Skip to main content

What's it like to live in the brain of a stroke survivor???

First, quit calling us a "victim of a stroke", we are survivors of a stroke; the majority of us have found a way to live, as one professor said, not under our circumstance but above our circumstance! For many of us, we are some of the funniest, loving people you will ever meet. Second, don't expect us to be able to multi-task easily. If a football player tears his ACL, no one expects him to be on the field playing at a high level the next week; most who have suffered a torn ACL never play at a high level again. If a skier breaks his leg, no one expects him to be on the slopes the next week, skiing for gold; most who have broken their leg will never ski at a high level again. If a pitcher has to have Tommy John surgery, no one expects him to be on the mound pitching in game 7 of the World Series the next week; most who have had Tommy John surgery will never pitch at a high level again. What do all of thes have in common? A muscle, tendon or bone was severely injured, and because of that people understand that they might be limited. Stroke survivors have suffered an injury to their brain; some more severe than others, but each one has suffered an injury. Because of that our abilities are somewhat diminished; it is difficult enough for a stroke survivor to complete one task, but when a stroke survivor is asked to do one task, and then while performing that task he is asked to do another task, one of two things will invariably happen: the first task will be left undone so that the next task can be done, or the second task just will not be done, and everyone gets frustrated. Stroke survivors then get mad at themselves because they cannot do what they used to be able to do. Third, allow us to say the wrong word without always feeling the need to correct us. We often times say the wrong word,even though we know exactly what we mean. Sometimes we will be talking about putting something in "the drawer", but we will say that we put in in "the cabinet". Please don't feel the need to constantly correct us; it makes us feel bad when people are constantly correcting us. We understand if we say something completely off the wall, but sometimes we are taught in therapy to find a word that means about the same thing. For instance, if I have a pickup and want my kids to get into the pickup, but the word escapes me at the time, I might tell the kids to go get in the car. Please don't feel the need to remind me that it is a pickup, not a car. If we are putting something away and we tell you it is "on the table" when it is really on "the counter", don't constantly remind us that we messed up. We have suffered an injury to our brain and sometimes that manifests itself by using words that are sometimes wrong. Fourth, allow us to "not feel right" without always assuming that we need to go to the hospital or go to bed. There are times that we feel "spacey" or "have a far away feeling", sometimes our face will get a little numb, other times we will get terrible headaches, those are all the result of the injury to the brain. In some cases, as in mine, the Drs cannot remove the clot that caused the stroke, and that clot will still cause problems well after the stroke. We sometimes feel like the room in spinning, or we have periods of numbness in different areas of our bodies, and that is because there are still problems from the clot, but does not mean that we have to go to the hospital for every problem; I had my stroke in 2008, I bet I was in the ER 4 times in the first few months of 2009. My doctor told me on my next visit: those problems are always there, but your brain compensates so that you don't feel them; but, at some point, usually when you are tired, your brain loses the ability to compensate and you feel these things. Learn to R E L A X and give yourself permission to just rest, more than you have ever rested before. Fifth, allow stroke survivors to adjust to their new reality. A wise man told me once, Jim, think of your ability in the terms of money; you used to have $3 to give people, and you gave $3 in effort. Now, since your stroke, you only have $1 to give; don't try to give $3 if you only have $1 to give. Each stroke survivor is different, but it is safe to say that few stroke survivors have as much "money" to give as they did before the stroke. Don't look down on them because they can't give as much as they used to, but be appreciative that they are still willing to spend their "money". Thanks for letting me vent a little. Life is a Gift! Give it freely!


Popular posts from this blog

Does it get any worse than a stroke? Yes

On December 8, 2008, my life changed forever. I had a double sided cerebellar stroke with 2 brain stem compressions. It was not until December 10, 40 hours after my stroke, that surgery was finally done to relieve the pressure. Dr. Piper, the neuro-surgeon from Iowa Methodist hospital in Des Moines, told my wife that surgery was nothing more than an attempt to save my life, but that it would not erase the deficiencies as a result of the stroke. Although she admits that she did not really understand what Dr. Piper had just said, my wife, Laura, agreed to the surgery and the care team performed a decrompessive craniotomy, to hopefully relieve the pressure and allow my brain to function somewhat normally. For those who have followed my blog for the last 14+ years, the surgery was successful, I returned to the church and I now live a relatively normal life, although I do have some pretty severe, though not always visible, defieciencies. I really thought that life could not get any worse th

Sometimes I forget...and sometimes I just have a problem putting words together

It has been almost 15 years since my stroke, so you would think that, by now, I would be readily prepared for everything that life can throw my way; but, I often forget what it's like to have a simple head cold after my stroke. Now, understand, I am not suggesting that other people don't feel bad when they have a cold; it is just that it is different for a stroke survivor. Maybe some of the other stroke survivors feel the same way: many times when I get a head cold with the congestion, suffy nose, fever, etc., it begins to feel like I'm having a stroke again. For those who don't know what this is like, let me try to explain. I get up at night, whether to go to the bathroom or some other reason, and I feel completely disoriented for a few seconds. Not like I'm groggy, but that I feel the room is spinning, I can't tell which direction I am going, I forget where the bathroom is for an instant, things like that. On the first day of this last cold, I was going down

Sometimes my new life stinks...

For the last few weeks I have been experiencing some pretty terrible headaches; not the kind that you can relieve by rubbing your temples or taking Tylenol, but headaches that radiate from the back of my head. It seems as though I have tried several things to relieve them: taking naps, lying down on heating pads, taking Tylenol, turning the lights of, etc. but nothing seems to help. Now, I don't have them all the time, only a few days a week and I can tell that they are more from muscle tightness than anything else. I have been instructed to go the ER if they flare up again, because of my past history of headaches before my stroke, but most likely it is due to the muscles that were cut in the back of my head for the Craniotomy. I would say that most days I do not struggle with headaches at all; but, the days I do have headaches they are a doozy. I don't have blurred vision with them or sensitivity to light or sound; it just hurts. As I look back over the past 3+ years I realize