December 2022 Ed Russell

Love makes the world go around! We all do things for the people we love that we might not even bother with otherwise. I loved my late wife very much. At her suggestion (insistence) when I turned 50 in 2004, I went and had a “full physical.” It showed that, despite many years of neglect and abuse, I was surprisingly healthy except for a couple of long-term issues, including ringing in my ears. Tinnitus. Comes with age. Too many years of playing music on stage in front of loud amps. Too many hours without ear protection on lawnmowers or whining power tools. But I promised I would look into it and got a referral for an ear, nose and throat specialist, who did an MRI.

As expected, there was no physical reason for the ringing other than age and there was no known treatment. The bad news was a brain tumor (unexpected!).  Coincidentally or not, my daughter, then 23, had survived two brain tumors, one in 1989 at age eight, and one in 2001 at age 20, so we were already familiar with the docs at Brigham and Women’s Hospital in Boston who dealt with these things. What are the odds?!

After digesting this turn of events at home and at work, I had surgery in Boston to remove the tumor. But things did not go as planned. For three days I was in an unforgettable and vivid morphine-induced coma. This brilliant fantasy world was built around an outdoor hospital in Washington County, Maine and simultaneously in Ethiopia. With Ethiopian nurses, doctors, my long-lost Ethiopian family, nonstop inflight movies and adventures described in the song below.  

I woke up to find a much different world. I had lost the use of my right side, head to toe and everything in between, including the ability to swallow, which I learned requires muscles on both sides of the throat. One of the many things I was to learn about what we all take for granted. I would now have to “relearn” swallowing, along with talking so that I could be understood. I also had to relearn standing, walking, using eating utensils without dropping them, using a pencil, etc. The list seemed endless, matching the milestones for development of a newborn child.

In addition, my brain felt tortured and was “just not working right,” to say the least. I believed the clock on the wall in my hospital room was going backwards and insisted maintenance be called to fix it. And that my daughter who was in England had been abducted by terrorists, but that if I could just stay awake long enough and watch enough television, I would find clues that would allow her to start over and avoid the whole thing. Former football star, Jim Brown, now star of the movie “100 Rifles” on the hospital TV set, was there in the hospital and on his way to help me, starting with that clock and then on to the IRA gang holding my daughter. Little things in themselves but they added up to living in a scary and crazy world that my wife, family and nurses could not seem to understand or help me with.

I learned the words “lack of impulse control” and “frontal lobe damage” in connection with my insistence on pulling out the tube down my throat through which I was being fed until I could pass the fluoroscope “swallow test” (honest). To protect the tubes, my hands were tied to the bed rails. My feet also got restrained after I figured out how to pull the tube out with my toes. Not a restful rehabilitation for a boy with an unquiet mind. As a problem patient I was assigned my own personal “One on One” to protect me from myself.

Being male in our society brings certain expectations. A big one is that we believe we are only as good as what we can do or earn. We overidentify with our ability to do things physically and to make money to support our families. Before the tumor I was an apparently able-bodied attorney with an apparently accurate grip on a reality shared by those around me. I had better than average memory and self-control when necessary. Maybe not always the smartest guy in the room, but close. After the tumor I was a guy tied to his bed like a delusional fool, seeing and hearing things nobody else did, and saying whatever nonsense came into my head to entertain me, my poor roommate and the nurses. Bozo the clown of the neurosurgery post-op ward.

On top of that, I could not work or do anything productive to help my wife and three kids, to protect them from this cruel world we live in.  Unable to even stand or walk, in a wheelchair, unable to speak clearly, or eat on my own. Tied up, I couldn’t even protect myself. Totally at the mercy of others and dependent on them all. We are taught early on: “A man who cannot work is no man at all.”  Bozo the weak and worthless.

But I’d show ‘em all, by Jesus! I just got me a new job. My new job was to recover and get back to the top of the mountain. Exercise my hand by playing the flute. Over and over. My poor roommate! Walk those halls night (long nights) and day (long days too), falling on those unforgiving hard hospital hall floors, hauling on the wall railings and molding just to get back up and try again. Trying to control what I said, speaking slowly in order to be understood and not verbalizing every brilliant thought that popped into my damaged mind. Trying to SLOW DOWN the crazy pace inside my head.

Speaking of damaged heads, nothing says “Look at me, Ladies and Gentlemen!” like a scary six-inch surgical scalp scar on the half they had to shave. So, we shaved off the other half to even it up. Bozo the Bald.

The days went by, and I finally passed the swallow test in order to be able to eat solid food without choking myself. Nonstop TV watching with food commercials for twenty-one days without solid food can build a wicked appetite. I planned in detail my first non-hospital outside food meal. A whole bucket of KFC chicken. Extra crispy. Along with eating, came a transfer from the surgical post-op ward in Boston to rehabilitation in Portland, Maine. God Bless Solid Food and the Great State of Maine!

I grew up a Bangor Boy. We would always remind out of state visitors that “Maine is a big state. It doesn’t end at LL Bean in Freeport. To go from Kittery to Fort Kent is Long Hard Trip!” I can tell you that it’s another long hard trip from wheelchair to walker, walker to cane, and cane to hands-free ambulation without falling on your face. Something I had always taken for granted and never appreciated until I had to work for it.

As it happens with some things when you keep working at them, the rehab challenges slowly got easier. Everything got easier. I could do this rehab job! If they asked for ten push ups I’d do twelve. Every time. Physical Therapy. Occupational Therapy. Cognitive Therapy, Integrative Therapy. Probably should have thrown in Shock Therapy. And as it got easier things slowly got better. And I thought “I’m better.”  Better than I was even before the tumor. When asked how I was doing, I would reflexively say, “I’m 150 % recovered, even better than I was before my tune up.”

Originally it was said as a joke, but over the years I have come to see that I really am better than before. That extra 50% made me a better person. More humble, with a whole new appreciation for the lives of those with permanent disabilities, still in wheelchairs or still living with a tortured brain, with no prospect of escape from either situation.  Those whose only choice is to accept their new reality and make the best of it, trying to minimize the damage to their loved ones.

Speaking of loved ones, I also got tough life lessons on just how much love can do and who your real friends are. Again, something I had not fully appreciated. My long-suffering family and work partners deserve a lot of credit for my recovery. Even when I could walk and talk again my brain took a long time to settle down and they all had to put up with a lot of my nonsense.  I could not have made it without them. Although I am sure it must have been in their minds, there was never a suggestion out loud that I would not come back completely.  Without them I might still be in that wheelchair, with a very different story to live.

Every brain injury patient needs someone to love them and believe in them. Patiently and without judgment. My wife Carolyn did that for me after the tumor. Fate later gave me an opportunity to partially repay that love. She was diagnosed with Alzheimer’s disease, which took her life in 2020 after five years of slowly losing her. More tough life lessons. Actually, Alzheimer’s could be the worst kind of acquired brain injury, its viciousness relieved only by the patient not being aware of how sad and hopeless the situation is.  Brain Injury survivors understand we must appreciate and preserve whatever cognitive abilities we are lucky enough to retain. There is no medical justice and no guarantees. Love makes the world go around!

Everybody’s brain injury is unique, but the above story should show the similar problems we all share and the patience it takes to deal with our new reality. Below is a song I wrote about my three-day induced coma in 2004, about all us men (and women) who think we are Superman, with no limits, going faster and faster, piling on more and more. We would all do better to simply appreciate what we have.

 

SLOW DOWN SUPERMAN

I’ll tell you about a trip I took, I hope you never take.

So don’t put your head in a microwave and turn that thing on bake.

Found a farm in Africa in the heart of Downeast Maine.

Went to Ethiopia, but it was all inside my brain.

Found a better life there in the movies in my head

Didn’t have to go to the picture show, strapped down in that bed.

Had no problem knowing which world I would choose

This one’s got the mysteries but that one’s got the clues.

 

Slow down, Superman, think of where you’re going!

Slow Down, Mr. Cool, you might be there.

Slow down Superman, think of where you’re going!

If you move too fast, you get nowhere.

 

We think we’re men of steel, boys as we rush and run around

But I got so bored in that cellblock ward I broke the speed of sound.

Broke the speed of sound.

 I don’t spend no cash on Mideast gas to get from here to there.

I can go to Boston, then get lost and still have time to spare.

If you ask me why I do it, I’ll tell you “Just because”

You might as well ask Dorothy why she went to Oz.

 

We think we’re in a hurry, boys, we think we’re running late

Let’s take a tip from this little trip. Slow Down Big Shot and wait!

Slow Down Big Shot and wait!

 

Slow down Superman, think of where you’re going!

Slow Down, Mr. Cool, you might be there

Slow down Superman, think of where you’re going!

If you move too fast you get nowhere.