My short-term memory loss is, in many ways, a blessing. Want me not to pass on a secret you’ve just told me? Wait a minute and change the subject. Chances are very good that I’ve already forgotten it. I can be deeply sad one minute, and like a child, smiling through my tears the next. I’m aware of when I get fixated on a sad thought and people gently introduce happier thoughts, but it works anyway. In so many ways I’m like a small child. More innocent, more tender, more in need of protection. It’s confusing, I know, because to talk to me I seem very much an adult. Only my husband sees the true me that I keep shielded from everyone else (our sons and daughters occasionally get glimpses). I’m able to be the “normal me” for a couple of hours at a time, and then I’m exhausted. If I don’t rest in a quiet room, I start to shake and even cry. Loud or sudden noises affect me very strongly, and busy environments and crowds are very, very difficult for me. Knowing I’m going to be going somewhere or attending something like that takes at least a day if not several days of planning, including my outfit, where I’ll be seated, where the bathrooms will be, who will be there, what will happen, etc. Even something as simple as someone coming over for a visit I prefer to know about in advance so I can think about topics we can discuss, questions I can ask, and if they have any upcoming events that I should write down so I don’t forget to ask about them. I now do things like writing down the names of my visitor’s children, even if I formerly knew them very well, because when I’m the least bit excited I simply can’t remember anything, and it’s very distressing and embarrassing for me if I forget anything important like that. This is all very exhausting.
It’s very hard on my family to constantly be on the look-out for the “danger signs.”..my legs start to shake, I get terrible headaches, I get really confused and go into a deep “brain freeze”, my speech slows w-a-y down, you can ask me a direct question and I just stare at you without seeming to register what you said…it’s a far cry from how I used to be. I used to love nothing better than a party and visitors. On well. It’s the new reality. I just pray that this, too, will get better and I will constantly be moving toward “normal” or “better than “normal”. Or, if it’s forever, we find some fun in it. We have a constant-running stream of dark humor that sustains us, especially on bad days, that is definitely a gift from God. Like the way I’m constantly using “brain-damaged” to excuse myself for doing something stupid. My daughter says that term has an expiration date, but I say as long as the brain damage lasts, I should be allowed to use it. So there. Like the constant litany of “you look great!”. I always seem to hear an unspoken underlying subtext of extreme surprise like they weren’t expecting me to look so good for someone who had been (pick one) a. in a terrible car crash, b. sustained a traumatic brain injury such a short time ago, c. been in a coma for months, or d. all of the above. I know, I know, I’m far far luckier than I deserve to have not have had my face damaged in any way, and I know they are truly surprised and relieved the first time they see me because the term “brain damaged” conjures up such terrible, and sadly often true, images. I know it’s an impossible and awkward situation for them, and they’re just trying to make conversation, and I really do appreciate it. It’s just that it’s so inevitable. Like “you’re doin’ so GOOD!” I used to hear all the time.
Trust me, if I pulled up my shirt they’d be quickly shocked into silence by all my scars…I joke that I look like a doll that a child tired of and threw away or tossed to a dog or something, and some loving person picked me up and stitched me together again. My husband said that while they were inside me taking stuff out, they went ahead and took out my appendix. I guess I didn’t need it anyway.
Anyway, this diatribe wasn’t intended to be self-pitying or whiny. Seriously. I just wanted to explain to people how it really still is with me, because I know I’m deceptive. Part of that is my own pride, but mostly I’m so excited at seeing them and being with them that I really AM okay. It’s just afterwards that I, and my family, have to pay the toll, for that seeming “normalcy” and I wanted to somehow explain that. So the next time you see me and you exclaim “you look wonderful!” and you remember this post and you’re immediately embarrassed, don’t be. I understand, and I really do appreciate it. Besides, I know I’m one of the fortunate ones :-),
Thanks for reading.