“…at my worst when I was stuck in that chair. I couldn’t move. I couldn’t talk. I could barely keep my head up and all I would do was stare at the patterns in the carpet just to make sure I was still in there and alert. I remembered where each stain was. I was scared to sleep. I was afraid I wouldn’t wake up if I did….”
As Michael talks about that period of months that happened less than a year after his first symptoms of poisoning began, you can hear him well up with tears. Remembering the period of months that he could barely walk- when even standing in one place was unreliable, and at the worst, when even talking seemed to take too much from his body- is an unbearable road to go down.
In those days, the quiet room at the back of our house was his prison. He isolated himself to protect his family from his constant suffering. He refused to fill the house with that kind of energy, and mustered up the biggest smile he could anytime we went back there to visit him. It sounds completely crazy. Why would a person who needed constant care be adament about being left alone for hours at a time? To live hearing distant voices laughing and playing and yet being so far removed and unable to participate in your own life….Is that a life? It was a prison. Truly his body was his prison and the quiet room contained it.
Michael had to relearn how to walk. He does so now, but under extreme concentration and only for short distances. Indeed, some of his physical abilities came back. He’s not using a wheelchair anymore and can stand erect without it appearing awkward.
But his mental impairment is very present. Many times thoughout the day Michael must escape to a quiet area of the house because his brain has had too much. Even trying to field the many questions that a curious 4yr old shoots at him can be too overwhelming. Sometimes he goes out to the garage. Where we live now, he has a nicer den area on the other side of the house where he can lie down. Anywhere we go, he has to have this escape route so he can quiet his mind down again and rest. Unfortunately, this quiet room is not impenatrable to our son. When he wants to find daddy he knows exactly where to look. But usually, the quiet room is his sanctuary.
On a much deeper level though, his “quiet room” can be anywhere. Michael stands outside the garage a lot, taking in the sunshine, listening to the birds, staring at the mountains. He becomes so in tune with his environment that he can tell which trees the wind is blowing through by the difference in sound. Listening to him talk is like listening to someone who has practiced meditation all their life. Even more profound, Michael deals with his pain by “becoming friends” with it. Sometimes, lying silently he becomes very aware of where pain lives and moves throughout his body. He can pinpoint one specific type and track it, and breathe through it, and live in it. Not many people I know can say that when they feel pain, they want to get to know it. Masking pain or removing it is more the norm. It amazes me how, through this illness, Michael has found this place within himself that is peaceful, and silent, and strong. To be able to access that quiet room within, is the greatest and healthiest gift he has found for himself.