I have schizoaffective disorder. Basically, I get manic and depressive episodes mixed with psychosis. It’s a lot of fun. (NOT) I’ve had times in my life that have been more difficult than others but for the most part it’s been a struggle simply to cope. Without medication I am locked in an alternate world where I believe I am LITERALLY in HELL! There is no help in sight. I am completely isolated, rejected by God. My existence is limited to my sitting, rocking back and forth, screaming, “Why do you hate me?” to a God who seems to have abandoned me. I can feel the “demon bugs” crawling over my skin as voices berate me. There is no functioning. There is no relief. There is no such thing as, “Positive Self Talk”.
I’ve lived with mental illness since I was a child. I’ve been on more medications than I can count. I’ve spent years working with psychologists and psychiatrists trying to find SOMETHING that would make me – if not “normal”, then at least “functional”. Three years ago, I hit bottom. I couldn’t escape. I ran out of options, so we broke down and decided to try Electroconvulsive Therapy (ECT). For seven months, I had regular treatments: 2-3 times per week. I would be put under anesthesia, electrodes attached to my head, and have seizures induced – bilateral ECT. I was told memory loss was a risk but it was minimized. “It’s only temporary.” “It’s just the most recent memories that are affected.” Yeah. . . no.
What happened during those 7 months is gone. It’s been over 2 years and it’s not coming back. Memories before that are hit and miss. Some are gone, some come back. The worst part is I struggle to retain recent memories. I’m an intelligent person. I loved school. I have a Bachelor’s and a Master’s degree. Whatever my faults, stupidity wasn’t one. Until now. My ability to learn is greatly hampered. I’ve become reliant on keeping a notebook on me to record anything I need to know, any thoughts or inspiration I have because before the end of a conversation, pieces would be missing.
I joke that it’s not all bad. I watch TV shows and forget what was on the show before. The Big Bang Theory is all new. Unfortunately, the downside of that truth is I struggle to follow story arcs that cover several episodes. I recently had to go back 4 episodes of a show I was watching because as I watched the intros, nothing seemed familiar.
I cannot stress enough how frustrating memory loss is. There’s a reason Alzheimer’s patients get argumentative. The simple fact is, you don’t know what you don’t know. You don’t know what you’ve lost until someone points it out and it’s like a kick to the gut. The stories you’ve told all your life become hazy, if they don’t disappear altogether. People will share events and you just stare. Wanting to remember but unable to. You find yourself unable to win an argument. Your judgement is not respected.
People don’t understand the struggle. It is so natural when talking to friends or family to share events. I’ve come to hate the phrase, “Remember when. . . ?“ No, I don’t. Important memories: giving birth to my children, their first day of school, their graduations, lost. I can conjure up a picture from the photo album, but I don’t remember the actual events. And, again, I don’t know the stories of their lives recently, without the pictures. It makes me sad and it makes me angry.
Was it worth it? Probably not. I’m on a new medication. It’s a dangerous drug that can shut down your immune system. I have to go to a certified pharmacist, prescribed by a certified psychiatrist. I had to sign off on the side effect risks. I started with weekly blood tests for six months followed by every other week and now once a month to check my blood cell counts. I have excess saliva which goes into my lungs. I had bronchitis 4 times in the first 6 months. Now I sleep sitting up. I sleep 10-12 hours a night plus the occasional nap. I wake up more tired than I went to bed. But I’m not in hell (at least most of the time). I’m able to work and volunteer. I wish things were different. I wish life wasn’t always this hard but I’m functional. I’m not on the streets or locked away in a facility. I have a good life.
My request is to be sensitive to those of us with memory loss. Believe me, it bothers us even more than it bothers you. We’re scared, frustrated and angry. We’ve been robbed. Our precious memories are being taken away and we can’t stop it. When we do remember something differently, we are dismissed, discounted. You may be right but you don’t have to rub it in. And let us tell you the same story over and over. It’s a memory we still have so it’s precious to us. Let us share something with you.