with an acute injury. So ice is best. Try it, see what happens. I feel like I need to say more things….well here’s some Grumpy Cat pictures…
If you’re someone who thinks that my blog is too full of anger, browse away now. I’m warning you – don’t read any further because my blood is boiling right now. If you’d like to try and understand why I have anger, keep reading. Someone I know had a stroke in the right basal ganglia(cerebrum) about a year and a half ago. One of her main issues is that she cannot yet voluntarily extend her wrist and fingers. I was discussing this with her over email and this is what she, a former physician, said. I asked her permission to publish this……
She is not an outlier when it comes to treatment like this, she is the norm and it needs to stop.
“Last Friday my husband, a pulmonary and critical care physician, called the head of the stroke service at the Rehabilitation Institute of Chicago, Dr. Harvey, thinking that we might go there for an evaluation of my hand since they are rated No. 1. We were both on the phone when he called back. When we told him that I couldn’t extend my wrist or fingers yet he said that they had nothing to offer me in Chicago and that I should stop rehabbing and work on getting a life. When I said to him that rehabbing was the only life I had because I can’t do any of the things I need, want, and love to do, and that I wasn’t ready to give up yet, he basically said to get used to being disabled. He said all of this without meeting me or examining me. This is unbelievably bad medicine at supposedly the best place in the country. Like Peter says, lots of patients have flickers of movement to build on but it goes unrecognized and they are told they have nothing. Needless to say, I went into one of those death spirals I go into when I lose all hope. ”
Is it any wonder why I might have anger towards Western medicine?
Someone recently had the audacity to say to me that I should consider changing the way I write because 2 people who have not had a stroke or a brain injury of any kind thought that my blog had too much anger in it. So instead of defending me to these people who have never gone through this hell, this person chose to tell me that I should lighten up and change and made me feel bad for venting on my blog. Which is what a blog is for. I have never asked anyone to read this and never will. If you think that my blog is too negative, then don’t read it. I won’t be affected in the least little bit if you choose the option of not putting my URL in your web browser. Not in the least.little.bit.
Anyone who reads my blog regularly knows that I speak ad nauseam about the fact that I have an intention tremor. This is the opposite of a resting tremor. Everyone think of Michael J. Fox. Parkinson’s Disease causes a resting tremor. When Michael J. Fox is just sitting -resting- he shakes. The tremor comes out when he is at rest. When he performs a movement, the tremor subsides. At least that’s what I learned in school. I have no personal experience with Parkinson’s Disease and if I’ve learned anything it’s that book learnin’ certainly ain’t all it’s cracked up to be. Especially if you study neurology.
Anyway, what happens to me is the exact opposite. When I’m just chilling on the couch not doing anything, I can be completely still. It’s when I do something, like pick up a glass of water, that the tremor comes out. That’s why it’s called an intention tremor, it comes out with intent. So when I pick up a glass with my right hand, as the right side of my cerebellum is the damaged part, that glass better have very little liquid in it. Or else. My hand starts to shake. I’m really, really good at spilling things. Remember – cerebellum = same side of the body and cerebrum = opposite side of the body.
My vocal cords do the exact opposite. I had this test done where they stuck a camera down my throat in order to look at my vocal folds and they quiver at rest and calm down a bit when I make a sound. I think that’s really weird and I have no explanation for that. Anyone wanna take a stab at explaining that?
I say pretty much whatever is in my head. I’m never at a loss for words. I’m never, ever speechless. I have always been like that but you see, a few years ago I had a stroke that wiped out my speech for a time. I was pretty speechless then. I was constantly at a loss for words. Not because I had nothing to say, though. Oh no, I had quite a bit to say. I just couldn’t say it. Somebody once mentioned that this was hell on earth right? Well I have regained the ability to speak and haven’t shut up since. And I never will. Until my next stroke that is, that might shut me up again.
Here’s a picture of me and my 2 kids………
and here’s just a picture…………
The more I read, the more I’m convinced that meditation is the secret to recovering from a brain injury. Here, here, and here. There is a mind-blowing amount of research that supports the beneficial effects of meditation on the brain. So neurologists, what’s it gonna take? What’s it going to take for you to start recommending a daily meditation practice to your patients? Apparently, a mountainload of evidence is not enough so what will it take? Please, please tell me. I will find it and give it to you.
Please go here for a better, affordable alternative to learning Transcendental Meditation.
Sorry again about the previous email. I hit publish before I was ready again. I need to stop doing that.
Before the stroke, I was absolutely miserable and hated my life. I needed to make some changes in my life and I had plans to. But the universe apparently did not agree with my plans. The universe thought “no, first you’re going to do this. First you’re going to have a stroke, survive that stroke, and live in HELL for a few years. And not only are you gonna have a stroke but your doctors are going to royally screw up and make the rest of your life a lot harder than it has to be. And your doctors are not going to help you get better in the least little bit so you’re on your own kiddo.” Thanks docs.
When I was very ill and completely dependent on other people, I got a lot of help. For this, I am super grateful. That being said, despite being told differently, I don’t owe anyone that helped me a damn thing. Hopefully all the help that was given to me was done out of love and nothing was expected in return. Some stuff was expected of me in return, I know that. But somehow I didn’t buy into that. Don’t compare your illness to relationships or let it influence relationships. Don’t. What you SHOULD do is pay it forward. All that help that was given to you, give it to someone else. You get what you give. You get back from the universe what you put out there. Later this week I’m going to give you a very specific way to help someone else who badly needs it. I really hope you do and put some good karma out into the universe.
I recently showed off my intention tremor to someone(it makes a great party trick). So I picked up a cup, my hand started to shake and he said “are you doing that on purpose?” No. I take singing lessons every week. I have a tremor in my voice and my voice teacher said “you know that vibrato that you have in your voice is something a lot of singers aim to have!” Great!!!!! Nothing, absolutely none of my physical weirdnesses are on purpose. Someone once commented that she hates the term CVA, everyone knows what that stands for and I’m sure that you’ve heard that term a million times but here’s a million plus one. CVA = cerebrovascular accident. CVA = stroke. She said she hates that term because yeah obviously it was an accident! As if anyone would do this to themselves on purpose. Maybe if you had Munchausen’s or something you’d want to give yourself a stroke. But I certainly didn’t want any of this crap.
I am reading this book right now and it’s making me laugh hysterically. I suggest you all buy it. Something just occurred to me. The author of this book is named Allie Brosh and I have a girl crush on her. I have a regular crush crush on Daniel Tosh. So I guess I’m drawn to people with “osh” at the end of their last name. If your last name ends with “osh,” email me.
When I had the stroke, I looked BAD. Real bad. Now I look good, real good. I have nothing in the way of pictures or recordings to show what I was like back then. Nothing. I wouldn’t allow my picture to be taken and I most definitely wouldn’t have allowed someone to videotape me. I have no samples of my writing or what my voice sounded like back then. And I wish I did. For a bunch of reasons. I wish that I could prove to people the amazing transformation that I’ve made, but I can’t. No such luck. Now when I try to explain what I’ve been through and what happened people look at me like I’m nuts. But, I did not want that period of my life to be documented in any way. I was extremely vulnerable then and it would’ve been downright cruel for someone who was thinking normally to suggest to me that I should document what I looked like and try to take my picture or record me. But now almost 3 years later I wish that I had something to show for it all. When people learn what happened to me and what I’ve been through, they’re in absolute shock. So, document the crap somehow, you’re gonna want it later.