TABLE OF CONTENTS
Thoughts for a Month
TIRR Brain Injury Glossary
Personally Im always ready to learn, although I do not always like being taught.
Once home, since I was not going to be a national officer, I could continue on the church boards, hold three chairmanships for the Insurance Womens Association, do their bulletin, attend head injury meetings, get Danny enrolled in college courses, tie up all the loose ends on my mother-in-laws house, arrange for a mortgage to build a church parsonage, do all the setup for a white elephant sale at the church, and start taking a parliamentary procedures class to become a registered parliamentarian. Piece of cake! I was also planning three trips out-of-town for September and October, which were fast-arriving.
I had promised my family that once the convention in Denver was over, I would really try to quit smoking. So off to my friendly G.P. I went and said, I promised Id do this; I need drugs. Having read once again about the successes that had been had with a blood pressure medication on affecting the pleasure center of the brain and reducing the craving for nicotine, I wanted that and Valium to keep me from becoming this banshee that I knew I could be from past attempts. I also wanted a Stress Test and a breathing evaluation for a baseline. I knew that seeing improvement would help keep me off if I eliminated those awful things that made my closet smell bad, cost me big bucks, and Danny hated. I vowed not to smoke in my office. I hadnt picked up my phone without a cigarette in my hand in 20 years, but I would do it. There was also no more smoking in the house. If I really wanted one, I had to do it outside. That became a little reminiscent of when I was a teenager. Although our folks knew we were smoking, it was absolutely not allowed in their presence, and we would go outside--rain or snow--and smoke (those cigarettes we had hoarded) under the old apple tree because even at twenty-five cents a pack, they didnt come easy.
My stress test was wonderful. I returned to a resting heart rate and blood pressure right on cue, just like a healthy person. The breathing test showed my air exchange was good, and there was very little tissue damage--they were surprised at that one. Yes, quitting now was the thing to do. Dont you always quit while youre ahead? Made sense to me. But there was no cold turkey. I couldnt do that. I did try but then decided I would limit them and stick to all the other rules and tried to put myself in non-smoking situations as much as possible. I discovered I just liked lighting them and having one in my hand. I bought the fake ones to hold. I was now down to three a day. Of course, I switched to the 120s, but it was only three a day; and only when I really, and I mean really, wanted one. My friend Carole, who had seen me through so many things the past ten years, sent me little notes of encouragement and congratulations for the effort. She had given me an owl once which held a little sign that said, Please dont smoke, and I had that facing me at my desk. Danny liked not having it in the house and made his comments. We were going to overcome this thing.
I even managed to attend an Insurance Womens Fun Weekend in Ohio where there were blue rooms and only smoked one pack. I was doing great, for me! I also found that when you didnt stop for a cup of coffee and a cigarette, you could get more done. I was really on a roll now. Not only did I have my old standby, the adrenaline rush, but nervous energy to keep me moving on lifes roller coaster at breakneck speed. Doug started in again with his pleas to slow down.
I cant right now; Ive made all these commitments I cant back out of, no new ones, I promised.
September 19, 1990. The day began at 8:00 a.m. There were piles of folders on my desk, calls to be made regarding my upcoming trip to Indiana where my friend, Jan Kearbey, an insurance woman from Kansas, was flying into Detroit Metro. She and I would drive together to the state convention, and it all had to be coordinated. We finalized our plans, and I was looking forward to some time with this lady who made me laugh, who talked about endorphins and a healthy attitude and whose husband was terminally ill. She managed to practice what shed preached to the other four who roomed together our year as Regional Vice Presidents. I knew I needed something to pep me up. Even Super-woman was feeling tired. I told Doug I wished I could get just a little sick not serious, so I could go to the hospital for a few days and rest. I was afraid I was burning out but couldnt or wouldnt just walk away from it, or admit to anyone else that the work-horse needed a break from the plow.
Trustee meeting that evening at church. The meeting was moving right along, the Pastor standing to my right. I dont remember the exact words, only the feeling I needed to respond to a statement. As I turned my head and looked up at him, my neck snapped, and an immediate pain hit my right temple. Boy, was it a pain, but it would pass. I didnt have time to be sick, no really. Trying to shake off the headache, I wrote notes and alternately rubbed my temple. The meeting over, I didnt stay for the usual visiting but took my cup of coffee and drove home. Boy, my head hurt. I had to get some aspirin and lay down. I was just going to bed.
As I shut the garage door and dropped my briefcase in its usual corner, Doug asked how the meeting went. I dont want to talk about it now. Ive got an awful headache. Im going to bed. Nightgown on, two aspirins downed, I fell into the bed. Doug made a trip up to check on me, put a cool cloth on my head and returned back downstairs to watch the rest of the TV show alone.
When he came up to go to bed himself, Doug tells me I got up. Dizzy, nauseous, and feeling even worse, I suggested to him that he should just cut my head off because the pain was so bad and proceeded to the bathroom where I vomited blood and fell unconscious to the bathroom floor.
Im awake! The room was dimly lit; I was in a hospital bed. Well, wasnt this Wonderful; Id finally snapped! They had me on a psychiatric floor of a hospital. Id gone to Indiana and had a nervous breakdown. Wonderful! Where was Jan, where were the other women? Obviously, Doug had to stay in Michigan and take care of Danny, so he couldnt be here at the hospital in Indiana. But why was I all alone and on the nut floor? I must have really done something!
It didnt occur to me then, or for days, that it was physical illness. I couldnt be sick. I didnt have time. Id seen Doug through lung problems, back surgery, open heart surgery; Danny the past eight years; grandma through eye surgery, stomach surgery, two broken hips, and all the other kids mishaps. I didnt get sick physically. The two surgeries Id had in my life were optional on my part. It couldnt be physical. Id lost my mind; I knew it. They had me on this floor with other crazy people. I faded back into the velvet comfort of darkness.
I was awake again; the room was dim. Noises, people noises, groaning. Oh, the crazies, they were trying to kill me. Im on the psycho floor, and theyre trying to kill me. Im all alone. Where is Jan? Where are my friends? I have friends in Indiana. Everyone is so nice in Indiana. Recalling the childhood trips there to visit relatives, I knew some of the best food in the world was in Indiana, but I didnt want to die there. They were trying to kill me, and I couldnt get out of this bed. They had me tied in. I was even more helpless and so scared. Oh, God, Im scared! I have no control over this situation. Im usually in charge, and now theyre telling me what to do, and theyve tied me in bed. Im so scared! Floating in and out, I have no memory of sunshine for days. I only remember nights. I also have no memory of the respirator that sustained my life as it had done once before for Danny. I dont remember the feeding tubes or the monitors. The one that was inserted directly into my heart that I pulled out when they untied my hands, is only a scar by my collarbone--I dont remember it or wanting to remove it. But those days of intensive care and while on the regular floor are just an accumulation of brief periods of cognition. Once again, as my body produced adrenaline because of fear or anger, I rose high enough in consciousness to form a memory. Only when my body was reacting to the flight response was I able to hold that memory.
My darling husband, who had supported me even when he thought I was wrong, was at my bedside almost round the clock. He had, once again, been thrown back into that ocean of hopelessness and helplessness that you find yourself swimming in as one you love lies near death. He had called 911 and waited that hour--which in reality was 15 minutes--until the paramedics arrived. He, once again, sat in the front seat of an ambulance, racing against time to the hospital Emergency. He sat, alone this time, and waited for news. Knowing in his heart that stress had brought this on, he blamed himself for not putting a stop to it sooner. Stress caused this, and, if I survived, he would never again allow me to live life in that fast lane of achievements, accomplishments, and ego. The world, Insurance Women, Head Injury, or church didnt need me out there trying to make a difference; but he needed me, and they would do without me in the future. And this time, I would not change his mind.
I hadnt lost my mind, only a small portion of it. CVA, Cerebrovascular Accident, a weakened blood vessel in the right frontal lobe had given out. Blood entered the brain and filled the right ventricle. The doctors would later say it stopped bleeding on its own, probably before the ambulance got there; but not knowing what caused it, or if it would happen again, they wanted more answers. Also, given my state of mind--what was left of it--I needed to be watched. Carefully.
In insurance, we call fires friendly and unfriendly. Friendly fires are those that stay within the confines which they were intended. On a cold winter evening, the flames dancing over logs in the fireplace feel warm and friendly. A hostile fire, on the other hand, is that spark that bounces out onto the carpet and flames head directly for your chair.
Blood does the same thing in the brain. When it remains in the arteries and veins, it brings life-giving oxygen to brain cells. When it escapes the confines for which it was intended, it wreaks havoc on the brain cells and the human thought processes. Injury to one area of the brain can cause swelling which can damage even remote areas of this lump of grey matter which makes us, each one of us, unique to the world and in the eyes of God. Mine (brain cells) were raging. They couldnt keep me tied in bed; someone was trying to kill me. I wanted away from all this; I wanted to go home. Please, oh, please, let me go home! On a July day eight years earlier, hadnt I been told to take him home? Let him hear, see, smell familiar things that would be comforting and promote wellness. Hadnt Marilyn said that about Danny? Why werent they taking me home to get well? Didnt anyone care? Was I that bad? And where was Marilyn? Where were my advocates? Hadnt I always been one for Danny, for Doug, for my uncle, my grandfather? Where the hell were mine? I was getting angry now; the fight response caused my old buddy adrenaline to course through my body. Pieces of memory began to become pieces of a puzzle. If they ask me one more time what kind of medicine theyre giving me...Decadron, you dummies, youre giving me Decadron. You put it in that little cup. Dont you know? My God, what kind of people do they have taking care of me if I have to tell them what kind of medicine theyre giving me? And, if they dont quit making me squeeze their fingers. That is just the dumbest thing. Why would a person who had lost her mind have to squeeze fingers? Ill squeeze your finger, and, if you ever untie me, Im out of here. Boy, I thought the DWZ (Denver Womens Zone) of Denver was bad. This place is the pits. Theyre talking loud to me. Im not deaf. Am I deaf? No. Then why are they in my face and talking so loud to me? Then they changed their tactics to moving their lips in an exaggerated fashion. Im not deaf, and I dont read lips either! Get away from me! Im real mad now, and Doug is here. Well, isnt that great.
Finally Doug is at my bedside! Now, hes telling me Im not in Indiana; Im in Ann Arbor. Im where? I dont remember leaving Indiana. The other faces are the same. How come Im now in Michigan?
Where are you, Sue?
Im in Indiana.
No, youre in Ann Arbor.
No, Im in Indiana.
How many hours or days I did this I dont know, but I knew I was in Indiana. Jan and I had been at the State Convention, and I went to Flip City. I was in Indiana where the food was really good, and the cool things--ice cream, jello, milkshakes--felt good on my throat--which hurt. Had I been on a respirator? Why couldnt I remember that? Boy, the food tastes good, but then some of the best cooks in the world were in Indiana. I knew that.
Youre not in Indiana. Youre in the hospital in Ann Arbor. Doug was angry; his voice had that same tone he used on the kids. Were his eyes red? Yes, they were that angry red wed all accused him of. Of course, they didnt really get red, but the blaze of anger from them had always made that a good analogy.
Im not in Ann Arbor. The hospital is in the township anyway. Im in Indiana. Im really mad now. How dare he talk to me as if I were a child. Nice guy I married. Make me stay in this place and then come here and holler at me. Boy, was I lucky and am I mad now.
But the anger kept me awake and kept me thinking. I didnt fade out. Was he trying to tell me something without telling me something? Maybe our insurance wouldnt cover me if I were in Indiana, and he was doing something so it would be covered. Maybe I should say Ann Arbor so the bills would be paid. Doug loved me; I knew that. Never in 20 years had I ever had to question the love that he gave so unconditionally. I was an insurance person; he expected me to get the message. Oh, yeah! I got it!
Where are you, Sue?
Shes coming around, the nurse said.
They liked the answer. They were smiling. So was I--inside. I knew I was in Indiana. I had fooled my captors. I was well enough; they were transferring me to Rehab. I was on my way, one step closer to going home.
In the safety of the rehab bed, I remembered the other hospital rooms in tiny confetti-like images. A huge man was holding me in his arms over a hospital bed. His voice so deep and assuring. He said, Dont worry; Ive got you. I wont let anything happen to you. For the first time, I felt safe. I remembered that experience as being my moment of safety in that sea of fear raging around me. I felt secure for that period of time, while someone else in the same situation may have been terrified (of being lifted and suspended in the air).
I remembered another hospital room where I lay trembling from fear; they were trying to kill me. I knew Id never get out of the hospital alive. A nurse named Kristin (Ill never forget her name; I even remember telling her Id never forget her name because my best little friend in the world was an eight-year-old little girl from church named Kristin, and she and I were building a doll house, so Id always remember her) knelt at my bedside and held my trembling body while they called for Doug to come back to the hospital. He came (I dont remember that), but Kristin kept me safe.
I remember another hospital room where they got me out of bed, raced me down the hallway and put me in a shower. It was early in the morning. I didnt shower in the morning; I didnt want to do this. And then Im wet all over, and its cold. Im so cold; Im shivering. Let me out of here; I didnt want a shower, and now Im cold. Let me out of here. Water hitting me in the face, the nurse sprayed me in the face. Why would she do that? I was just cold. At the time it occurred, it startled and scared me. Better behave. Now that I felt safe, anger boiled near the surface. How dare she! Tell me on her shift Id take a shower when she decided. Ill have Doug intercede and tell them no morning showers. How dare she!
Looking back, I dont remember what precipitated the face spraying. I dont remember being combative, but maybe I was. Maybe she thought it was one way to bring the situation under control. It sure did, but there had to have been a better way rather than instill fear and panic and now, anger.
I remember being tied in bed, tugging against the restraints. I remember climbing out of bed one time, somehow toppling all the IV poles. I remember the nurse who was very upset about that and my rising ire at being chided as though I were a child. Didnt these people know that I was an adult woman? I was a business woman. I wasnt a dummy; I wasnt deaf; I couldnt read lips; and I was certainly not used to being told what to do every moment.
Now Im in Rehab where its hard to walk. They shuffle me around in a wheelchair and expect me to remember how to get to all those other rooms when Im not doing it myself, and theyre treating me like I have brain damage. If Im in Ann Arbor, wheres Marilyn? Marilyn can help me. She talks their language. Im saying all the things, but they are not listening to me. Nobody listen to me.
Im in front of the mirror. There are marks that lay in a design from collarbone to collarbone that look like a necklace. Did they have IVs in my neck? Did they have me hooked up to monitors through my neck? Was I like Danny; did I have brain damage? Why couldnt I remember? The last clear memory was being at the church, pain in my head. I came home and went to bed. Then I was in Indiana. I remember the hospital and then the other hospitals before I ended up back in Ann Arbor rehab. What happened to me? Why dont I know whats going on? Im always in control, always in charge. Arent I the one who chairs the committees, runs the office, gets things done? Why wont they listen to me now?
I remembered tests; I remember them sending me down this tunnel; I remember going berserk when they tried one time to strap my head down--cant stand confining places--scared, out of control, panicked.
Solace in food. Food is good, and they bring me these milkshakes. Five a day. They feel so cool on my throat. Physical therapy now becomes the focus of my anger.
I had tried in vain to intimidate the head of the rehab program, whose innovative ideas and his caring for those lost in the nether world of brain damage guided him to establish a much respected TBI rehab unit. He came in for a visit. I threatened him with bodily harm if he didnt let me go home. He left the room, and I went to therapy.
Walking between parallel bars--now, isnt this stupid? I can walk. My God, Im not a baby! See, I can walk. I bump into the sides. This wouldnt happen if youd give me the 3-inch heels Ive worn for 30 years; there wouldnt be a problem. Give them to me; Ill show you!
Find your way out of P.T., Sue. How do you get back to your room?
How should I know? You guys brought me here. I didnt check the door out when I came through it. Its your problem.
So this is what its like when your brain snaps. Now, theyre throwing a term around, CVA. What the hell is a CVA? Someone else said stroke. I had a stroke? No, Ive never been sick. I always take care of people. Aneurysm. Now theres a word. Did I have one? No, people died from those; they dont live. Ive known two people who died, and Im alive. Arent I alive? Yes, Im alive. Im in a hospital rehab unit. I have two doctors, The Wonderful Dr. Wardner and that other one, whats his name, oh, yes, Dr. I want to be God Thomas. Hes the one who wants to shoot me down that drainage tile (MRI) again. No way. No more of those.
I want to see my grandbabies. Where are they? I remember C.J. was here. No, not here, other hospital. His mom snuck him into my room; he climbed into bed with me, and I cuddled him. He kept saying, I love you, Nana and fed me chocolate candy. He wanted me to get better. Im getting better. Where are the rest of them? I want to go home! I have to go home!
The art of medicine consists of amusing the patient while nature cures the disease.