I spent the past week in the hospital getting videotaped and monitored on EEG to see if one of my "episodes" could be caught and defined as a seizure or not. I have a lot of things to talk about from the week, and I'll start with what I wrote at 4:30 in the morning yesterday morning.
The time on EEG has been a very thought-provoking time for me. I'm supposed to be staying awake for 24 hours, and this is hour 20. So I'm just going to ramble and see what comes out.
Both my parents came in with me. My arrival was much too reminiscent of the 1986 hospital stay for my liking. As soon as we got off the elevator on this floor, we passed a room where a lady was on oxygen and calling in a very agitated voice, "MOM!" At first, I thought that perhaps she was a middle-aged adult whose mom was staying with her and perhaps was asleep, that maybe she was trying to wake her. But the calling continued as we went down the hall; and I realized that the lady's mom probably was not there. She was probably alone and dying. I was already having one of my seizures--Dad kept telling me to walk faster, and no matter what I did I couldn't move any faster--and I was afraid I might scream. I thought I was going to an epilepsy unit! But here I was on the general neurology floor--again, just like I was back then.
Mom must have been remembering the same things I remembered. "Welcome to your new home," she said. I wanted to tell her to turn around and take me home--after I had screamed.
I have had very few visitors. I suppose my family thinks this is no big deal since it's not invasive and I'm just sitting up in bed getting waited on. I'm alone at home anyway.
But this is very different from being at home. At home, I do get up and move around a substantial space, even if most of the time I'm writing or doing something in one spot. I get up, pet the cats, romp with Meghan, fix food, go to the bathroom, let Meg out, go to the basement to do laundry... Here, I'm literally wired to the wall. I can move as far as the bathroom, but that's it. I'm going stir crazy! I can sit in the chairs or on the bed, but there really is little difference for me. Either place is a good place to sit.
I don't want to ever need a hospital for long-term care, especially if I am incapacitated. I've had to speak up about my meds a few times. There was a mistake on my chart allowing a medication I am allergic to! If I couldn't speak, who would take care of these things? It scares me to think about.
Then there is the issue of visitors... I am afraid that if I was here for something long-term or serious, again I would be alone... I've been alone during the days following most of my eye surgeries, and I'm alone here. It's very lonely. At least I can call people on the phone. But I never want to be left alone with no means of communication!
These are the things that being in the hospital brings up for me so far. It's hard to control the panic attacks, and I see why some people have panic attacks that resemble seizures in this setting. I have a lot of time to focus on the hospital and my body's condition. I can do distracting things, but I don't have the luxury of ignoring the symptoms or fighting them off like I do panic attacks because I'm supposed to alert the nurses to any seizures. I try not to alert them to panic attacks, but when I'm constantly on the alert it's not always easy to tell the difference.
Mom did come and stay for a while last night, and we talked about my upcoming neurologist visit next week. She asked what I wanted him to say. That was really hard to discuss because it brought back memories of being accused of wanting to be sick so that I could have an identity or be like someone else I knew. But I managed to tell her (without having a panic attack) that I want to know what to call these things so that I can continue to get the medicine that is helpful for them, that I think he is too focused on my migraines which I feel are under control, and that I feel the EEG in 1986 was grossly misinterpreted. It showed an abnormality common in people with epilepsy; but the only thing that seems to have been worth explaining to my parents was the part that was interpreted as normal for a blind person. Those two things were unrelated, at least as I read the summary. I am desperately hoping that the same abnormality--or at least something--shows up this time, especially since there were three significant episodes and severel smaller ones as well. I don't want to hear that I just need more counseling because counseling has had no effect and antiepileptic meds have. If he doesn't know, I want him to say the words, "I don't know." She asked if I felt that I had epilepsy, and I said yes and explained about reading the old records. She doesn't understand how a person can have a seizure and not lose consciousness and be able to tell when it begins and ends. Part of me wanted to say that this is what happens when you have to live your life pretending to be ok and when your therapy teaches you how to be aware of your body's reactions so that you can attempt to manage emotions and panic attacks.
I won't know anything until next Thursday--I see the doctor at 11:00. So until then I just wait.
Getting the glue out of my hair is an interesting project. The problem is only slightly about my hair being long. The real trouble is the glue sticking to my scalp. I had to scrub it with cotton balls with fingernail polish remover, which stinks like nothing in my cabinets and burns very badly. (They make that stuff for nails, not skin!) I washed my hair twice and conditioned it three times, and it took about an hour to brush out the loose glue. (If that was really loose, I live in the desert!) My scalp is very tender now. Several electrodes were also stuck on my face, which is now very raw--Mom said I look like a leper. I don't want to put makeup on it--that will just irritate it more. But tomorrow my sister is having her baby shower, and I don't suppose it will do to attend with my face looking so raw.
I was reading Duane Miller's book, Out of the Silence, which tells the story of his healing from the loss of his voice after three years. He talks about being monitored on EEG for three months! I cannot imagine it! But if I had read the book before having experienced the monitoring myself--even though I have stayed at the hospital with someone else while she had hers done--I would not understand why the experience is so exasperating. At first, I was just bored because I couldn't move around and I was alone so much. But by the third night, I was beginning to experience a lot of other frustrations. Getting up to go to the bathroom was a major ordeal: climb out around the rails, pick up the EEG box that the wires were plugged into, walk around to the left side of the bed, roll the IV poll to the end of the bed, take down the cord going to the EEG box, go to the bathroom, make sure the door closed over the cord, go to the bathroom, wash up without getting the IV wet, roll up the big EEG box cord and tack it up on the IV poll, roll the poll back to its place, climb into bed... On top of this, my head had started to itch--and by Thursday I was so uncomfortable that I had difficulty sleeping once I was allowed to sleep. I felt a constant tingling sensation which was probably just my brain's way of telling me it had had enough foreign sensations a very long time ago. I understand a bit better why Duane spoke of his ordeal as part of a descent into what he calls a "pit experience"--he could not speak audibly at the time so did not have the luxury of talking with friends on the phone or (if he was ever sleep-deprived) keeping himself awake by singing all the verses to "There's a Whole in the Bottom of the Sea" and "The Green Grass Grew All Around."
The concept of pit experiences is an important piece of my personal theology. I brought it up here for a reason. I'm getting ready to write deep theological musings. I'll post them separately--I wanted to get the update posted but also wanted to lay the groundwork for the next post. I don't really consider the EEG monitoring a "pit experience," but it gave me a lot of time to think about a lot of things; and this was one of them.