We just got back yesterday from our sojourn to the wonderful south. I'm getting so fond of the whole region, and it's not just the grits and sweet tea. The Inn where we stay has become a second home to us– we stay in the same room, and the same people are there usually also the same week each year. So we just walk in and say hi y'all! Give everyone kisses, take our bags upstairs by ourselves, and begin vacationing. The kids pick up where they left off last year– it's amazingly all girls except Isaac, but he handles it well.
This year the big question was how much or little I could do with the vertigo hanging over me all the time. I had a very bad week the week before we went down… dizzy so often and so badly! I decided to take another round of prednisone to see if it would take the edge off, and it did. But it's just a stop-gap– I can't go around taking that all the time. We stopped for a day in Greensboro to see our wonderful friends the Ortizes, whose little boy Nicolas is Isaac's BFF. While there I ran into lots of trouble with dizziness. My friend Claudia and I attempted to walk the little kids (Stella and Elias) to a nearby playground, but I was overcome by the slope of the road. I just could not deal with it! It was also brutally hot and the kids both fell asleep, so it was no problem to bag the whole idea, but still. Later that evening I stepped out of the car at a restaurant, and immediately could not cope with the slope of the parking lot. I had to cling to the wall, and spent the rest of the evening clinging to people or groping for them in the unsteady tilting world.
This experience depressed me a great deal. Also in a couple weeks I need to got to NYC by myself because my good friend Andrew King committed suicide in May and so a group of my old writing buddies are getting together at Columbia to have some sort of gathering– wake, mini-reunion– to mark his passing. But as we were driving from Greensboro, NC, to Pawleys Island, SC, I sat in the car crying and feeling pathetic most of the time. Why do I have to have this condition? Why did my friend take his own life? Why are these two bad things converging? And how the hell am I going to get through a flight, and then from a plane, through LaGuardia, all the way to someone's house by myself?? This helplessness was overwhelmingly sad there for a while. I called people to ask for help, changed where I'm staying to a more vertigo-friendly location, and then cried extensively each time I got off the phone. I finally comforted myself that if I can't go, so be it. It remains to be seen how this works out. But I can tell you that the latest upsetting development is that I've been shopping for folding canes. That whole issue warrants an entry to itself, but I'm not happy about it!
In any case, I had no idea how it would work to be in a place so non-vertigo-friendly as the beach. The first day I made a tour with Ben helping me, and learned that I could walk on firm sand a little bit, but not go near the water whatsoever. I could sit on a bench, but not a rocking chair. An hammock?? No way. I could not come down to the water's edge and make a sand castle, but I could sit under an umbrella in a chair and read. And since this is something I really love doing, it was very pleasant to be able to do that. I read 400 pages of Henry James, Portrait of a Lady, and found it very engrossing and wonderful. I hope that now home I can polish off the last 200 pp and see how it all comes out. Also, we had an ocean front room, so when I did need to lie down, which I did need to do sort of a lot, I could still see and hear the ocean. So that was all very nice.
One extreme low point was a trip we made to the aquarium in Charleston. Ironically, I was the one who wanted to take the kids there– it was almost like it was a plan that I had in mind before I got Meniere's disease, and then I forgot that it would not be possible for me now. In a word, it was hell. I can't describe how hellish it was. It began with a long, long ramp I had to walk up, and the ramp was flooded with packs of 80 kids in matching t-shirts. I barely made it through that ordeal (I just can't DO slopes or inclines at all!), when I got to the inside of the place and found– you guessed it– a huge tank full of fish. Being dizzy near moving creatures was not fun in the first place. I sat on a bench for a while while the kids looked around, but then it was time to move on. The next problem was an escalator. I got through that, already pretty dizzy from the ramp, and then came into another problem– a dark, cavelike environment with a faux-stone uneven floor, sloped and bumpy, more tanks of fish all around, and so on and so on. ALso it was maze-like and so crowded and there was no possible means for escape. Ben walked me from place to place and parked me on benches, while the kids constantly tried to get me to come and see things, which I could not in any way look at. I got worse and worse until I was sitting there, concentrating on my breathing, trying to stare only at stationary things (few and far between, and always the moving fish in my peripheral vision), formulating plan B: do we drag the kids out of here or do I try to get back to the car by myself? Or do I try to get some docent type person to walk me out? It occurred to me that in a pinch I could vomit into a plastic bag I brought for soiled diapers.
When it was all over, and I didn't vomit, we topped it off with a horrible scene in the gift shop– not only the kids screaming for toys, but Ben and I disagreeing about how much to spend. Really it was all just a slice of hell. I came away from the experience recognizing that this is why people with Meniere's disease get reclusive, even agoraphobic. You start checking things off the list. I can't go to aquariums. I can't go to farmer's markets. And then it just expands to, I can't go to public, crowded places, and then I can't go out at all, and then really it's BED that's the only safe place to be. And there you are.
I really don't want this to happen to me, which is why I'm thinking of getting a folding cane to just keep in my shoulder bag for emergencies. Ben makes the case that if I had a torn ligament or something I would use a crutch and not feel bad about it, so why is this different? Lots of reasons…! but I hope that a cane would serve as a security blanket for times when I run into something in the environment that I can't cope with, get dizzy from it, and then at least can use that to balance until I can get back to safety!
I'm seeing my vestibular therapist tomorrow, and then the ENT on Thursday. I met a doctor at Pawleys who gave me the name of a guy at Ohio State who is researching Meniere's disease and so I plan to get in touch with that person too — maybe he has some ideas for me. Also I do think I will go up to the Cleveland Clinic for another opinion. And I'm having this big allergy work-up next week. So it goes… I am still in the weeds on this, that's certain. But maybe something better– some sort of solution– is just around the corner.
But on the other hand, there were fine clear mornings at Pawleys where I felt good enough to get up and go for a fitness walk, on a flat road along the marsh. I had nice evenings sitting on the dock and chatting with people. (As the sun went down, my dizziness came up and I had to get inside before the witching hour.) There were dramatic thunder storms that swept through, and on one occasion we had a full end-to-end rainbow over the ocean.
But now Elias has just hit me over the head with a pillow, and bumped my chair forcefully and otherwise is making me dizzy– dizzy and angry! I realize he's two and he has no idea what he's doing, but after a whack like that I now may be dizzy for three hours. Can I make it to Pilates this morning? Or will this turn into a bad day? I've given up on "one day at a time"– I have to do "one hour at a time."