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My Dancing Shoes

I thought I was prepared for ECT. I had researched it. I thought I had a pretty good grasp of what was going to happen but the reality has proven to be very different. The general effects: headaches, muscle aches, nausea, memory loss, mental confusion are all there but to a different degree than I expected. I just completed ECT Treatment #6. I’m told the average is 10 which would put me just past the halfway mark. According to the doctor he’ll keep doing the treatments until I plateau and then do 2-3 more.

Physical Effects

For me the treatments have fallen into two phases: physical and mental. They physical effects hit first and they hit hard. I didn’t have a slight headache. I had a “give me something now or I’m going to the ER” headache. They offered me Percocet but I can’t take narcotics because they destabilize me – counter-productive to a treatment designed to stabilize me. The physical effects, however, could be dealt with: painkillers for the muscle aches and headaches, anti-nausea medicine to treat my upset stomach, and I can’t minimize the gift of my anesthesiologist.

I never thought much about the anesthesiologist. Turns out, at least where ECT is involved, the anesthesiologist is your best friend. That’s the doctor that times when you fall asleep and when you wake up. How much of the agony from the medicine in the IV you’ll feel before you drift off and whether or not you’ll feel like you’re suffocating when you wake up. They tweak the pain medicines and muscle relaxers that mean the difference between jaw pain that makes it nearly impossible to eat (an important consideration after you’ve been fasting for approximately 10 hours) and simple stiffness. They can ease the headaches and the nausea. I’ve had 4 different anesthesiologists and credit one in particular with setting the doses for the others to follow.

When the anesthesiologists follow her recommendations, the physical side effects are mostly under control. I still deal with the deep exhaustion that comes with the treatments. It’s amazing to me to have such severe insomnia when I am so bone numbingly tired.

Mental Side Effects

As I continue the treatments, the memory loss and mental confusion become more prominent. What strikes me the most is it’s not what I expected. I had a very linear view of memories. I thought I had Memory A, B, and C and perhaps I would lose Memory B. I would feel sad at losing memory B but I could be told about that memory and recreate it. It’s not like that for me. I have memory A through infinity. I can tell there are memories missing. My mind goes to retrieve information and can sense there is, or was, a memory there but can’t quite grasp it. It’s much more frustrating than I was prepared for. I was prepared for loss, for sadness, not for the sense of continuously banging my head against the wall. I have foggy thoughts and I don’t know whether they are dreams, memories, fantasies, ideas or facts. All I know is they are just beyond my grasp. It’s like the frustration you feel when you have a part of a song running through your head but you don’t know the full tune and can’t place the melody.

Is It Worth It?

So, after dealing with all these side effects we face the real question: Is it working? I wish I had a clear answer. I don’t cry all the time. I don’t scream to drown out the voices. The doctor asked me if I still heard voices. After the first few treatments the voices were either quiet or indecipherable. Now I find the depression and psychosis is worsening instead of improving. I’m told that can happen but we also may need to move from unilateral to bilateral ECT.

Now that I’m not in constant physical recovery I can spend more time thinking about my mental recovery and facing my life reality: I gave up my job, that I loved, to do this. Did I make a mistake? Should I have powered through? Was I too weak? I’m facing the fear of the future: how do I make a living? Is working a realistic goal? Will I get my life back?

I try to stay positive. No matter what I face I know I’m not alone in this battle. People may not fully understand what I’m facing, the pain I’m enduring or the future I fear but they are trying. All hope is not lost. Bilateral ECT is more effective and while the side effects are more pronounced, it’s worth it if it works. So, I continue on. I continue to hope, to pray, to endure. I’m in the storm. I’m staring at my dancing shoes. Right now, I’m just too tired to dance but they are there waiting for me. I haven’t given up on the dance.

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