Well hello. I just felt like updating on some significant life events since I’ve last posted. I’m not going to make promises about keeping up with this anymore, nor am I going to complain about the quality of my writing. It’s getting old.
Otherwise I’ve been writing quite a bit actually. For the past year I have been working on a short story which I recently realized is very flawed. I’m not going to call it “bad” because it’s not finished. It just needs a lot of work and I realized I needed to step away for it for a bit, come back later and view it with a fresh perspective. I’ve never worked so hard or so long on anything in my whole life and whereas I very much want to finish it, I’m afraid it’s just a time suck at this point. My thought is that maybe I can just take away that it improved my skills and methods of organization and just be happy with that. Again, I’ll decide when I come back to it.
Funnily enough one of my significant life events occurred almost immediately after Artscape, which I wrote about not in the last post but the post before it, which was in essence my last real entry really. The atonic seizures (the ones where I go limp like a ragdoll) became so common that every time I stood up, I would fall down.
So, I just stayed in bed, only getting up to go to the bathroom. Unfortunately, I didn’t always make it to the bathroom and would piss myself. On top of that I went a long time without bathing and developed sores. My elderly mom was taking care of me so there wasn’t much she could do in helping in that particular area.
Otherwise she was very caring and sweet. She and my Trouper, who was always by my side almost immediately after I would fall. Sometimes he would bark, and I had to believe he was trying to alert someone as to my predicament.
I was in that bed for roughly a month. I slept a lot, but I remember that even when I wasn’t sleeping, I wasn’t really doing anything else but lying in bed. I wasn’t reading or on my computer or even looking at my phone. I might have been depressed, scared that this was going to be my life from here on out- I’m not sure, but what I do remember is that life became very simple. For example, I discovered I liked my ginger ale with a squirt of Mio (water enhancer) and my mom would happily oblige. So, every now and then she would come into my bedroom with my drink of choice and I would look forward to that. That was the highlight of my day. Then I would just go back to staring at the wall or maybe sleep…
As fate would have it, when I turned up to my neurologist’s office in a wheelchair, he realized the medication he’d been upping in order to combat my symptoms was actually the cause of the symptoms. So, we nixed the Depakote and almost immediately the drop attacks went away.
I don’t think I’ve had a drop attack in at least a year as a matter of fact. I think it’s a lesson in hope. When things seem so dire, you never know how quickly the winds can change.
Of course, there’s no rest for a the wicked. One day during PRP I was sitting through a class, admittedly not paying a lick of attention, when I felt a particularly potent spell of Déjà vu followed by an inexplicable certainty that I was about to have a seizure. I just sat there, my eyes darting around the room, not sure how to handle the situation, when my back arched violently, and I fell back against the chair and started convulsing.
Here’s the interesting part: although from the outside it might have looked like I was having a classic tonic-clonic seizure (basically what you most likely think of when you think of seizures) I was conscious for several minutes of it, although unresponsive. I therefore got to witness the other patients staring at me as they were ushered out of the room, saw the faces of the recreational therapists as they approached me with concerned expressions, heard the nurse place the call to the paramedics- but was unable to communicate. Then the details started to slip away.
Due to the fact that I was conscious for about half of it, it was considered non-epileptic and in time when I would occasionally continue to have this type of seizure, I would mostly find it more of a nuisance more than anything.
In fact, in my opinion usually it’s worse for the person who has to witness it than for me and I end up doing damage control after it happens. It can be heartbreaking when my mom is at my bedside looking at me with such concern and helplessness. I’ll reach up and touch her face and assure her I’m fine after it’s over.
It can be embarrassing, of course, given the situation. One time my family and my brother’s girlfriend and my other brother’s fiancé all went out to a fancy restaurant to celebrate Christmas. We were just about to stand to leave when I seized. None of the party except for my mom had seen me in that state before and of course being in public like that is always embarrassing. My brother gripped hard on my arm, which I thought was sweet, but what I really wished he’d done was pull down my little black dress to cover my sexy red panties. Dad don’t need to see that.
I do have a favorite seizure, though, which I know is weird. Well, it’s the scenario actually that makes it my favorite. My dad was kind enough to bring me to Macy’s to get a new mattress as my current one crapped out on me. (I’ve been sleeping on my couch which is no bueno.) I was lying on a bed on my right side, laying as I would when going to sleep on my ideal mattress, when I felt it coming on. It was standard convulsions for me, the kind I’m used to, where I’m not that worried and I just sort of wait them out. I flopped on my back and after about three minutes it was over. After I caught my breath I said to my father, who had rushed to my side, “What luck.” Of course, he thought his daughter’s brain was addled. I went on to explain that if you’re going to have a seizure in public, laying on a mattress in a mattress store has to be one of the better places you can have it.
I ended up selecting that particular mattress and whenever we would refer to it, we would call it “the seizure mattress.”
“Tell me again which mattress you wanted.”
“The seizure mattress.”
Now, I don’t know if I spoke much about my weight in this blog, but it’s been a lifelong struggle. After countless stabs at diet and exercise routines I eventually decided weight loss surgery, specifically lapband surgery was the way to go. It seemed like the best option at the time; I was young, had no plans on getting pregnant, it’s reversible. So, I had the surgery.
Well, I lost some weight at first, maybe 40-50 lbs, but it came back and then some. I would later learn that lapband surgery was largely no longer considered an effective weight loss tool and wasn’t even being performed by many surgeons. So, I decided to bump it up a notch and commit to gastric bypass surgery.
During routine tests they discovered the lapband had perforated my stomach, which I couldn’t even feel (I thought that was odd). The lapband would have to come out anyway but now the surgery would be much more complicated.
I ended up not getting the gastric bypass due to a technicality. I was supposed to attend 6 consecutive months of nutrition classes. I missed the last one because I was in the hospital after my first myoclonus seizure, the first one I had in PRP. The insurance company was rather unforgiving about this.
Somewhere in all this mess I reached the highest weight of my life. 366lbs. Aside from the shame and the low confidence and the low energy and the stigma and the sluggishness and the general crappishnes of it all, it was incredibly painful. I had to stop shopping for groceries at Giant and start shopping at the more conservatively sized (and more expensive) Graul’s just so I could get my shopping done faster due to the pain in my back and still by the end of it I was clinging to the side of my cart in agony at checkout.
The tipping point. One night I had to go to Giant for some reason (Graul’s must have been closed) and despite my pride I decided I’d have to use one of those mobility scooters. The ones that while I know people with mobility issues are in need of, I can’t help but picture the stereotype of morbidly obese people at Walmart. I was just trying to get through the store without being seen by anyone when I pass by this man. He was a tall, well-dressed, handsome, black gentleman, who honestly looked out of place he was so attractive. Like he shouldn’t have been standing under the florescent lighting standing in the vicinity of the cup-a-soup packaged conveniently in bulk. I passed him with my head down, trying to be inconspicuous. He laughed, “Can’t those things go any faster?” I was mortified and tried to get out of his way as fast as I could.
He immediately started apologizing, realizing how his comment could be misconstrued but the damage was done.
I never wanted to ride on one of those scooters again. More than that, I wanted the pain to end, physically and emotionally. At some point when you reach a weight like 366 lbs you lose hope that you can lose the weight, or you feel like you just don’t have it in you. I just needed to know there was no other choice. I was going to be miserable if I didn’t do it.
So far I’ve lost 132lbs! I’m 4lbs away from my current goal of being 230.
I have pictures!
Now onto something very sad. My dear corgi, Trouper, of 14 years old, died of cancer on October 21, 2019. It’s an awkward thing to say, but his death went pretty smoothly. I had so much anxiety that I would somehow inadvertently cause his death, that it would be my fault or that I could have saved him. He would choke on something I left out, I’d find him unconscious and couldn’t perform CPR, he would have a horrible wound, but the Uber driver wouldn’t want a bleeding dog in his car, etc.
Basically, one day he couldn’t move his bowels so I took him to the vet, he got his diagnosis- his colon had collapsed and he wouldn’t have much time. That night he couldn’t even sit down, and he was obviously in a lot of discomfort, and I knew he was suffering, so I just spent the rest the night with him, me comforting him, him comforting me, and took him back to the vet in the morning.
So, he didn’t suffer for very long, it wasn’t something I did wrong, and it was clear that it was his time. And he lived a good lifespan for a corgi. And I’d like to think a good life in general.
I held my boy in my arms and stroked his fur and told him what a good boy he was. How much I loved him. And he went to sleep like that. For some time, I continued to pet him. The small gathering of fur behind his ears, his smooth saddle, his fluffy bum.
When it came time to leave, I tried to place Trouper’s head down respectfully, but his head was so limp, too limp. I then kissed his head and said good-bye.
I put the brown beautifully carved wooden box his ashes were enclosed in on a table by the window, which was his default position, looking through the blinds out on the garden.
I’d have to make another post to talk about what Trouper means to me. He was a good boy.
In happier news, days after Trouper’s death my father got a call from Aaron (middle child brother) as my mother just happened to be walking in the door to the house. Dad put him on speakerphone, and he announced he intended to propose to his girlfriend, Denice! After some congratulations and squealing from the women in the room (or maybe just me) the first question was when/where this was going to happen. Japan, in around a month, was his answer.
Aaron and Denice travel a lot, so it wouldn’t spark her curiosity, but we had to know- Aaron, how are you going to be able to handle holding this secret for a month?
In the end, he said, the worst part was the last 30 minutes before the proposal. Aaron had arranged to have a photographer surreptitiously capture the moment and wanted to be in a specific scenic spot, but there were tourists milling about getting in the way. So just making it happen as he wanted it to was a bit of a struggle. And, of course, he was about to propose, which he said made him unexpectedly nervous. He said the moment he got down on one knee everything he’d intended to say became word garbage.
But who cares because she said yes!
Given the current climate, they had to push back the date of the wedding, but they’re hoping that things will have improved by the summertime. They’re thinking of doing the rustic vineyard thing. I can’t wait! Nothing like a wedding to lift spirts.
There are some things that have developed in my own love life, but that might deserve its own post as well.
It would be nice if I could keep up with these posts, but we’ll see.
Three Times the Charm City 