Bloggetty Blog

So what is this all about? What am I all about? How did I get here? Two years and eight months later I’m still struggling with the big questions. You would think I would have figured it out by now. I do know I need help. We keep three people employed part-time rotating in and out of the house as my caregivers, and in a way if this event is about anything besides me, it’s about them, because without them, I am just slab of Larry. Sponge job no pants. These are the new members of our family. Someone feeds me breakfast so I don’t get sick to my stomach from all the medicine and supplements I  take in the morning. The caregivers help me go to the bathroom, check my skin for sores, manipulate my limbs through range of motion exercises, bathe me, change my catheter, shave me, flush my bladder, dress me, brush my teeth, put my sunscreen on, transfer me from the bed and into my power wheelchair, set me up straight, put my shoes on, get my elbow pads and wrist guards on, put my hat and sunglasses on, and escort me out the front door. That’s probably not half of it, and it takes all morning.

I never would’ve made it out of the hospital at all if it weren’t for Jeff. He has been working at Craig Hospital so long that he commands a great deal of respect from the rest of the staff, the    nurses, and the doctors. He is often called on to help train new hires. Jeff’s the man who taught me how to be a quad. He was a tech mostly working night shifts whenever he wanted, very calm, very efficient; and we just sort of connected. One of the great ironies for me as a patient at Craig, was if I hadn’t broken my neck I never would have met any of my doctors and nurses and techs; many of them snowboarders, mountain bikers, kindred souls in many ways. We had so much in common even though we would never do any of these activities together. Anyway, Jeff is my consummate “Brother from another mother”. He lived with us when we came home two summers ago, he helped set up the house and get us into a routine. Jeff helped interview and hire our  original caregivers. He understands my wife, which is sometimes more than I can say for myself; and she tolerates him, which is sometimes also more than can be said about myself. He is there for me in a way that no one else on earth is. Until I met him, I would never have used the words meticulous, fastidious, and chews tobacco in the same sentence to describe anyone.

Kristie is 25, a 6 foot African-American lesbian who is the most wonderfully comfortable person in her own skin as anyone I’ve ever met. She has a brilliant smile and she loves to wear my hand-me-down clothes. She’s been working here two years; a remarkable fact. Most disabled people who require the help of caregivers do not keep them for long. The good ones are all taken. She had limited experience with spinal cord injured patients; most of her patients were geriatrics. The very first day she came to work as a trainee my blood pressure fell off a cliff and I passed out while she was trying to get me ready for a shower. Her next full day of work was at a Manhattan Beach party. We have been places and done things. She sometimes does her job with this studied care of someone who wants to make it look easy. Her personal life can be interesting; which is to say hair-raising, much of the time. For Fifth Amendment reasons, and/or to protect the guilty, I do not feel at liberty to tell anyone some of the things she has shared with me. I can say that when she’s driving, she’s channeling a NASCAR driver on a Roid rage.

Liana is in her mid-30s, a Ukrainian fitness trainer/nursing student who emigrated here about eight years ago. She was a nurse in the old country. She has a lovely almost lilting accent and a nice butt, a sunny sweet disposition and she’s slightly deaf. She is also very fastidious, almost to her detriment; everything she does takes just a little longer. She is enthusiastic about helping out around the house, she’s one of those people who goes out of her way to find something to do rather than wait to be told, which around here can be anything from doing the laundry to picking up dog shit. This is particularly wonderful as far as Mrs. Dubey is concerned, who craves the cleanliness and orderliness Liana brings to our home like an alcoholic’s next drink. She likes to cook and market, and is good at it. Liana tolerates our cat Daisy, who is old and grumpy and occasionally incontinent.

Salvadore just turned 36. He is a fraternal twin, a hard-core basketball fan, likes corny Latino soap operas, and is a serious full-time Facebook addict. He stays in close touch with the 300 or so kids he went to high school with, who are scattered all over the globe. He has caught on to the social media phenomenon and its vast potential for self-promotion. He’s making T-shirts with the barcode graphic on them with the letters T P V V M C or “TePuedeValerVergaMiCariño“, which loosely translated means “you don’t give a fuck (thought) about my love”. Don’t ask me why, he’s obsessed. And people are buying these shirts and taking their picture wearing the shirt and posting it on his Facebook page. He eats like he’s starving sometimes. Several times a day he looks at me with sad eyes and says “oh Mr. Dubey, you crazy”. He is well read and literate, from community college and the school of life. Even Sal with his burly swagger and big head and vague resemblance to Shrek cannot safely walk down the streets that he comes from. He can be very emotional, he sends money home to his mother and worries about her even though he complains about it.

This slightly wacky trio comes and goes according to their school schedule and their social lives; they walk the dog first thing when they get here in the morning, they put me to bed last thing before they leave. Sometimes they’re here for very long days, slightly bored but ready to jump in at a moments notice. It’s annoying never being alone, it’s lonely when no one’s here. They make it possible to attempt a normal life, whatever that is. The fact of the matter is, this is a new part of my daily routine for as long as it lasts. Two of the hardest things for me to say have been “No”, and “I fucked up”; but the really difficult thing to say is “I need help”.