I remember the exact day freedom was taken from me, perhaps never to return. I will never forget the sense of loss in that moment, when I came face to face with the reality of my illness. I have a seizure disorder, but until this particular moment in August 2012, I mistakenly believed life could continue as normal. I have never been more wrong.
When My Freedom Was Stolen
I drove to the grocery store to pick up some milk and cereal on a Saturday morning. My daughter wanted to go with me, so she could pick out her favorites. Ten minutes later, we were on our way back home on a side road without much traffic. Just a normal Saturday morning for my family. And then, normal disappeared forever.
One moment, I was coming up to the stop sign at Cholla Avenue. A blink later, I nearly passed 82nd Avenue, a half-mile up the road. I just had a seizure while driving with my daughter in the car with me.
I began to hyperventilate as tears streamed down my face. I quickly looked behind me, hoping against hope my daughter was not hurt. Thank God, she was fine, and hadn’t even noticed anything out of the ordinary. But I knew in that moment life would never be the same for me. I had to come to grips with the fact that every time I stepped behind the wheel, I was endangering myself, all my passengers, and anyone else on the road near me.
I walked into the house and handed the keys to my wife: “I cannot drive again until my seizures get under control.” After a short conversation, she agreed. Now, I look forward to go carts, because it’s the only driving I can do.
But my seizure disorder wasn’t done with me yet. It wasn’t enough for me to be immobile as a man in his mid-thirties, suddenly dependent upon friends and family to go anywhere. No, my seizures needed to steal my dignity too.
A short time later, an attempted shower turned into a moment of naked embarrassment for my family. On a Sunday morning, I got ready to hop into the shower as we prepared for church. I undressed and stepped into the master bathroom, and then…I found myself lying on the bathroom floor.
I felt a burst of pain in my head, likely from the rhythmic bang-bang-bang against the wall. My shoulder screamed in pain. To this day, I still don’t know exactly what happened. We guess that I hit my shoulder on the sink as I fell, but nobody will ever be sure. My legs were sore from being forced against the toilet, which was much too close for my 6’7” frame.
Worst of all, my wife and teenage son were standing over me, in all my naked glory. As I slowly regained a stronger sense of consciousness, my wife explained that I had a seizure while I was about to get in the shower. I asked how they noticed, and my son said he heard the banging so he came to check on me. Then he looked away in shame, clearly embarrassed to be there.
I tried to stand, but both my legs cramped so I stumbled forward and fell on my face instead. So much for reclaiming even a small sense of dignity. I just laid on the floor of my bedroom and wept. I wept for five minutes or so, uncontrollable sorrow gushing from my soul as a sense of deep loss coursed through every molecule in my body.
I could not escape the thought that I was never going to be normal again. That I was never going to measure up to anyone’s definition of a full-fledged adult. If I can’t drive on my own, and I am incapable of taking a shower on my own, then I am no more than a few steps above an invalid.
The Moment I Made a Choice
I stayed in this emotionally comatose state for some time. In place of my sorrow, I allowed anger to take the reigns on my life. I became intolerable to be around, and I nearly destroyed my marriage and children. I abdicated my responsibility to manage my own life, and instead allowed the threat of another seizure to steal my days. I stayed in this state until I overheard my youngest son ask a question as I stormed outside after yet another explosion of anger.
Mom, why is Dad so angry all the time? He didn’t used to be like this. What happened?
I didn’t hear the answer my wife gave, but as the slammed door echoed into the neighborhood I realized I had been a victim of grand larceny. Even worse, I had to accept the fact I was both victim and perpetrator.
I saw for the first time that I did have a choice. I did not have to accept the loss of my freedom and dignity as a final state of being.
While it has remained true from the day I missed a stop sign that I cannot drive safely, this fact does not have to mean I see must see myself as less-than a fully adequate adult. Even though there is more risk in my life because of my seizure disorder, only I can give my dignity away.
So I chose to regain freedom, I chose to steal back my dignity. I chose to redefine normal.
The Process of Change
It is no easy thing to redefine the boundaries of a life without feeling like a fraud. I am a cynic at heart, so it is not in my nature to call something terrible a wonderful blessing. You will not find me among those who can blindly trust in God or fate or destiny to ensure that all the craziness that makes up a life will at some point end up being for the best.
No, I am more likely to be the one who comes up to a friend in the midst of a hard time, places my hand on her shoulder, and says, “This sucks. I am here if you need to complain to someone who won’t try to convince you otherwise.”
I am also not the one who is soothed by the recognition life could be worse. When I reinjure my surgically repaired shoulder by falling into the refrigerator during a seizure, the last thing I want to hear is that I am lucky I didn’t get a concussion. To me, this is the same as telling the woman who lost her home to a hurricane she should count her lucky stars she is still alive. I know firsthand these statements don’t help anyone, especially the ones in pain. Just because circumstances could be worse doesn’t mean gratitude should be the instinctual response.
Even though I am a cynic, and even though I will never be one of the shiny, happy people who see the best in each moment, I had to find something to prevent the theft of my freedom and dignity from recurring.
After much groaning and grumbling, I settled upon a single statement: God is good, every day, all the time, no matter what.
There always will be days where God seems absent. I still experience seasons when I wonder if he is asleep, or if maybe God’s definition of good is somehow radically different than my own. But this statement has become a knot for me to cling to desperately when I come to the end of my rope. Choosing to believe this keeps me from falling into the abyss of despair.
But I’d be lying if I didn’t add that the antidepressants help too.
The Power of Defining Normal on my own Terms
Over the past two years, I have uncovered three unexpected benefits of choosing to redefine normal in my own terms.
I shake off the shackles of other’s expectations
I spent a good amount of time battling my perception of what my friends and family would think of me if I had a seizure in front of them. Would they consider me weak or helpless? Worse yet, would they be afraid to be around me? This fear was reinforced when I had a work acquaintance ask me if my condition was contagious, as if seizures are akin to the common cold.
But once I decided to slough off these expectations, I found a new sense of freedom, one that extended far beyond my neurological health. I found an inner strength resonating from my soul and empowering me in every area of my life. I found the courage to start a new business, knowing full well that most new ventures fail within a year. I wrote the manuscripts for two books. I stopped allowing fear to trap me.
I find fellow travelers to strengthen me in my weak moments
Living daily with seizures is tough sledding, and opting out of normal does not make the difficult days go away. But, once I chose transparency about my health condition, I found camaraderie with others who have chronic illnesses. Some have fibromyalgia, others have seizures like me, and still others battle bipolar disorder.
Though the specifics of our “illness” differ when it comes to symptoms, we share a common bond. We know what it means to get the strange looks from people when we act differently, and we have each made a conscious decision where we refuse to allow ourselves to be defined by one aspect of our lives. This type of community only became available to me after I rejected the thievery of my dignity and defined normal on my own terms.
I discover the core of resilience
Before I reclaimed freedom, I thought resiliency was the result of a certain set of genetics. Because this was my assumption, I felt as though gaining any sense of perseverance was beyond me, that I was destined to walk through life lacking bounce-back-ability. Shortly after choosing to define my own normal, I began to notice more tenacity in my spirit.
The decision to live on my own terms by default brought a stance of resilience into my heart I was previously unaware of. My inner being was strengthened by the very existence of this choice. In the same way stretching and building the muscles in your core increases your stamina, I was developing resilience by choosing daily to walk a path separate from the masses.
A Thief No More, A Victim No More
Can I sit here today and tell you my depression never wins, or my sense of measuring up doesn’t gets the best of me? Of course not. Like everyone, I have times where the pain rattles me. I am still embarrassed after a seizure in certain circumstances.
And not a day goes by where I don’t wish, hope, and pray to find full health, to live an existence free of seizures.
But I refuse to stay in the dark recesses of my mind. I abjectly deny these moments the right to rule my life. I am no longer a victim. I am no longer a thief.
I am pursuing my own normal, defining my life according to the best I can give each moment. And I am giving grace to myself when I fall flat and feel the sting of failure. After all, I am only human.