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My Wheel Life

The stories of how I got this way, and the motivations that keep me rolling.

I Am A Robot

robotNOTE: I wrote this piece about my daily routine many years ago, before I was brave enough to share my disability candidly and before I met my husband. A lot has changed since then (like I no longer live alone and I no longer watch the Today Show, but CBS This Morning with Gayle King, Norah O’Donnell and Charlie Rose. Hi guys!). Still, I can recall these days. And I can see how far I have come.

Each morning, I wake up on my side; I have not moved from that position the entire night. My mouth is dry. I reach for the jug of water that is within arm’s reach, gulping the water through a straw. Though the splash of cool liquid feels good in my mouth, it does nothing to relieve my fat, swollen tongue. I grab – actually it’s more like fumble – for the remote lying next to my cell phone and turn on The Today Show. I wait for my morning Help to arrive.

I hear the door open – The Help is here. She walks into my room and then straight into the master bathroom. I listen to see if she washes her hands. She does – this is good. I hear what sounds like The Help collecting the smaller urine bag from the sink. She then brings it to me so she can exchange it for the larger urine bag used at night. She must use alcohol wipes in the process. It’s important to be sterile. A green tube connects my bladder to these bags, and also acts as a portal to the outside world. There is always a high risk for infection. Alcohol wipes. Infections.

After the ceremonial bag exchange, The Help takes away the large pillow from in between my knees, then removes the small pillow from underneath my ankle… or more like two inches above it. Using two hands, she rolls me to my back. I feel pain. It’s my shoulder. I think about how long I should wait before I take Tramadol. If I take it too early, I’ll crave more the rest of the day. If I take it too late, I’m irritable. Regardless, the 50mg of Tramadol makes me dehydrated and sometimes constipated. But not Advil, so I’ll take that first. And then pop the painkillers as needed throughout the day. An MRI shows I have torn a tendon in my shoulder – the one that connects the arm to the rotator cuff. It’s rumored I need shoulder surgery. For now I’ll just medicate. I hate hospitals and the germs that infest them.

It’s time for my morning leg exercises. I don’t want leg atrophy. I want to look normal, or as normal as woman who has been paralyzed for ten years can look. I want to look like an able-bodied woman who is sitting down. This will take dedication, patience, and ultimately around fifteen minutes of leg exercises each day. The Help stretches and exercises my legs while I lay on my back and watch. Sometimes I give direction; it’s important to exercise in good form. Some nurses are better than others.

Every other day is a bowel program day. Today is that dreaded day. The Help rolls me to my left side and replaces the pillows between my knees and under my ankles. It’s important to protect my bony parts at all times. I cannot chance getting any red spots, which eventually can lead to bedsores. She gathers the supplies: Wipes. Vaseline. Gloves. Enema. Under pads. She will use them in the reverse order: Under pads. Enema. Gloves. Vaseline. Wipes.

After fifteen minutes, The Help physically checks to make sure there is no more poop. There is. Five more minutes and it’s clear. Time to clean up: Wipes. Wash cloths. Water. Soap. Remove the pillows, roll me over. I think, Should I shower today? Can I handle another another fifty minutes of giving instruction? Not today. I decide what to wear. I describe it to The Help without looking into my closet. She will grab it while she’s in the closet retrieving more supplies: Gauze. Neosporin. Paper tape. She will remove the old gauze from around the super pubic tube site (that’s the medical term for where the tube goes into my bladder). She checks the site for signs of infection: Redness. Puss. Swelling. Discharge. There’s none. She wipes around the tube with a baby wipe and places a dab of Neosporin on the area. Add gauze. Secure tape. I am ready for underwear. I am ready to get dressed.

I usually wear a dress or a skirt; it’s what’s practical. I sit up and attempt to suck in my paunchy belly. If my abs worked, I’d do sit-ups. But they don’t so my belly looks like a child’s, round and robust. The Help disagrees with me. She pretends my paunch doesn’t exist. “You’re too skinny,” she says. If she were talking about my atrophied legs, I’d believe her. My legs are too skinny, but still thicker than most other wheelchair users. I know this because I am very competitive. In one flailing swoop The Help throws the dress over my head, and eventually pulls it down until it scoots under my bum. Finally, I am dressed. I am ready for my power wheelchair that is plugged into the wall, charging.

The Help unplugs the 300-pound machine and wheels it over to my bed. Once in place, she locks it. Together we move me from the bed into the seat. I do this by pushing down on the bed with my arms and sliding my butt over into the chair inch by inch. She holds my legs and my dress together so that they don’t get in the way. She must pay extra attention to my legs; they can become cumbersome. After I plop myself into the chair, she places my legs down from the bed and onto my wheelchair foot plate where they will spasm and move up and down for approximately thirty seconds. Their movement is not a miracle – it’s annoying. I need to put on shoes, which weigh my legs down. My shoes are one size bigger than my feet requires. They must be loose. No pressure points allowed. I know my feet will swell by the end of the day – poor circulation. I like sandals. I like to see all parts of my feet at all times. Inspect them. Count my toes. I’m halfway ready to start my day. It’s taken at least forty-five minutes to an hour of teamwork to get this far. I am halfway there.

I roll into the bathroom and park myself underneath the sink. Looking into the mirror, I don’t see the same person I saw last night. I see bedhead. A mohawk. I must wash my hair, but later. First, I must wash my face, then dry it and smother it with SPF 15 lotion. I do not want skin cancer, nor do I have time for it. Should I bother with make-up this morning? Not yet. Maybe not ever. It’s too early to decide. I make my way to the kitchen sink. That’s where I will wash my hair. The lotion on my face reappears in white globules thanks to the water that’s been splashed on my face during my hair wash. I roll back into my bathroom and stare into the 10x mirror. No one should do this. It’s horrifying. Today I will wear make-up, but just blush and mascara. I massage my ears with Q-tips. This feels nice. I brush my short hair to the right side. On cue, The Help sprays it with hairspray while it’s wet. I will brush it again later. No Clark Kent hair; it’s tacky. I’m a lady. I’m wearing a dress. And I’m finally ready to start my day. It’s been over an hour and a half since I first opened my eyes.

Finally The Help leaves.

I am all alone.

I check my email. I lean to the side of my chair and lift my butt out of the seat. This is called a weight shift. I check Facebook. I do another weight shift. I fuck around on Google. Weight shift. I must do a weight shift every thirty minutes for the rest of the day, and for the rest of my life. Weight shifts are important – without them I will get red spots, then bed sores, even though I’m not technically in a bed. I should spend fifteen to thirty minutes of my day doing weight shifts, or hovering over my cushion, but I’m not that consistent. I just intentionally move around in my chair all day, leaning forward, to the side, scooting my butt forwards and than backwards. People say I look antsy. I am antsy. I cannot physically move three quarters of my body. Still, I try.

I cannot cook for myself. I can, however, use a debit card. I meet a friend for lunch. I look at my plate and bombard my brain with questions.

Am I being healthy?

What is in this food?

What is the kitchen like?

Did the chef wash his hands?

Is this food going to upset my tummy? Like, am I going to shit my pants?

I ignore my brain and take my chances. I eat just enough to make the hunger pangs go away. I find things to do in the afternoon. I write. I teach. I volunteer. I go outside to read. I do anything and everything to keep my mind busy and occupied. But I must not be too committed. My body could fail me at any second. Bowel accident. Bladder trouble. No urine. Not good. I find more ways to stay busy. I work out at a gym. Thirty minutes on the arm bike. Weights. Strengthening bands. I’m still wearing a dress. The outfit I choose each morning must last me the entire day, unless I can find someone to help me change later. No, thank you. That frankly is too much work. That’s where I draw the line.

I help friends who need help studying, moving, and relieving boredom. I run errands. I go to doctor’s appointments. I read more. I write for my blog. I think about dinner. Dinner? Where can I get dinner? Does anyone want to go out to eat with me? Not today. I’ll go to my parent’s house. They always make dinner. Afterwards I could go out to a bar. Or I could go home and watch TV. Since hangovers make my morning process longer, I go home and wonder if anyone else is as self-absorbed as I must be, and I watch TV.

When I’m ready to go to bed I call The Night Help. This person is usually different than The Morning Help. It’s nice to see different faces. Upon The Night Help’s arrival, I start my nightly routine, which is the morning process in reverse: I wash my face. I dry it. I put lotion on without sunscreen. She takes out my earrings. I look into the 10x mirror. Nobody should do this. It’s horrifying. I pick my face. And my nose. I take my medicine. One 4mg tablet of Zanaflex for body spasms. One 10mg tablet of Ditropan XL to relax my bladder. Two cranberry pills. One Once-A-Day vitamin. Compared to other people with my injury, my daily pill intake is small. Still, it’s too much for me.

It’s time to leave my wheelchair – aka freedom machine – and scoot myself back into bed. I dream about how I used to fall into bed like the people in those old Nestea commercials. Remember those? When the actor opened his arms wide and fell back into a pool. That would be so nice. Instead of taking the plunge, I drive my wheelchair over to the side of my bed and parallel park beside it. I raise the right arm of my chair. And with help, I transfer into bed, scooting inch by inch. My legs spasm and fight against me the entire way. I fly back into the bed, not gracefully at all. Nothing like the Nestea commercial, more like the quickness of a slingshot. I surrender, only to have to be dragged back up to a seating position. I must slip out of my dress and into a nightshirt. The Help actually does this for me. She rolls me to my side, the opposite side of the night before. She places the large pillow between my knees. She places the small pillow under both my ankles. She exchanges the small urine bag for the larger night bag. She uses alcohol wipes. It’s important to be sterile. I have a tube that goes directly into my bladder. There’s risk of infections. She covers me first with a sheet, and then with a blanket. She places the TV remote, the fan/light remote, and a bottle of water next to my head in case I need any one of them when no one is around. She cleans the small urine bag with bleach and water. I remind her to adjust the temperature and turn out all the lights. She leaves. I am alone with just my cell phone and my thoughts.

I try not to think of the possibilities of what can happen at night and what I can’t do by myself. Instead, I think about my day. Did I have an $80 day today? That’s how much it cost to pay The Help today. I debate whether my day was worth that much cash while staring at the TV. Sure it was…I decide. I lived to tell about another day…

That is, if someone arrives in the morning to start the entire process all over again.

5 Responses to “I Am A Robot”

  1. Gerri Helms says:

    Wow.

    I’ll never bitch again.

  2. naomi says:

    I love you Jana! you are and always will be the person who inspires me the most in my life, no matter what you never give up! yes, I am crying right now. :-)

  3. Cheryl Bianchi says:

    jana, i saw that you posted this this the other day and just hadn’t had time to read it….boy, o, boy…it’s so interesting the sliding line of good fortune…that Xan has upper body and can NOW handle most of his hygienic routine, is a relief….but he still has accidents…and that, more than anything, is what freaks/bums/angers him the most (the only time he has said, This is not fair, was just the other night and it was concerning this issue)….what a service you have done by writing about this…people really do not understand what this all entails…(i certainly didn’t before i had to live it)…they only think, Oh, you can’t walk…the bowel/bladder issue, to my observation, are far more fraught…both physically + psychologically. I think i posted about this snippet of footage that was shown at the recent Reeve Foundation event….they implanted electromagnetic stimulators in 4 people (all men, so far)…2 completes, 2 not and had profound results…esp with organ function, body temp, blood pressure and yes, leg movement…they want to do more trials…need to fund raise (where is the gov’t when we really need them?? ) which i will help with because it could have such a profound impact on all in the paralyzed community…even tho i don’t have a cent! will keep you apprised…perhaps you will get involved with me…i don’t know how you feel about it but Xander hates to be called heroic or an inspiration…his position is he has no choice so why is that heroic…but i do think you are brave an wonderful..especially in your efforts in educating the world about the realities of life in the chair…hope to see you soon…xoxox

  4. Roxanne says:

    Your blog is exceptional, but why not, you are an exceptional young women. You are not a robot and never were, though you clearly felt that 5 years ago. I have known of you for so long, since I heard about the accident. I am Cindy’s oldest sister. You have been an inspiration to so many people and I hope that you know how loved you are by so many people, both family and friends. I love hearing about your successes and your new husband and I have enjoyed the wedding pictures from afar. So, in closing, congratulation on the last five years and your amazing journey. May the next 5 years surpass your wildest dreams, and keep dreaming.. And thanks for your blog!

  5. Katie Devine says:

    My name is Katie Devine and I just have to take a moment to thank you for your beautiful & honest words in “my wheel life”. My fiance, Aaron Baker, is a recovering quadriplegic. he broke his c-4,c-5 & c-6 almost 15 years ago while riding motocross, something he had been doing since the age of 3 & was considered a professional in his circle – paid to ride.

    I was naive to the injury when i first met him… only seeing his beautiful blue eyes. To this day, I still can’t wrap my head around it all. He walks with a cane now & is a daily inspiration to me, and those who use his facility, C.O.R.E., as an outlet for restorative exercise. That was & is his medicine.

    It’s hard for me to hear his stories of times in the hospital, his initial prognosis & his years of struggle & eventual triumph. although, it is still an every day healing process with its highs and lows. Your wit, clear description, honesty and courageousness brought me to tears & had me smiling all at the same time. I continue to be fixated by your words.

    Thank you. You are an amazing woman!
    love.

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