Kage Baker did give me a few choice bits of advice at the end of her life. It was that lovely afternoon that she spent surrounded by friends and family, with an unseasonably warm January wind coming off the ocean directly into her open bedroom window.
Between her nieces curled up like kittens on her bed, and her sister Anne reminiscing with her; our dear friend Wayne plumping her pillows and helping her sit up (he turned up unexpectedly in a clear case of hero-radar, knowing he was needed), and Harry singing in the corner of her bedroom – Kage and I didn’t have a lot of time together, alone. Mind you, we had spent the entirety of the rest of her illness on our own – but that weekend was supposed to be the first of her “At Home” events, where she could gradually say her farewells.
We thought we had weeks to get around to the pithy advice and such. Surprise! She fell asleep as the sun westered, and died long before morning.
But she did have time to advise me not to live alone; to take care of my health; to lay off the pork rinds and eclair jags (don’t judge, Dear Readers); and to do whatever I had to in order to avoid falling headfirst into the Slough of Despond.
“You get depressed and then you give up,” she told me, poking me in the ribs. “Don’t do that anymore. It’s better to kick someone’s ass than to give up! And listen to Kimberly – she’s on your side, and fierce, and a lot more practical than you are!”
She was right, of course. And I endeavored to follow all that good advice – well, not the eclairs, but the pork rinds for sure. But the last year was too much for me.
It was too much for everyone, Dear Readers. We all spent portions of 2020 howling at the stone walls, rattling the adamantine bars of our cages. I just happened to spend most of it warehoused in a Skilled Nursing Facility, battling with my caregivers to get out of that sanitized prison. I had to become a thoroughly rotten patient in order to be permitted to try to walk, to get off the ventilator, to eat solid food – I think that Kimberly and I literally annoyed my doctors into letting me go home at last. Never, ever send your relatives off to be confined, if they are even slightly alert and alive- never abandon them, never leave them to fight alone. Without Kimberly and Michael, I would never have escaped.
Considering that the doctors at Glendale Memorial told Kimberly that I was completely gone in my post-cardiac surgery coma and she should consider pulling the plug … I don’t think I would be alive without the steely determination of my family.
But I didn’t die, and I learned to walk and talk and eat again, and I have been home for months now. Infuriatingly, I am still wearing a damned tracheotomy tube down my throat, that irritates my trachea and produces tons of loathsome, sticky mucus; and I cannot get a good bre4ath, because I am trying to do all my breathing through a plastic drinking straw. Literally, the inner canula of my trach is the size of a straw. So I get gaspy now and then, and I get recurring pneumonia from crap getting inhaled into my lungs, and I sound like a bad AI when I try to talk.
And no one would even consider removing my trach.
I hate it. I despair. Increasingly, I find myself about to give up, feeling that I will never be right again, that I will be a burden on my family for as long as my miserable life endures.
But, Kage was right. I cannot give up fighting. And Kimberly has stood by me through all this, even the moments like yestreday when I collapsed in very unattractive weeping. Crying is dreadfully ugly when you can’t sob; you just leak tears and make suffocating duck noises, while using up a mint’s worth of Kleenex.
But lo! Just as I was subsiding into self-pitying snuffling, my pulmonary doctor called. Kimberly took the call because I could not speak. She explained how very unhappy I was, only she did it without sounding like an hysterical dish washing machine full of custard … and my doctors (plural) understood! Finally! They told her they actually did want me off the trach, they were just worried it would be bad for me. But Kimberly managed to make them understand that I was already ready miserable enough to be losing the will to live, and …
A miracle happened!
On Monday, I go into the hospital to have the trach tube removed! It’s being done on an in-patient basis in order to keep me alive if we are all wrong and my lungs collapse as soon as the trach it out. (Which no one actually thinks will happen, but …) I have sworn to behave no matter what is needed – as long at it eventually leads to a trach-free life. My doctors agreed to their part, too. They even apologized for not communicating properly to me that they were gonna take out the tube the whole time …
Yeah, right. But someone listened! Someone understood! Mostly, that someone was Kimberly, but she was able to explain it to my hesitant doctors in such a way that I am no longer on the Ignore This Old Woman list.
So bear me in your thoughts, Dear Readers. Keep Kimberly and Michael there too, my indomitable bodyguards. I shall spend this week practising closing off my trach to breathe without it – I can actually do that, Dear Readers, which means I CAN BREATHE!!!
Kage was right. Kimberly was right. I am the luckiest woman on life with the virtue and ferocity of my sisters. Oh, frabjous day! Calloo Callay!
Everybody chortle in joy!
It’s so dusty over here, makes my eyes leak. this is Such. Good. News. Onward!
Oh, all the best! What a great day that will be. And yes, to the vigilance of your family. It’s really important to have vigilant others, when you’re not well and unable to speak for yourself.
This is wonderful to read. I’ll be thinking of you on Monday.
Oh frabjous day indeed! What good news. And kudos to you and your inimitable family. Kimberly and Michael more than deserve all of our thanks for keeping watch,standing guard, and coming to the rescue when needed.. Long may they and you waive!
So happy for you and I will send all my juju your way! I know how imortant it is to have an advocate that really understands your need and can communicate that to the doctors. Bless them!
I had no idea what you were going through, and am very glad that you are coming out the other side.
I am fer sure ‘chortling in joy’ that you are having your trach tube removed! That’s awesome.
If there’s any way I can be of assistance in the near or far future (or anywhere between), I hope you’ll let me know. Please.
Best. News. Ever!
Shall be lighting votive candles for you all through the weekend and long into Monday.
Praise the Goddess. May you breath easily hence forth.
Sending all the fury I can muster (which is considerable) to augment Kimberly’s and your own in this tube showdown. Tell those doctors I have my eye on them… Semper pugnare, baby.