Body
Truth be told, I wish we could meet under different circumstances. Traumatic events are not supposed to happen, but they do. Once upon a time (29 years ago) I was involved in a car accident, and I bruised the carotid artery in the back of my neck. The blood clot made its way to my brain, and I sustained a stroke which paralyzed my entire left side. I survived and I understand what it means to recover from a traumatic brain injury. So what are trauma and stroke like? You won’t find it on the map, but it is in the state of Overwhelm. It’s one of those places where you wake up and you simply find yourself there. The main drag through town is a one way road called Survival. Most of the streets are one way. GPS doesn’t work so it’s very easy to get turned around. If you look to the right, you will see a bridge called Recovery. It’s not much of a bridge. In fact, it’s full of potholes, and it has unexpected twists and turns, but it can get you over the River of Despair. At some point Survival will bring you to various crossroads. Be careful, you will come across roads with names like Anger, Depression, Determination, Hopelessness, Laughter and Loss; try to stay the course. As you continue on, kitty corner to Loss and on the edge of Despair is an unmarked gravel road, take it. It is called Perseverance. Go 30 miles or so and look for a 7/11 store because to the left of it is a road called Hope. Hold on, this is absurd. It was all I could do to find my own way to recovery and the truth of the matter is that I can’t find the way for others. If Hope is found by hanging a left at the 7/11, then I’ll treat everybody to a giant Slurpee. Unfortunately, trauma and stroke will take you down roads that you don’t want to go down. No one knows how their story will play out and no one has the answers to the questions that get asked like; Why did this happen? Will I ever walk again? What will my life be like? Will I overcome this? What if...? So, here we are. Too many questions, too few answers and a boat load of fear. To follow is my story of survival, loss and understanding.
My story begins in June of 1983 when I awoke in the ICU to discover that my whole left side was paralyzed. At age 23 I was told that I might not walk again. By the middle of June I was moved into rehab. It would be the first time since the accident where I was left alone. On my first night in rehab I must have been thinking about Dr. Seuss and the Grinch because I got a wonderful awful idea. On an impulse I decided to go for a walk, I suppose that I was off to get a Big Mac. I slipped down the side bars of the bed and instead of standing, I fell to the floor. I had no clue that my balance and equilibrium were shot. (In my mind I could still walk). It’s a helpless and scary feeling to lie on a hospital floor and come face to face with a new reality. I don’t recall lying there counting ceiling tiles, instead, I left my thoughts and fears on that hospital floor and decided that it was time to take action. Overwhelmed, survival mode kicked in. I don’t know how long it took or how I did it, but I managed to haul myself up the metal frame of the bed and plopped back in bed. Like I said, it was a wonderful awful idea. On the one hand it was wonderful to discover that gravity could get me out of bed and that I could scale Mt. Bedlam. On the other hand, it was awful to discover that my brain was whacked out and that I had real physical challenges. What a way to learn that my body was broken! It would take me a good year to overcome my physical challenges, five years to grieve and accept my losses and ten years to understand why this happened. The rehab center would never learn about my quality time spent on the floor and I wasn’t about to share.
My second day in rehab I was introduced to my roommate Steve. Steve had been involved in a motorcycle accident and had major memory and cognitive issues. He started calling me Sam Sapperski. He would yell out Sam, Sam Sapperski, when he saw me coming. The truth is I liked him because he accepted me. Everything was upside down for me anyway. Who knew? Maybe I really was Sam Sapperski. I had an altered sense of self. Looking in the mirror only served to remind me that I was no longer the man I used to be, but I could be Sam for him. He made me laugh which helped me find the funny in a sad and upside down kind of place. Did you know that there are some real broken and messed up people in rehab? It’s true, we all had issues. I couldn’t help but notice other people’s challenges and I saw people far worse off than I. Unfortunately, I could make better sense of their challenges then I could my own.
I don’t ever remember myself being impulsive before my stroke but something changed when I sustained the stroke. Unable to process what had happened to me and feeling overwhelmed, I went into survivor mode. I often responded with impulsive and rash actions. The truth was my judgment was impaired, but I had this will to survive and live again. Allow me to share. Probably within the first few days at Rehab, I discovered that I could propel my wheel chair. All those years spent watching the Flintstones would finally pay off. Like a 16 year old who just got his wheels. I did a Fred Flintstone and took off. The wheel chair races had begun. Mobility meant independence. As I sped down the halls, the staff came running because I was a danger to myself and others. I didn’t care because I was alive, kind of like a dog who sticks his head out of the window of a moving car. On another occasion they took me outside to enjoy the sun and parked me next to a fountain. I felt the need to cool off so you guessed it I climbed into the fountain. The next thing I knew people came running. Code red, code red, “crazed patient in the fountain!” They actually thought I would drown. The water was only one foot deep so I was treading water with my behind. There is something to be said for sitting in a fountain, it’s a great place to cool off and laugh. They couldn’t seem to understand that acting impulsively was simply my awkward way of surviving and maintaining my sanity. (I must confess that my dark side enjoyed messing with them). I became more mindful of my limitations with time but to this day my perceptions and judgment are still skewed. My wife will say as much. She knows that there are times when I still feel the need, the need for speed. I wouldn’t learn to curb my impulsiveness until I realized that I could really hurt myself. Six months after I had left the Rehab Center, I was invited to go skiing. Of course I said yes. People, don’t go skiing if you just had a stroke! My balance was off, (still is) and yet I thought I could ski. It’s okay to laugh. I know that my elevator doesn’t always find its way to the top floor. (Having a stroke or traumatic brain injury is not funny, but it’s my excuse for explaining stupid). I felt and probably looked like one of those cartoon characters skiing down a hill out of control. Fortunately for me I didn’t hurt myself, but it scared me enough to realize that I needed to think first before acting. It was also a good reminder to connect with people who have expertise in this area to help me ease back to activities in a safe way.
When the doctors told me at the beginning of rehab that I might never walk again something snapped, and I became very angry. I was 23 years old, and I wasn’t about to let anyone tell me what my life would be like. I was a handful, feisty and ornery and I could still give the naysayers the finger with my good hand. I used my anger to recover and I was out to prove them wrong. I am here to say that, any motivation to recover is a good thing. I brought this attitude with me to rehab, and it served me well. My therapy consisted of physical and occupational therapy. Rehab is tedious and boring. There are many ups and many downs. Progress and hope is found by celebrating little victories like standing up, taking a step, or wiggling a finger. I found hope through determination and perseverance. Rehab PT would get me standing and walking within a month. The only downer was that my arm was not responding. I remained hopeful and determined. The main thing I remember about rehab OT was the range of motion exercises and the frustration I felt with my arm. One day I played a trick on my therapist. I pretended that my good arm was the paralyzed one. (I stuck the busted one under the table). When all of a sudden my arm started to work, I shouted Praise God, it’s a miracle, I’m cured! She bought it. The expression on her face was priceless especially when she realized that I had switched hands on her. I still smile and laugh when I think about it, and I can’t say enough about laughter. Laughter was and still is my defense mechanism for easing the pain. In reality the joke was on me because my arm was not responding. By the end of August after two and a half months in rehab, I was discharged for outpatient therapy. When I left rehab, I had found plenty of reasons for hope. I was standing, walking, I had some shoulder movement and I was adjusting to life with one arm. I would spend the next six months in outpatient therapy working on the arm. I wish that I could tell you that I made a complete and full recovery but real life doesn’t always allow you to write your own Hollywood ending. To this day my left arm remains paralyzed. Words cannot describe the loss I experienced. The harsh truth is that perseverance and the power of positive thinking are sometimes not enough to overcome a brain or traumatic brain injury. (Heaven knows I tried). It was at this point (four months after the accident) when I first came face to face with my emotional and physical losses. So began the toughest phase of my recovery. I found myself in the darkest and loneliest of places. I share this to emphasize the need for emotional support. As time goes on, family and friends may fall away, they often don’t understand. In this lonely time I turned to my rehabilitation specialists.
So how do you cope with trauma? If only you could rub some dirt on it, use duct tape or Miracle Gro. As I’ve shared my story, you’ve probably already picked up on four of my primary coping skills - Survival, anger, laughter and perseverance. During my two and a half month stint in rehab, those traits enabled me to find hope and to overcome. Upon leaving rehab, I realized that I needed a new coping skill set. I had real emotional and physical losses. How do you deal with losses that words cannot describe? I couldn’t cry me a river, build me a bridge, and get over it. I don’t know how others cope with loss but for me, the choice was between a box of Kleenex or giving it to a higher power. I don’t recommend having a stroke as a way to find God. We literally met by accident and he showed up so that I could surrender those things which I could no longer control. Faith became a huge piece of my recovery. So I’ve got God, I can handle it right? Perhaps, but I still needed to talk about it. I am forever indebted to the therapists who worked with me on the physical side but who also met me on the emotional side. They understood and they responded by listening, caring, challenging, encouraging, laughing and walking with me. I was not alone. If not for the compassionate hearts of those special folks, my story could have played out differently.
To be or not to be -- that is the question. No, this isn’t about Shakespeare. I chose to be, but that doesn’t mean I didn’t consider not being. (If you think on it, you’ll know what I’m talking about). The truth is even in the midst of recovery I found my thoughts taking me down some dark roads. (I don’t think that this is that unusual). These suicidal thoughts first began to surface in out-patient rehab. I would characterize rehab as the overwhelm phase where your senses are overwhelmed and the goal is simply to survive. By the time I left for out-patient rehab, I was no longer overwhelmed, and I was starting to process all that had happened to me. I would characterize out-patient rehab as more about learning to live with the new normal. The goal is to accept yourself and to get your life going again. In this phase of recovery, it’s on the patient to do the recovery exercises, and this is an extremely lonely time. It was not easy for me to accept the new me and my new normal. Left alone with my thoughts I isolated myself. (I suppose the paralysis from my arm and leg had moved into my thoughts). These thoughts and feelings were first triggered when I saw my reflection in the mirror. It saddened me to be reminded of what I no longer was. Had I been ruler of the world at that time, I would have decreed that all mirrors be destroyed. I thought myself half the man I used to be and I became “tangled up in blue.” All that I can say is that I experienced some raw emotions which led to some dark thoughts. My sense of self became distorted. It was as if I was seeing myself through the prism of amusement park mirrors. My thoughts didn’t like what they saw so I was left to consider my options. Fortunately, for me my trigger finger was paralyzed. I apologize for the morose sense of humor. I suppose it is my default for dealing with difficult memories. So, why did I choose to be? I can give you four reasons; I found God, I had hope, I had reasons to get better and I had people to talk to (talking is huge). Each would play a vital role in tag teaming the distorted thoughts which entered my mind. To be honest those thoughts scared me, I had never contemplated such thoughts before. It seems strange to think that I would even have suicidal thoughts in the midst of my overwhelming determination to recover. Trauma is so insidious. I understand why people might choose not to be. For those who are struggling with whether or not to be, look for the warning signs; Isolation, depression, despair, not trying, fearing, being stuck, and worrying. Get the professionals involved. The best thing a family member or friend can do is to remind us of who we are.
I feel compelled to share the role that faith played in my story. Please know that it is not my place to tell anyone how to get through this nor am I imposing my belief on anyone. Had somebody come up to me to talk with me about God in the first three months of my stroke, I probably would have turned my anger on them. With that being said, God was not my go to guy before the stroke. I didn’t give God the time of day until I hit rock bottom.
A little background, when I first sustained a stroke at age 23, I thought myself invincible, this sort of thing wasn’t supposed to happen to me. But it did. I had always expected to live life on my terms and I suppose that I still do. Unfortunately, real life sometimes has a way of happening. My sense of loss was the kind of heavy stuff that I was not prepared to deal with. I needed and wanted to be in control and I actually thought that I could overcome this on my own. I am obstinate, the harder I tried, the more I struggled. Instead of regaining control I plunged into despair. I had to struggle in order to realize that I needed something greater than myself. Humbled by crisis, I finally despaired enough to cry out to a higher power. My cries were as simple as, help me. At the end of my rope and with a cry for help, I became grounded by my faith. It was a blessing to release my fears for those things which I could no longer control. Knowing I was not alone, my faith comforted me and my path began to cross with people who understood what I was facing. This brought me hope, peace, and in time, healing. It’s funny I had gone to church in my growing up years, I knew a lot about my faith but I never really understood it. My true connection occurred by accident. (Car accident). One thing I’ve noticed about one’s faith and life’s struggles is that people either run to it or run away. In my case it was such a blessing to get to the end of my rope to find a true sense of being and support.
Do you remember those heavy life questions I posed from the start? Why did this happen? What will my life be like? Will I recover? What I came to understand was that healing begins with those questions. I would learn that these questions weren’t so much about getting answers. They had more to do with leading me to a place where I could accept what had happened. All through my recovery I had this need to understand why life had yanked the rug out from under me. It took me ten years to get an answer to why, and when I did, I had this sense that I had finally recovered. Acceptance is a roller coaster of a process and the truth is what takes time. I would find acceptance and understanding by confronting my fears, grieving my losses and getting on with the business of living. For those searching for answers, a conversation with a survivor might be helpful.
As I found some recovery the nature of my questions began to change. I found myself asking how do I …? How do I tie my shoes and zip up my jacket with one hand? How do I change the baby’s diaper with one hand? How do I complete this task given my disability? These questions have everything to do with living with a disability and this is the mindset needed to get on with the business of living. Not everyone will find recovery but for those who do, independence and life are found by thinking outside of the box. This is graduate level disability problem solving, and it is how I live my life to this day. If you want to learn what it’s like to live with a disability, then I challenge you to put your arm in a sling, put your leg in a cast and put your mind in a wheelchair. I’m serious, get to sitting in a wheelchair for a day or try tying your shoes and zipping up your coat with one hand. You’ll likely discover that everyday tasks can be very challenging and that there are many creative ways to accomplish a task. One last question to ponder; How do you install the ceiling fan with one hand? The correct answer is to dial the phone and ask for help. Oh, I got it wrong too! (I actually tried it only to realize that I needed to ask for help). The truth is we sometimes need help.
When it comes to my disabilities, I’m kind of like the kid who doesn’t want to be the last one chosen for kickball in gym class. I certainly understand how important it is to be chosen, accepted and included. Be accepting, remind us of who we are and remember that our bodies may be broken but we’re still the same person. Did you know that in my desire to be “normal,” I go to great lengths to hide my disability? I don’t think of myself as disabled but I’m unsure how people will perceive me. I’m still quite conscious of my arm so I often walk with my hands clasped in front of me, behind me or in a pocket. When I meet people, I use my personality to create the first impression. After I’ve created some rapport, I let people see that I have a paralyzed arm. This seems like a silly dance to go through, but I don’t want people to pass judgment on me or pity me without first getting to know me. Perhaps you can relate. In my quest to be chosen for kickball and other opportunities, this approach seems to work best for me. One truth that I’ve also come to realize is that we all have disabilities; some are seen but many are unseen. It’s true and such is my perspective on “normal.” However, unlike other “normal” people, my disability can be seen. I know that the real world will pass judgment and question my ability solely on the basis of my appearance. I am all too conscious of the wondering look and I suppose that shame and the desire to be accepted is what compels me to hide and minimize my disability. Can you relate? What if people could see your shortcomings? In a world full of comparisons and judgment this is not easy. President Franklin Delano Roosevelt understood this. He took great pains to hide his polio. Most of the country did not know that his legs were withered from polio and that he walked with leg braces. He always exuded confidence and he was always photographed from the waist up. He faced his disability with courage and with a survivor’s mentality. He led the country through the Great Depression and World War II. He served the country well. I wonder if the nation would have been that accepting had they known the truth. Not everyone has the mindset of compassion and acceptance so I’ve learned to be confident with who I am and how I look even though others may be judgmental. I take the lead to show I’m okay with who I am to help ease their discomfort.
I spent my wedding day in rehab. It’s true, I was engaged to be married in August of 1983, and I’m sure it would have been quite the event had I not sustained a stroke. We postponed the wedding. My fiancée needed time to evaluate if she wanted to sign up for life with the new me. My prospects were not good, I walked with a limp, my arm was busted, I was angry, I had no job and my future was uncertain. Other than that, I was a good catch. My fiancée was a big part of my motivation to get better and she visited me nearly every day at rehab. That was huge. She was there for me and I figured that if we could make it through this we could make it through anything. Relationships are hard enough but the dynamics really change when you throw trauma and stroke in the mix. Unfortunately, real life has a way of testing relationships. The new normal is not what some folks signed up for. Everyone is impacted and each responds differently to life altering events. Some relationships don’t make it. In our case, we were awful young to be dealing with trauma. For those of you who thought otherwise, I got the girl. It probably helped that I moved back to Chicago to begin outpatient therapy. I needed to focus on getting better and my wife needed to sort things out. We would be apart for two years. During that time I got my leg back, I worked hard to re-establish myself in a career (that’s a whole other story), I became less angry and my future became more promising. Our time apart was extremely difficult, but necessary. I had to grieve my losses and do the hard work of recovery. I’m glad that she wasn’t around when I experienced despair; she might have changed her mind. I was still in the midst of emotional recovery when we married. I know that I brought that emotional baggage into the marriage. I worked with professionals to help me confront my concerns and move on. I don’t think my wife ever fully understood what I went through until much later, but it was enough that she showed up. For spouses and other significant others, I encourage you to keep showing up; you may not understand completely what your loved one is going through but show up anyway. It’s big.
When you go through the process of recovery, it is easy to minimize what you went through and not realize the severity of the injury. I don’t think of myself as being disabled and I think that attitude has empowered me to overcome, but the downside is that I’ve lived in denial over how the stroke has impacted my cognitive abilities. My usual response to the challenges of life is to tough it out, and like the Nike ad says, “Just do it.” For many years, I have denied and minimized my cognitive challenges. These challenges include memory and stress issues. They often play out at work. I find work to be empowering, challenging and stressful. I sometimes lose my train of thought. I struggle to remember procedures, products, processes and even the names of my kids. (In the case of my kids I know where they live). Have you ever had any it’s on the “tip of my tongue” kind of moments? That’s how I would characterize my struggles. I stress out when I can’t remember, and I am more prone to making mistakes. I find it embarrassing and frustrating. I cope by using cheat sheets to get my work done correctly and efficiently. Still, I have a tendency to beat myself up when mistakes happen. Fortunately, my communication and people skills enable me to gloss over most issues. In writing this, I am reminded that my cognitive struggles are stroke related. To think I beat myself up for shortcomings caused by a stroke. Wow! The moral of this story is to understand your disabilities and shortcomings because to deny them can lead to unhealthy thinking. Now I can cut myself some slack. I’ve been able to overcome much because I don’t use my disabilities as an excuse. I simply want to understand them so that I can change my thinking and find other ways to overcome. Should we pause for a group hug?
Regarding work, please understand that a TBI or stroke is not a resume enhancer. Some employers will discriminate based solely on what is unseen instead of on the basis of character or ability. With this in mind, what’s the best way to explain a disability to a prospective employer? I’m not exactly sure. I’ve always felt the need to explain my disability but I have also learned that this can be awkward for some employers. In the interview, I don’t shy away from looking for an appropriate opportunity to share my story. I know that it takes perseverance, determination and a strong work ethic to overcome a life event such as a stroke or TBI. It seems to me that these are positive attributes for prospective employers. I seek to communicate the positives while being mindful of the challenges of my disability.
This may sound crazy but I feel that I’m a better person for having gone through this. I wouldn’t wish this on anyone, but twenty-nine years of living with a disability has a way of changing your perspective on what it means to overcome this. I long ago accepted my losses, but I’d still prefer to be “whole.” I count it a blessing to have sustained a stroke because it helped me reexamine and find strength in my faith. In my weakness I was made strong and by faith I am sustained through the trials of life. I was doubly blessed because I got a new heart. You see I lost an arm, but I gained a new heart of compassion for those facing similar struggles. Perhaps the feeling I lost in my arm made its way to my heart. I am forever changed and I feel called to help others navigate a path that I’ve been down. Do these blessings make sense? Am I better for having gone through them? As for myself, I am a survivor and I know that I’ve been blessed.
Once upon a time I sustained a stroke which by the grace of God I was able to overcome. I don’t know why things happen to people, but that great philosopher Forrest Gump helps me make sense of it. He uses the analogy that “Life is like a box of chocolates. You never know what you are going to get.” Well said. Truth be told, I wish that I wasn’t so well acquainted with trauma, loss and recovery, but I am. I also wish that I could talk with you under different circumstances. No one knows how their story will play out so I encourage you to hang in there, turn to those of us who understand and take time to reflect on who you are and the blessings that cross your path. Work with your rehab team and embrace their medical expertise and hearts of compassion. Others of us have also been down this road before; we are survivors and know that perseverance and achievement are attainable. You can do it.
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