A band called the Banana Slugs played funk, rock, zydeco, catchy tunes with funny lyrics about the Bay and marine life. You have not lived till you have eaten some PTA chick's homemade turkey sandwich in your new pink tshirt that has a whale wrestling a giant squid, while the crowd around you roars the refrain "Estuary! Salty and fresh" and small children shake their butts on the lawn. Then everyone lined up to go in canoes, and pet some sharks and eels, and sieve mud to find the tiny worms and shells, and there was a slide show somehow connected to Al Gore's global warming thing which I did not see the slide show but apparently there was stuff about melting glaciers.
My heart sank when we drove into the blocked-off parking lot next to the cluster of low buildings. For the parking lot was gravel and all around the buildings was gravel. There were some concrete paths half buried in gravel and some wooden walkways. But, I was in for hours of trying to move around. I had not called to check about access. Still, I'm glad I went and didn't miss it.
I had some moments that were nice where I was like "yay family having fun" but, I could not get to most of the places where Rook and Moomin were, at the times they were there, because of access and crowds (for example there was no way i was going to get to pet a shark with all those people shoving me... bags in the face...people leaning on my chair... I ran over a lot of toes in that aquarium building and then just went to its sidelines in complete disgust) And, so I had a lot of those "parked" moments where you get to sort of watch other people having a nice time and you experience a sort of disabled-person compersion as you enjoy their enjoyment (which is halfway just parental enjoyment of kids doing their thing). I had a nice moment when I wheeled up onto the pier and managed it competently and wheelied over the rough patches and the wind wuthered through my hair and jacket. (Estuary! Salty and fresh!) I felt very alone-in-a-crowd.
Three separate people were especially offensive. I guess I have not been going out to unfamilar places/crowds that often, because it felt like it's been a while. One woman blessed my heart. Another one said kindly that she "just wanted me to know that she thought I was very brave". A totally scary tanning-booth possibly-drunk lady with her grown up son with her (looking like he was gonna die of embarrassment) caught my arm as I wheeled past and said "You know, it's good that you come out. You're making SUCH A DIFFERENCE" and something else I have mercifully forgotten, but it was so dripping with grossness that I sat there and stared at her with my mouth open and had no witty retort.
A lady tried to push me at one point and I could see her recognition that things were rough for me though she could not figure out why, so I went back after a while and asked the volunteers if someone might sweep the concrete walks free of gravel. That helped. And I went over the giant pit of gravel in the photo here (so tantalizingly leading to a ramp) a few times (in fact, too many times) popping wheelies with every step (step??) so that my front wheels would not sink down.
The bathroom was far, far across a sort of narrow corridor of gravel and logs and there was just no way. If I had brought both my crutches and not just one, maybe.
The nicest bit, besides Moomin petting a shark, was that we ran into my ex girlfriend Nada and her partner & their two kids! It was so, so, good to see Nada and I clutched onto her and felt like crying somehow as I had been feeling very alone in the crowd split off from everyone. Then, it turns out, I had completely forgotten that Nada's partner is a neurologist at Staffnord, a resident. I mean I knew she was something medical but have not seen her for a long time... since maybe Hurricane Katrina or so... as she was always working so I only really hung out with Nada. Well, she pretty much started banging my kneecaps right there and drool was coming out of her as she looked me up and down like she was a dog and I was a giant hunk of meat and said things like "Goddamn it I'll do your lumbar puncture myself, it's easy as pie." "Uhhh can I have a valium for that, because, terror and pain." She said the Movement D1sorders clinic had just or was just hiring a ton of awesome people and was all overhauled and I should send her all my documents and history and MRIs and junk. As she asked me questions and I tried to explain the whole crappy story it was a bit intense for me. I admitted, I ahve been avoiding going back to my neuromancer because I feel like he fucked up and misdiagnosed me, though it happens to everyone really - but mostly I dont' want to go because I just couldn't cope, emotionally, with more doctoring and tests and running around. Besides, I am getting better or at least not worse. I also confessed (at her questions) that indeed lumbar punctures have been mentioned more than once and when they do I have just not gone back because I am scared of it. She talked of the plexus and de- and re-myelination. And that, in some ways, it is not going to matter what the diagnosis is as long as it is not an immediatly terrifying one like a tumor or ALS which it isn't, and the real thing to pay attention to is, what feels better, and if I am doing better slowly, then, I am doing things right. (That is how I also feel, and I think it is true.) I felt very guilty over not going to phys therapy regularly or swimming. (So much like trying to explain to the dentist why you don't floss enough, but worse.) At one point I was really overcome with her kindness and almost cried, but I caught it. "I've tried to manage things as best I can, and mostly do, but, it's hard to manage it right, when you're in it." It was kind of her to say she understood.
I made everyone leave because of my exhaustion and having to pee. My legs were so stiff, I think from the effort of the wheelies, low back hurting a lot. I wish I could sleep, or cry and be comforted, or both. I guess I need to go back to the doctor and then go to Staffnord and start all this mess up again.
Rook fell asleep immediately when we returned. I read E. Nesbit and lay in bed doing slow leg-therapy things. We have a role playing game in half an hour, can i pull myself together to sit up and be social?