I am emphatic about this subject, because I personally went through a similar situation, i.e., having an immediate family member suffer catastrophic brain damage.
Now this is *very * long (far outside soundbyte length), so if you are uninterested, just scroll or go on to another message. Don’t blame me for posting it, when you don’t have to read it.
On October 17, 1993 at about 5pm, I came home to find a message on my answering machine that my oldest brother (38 at the time) was in the emergency room with high blood pressure. This didn’t surprise me because my mother’s side of the family had a history of hypertension. On my way to the hospital, I was thinking they would probably give him an injection and discharge him soon. But what I found when I got there was them admitting him and moving him to ICU.
That was the first time I ever remember hearing the terms “malignant hypertension” and “tachycardia.” His blood pressure was 260/175 when he arrived at the hospital. His heart rate was 140. My father was there and said that they had put a needle directly into his heart to slow it down. They had managed to bring his blood pressure down, and were moving him to ICU.
At about 11 pm, an endocrinologist came out to the ICU waiting room to talk to us. I expected a heart doctor. The endocrinologist explained that blood pressure that high could not be explained by “normal” causes of hypertension (e.g., cardiovascular disease). He suspected a pheochromocytoma, which is a tumor that grows in the adrenal glands. That night and early morning, we spent 10 minutes every 4 hours visiting my brother who seemed to be feeling much better. By the 8 am visit he was sleeping.
The following day, a CT scan confirmed a mass in the adrenal gland above the left kidney. Armed with all this information, I searched medical texts for pheochromocytoma.
I found that in most cases it was benign. I ripped out the page and brought it to my brother – this was good news indeed.
The endocrinologist put my brother on a regiment of drugs to counteract the hormonal chaos the tumor in the adrenal gland was producing. It took a week for them to stabilize him enough to perform the surgery to remove the tumor. During this week, I slept in the ICU waiting room and visited my brother for 10 minutes every 4 hours.
The Sunday night before the surgery, my girlfriend stayed with me in the ICU waiting room. I remember asking her what I was going to do if the tumor was cancer or if he had problems in the surgery. “You’ll handle it.” Simple enough, I guess, but up to that point everything in my life had worked out. I had family members sick, (in fact another of my brothers almost died when he was 16) but it always worked out. I saw old people die (grandpas and grandmas, old uncles) but never someone young and close to me. A girl in my second grade class died after falling off a rope, but I didn’t really know her. My girlfriend was surer than I, that I could “handle it.”
They told us the surgery was going to take about 4- 5 hours, but the surgeon would come out during the middle of it, and talk to us to let us know how things were going. There was also a phone set up, where a nurse would call every now and then and give us updates. At first the calls were frequent,. She told us they had begun the surgery and had opened the abdominal cavity. Then the calls got less frequent. And then it was 2 hours before the surgeon came out to talk to us. There were two questions I remember, “how’s he doing?” and ,”does it look like cancer?” The only answer I remember is “yes” and then everything getting almost like slow motion.
I didn’t even stay for the end of the surgery. I had to go home. When I got to my truck, I found a tire was flat. The spare was on some thing underneath you had to screw down and it was stuck. I remember sitting in the parking lot crying like a baby and crying the whole time I changed that tire. I went home and slept for 12 hours. No one called.
When I went up to the hospital the next day, I almost expected to see someone dieing of cancer – thin, draw, and sunken eyes. But he still looked my brother. He was groggy, but he was talking, even joking. The banter was careful. “You sailed through that,” or “you’ve just got to focus on getting better.” There was no mention of the results of the biopsy everyone was waiting on. You think they would have figured a way to get them back sooner than 3 days. But it takes 3 days. So those 3 days were broken into 10 minute visits every 4 hours.
It was Friday when we got the biopsy results. I remember it was also my birthday. Oct 29, 1993. I was 35, and the biopsy showed no cancer- the tumor was benign. It was large and had wrapped up on some organs (the now absent spleen, the now ½ pancreas, the now absent left kidney), but the surgeon’s first impression wasn’t right. The tumor was benign. I do remember a lot of backslapping, laughing, rejoicing, and going out and getting smashed that night. It was Friday, my birthday, and my brother didn’t have cancer. I remember telling a bartender in a drunken stupor, “Jesus does exist.”
On Saturday, they moved my brother out of ICU into a regular room. My hangover and I went to see him, and he was kidding me as I slunk in a chair reading the paper in his room. And then he started to get on me again, “Shawn, I don’t think there anything wrong with partying once in awhile, but I’m afraid you’re going to get killed in one of those bars late at night. If someone comes in to rob the place, they won’t even find you all till the next morning. You need to be careful.” The pall of the hangover had me agreeing and swearing off booze. Then we started guessing about how many days before he would be discharged.
On Sunday night, my father called me at home and told me my brother was talking out of his head. They were having trouble getting a doctor, but a nurse said his blood pressure was high again, that it might be residual tumor. What the hell is “residual tumor?” When I got there, I found him alert but using the wrong words for things he was talking about. He’s be pointing at a glass and calling it a comb. Or he’d ask about a football game and ask something like “who won the horn?” It was almost like watching a computer crash. It was Halloween night and they performed an emergency CT scan. Since it was Halloween night, orderlies and help were in short supply. My younger brother and I had to lift him onto the table for the CT scan. There was no one else to do it.
The results were not good and the neurologist’s face showed it. It was a massive bleed on the left side of the brain. It was all white.
One of the hardest things I’ve ever had to do in my life is explain to my mother what had just happened. I don’t think I ever remember her looking as small as she looked when I was walking toward her. Her eyes were pleading for news. I don’t know why, but I told her to walk outside with me. The whole time we’re walking she’s just getting more anxious, but all I can say is “please come outside.” She just looked so small, and she makes fists and asks (or curses) “when is this nightmare going to end!”
In my 46 years of life, I have never been sicker than when I plopped down in that waiting room of the ICU that Halloween night. The recliners, the tile, the wallpaper, the candy machines, every part of it made me want to throw up. I had spent over a week in that waiting room, and all of a sudden it hit me how absolutely sickening of a place it was. I’d go to the bathroom and throw up. I come back to the waiting room, it would make me sick, and back I’d go to throw up. The place was absolutely hideous. People sprawled out on recliners, some dinky television with the weather channel, half empty vending machines, all of it was disgusting. And yet, back again, when we should be going home.
During the night, I switched from a groveling, puking slug, to take charge “action hero”. Why? I have no idea. But it just seemed things were going too slow. I made a nuisance of myself and finally was face to face with the staff neurologist. And I asked him flat out, why my brother sitting in a bed with his brain bleeding instead of being in an operating room to stop it. I’ll never forget his answer, “Because you don’t get the best help in the middle of the night, especially a holiday night.” How do you answer or protest that?
By 9am that Monday morning, my brother had stopped breathing and was rushed to surgery being ventilated. The neurosurgeon rushed by us, stating,” I can’t talk now, but you have to understand, he is not going to be the same, he is going to have deficits. I am trying to save his life.”
That he did. But my brother never spoke again. He never walked again. He never ate through his mouth again. He never played his guitar again. He never played the piano again. He never wrote another essay. He never cautioned me again. He never argued religion till the sun came up, again. But he did smile again. I’m sure anyone who didn’t know him would mistake it for some involuntary muscle twitch. But I know different.
It was pretty dismal day, and I had just taken him outside. It was a few days after Christmas, and it was just too cold out there. Back in his room, at the rehab hospital, he was gazing at a hand drawn Christmas card. “Nicholas drew that for you.” He smiled wide. Nicholas is my youngest brother’s youngest son, and was always a favorite of Hank.
Hank died from septemia on January 4, 1994. He was 38, and I still miss him.
This story is not to be a drama queen. I know everyone suffers bad things ( this story is my first bad thing). But during the months my brother could not speak or respond, he would show glimpses of awareness. I know 10,000 doctors will say its involuntary. But I know better and was better able to see what was him and what was a twitch.
So yea, I am a fanatic about this.
