Most people’s alter ego is either some powerful superhero or some dangerous villain. My son’s is neither. My son can go from placid to dystonic–twisted and contorted–in a matter of minutes, and the screaming that follows is enough to rival any operatic feat.
Dystonia, for those who are not familiar with the term, is not a country in Eastern Europe. Depending on the severity, it is a movement disorder that causes uncontrolled movements and painful contorted postures. My son has generalized dystonia, and as his mother it is soul-destroying to watch him. For him it is a life trying to stay one step ahead of the pain, the uncontrolled movements, and the dystonic posturing.
The first time I saw him going into his dystonic posture was in the neonatal basin. Around me in the silent beeping world of sleeping babies, my son twisted his neck and torso like a floor mop squeezing the last vestiges of water into the bucket beneath.
A young nurse kept saying, “Look, look, look, how strong he is trying to turn over already.” Over the next coming weeks I would hear this a lot from highly trained professionals–and I would despise them. Although I was not a medical person and my knowledge of cerebral palsy at that point could fill a postage stamp, I knew in my heart that what I was seeing was not normal.
Doctors would see the extended head crunching up as hard as it could without breaking and try and give me hope. “It’s movement, and all movement is good.” No, I would want to yell–can’t you see he never stops moving his neck or torso. He never sleeps and his arms are like superman–they stick out in front of him and his toes point backwards like superman flying. He looks like some comic book character ready for flight.
I began to realize that my son was a new breed of cerebral palsy. One that many doctors had never encountered before. I began to realize that books did not have much if any information on what my son was going through. I began to search for someone and something to hold onto.
Google became my best friend. I would type symptoms endlessly into it, and finally after about three months DYSTONIA flashed on my screen. I knew that this was what my son was experiencing, and the story I read was about a woman who was dying of hunger because her stomach had dystonia. My son’s emaciated body came to mind. What if he had this kind of dystonia and that was why he was retching and not growing? Armed with this new information, I rang up the neurologist, and within a very short time my son was set on a course that would lead us to treatment.
But it was from that day on that I began to think of my son’s movement disorder as an alter ego that we aptly named Dystonic Man. Arms extended, toes pointed, ready to fly in the face of the facts. Ready to defy predictions and live a full happy life.
Living with Dystonia
For the last four years we have been increasing and decreasing his drugs trying desperately to find the golden balance between sedation, less pain, and more physical function. Each week the drug chart goes up, only to come down and be changed by the end of the week. At some point I stop reading up on side effects as the mind gets used to the idea that my child is addicted to drugs like Speed (trihexiphenadil) or Valium (diazepam).
I never get used to the dystonia. The sudden increase in heart rate–the body looking like it might combust. My child disappearing and this grotesquely twisted form replacing him. As he twists and thrashes on the bed with a heart rate at 205, it looks like some crazy puppet master is just pulling him in conflicting directions.
And that’s just the uncontrolled movement. There is also the lack of movement that turns my son into a rigid twisted board, which makes it impossible to manually handle him. He loses the ability to sit, and in effect we become trapped. Prisoner to his inability to sit and therefore go outdoors in any equipment. We live life on edge, never sure when his next dystonic crisis is coming.
Leaving the house heart-in-mouth wondering if we will get caught for speeding, because in our car our son has suddenly without warning lost the ability to sit in his wheelchair. His high-pitched screaming is filling our brains as his limbs descend into the chaos that his brain unleashes.
Painfully, I realize that the only option left is to sedate him so we can get home safely. I recall old documentaries about mental asylums in the past drugging patients to sleep, and I feel evil as I watch these same drugs slip into my boy’s system. As his brain switches off, I watch him relax and I just want to weep.
And as the weeks roll by I am suddenly realizing that I am reaching more and more for the sedatives. That in spite of my best efforts my son’s condition is out of control.
Contemplating Deep Brain Stimulation
Eventually we ended up at a children’s hospital as it became apparent that the medication was no longer working enough. And that is how we came to be sitting with our son’s neurology consultant being offered brain surgery. I stammered, “You’re going to do what to our son’s brain?” All the time trying to process and process the unprocessable.
And thus begins our journey of deep brain stimulation. I am sure many have gone before us, but it is a first for us, and one I want to share with other parents in the same situation.
The process of deep brain stimulation begins by placing a battery into the stomach of the patient with thick wires that extend up through the neck and into the brain. In order for the surgeons to do this operation, incisions have to be made in the skull, and a rather large cut is also made in the abdomen. An electrical current is used to stimulate the deepest part of the brain to improve the dystonia. Each night the battery has to be charged so that the electrical current continues to work.
This complex operation should with time reduce the need for the ten or so drugs my boy is on that are only just keeping him comfortable. Yet, for all the positive feed back and happy parents of children who have had this operation, I am still frightened and look through spliced fingers at the months ahead.
I’ve had a recurring nightmare in which I am chasing the pink Duracell bunny–with a battery inside him–through the advertisement. When at last I reach him, I place my hand on his shoulder and turn him. As he turns, he morphs into my son and I cry out, “I don’t want my child to be a Duracell bunny.” Then I wake up.
The Duracell bunny has taken a more sinister role in my psyche representing all that could go wrong with this part of our journey. Although logically I am sure it is for the best, emotionally as my mother-heart beats in my body, I fear the magnitude of the changes ahead.