Country singer, Sturgill Simpson, in a recent interview, talked about “All those things you step out on a ledge to get a better view of”. On Halloween of 2008, I got a good view of the abyss. Halloween 2008 began with bright promise. The weather was unusually good for that time of year. It was a Friday. I had just started my dream job. I had managed to make a 180 with my sales career to work in a field I had only dreamt of. Little did I know I was a walking time bomb.
A congenital defect in my brain would soon burst and change everything. I had what is commonly called an AVM or arteriovenous malformation. Normally, arteries carry blood containing oxygen from the heart to the brain, and veins carry blood with less oxygen away from the brain and back to the heart. When an AVM forms, a spaghetti-like tangle of blood vessels bypasses normal brain tissue and diverts blood from the arteries to the veins. These blood vessels are weak and dilate over time. They may, if undiscovered and untreated, eventually burst under high pressure. Little did I know that was what was about to happen to me.
It’s true. I was doing push ups when it burst. Most everyone who knows me is aware of that. What I’ve never, to this day, told anyone is that the reason I was pushing extra hard that morning was I wanted to be “pumped” for my first appointment that day. Ironically, my dad used to say, “It’s a long fall from a high horse.” I always did push ups until failure, but that day I was pushing extra hard. I was on my last set of push ups when I failed. This time it was different. My whole right side went suddenly limp and fell hard on my right. I was in my home office. I was able to get up, walk over to and sit in my office chair.
If a feeling can be described as breaking crystal, then that’s how it felt just after I sat down. My whole right side slowly went limp. I slid out of the chair and onto the floor. I tried to cry out. My wife, Susan, was upstairs taking a nap after taking our sons to school. I couldn’t do much more than grunt. I knew the word “HELP”, but I couldn’t get it out or even remember how to move my tongue to say it.
I had worked from home all our married life. Susan and I would come and go all day. We’d have a general idea of each other’s schedule, but Susan could easily come downstairs and leave without knowing I was in deep trouble. I knew I had to get out to the foyer so she couldn’t leave without finding me.
For me, looking back on it, it’s hilarious. Others are horrified all the time to hear I think about it like that. I had to swim on my belly to reach my goal. Since I was paralyzed on the right and could only push/pull with my left, it was very difficult to go straight. I went round and round in circles. I got stuck in my office doorway for a long time. I went back and forth; forth and back until I got through. Finally, after I was free, I had to contend with an area rug on a tile floor. Eventually, I made it to the foyer where I more or less collapsed from exhaustion. Susan found me and called 911.
I can’t remember for sure, but it seems like Monday was the first day I was fully conscious and aware of my surroundings. The nurse came in. She asked did I know what day of the week it was. I could only grunt. She asked if I knew where I was. I could only grunt. Then she asked if I knew who the President was. I could only grunt. I think she could tell I was agitated because she asked no more questions, left, and sent for a CNA to get my vitals.
I tried talking to myself and couldn’t. I started wondering if life was over for me. I could deal with being paralyzed. But this not talking thing scared me. I’m in sales. How in the world can I do that without talking? Things would never be the same. What I did not know then was that the change would be for the better.
Just as I was beginning to tear up, in walked an angel. She pulled a chair up close, sat down, and said, “Mark, I can tell by your eyes you know what’s going on around you. Let’s get you talking again. Just read my lips and do your best to follow along.”
It wasn’t hard to read her lips because, to me, she was the most beautiful person in the world. I couldn’t take my eyes off her lips. Whoever and wherever you are out there. (Debbie?) You have my undying gratitude. To this day, I have an admiration for therapists in general and speech therapists in particular.
By the end of the week, she had me talking again. Though as a result of aphasia you never knew what might come out of my mouth. My sons got a kick out of me. I was like a baby saying things, sometimes very inappropriate, just because I could. After learning to speak again I got stubborn. I just did not accept the notion I wouldn’t get back to normal.
My whole right side was paralyzed, but I didn’t fully grasp that fact until they brought a board to transfer me to a wheelchair. It took an enormous effort to get up and out of bed, sliding across a board and into a wheelchair with a half table for my arm. I sat in that chair for hours. Even with a thick memory foam pad, my butt hurt badly. It was frustrating that I couldn’t shift around in my seat. I would have lapsed into a new, deeper depression if not for Crazy Mike, the physical therapist.
Crazy Mike was trained in and practiced Neurodevelopmental Treatment (NDT). I didn’t know then he was one of the few in the hospital system who practiced it. Most of the others, while quite good, didn’t believe in it.
I’ll try to explain NDT. I may not have it exactly correct, but here goes. NDT involves the therapist studying a stroke patient who, seemingly paralyzed, can still control some muscles. The therapist substitutes himself to do the work of the muscles that wouldn’t fire while, at the same time, the patient fires the muscles that will. The idea is that the brain is plastic and will seek to make new connections where old ones have failed.
Mike may have been crazy, but I had my first true glimmer of hope walking, with Mike’s help of course, in the basement gym at the hospital. I was a sight with my bare ass hanging out of my gown (Mike called upstairs for a robe). My right arm was taped to a hospital bedside table with rollers; adjusted as high as possible. We went round and around in circles. I didn’t want to stop, but the knee in my good leg started buckling and we had to take a rest.
Fast forward through a pulmonary embolism, a craniotomy to fix my AVM, and a month of in-patient at a orthopedic rehabilitation hospital, but I don’t think I truly began my recovery until I came to the realization that I shouldn’t think about how I was before the blowout. I had to concentrate on how far I’d come since. The old Mark did die on Halloween 2008. The new Mark was just beginning to be formed. I fully bought into working as hard as possible, then doing some more.
I soon realized one of the gifts of my stroke is gaining or regaining a true sense of sentimentality. When the sentimentality first hit, I was a mess. I cried at puppy food commercials. I began to appreciate the emotion once I was better able to control it.
When you get knocked down by an illness that keeps you in the hospital for two months, you soon learn who your true friends are. They are the ones who keep coming back long after the new wears off. They travel long distances to sit by your side or even spend the night with you in ICU.
I went back to work before I was ready. My employer was only going to hold my job for two months and, since I was brand new, they weren’t paying me. Once, I was on my way back home from working at company headquarters north of Sacramento. I’d been dropped off at the Sacramento airport because I still wasn’t driving. I was way early because my ride had a meeting in San Francisco, three hours on down the line. I was eating breakfast, feeling a bit sorry for myself when, wham, a porter slams a man in a wheelchair into my table. The man was embarrassed and asked it he could join me. I said, “Sure. Please do.” We shared our stories. He had MS. He could walk to fetch his breakfast, but needed the porter and wheelchair to travel through the airport. I’ll never forget. At the end of my story I said, “The good Lord must not be done with me, yet.” The man stopped me. He looked me in the eyes and said, “Did you ever think He might have saved you, just for you?”
I thought, at that time and since, “What a responsibility? How can I pay that forward?” I think of that encounter often. Now, several years later, I have a sweet dog named Lucy who I take on pet therapy visits to the orthopedic rehabilitation hospital.
When most people hear stroke, they stop listening. That’s a problem. They assume the person is old and/or unhealthy; unfit for anything else and a burden forever. Nothing could be further from the truth. I’ve never gotten a handicap license plate because I refuse to think of myself as handicapped. Plus, many of those spaces are always taken by yahoos anyway. When you meet someone who has had a stroke; take a moment to stop and listen to their story. Then, as you walk away understand the strength of character it took for them to survive and thrive afterward.
If you’ve had a stroke, do NOT let anyone tell you that you have just 12-18 months to recover and that after that arbitrary time period you be as good as you’re going to get. It’s true that a hockey stick like graph of improvement can, with hard work, happen during those 12-18 months. However, if you continue to work hard, you’ll experience incremental improvements much later on. That has been my experience and can be yours, too, it you are willing to work for it. When I left outpatient rehab, I was still pretty weak. I had to use a lift to get into the Meyer Center pool. Now, I swim laps; with fins. Three years after my stroke, my right arm was weak. I could barely lift a gallon jug of milk over my head. I started lifting weights and now I’m reasonably fit. My confidence was shot until this past year, talking with a friend who had had a mild stroke expressed that he had the same experience. This exercise of writing my story has been good for me. It will be 8 years this Halloween since the “blowout”. I know the improvements will only stop if I sit down and stop working for them.
I fell recently at the gym and some kind gentleman tried to help me up. I was too disgusted with myself to accept it. He walked away, shaking his head, saying, “We ALL need help once in awhile”. It’s too bad I couldn’t catch him to say, “I’m sorry. Thanks for reminding me. You’re right.”
If your loved one or even a meh one has had a stroke, go get them the book My Stroke of Insight by Jill Bolte Taylor, PhD. At the very least go to YouTube at https://www.youtube.com/watch?v=UyyjU8fzEYU. Take a laptop or iPad; whatever you have to show them her talk at a TED Conference. As of this writing, it has over 3.7 million views.
Here’s a part of the description of her book on Amazon. On December 10, 1996, Jill Bolte Taylor, a thirty-seven- year-old Harvard-trained brain scientist experienced a massive stroke in the left hemisphere of her brain. As she observed her mind deteriorate to the point that she could not walk, talk, read, write, or recall any of her life-all within four hours-Taylor alternated between the euphoria of the intuitive and kinesthetic right brain, in which she felt a sense of complete well-being and peace, and the logical, sequential left brain, which recognized she was having a stroke and enabled her to seek help before she was completely lost. It would take her eight years to fully recover. This book was very important in my recovery. It will provide insight to both patient and caregiver.
I have a lot of thanking to do. I thank God for both the experience and strength to get through it. I’d like to thank my sons, Paul and Cory, and now former wife, Susan. I don’t think anyone knows how much my illness affected you and just how important you are to my continued recovery. To my mom; there are no words to express the gratitude I have for all you’ve done and continue to do. To all my friends, both old and new; in my mind’s eye I’m bowing in your general direction. I know I can never repay you for your kindness and encouragement. To all my doctors, nurses, therapists and staff; all I can say is thank you from the very bottom of my heart. You are doing God’s work here on earth.