Sunday I had two appointments at M.S. clinic at Sheba Hospital in Tel Aviv. One was with a nurse, which yielded nothing as she insisted I needed to make an appointment with a dr. before anything, and the other was for physiotherapy only as I’d never been there before all that was done was about half of an initial assessment. 1.5 hours in the car driving there, 4 hours at the hospital (plus or minus) and another 1.5 hours driving home. Oldest son was driving, The Husband was along as my translator and support person. Three person/days just about completely wasted… except… I now have appointments with the doctor the nurse says I should have seen, with a social worker who can hopefully come up with some sort of suggestions or help with the transportation problem (at least until I get my (fingers crossed) wheelchair van), and for the second half of the assessment. None of which would have happened without this initial apparently non-productive foray. It is what it is, and expecting everything to go smoothly and efficiently is just a recipe for frustration and anger.
I’ve been struggling for a while with the limitations of my living situation. For instance, tonight I am staying up way late (I’m not happy being up after midnight) and being literally eaten alive by mosquitos, flies, gnats, no-see-ums, you name it — just so that I can have some time alone with my thoughts and a keyboard. It doesn’t seem reasonable or fair — but I can instead think about what I have, rather than what I don’t have. It can be hard, but tonight I am aware that I don’t need to have an internet connection or even the internet. I don’t need a computer. I don’t need electricity that keeps the computer on and the lights at this late hour. I don’t need (honestly, don’t) this quiet, private time. It is a luxury. One I really don’t want to do without, but still. It is a gift, biting bugs and all.
Last week my middle daughter drove me and her two youngest siblings to the beach at Ashkelon. We got a later start than I’d wanted, stayed later at the beach then we probably should have. There were black flags all over because of jellyfish and undertow, we found out while we were there. Some of the younger generation went in the water and got stung. I sat at the edge of the water, being hit by the waves. It was a lovely time. There is a concrete path that goes close to the water, and this year (and in some years past, but not all of them) there is a wooden path extension that goes almost all the way to the water, so I was able to get down in my wheelchair, and walk using a walking stick the rest of the way. The walking stick was made for me by my oldest son, and suits me to a ‘T.’ I had years of various canes and other walking aids but none of them really worked. In any event a good time was had by all, and I am well and truly grateful that an entire summer didn’t go by without one single trip to the beach.
I know that there is a lot of summer yet to go, but I also know that without the wheelchair van, and (largely) dependent on my oldest son for driving, I am not going to be able to get out for many jaunts just for pleasure. It is hard enough getting out for the necessary trips, like to Sheba and to take our dog in for surgery. I don’t get to go shopping, my youngest daughter takes care of almost all of that with oldest son. They do a fine job, but I really want to do my *own* shopping.
Well, so it goes. I was reading some pieces I wrote oh, about twenty to twenty-five years ago for a cooperative magazine. Some of it was just writing about my life, some of it was short fiction, some informational. I haven’t finished reading them all, but one thing that stands out for me is I could Write! I’ve been feeling pretty incapable, incompetent, useless and unproductive. I suppose it is the result of over twenty years of increasing disability, and particularly the last four years when I could not go anywhere by myself or even be alone in the house. It’s not a life that leads one to feel competent, or valuable. Well, hopefully some of that will change when(if) I have wheels. Until then I knit, I work on Hebrew, and I put a lot of effort into keeping my spirits up because it IS a lot of work. It is not second nature to only look at the positives, regardless of how much one has or how fortunate one has been. I know this and I remember that I love this house (even though I still haven’t got a room of my own), I love where we live, I love our critters and the kids – almost all of whom are now adult, so I feel I should call them something other than kids but — they are still MY kids. Relations with TH are better than they have ever been, even during the honeymoon period (back in the dark ages, that is).
In reading the stuff I wrote I am also being reminded how hard, hard, Hard, HARD it was, back then, with the very small children and the emotional garbage of early recovery from my childhood, and being newly disabled (and not yet dx’d) and good heavens! How on earth did we make it through all of that? I don’t know, it wasn’t pretty. But we did and here we are.
The construction crew actually showed up today and did a little work on the mamad (safe room) that is supposed to be built here. All the houses on the moshav are getting them (finally) but for whatever reason ours has been just sitting there – a concrete base and nothing more. For almost three months now. So I’m not going to jump up and down and believe that they are actually going to do more work, even see walls going up or anything positive like that. Not until/unless they actually show up and work more than one day in a row. Still, it is something. Little signs are all I have, so I make the most of them.
If/when the mamad is totally finished, then I will have a room of my own. I’m going to use the mamad as my bedroom. I can almost imagine the security of not having to get up if there is another rocket alert. I mean, when.
I wish I had photos but it’s going to take more brain than I have to find some to put in here, so we’re just going to have to cope with my writing tonight. It is late enough.
Be well, all, and Gd bless