. Fall in a heap, exhausted. Then get up, clean up, and do it all over again.
. There is joy in this. This “living” we do. No matter how sweaty, or dirty, or ugly, this “living” is a beautiful thing.
. There is no ‘give up’ here, no ‘quit’ , no ‘over it, no ‘packing it in’.
This is where every. breath. matters.
. DO YOU HEAR ME?
EVERY BREATH MATTERS.
Right now, in my little trailer in the middle of down, down, way down and out USA, I am deciding to care. I am deciding that my sufferings will amount to something, that all this silence and fear and worry in my heart will be done away with, that with this breath of life my Creator blessed me with will be used to help someone else live, too.
. I know I’m a rag-tag mess. I can’t think straight most of the time, and there are days I can’t leave my house. I am oppressed by an illness that tells me I don’t have it, and that feeling like I’m sick is a sin. I’m not exhausted, it tells me, I’m lazy. I’m not in excruciating pain, I’m a dope seeker. I was not abused, assaulted and raped, I was promiscuous.
. I am here, I am now, and with my God’s help, I will reach out to someone else. And with my God’s help, I will not believe the lies. Instead I believe the Bible, God’s own letter to me, and to all his children. I want to live.
Cant wake up. I feel like I am sick inside, hot and cold, sticky and uncomfortable one minute , all dry and freezing the next. I feel like I’m going thru withdrawals, and twitchy, jerky-but from what?!? I feel that it is the Benign Paroxysmal Positional Vertigo that I have endured since a series of concussions in 2013…BPPV is a type of vertigo from crystals in your inner ear becoming dislodged from a blow or hit on the head, and generally rights itself after 1 Epley Maneuver, which a trained pt performs.
This is Sooo frustrating, because I don’t have a pt here, and the condition makes me so discombobulated and groggy that I can hardly go anywhere!So I have attempted the maneuver 4 times on my own, with no success it seems, and keep falling asleep everywhere I sit down. The other wrinkle to Post Concussion and TBI cases like mine, is the head injury caused a short-circuit from brain to diaphragm, so when my shuts down for sleep mode, I quit breathing. “Sleep Apnea!”, you exclaim, brandishing a Bi-pap and Mask… (oh, I just want to interject that I have had brief BPPV free days when my excelkent PT Tom helped me for 2 years… he would do the maneuver when needed and I balance trained and did exerciwes regularly)
So, going back to the CENTRAL Apnea, I have been sleep studied a second time since moving here, and had my poor septum done again, and the Nose Guy (ent) who performed the surgey said, “If you cant breath thru this nose then I dont know what else to do for ya!”
He checked out my sleep settings on my machine, said they were fine and sent me on my way with a script for little nasal pillows instead of the “Alien” mask I wear now.
Insurance doesnt pay, etc, etc So I go to bed, fight with the Mask until I’m finally exhausted and angry, then I drift for 20 minutes before ripping the parasitic thing off my face , flinging it wildly across the room, knocking my water off onto my med box…This causes me to rise up like a crazed Mama Kodiak, comforter flying like a war hero’s cape, kicking my medicine box across imaginary goal posts, with different colored pastel tablets raining down, as if confetti!
After this nightly comedy of errors and arrows, I give up and decide to paint faux chintz wallpaper onto my bedroom walls. At 4AM.
Is it any wonder I am tired all day?
Oh, the truly funny part is that I went to bed at 7pm. so that I could be alert and well rested today!!
It has been AGES since I have been here, it seems that when I am on fire with my visual art , my written art suffers. Time is a factor, when I have 5 projects going at once, the voices in my head are rather subdued, because all the poetry is oozing out of my fingertips onto canvas, paper, metal, wood and wall. As has been the way this past year, with some success…
I had hoped top be able to exist on my earnings from my visual art, and while I am not there yet, I am making a dent. I have had one of my paintings put in a permanent collection, I have been highlighted with my artwork in a video for the nearby Mental Health Facility! Woohoo! I find that very satisfying and amusing all at the same time! I should have demanded money, but they didn’t offer, so I used it as a photo op. I gifted them the painting you see here, although I still have it here at the house , because I wasn’t satisfied with it… (never am, you know). I will have to take it in soon, to keep my word… and I need to see my wonderful therapist because memories are pushing their nasty little heads into my reality…
It’s the “holidays”… The time of memories… poo poo, bluck, bluck…. memories have too much power over me, so I guess I just stuff them. Me, the one always saying that “you have to let it out!” I let it out too much, which gave too many people too much power over me, too many ways to rattle my chain. I have been solitary, and sequestered here, and while it may be a little too much solitude I am glad to have my space. True, my sleeping habits could use improvement, but then I am a work in progress…
Just for today I don’t have to mourn. I can just be ok.
Life in a funeral parlor is very boring. Father sleeps all day now. He was always a napper, and absolutely loves to sleep. Perhaps it was an escape for him years ago, a way to avoid dealing with Mom or us kids.
A big part of his nappiness is sleep apnea, which wasn’t even heard of years ago. In the 1990’s Mom convinced him to see the doctor about his constant sleepiness, and he had a sleep study done. It was found that my Dad has one of the most severe cases of sleep apnea that the doctor had ever seen. It was incredible, the number of times he quits breathing in an hour. So finally we had an answer to why our father was always trying to “catch up” on sleep, making us tiptoe about the house each day when he was lying down. I coined the nickname “Sir Nap-a-lot” for him, which he did not find amusing, but we all thought was very funny and accurate.
Fast forward 50 years, and here if my Dad now with severe Alzheimer’s and Dementia.
From the research being done insomnia and lack of restorative sleep are key factors in the onset of Alzheimer’s disease. This is no surprise to me, having watched my Dad lie on the couch all hours of the day, waking more exhausted than before. Now his eyes glaze over twenty minutes after he gets out of bed, it’s all he can do to make it back to his room or over to the couch. It is especially bad after he eats, which has made me wonder about his blood sugar. He was prescribed one of those machines for people with Apnea, but he never, ever used it. He is totally non-compliant when it comes to stuff like that.
So, here I sit in this quiet house, dogs lying about on floor pillows and blankets, cats on beds,chairs and couches, and Dad laying wherever a space can be found-out like a light!
Do I nap? Oh, I try. I tell myself I should try to live by Father’s schedule. so that I am not falling asleep when he is up and about. That doesn’t seem to make me sleep, though. I lay down and shut my eyes,but the mind races and the pain lies under my skin like an ever present organism, draining my life juices away. my nap time is spent turning this way, then that-stuffing pillows here, moving blankets there. Petting dogs, pushing cats off the bed, always listening for a movement in the next room.
I lay sometimes on my new (used) big red couch, such a pretty piece, and a great napper, and now and then I drift away. Dreaming of yesterdays, when my body moved and I was loved. Dreaming of giant grasshoppers eating my zinnias. Falling asleep to the sound of my silent prayers, prayers for God to send me an angel. An angel to stand over me and keep the bad things away while I rest.
When I awaken, it is always time to perform a task, feed a father, a cat, a dog, a bird, a plant. Wipe a hand across blurry eyes, beg a brutalized body to creak to it’s sore feet. Teeter off, half bent over, to fry a sausage, crack an egg, sweep a mess, say a pleasant “good morning!”. He looks vacantly past me into the blazing day, sips old coffee and says, “I didn’t sleep at all. I’ll be going back to bed after breakfast. After lunch. After dinner. After snack. After everything, I will be going to bed.”