Been a while. I’m doing the ostrich mom thing at the moment, sitting in the hurricane eye. I’ve come back to edit this and it’s a mess of disjointed writing. Read at your own risk because I don’t have time to fix it now.
My autism is showing. I’ve never been officially disagnosed as on the spectrum but sometimes it’s pretty clear I’m on it, to whatever degree. Currrently I’m listening to the same song on repeat as a kind of “auditory blanket.” The song itself, Bittersweet by Big Head Todd and the Monsters, has little significance – it’s just something my mind latched on to when I heard it recently so I kind of wrapped it around myself. It’s hard to describe why, how, or when it happens, but I think I tend to do this when I feel overwhelmed or helpless – which is how I feel with Boo so much of the time lately. The repetition keeps me focused on notes and words to the exclusion of the things I would otherwise be thinking, that I do not want to think. It’s why I’ve seen some episodes of Little House on the Prairie over and over…why there are movies I’ve watched and books I’ve read quite literally dozens of times.
They make up the sand in which I bury my head.
There is one thing I want to write about here but can’t because it would involve throwing someone under the bus, and I’m not here to do that. But I’m not sure how to tell the story without the bus. Let’s just say that Jonah was nearly banned from an eye doctor’s practice where he’s been a patient for nearly 20 years and it was entirely because of this person’s actions. Oh, I was livid. Partly at myself, for not making damn sure I could be there, but I was getting a kidney stent removed that same morning. I managed to smooth things over with the office and secure my son his next appointment, so all’s well that ends well, I guess. Suffice it to say this person will not be at Jonah’s appointments anymore if I can help it.
And about that kidney stent…on September 9th I woke up to day 3 of what I thought was the worst case of the flu I’d ever experienced – chills, sweating, fever, body aches, the whole thing. I mean to tell you there were times I was lying in bed and staring longingly at the glass of water on my nightstand because I couldn’t muster the strength or energy even to reach for it. My boss, God bless her, asked if she could drop food off for me and when she arrived I had rested enough to get up, so I asked her to drop me off at urgent care. From there my vitals were so bad they called an ambulance, and a few hours later I was in emergency surgery to implant a stent around 2 kidney stones blocking my ureter. Turns out the whole time I thought I had the flu, I was actually in sepsis, and they had to leave the stones in to avoid the risk of more infection. After the surgery, I woke up in the intensive care unit with three different IVs, a thick needle going directly into my artery to constantly monitor blood pressue, a catheter, and leg cuffs to prevent blood clots. Oh, and fentanyl, which probably explains why I felt like I was in a fun, fancy hotel.
After just a few days they sent me home, but it was another 6 weeks and 2 more rounds of antibiotics before a second operation to get the stones out –and then another week with yet another stent. The stents, not the stones, were actually the worst part. I was weak, exhausted, and in pain the whole time, some days so much that I had to call in to work and just sleep. As grateful as I am it’s over, it seems the minute that ordeal ended, Jonah started having problems. Sweet, then bitter…
Autumn is historically a rough time of year for Boo, and this year is definitely no exception. He’s had several bad behaviors, as they call them – incidents where he attacked and hurt staff. Last week was the worst one; they were transporting the individuals back to the house after an outing when Jonah started hitting one of the housemates — something he almost never does. Staff got between them, then they pulled over and spilled out onto the side of the road, where all hell broke loose. He was biting, hitting, kicking, scratching, head butting, the whole works. They called for backup and more staff drove out to help get Jonah under control and back into the van. It took a while. Jonah would say “all done” and then attack again. They held him on the ground and waited, then let him up only to have it happen again. When it was finally over, one staff member had to go to get checked out at urgent care (he was ultimately okay, but had been bitten on each hand and kicked in the chest and stomach). Jonah’s a little scratched up but he hasn’t had another behavior since and seems no worse for the wear, really. But he’s also a time bomb, tick tick tick.
I told Briana what happened and she reached out to the house, where staff were reluctant to talk to her. Yesterday I sent an email to the powers that be asking that all staff and administration be allowed to talk freely to Briana as if she were me. Not only was Briana Jonah’s house manager at Anderson, but she is next in line after me to be his guardian. She knows him. She loves him. For years she paid attention to the timing and cyclic nature of his behaviors, and she learned how to mitigate their severity and frequency both. She’s willing to offer input, and I want them to listen to her.
In any case there is a hopelessness in hearing about his behaviors, a chronic helplessness I can’t abide. And so I play Bittersweet again and again and allow myself to kind of melt into the song. It may be a little crazy, but I figure it’s innocuous. Like John Lennon said, “whatever gets you through the night, it’s all right.”
Also strange: for the first time in as long as I can remember, I have no pets. A month ago I had to euthanize my sweet old Gracie cat, and the house is empty without her. Now it’s just me and Bittersweet, and with Daylight Savings gone too I have to force myself to stay up some nights. I’m not depressed, but when you live alone there’s no one to keep you to any normalcy, so I eat and sleep on my own (sometimes weird) schedule. I’m grateful to have another season of Rock Voices to focus on. Last night was solo auditions and I tried out for 3 songs. We shall see what comes of that. And a few weeks ago I tried reading some of my poetry for the first time at Caffe Lena’s open mic night; since I didn’t get booed off the stage, I call that a win. I reckon the more I can drag myself out of the house, the better.
Jonah was happy on Sunday, which was a beautiful 60 degree day for our visit. One of the staff came with us for what has become our routine – walk to Pizza Works where Rachael greets us from behind the counter. She knows what Jonah wants – a slice of meat lovers’ pizza with blue cheese on the side (in fact the first thing Jonah says to me on Sundays when I walk in the door is “blue cheese?”) — and she is very kind to us. After pizza, we walk back up the street and past Boo’s house to Stewart’s for an ice cream sundae (with “shprinkoos” and M&M pieces on it). The person who’s usually there making the sundae is also very kind to us. I need to ask their name next time. It makes such a huge difference when people are kind to us.
Thank you, Rachael at Pizza Works. Thank you, sundae maker at Stewart’s. And thank you to the direct care staff person who walked with us, risking life and limb.
After ice cream we walk back towards the house and past it again to a side street, leading to yet another street, where we have even more walk before finally returning home. I always say Boo would walk to California if we let him and I’m not sure that’s an exaggeration. Our outing, however, only works when they can send someone to walk with us. This did not happen the previous 2 Sundays, both beautiful days – so, much to my disappointment, I had to bring the food to him and we walked the hallways of the basement back and forth in a much-diluted version of the routine. I know better than to attempt the outing alone but I almost tried it anyway. Almost.
I wanted to write here more often over the summer, but I got sick and then life got busy. Since June I’ve been exercising and eating better – lost 20+ pounds off my “menopause belly” and am now mostly working on getting toned and healthy. It’s been very good for my mental health, too. For a while before the kidney stone saga, I was obsessed with getting steps in. I wore my smart watch on my ankle and woke at 5:30am to walk and walk and walk, to the point where I was averaging 25,000 steps a day. Unsustainable in the long run, but effective for burning the calories off. Anyway, now I’d like to stay strong so I can keep up with Boo for a long time.
We wish you autumn-into-winter days that are peaceful, happy, and much more sweet than bitter.
