by Susan Pellowe
The following are draft excerpts from throughout the book.
If you have found this helpful and would like to tell Susan that or to ask a question, contact her at 773-248-5774, or via email at spellowe7@gmail.com. Have a happy, hopeful day!
The Phoenix in many mythologies is a spectacular firebird symbolizing rebirth, renewal, immortality. It wears beautiful plumage of gold, silver, purple, blue, green, scarlet. It lives 500 to 1000 years, then builds itself a nest of twigs which ignites. Bird and nest burn intensely to ashes. Soon a phoenix egg forms and the new/renewed Phoenix rises to live again! It miraculously resurrects, recovers, becomes whole and healthy and flies higher than ever in glory!! What better representation of a stroke survivor?!
A triumph this morning. I was in the tub doing some hand exercises, and decided to see if instead of in-and-out I could move my thumb round and round. Known as twiddling my thumbs. Unlike a few weeks ago, I could do it!! So I lay there twiddling my thumbs! Whee! Only a stroke survivor knows what an accomplishment it is to be able to say with pride, "I'm just sitting here twiddling my thumbs!"
My first visit with my own doctor after I came home from hospitalization for my stroke, I was very impressed that he had already read thoroughly the file from the hospital. He knew what was needed. He confirmed that I had had excellent care. Further, in reviewing my records, he told me what I needed to hear: I could not have done anything different, he could not have known to do anything different, and before him my previous doctor could not have done anything different. My stroke just happened. My blood pressure had been moderate, my good cholesterol far outstripped any bad, I have always been slender, I am not diabetic, and I had no other warning flags of any kind for stroke. In fact, two or three times I had had stroke/heart evaluations, just because my dad had heart problems and I wanted to be cautious; I had always passed with flying colors, earned the prognosis that I was most unlikely to have any problems. I was healthy, took care of myself, followed a good diet, and all my tests came back in a normal range. The most recent had been a year ago. (My mother had had a complete physical review just five months before she had a stroke; she too received a clean bill of health. Some deadly rascals don’t give you any warning.)
Mine had been a 4 cm bleed on the left side of my brain a hemorrhagic stroke not caused by a clot but apparently by a vessel giving way. Dr. Vexelman prescribed zocor and metoprolol to reduce any cholesterol buildup, benicar to reduce my blood pressure, plavix and aspirin to keep my blood flowing. Over the coming months I asked many questions about this. It seemed to me that if I had had a bleed in my head, I would not want to encourage bleeding with aspirin and a thinner if I have another stroke.
His argument was that most strokes come from clots. You apparently can’t do anything to stop a head bleed anyway. If you are harboring an aneurysm that creates symptoms like unusual headaches and you complain meaningfully about the headaches, they may decide to do an MRI. An MRI might show the incipient aneurysm and an operation could put a clamp on it or put a coil in it, preventing a stroke. Since I had no symptoms whatever, this was apparently a weakness in a blood vessel wall in my head that just gave way. I’d had no symptoms.
The general consensus seems to be, I have since confirmed, that these precautions are the best the current state of medicine can recommend. There are a lot of things that we take on faith in this world. I’ve done my homework on this one and while I’m ever open to new information, it seems with medication I’m getting the best protection they can currently offer against an elusive enemy. I intend to be alert to new medical findings, but for the moment it looks as though I have to put my faith in this treatment.
What I remember most fondly was his asking me to raise my arms above my head. I had gone in a wheelchair, my right arm still useless. I looked at him, grinned, and said, “Well, I can reach my left arm to the ceiling, but I can’t do much with the right,” and proved that. He chuckled appreciatively.
He next said, “You will get it all back.” Exactly what the doctor at Weiss had told me. Except that Dr. Vexelman added, “It will just take longer than you want it to.”
Truer words were never spoken! Anything longer than Instant is longer than we want it to be when we’re healing. Had I known it would stretch to one year and well beyond – well, I thank him for the gentle warning, the Reality Check.
Paul’s daughter stopped in at the end of group rehab session. They have so many questions and he’s depressed, discouraged. We had to wait 15 minutes for our ride, so I was glad I had time to talk. He had a relatively small stroke but has this weird little laugh that’s developed, and a numb hand. The laugh drives his daughter nuts. It’s terribly inappropriate sometimes, and the sound of it is so unnatural, not at all like his usual laugh.
Boy, could I identify with that. This is one of the things a stroke can leave you with and there seems no easy way out of it. You just hope it will eventually pass. I told her of my laughing and crying and how uncontrollable and embarrassing they are.
For the record, there is a name for these uncontrolled emotions; it is EMOTIONAL LABILITY – labilis, from the Latin meaning prone to slip. In chemistry, that translates to unstableness, which in general terms means susceptibility to change or instability. Labile affect refers to the pathological expression of laughter, crying, or smiling (or as IEED, involuntary emotional expression disorder). Patients may find themselves laughing uncontrollably at something that is only moderately humorous. Or maybe not humorous at all; it may become a sign of frustration or anger or sadness. Labile affect is most commonly observed after brain injury. That’s us, folks a stroke is a form of brain injury that can cause emotions to become unstable.
My own laugh has returned most of the time. But sometimes I laugh on the intake of air. It’s a strange sound that can become an alien snort. It often becomes hilarious in degree so that it’s out of control and goes on for maybe a full minute. I try to get it under control but I haven’t hit on a way to do it. I just wait and go with it, then once it calms down I explain to those with me that this unnatural laugh is the result of the stroke and I’m sorry to have been so disruptive but it has a life of its own. It sometimes happens as reaction to something that I normally wouldn’t laugh at. This is Paul’s problem too, and the one that bothers his daughter. It’s not that either of us chooses to laugh, sounding cruel or rude; we cannot help it.
I also have a similar problem with crying. Something quite minor may touch me, and next thing I know my voice wobbles and I’m crying. It lasts from maybe 10 seconds to a minute or longer. Again I have to explain to those with me that this is a legacy of the stroke. I am not crying because my feelings were hurt or I’m depressed, for instance. I often cry in church because it occurs to me how I love the place; or I cry when I’m riding in the car because the world is so beautiful and I’m still in it; or when I go to a 4th Acts meeting or to a play and I think how lucky I am to be alive and able to do this; or a child on the bus waves at me. I’m not at all sad! Just moved. Over-moved, beyond all normal measures. It’s maddening. Here we spend our whole lives controlling our emotions, and suddenly the tiniest negligible emotion dominates us! I don’t mind seeming vulnerable – after all, that’s part of an actor’s tool kit and I am an actor. But this can be embarrassing not only to me, but to others with me.
I told Paul’s daughter not to give up on any part of getting better – till at least several years have gone by! He is frustrated too by using a walker; I recounted how hard I’m working to get my balance back – even though I may be free of even a cane most of the time, my balance is not as sure as I’m used to. His stroke was in the brain stem – a difference, maybe a smaller stroke physically, but difficult. We’re slower than we want to be; we have to adjust to that and hope to gain speed. But if not, maybe this is our new speed and we’ll all have to adjust to it.
I’ve been talking with some people about disruptions and the really down sides of a stroke. Not only physically, but some of the other changes that must be dealt with.
Stroke patients don’t exist in their stroke only, away from all other concerns. They have marriages, which undergo stress due to the stroke. I cannot speak directly to that, because I am single; but I’ve heard people discuss how they and their spouse feel as they work through this. Some stroke survivors are apprehensive, sure their spouse will see them as a burden and leave them – and in a minority of cases, they do. Some find their love deepens as they work together on this enormous challenge. In some instances the healthier spouse/partner tries to do too much for the weakened one, treading on their independence and truly interfering with their progress – if it’s easier and quicker to push someone in a wheelchair, she gradually forgets how to walk. If you constantly feed him the right word before he has time to find it for himself, he gradually gives up trying to communicate with speech at all. On the other hand, I know of instances where the healthy partner doesn’t see, isn’t sensitive to, or refuses a genuine need for assistance in getting dressed, putting on a coat, cutting up meat, walking across ice. It is a complicated balancing act and couples and caregivers need to talk out the problems, fears, solutions, and triumphs.
Other people suffer huge financial strain as a consequence of a stroke. It takes a lot of money to survive a stroke, pay for therapy, for up to 24-hour care in some cases, for transportation to hospitals and doctors. My therapy bills averaged thousands per month. In addition to that, I now take four pills a day which would cost over $300 per month retail. Again, I’m fortunate to have insurance to cover much of that – but the insurance for all these things costs something, too.
Depression, inability to return to one’s workplace, loss of income while having to spend money on medical bills – these are major life revisions.
Let me take a moment to talk about setting incentives. It does require certain skills in making choices.
Be realistic. Don’t say “I am going to walk by tomorrow!” You’re setting yourself up to fail. You might say “I promise me I will do my walking exercises tomorrow, and I will try to do 5% more this week than I did last week.” Then, if you do 5% more each week, in 20 weeks you could be 100% better than you are now. That is a Red Letter Day! Notice it does not indicate you’ll be back to walking 100% like your old self, but you’ll have come a significant step forward, if you’ll pardon the pun. Notice that in my determination to improve the use of my walk and gesturing above, I only hope (and vow to myself) to “vastly improve” them.
Choose something you really want to do, and do it. Maybe that means staying awake through your favorite TV show, or asking someone to take you for a drive to your favorite spot – and then going. Sometimes we say we want to do a thing, but we’re afraid it will inconvenience someone or for whatever reason we chicken out at the last minute.
Break it down into little steps, maybe with the help of a therapist, and start working toward your eventual goal. Maybe you really want to accomplish some physical thing, like playing golf again; first you’ll have to learn to stand balanced, then swing from side to side, then have enough intentional aim to hit the ball, etc. Each of those is complex! Take them one at a time, celebrating each one as an extraordinary accomplishment on your long-range journey to your goal.
Be content with nature’s calendar. Remember that the body has its own agenda and will not be rushed. You may not attain your goal when you wanted to, but if you hang on to those incentives, you will get there – through sheer will.
If you have found this helpful and would like to tell Susan that or to ask a question, contact her at 773-248-5774, or via email at spellowe7@gmail.com. Have a happy, hopeful day!