Hawaii is over, Hawaii is still here.
The trip is over but some memories stay, and the idea that problems are just things to be overcome, that stays. The attitude that I am a valued member of society remains. But the last two memories or ideas are under assault: phone calls daily, from wheelchair sports collecting money, from Triumph who says they have been trying to get in contact (“When?”, “Uh, I believe I called in June.”) as they want $700 to avoid putting a computer unused due to glitches on the loan program. VIHA, Beacon, is there anyone who doesn’t call not giving a damn about me compared to the forms. I still have no GP, the walk-in clinic cancels the specials or tests ordered. I long for the time when people saw overcoming obstacles as something good, when at Badminton a player tries to claim a point because I was wheeling by (off court), “Wheelchair near court! Interfere! My point!” He later looks at me, realizes he will be in a match with a female wheelchair user, and takes his racket out of the line up, then puts it back to end up on the court minutes after me. Try putting ‘Jew’ instead of wheelchair and see how that sounds. I worry I left the best part of my on the Big Island.
Lungs, heart and nerves are withering, are dying. I live a life of oxygen and dusky fingers. I am adept at using my teeth for many things now. And the signals, the heat has increased in my upper spine, above the T-section. And by increased that means I am on 3 pain killers during the day, and at night the strongest, 5 pain killers, 2 sedatives, and then a spray of medicinal marijuana onto my cheek to help it absorb in minutes. I hallucinate. I bite my lip, my tongue. And I scream. How can I hold on to something, squeeze something to help me take the pain when I can’t feel my hands? I live by watching what my limbs are doing, I have gross motor function, felt or not: a crane operator. But the spine, it burns literally, while my body is goosebumped in shock it burns hot as I scream, my voice husky from a lack of oxygen. I don’t know how long? As many breaths until my lungs can’t push out any more.
I asked advice. What to do when the future is here? When it is seen? Spend more time with Linda, spend more time with squirrels.
I can do that. We have polite squirrels who often have a ‘a peanut for a starving squirrel artist?’ look. Yes and peacocks. The ones who aren’t thin are the ones who are bold. We found a pair of squirrels, both blacks (the smart ones) and one was getting peanuts every 30 seconds, running off and burying them. The other squirrel was digging up the recently buried peanut and eating it. Squirrel #1 hadn’t caught on yet by the time we left. I hope they are siblings.
We met an offspring or cousin to Psycho I call Fearless. Fearless is one squirrel who is going to survive the winter. Why? Because as Cheryl said, “That squirrel will be mugging old ladies for Chicklets.” Well, as to mugging, she would know.
As for me, I perfer my squirrels to view me as sort of like the bookmobile, I am the peanutmobile and all they need do is climb up and take a look at what is on offer. Fearless, upon returning, would run across 200-300 yards before leaping at least four feet away and landing halfway or more up my leg. Now I know what a tree branch feels like (and isn’t peripheral neuropathy good as he was using claws). I could feel the whump of force through the wheelchair. But at the end of the day it turns out he is quite picky, Fearless the gourmet? Or just wanting the highest calorie content?
As you can see by the leg, as he starts to eat after mugging Cheryl, Fearless has had plenty of action like fights. There is a claw mark on his back, likely a crow. This must be why he is basically sitting atop the person he just mugged and having a sandwich. Luckily Cheryl didn’t mind. See, we have VERY disability friendly squirrels (the people, ehhh, not so much – as we had been just been to a pumpkin farm and found it hard to find space in the disabled parking full of race cars and family vans, without a single blue badge in sight).
As we wheeled home, since I had frostbite in one hand, after turning off our cameras, a full grown bald eagle flew over us, just above treetop. She had a whole branch in her claws, nest building was my guess. There is one bald eagle at least in the park, but rarely seen. It seemed a good time to go home, falling under the shadow of the bald eagle.
The pain is still here, the fear of living without a net medically, the isolation, the daily times of being helped to breath, to clear the passageway, passing out due to lack of oxygen, the inability to move at all more and more often. I look into a future which realistically has no hope and want what everyone else does: living, a job, a social net, family. On one hand, VIHA has been hinting at a care facility. On the other, I am still planning a new trip while paying for the last, while sending out postcards and thank you’s. The race to use my hands has never been more painful, aching and conscious. No, I haven’t been well but I force myself out anyway. I force myself to do so many things, and now, I force myself to step back and take time to be here, and grieve a little bit.
It was too hard to face things. So my degeneration progressed. Starting today, a ‘Good Day’ isn’t a day when I am mentally like I was, or had a competitive experience, but one in which I didn’t scream, in which I smiled, or just stared at clouds. It is time to stop hating myself for the parts and times of me which aren’t as close to my Able Bodied Life as I could get.
41 minutes ago