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99 Problems

The daily struggles of urban living as a quadriplegic explained one by one. It's so much more than not being able to find a parking space.

99 Problems — #13 I Am Not The Boss of Me

catThere are days that being paralyzed blows. There is no other polite way to say it. It’s so much more than not being able to stand up, walk or run. There’s the chronic bladder infections and urinary tract infections and poor circulation with threats of blood clots. There’s bowel accidents and caregivers and wondering if caregivers are going to show up or possibly walk out and quit for no good reason. There is back pain from sitting too much and shoulder pain because the activities you’re doing are being done at half mast thanks to muscles that no longer fire. And then there’s pressure sore concerns and the dreaded bed rest. If you ever wonder why or how I can sit and smile at the end of the day, it’s because I’ve made it through the day with only having to deal with one of these problems.

Over time my life has become a game of daily problem solving.

Recently I woke up with an abrasion on my left hip region, a teeny tiny scrape inconveniently placed on a boney bit that is considered a high-pressure area when I sit in my wheelchair. Where did this unexpected wound come from? I’ve created a couple theories. Either I bumped it on something accidentally while being carried to and/or fro my wheelchair. Or this new cushion system I was trying didn’t not work as planned, and the plastics I was sitting on irritated my skin until finally it bled red. Either way what I do know for sure is that one morning I was told there was a tiny red spot on my hip–yet nothing to be too worried about–and then the very next morning I was told the red spot had turned into an open wound. What had happened in between the two observations? Nothing extreme, unless you consider puzzling dangerous. As I recall it, the day was full of normal activities–sitting, writing and working on an African Safari puzzle while watching shitty reality TV.

Now this wound was not really a gaping wound like you might be thinking. It wasn’t even as bad as road rash. The scrape appeared tiny, smaller than a dime even… yet that didn’t (and usually doesn’t) stop the consequences from being catastrophic. Any time the skin on my bum looks red or irritated it’s grounds for bed rest. Why you might ask? Grab a barf bag and Google Image the words ‘bed sore.’ The images will traumatize you. They traumatize me. That’s why I look at them every time I’m on bed rest and feeling upset about laying around over a teeny, tiny mark that would be no big deal to anyone not paralyzed. I do not want my body to be added to that horribly graphic list.

The other problem is that skin doesn’t heal very quickly. It also does not grow any faster when you watch it in anticipation. And the only thing worse than waiting for skin to heal is waiting for a deeper wound to heal first. I know this because one time I had to be bed rested for eight long, terrible months. This latest little abrasion put me on bed rest for seven, long boring days and then seven more days after a false alarm that the torture was over. The wheelchair stuff I can deal with, even all the secondary issues that come along with it. But put me on my bed rest and order me to do nothing–and I fall apart emotionally. I do not know how to do nothing.

Now I know some of you, especially new mothers, crave  downtime and wish for those few seconds to be alone with nothing to do. But before you get too glassy-eyed in your dreaming let me assure you that bed rest for me is really torture. Here’s why.

Reasons I Become Emotionally Stunted While On Bed Rest

1. I am not Julia Roberts in a Cotton commercial. Therefore I’m not lounging in bed carelessly, whipping around in sateen white sheets and looking all sexy in a see-through cotton white tank top. Remember over three-quarters of my body is paralyzed. Thus my body is awkward, uncoordinated and delicate as a crane made of rice paper. Consequently I must lay on a memory foam mattress with pillows between my knees, under my ankles to protect my bony bits. Nothing about how I must be positioned is sexy, I promise. It’s usually not even comfortable.

2. Being on bed rest can cause other bed sores. So to prevent future pressure sores I must be rotated and turned like a skewer on a grill. This would be no big deal if I could move myself but I can’t.  So every few hours someone has to aid me in this awkward and painstaking event while neighbors next door try to make sense of what’s causing the grunting and moaning sounds emulating from my room.

3. This is not a sick day. Since the wound does not hurt or cause any kind of illness, it’s hard to justify why I must lay down for such long periods of time. It’s not like I have the flu and feel like shit. It’s the opposite. I feel great and well rested. And with each passing day I become more antsy and restless because I’m expending no energy.

4. But you could read a book with all that quite time? Wrong. These paralyzed hands barely let me turn pages while sitting up perfectly and now you want me to do it lying on my side fighting gravity. Please.

5. But you could use a Nook or a Kindle? Don’t be an asshole. To have a true reading experience pages must be touched and flipped. The book must be weathered and also have it’s own smell. It’s part of the whole experience. However for the record I’ll note that any tiny mechanical device is still too difficult to maneuver with these handicapped hands, not to mention I hate reading sideways.

6. But you can watch movies? Or TV? I’m not above movies or TV and in fact that’s all I really do on bed rest. I become hypnotized by the boob tube, zombie-like even. Since my husband is an avid movie goer I have seen most featured films. And since I’m a reality TV junkie there’s not much I haven’t watched. Still I use Netflix and find shows on DVR Demand for the cost of $8 per movie, which can make for $24 days without even leaving the bed. That’s expensive.

7. There are no breaks from bed resting. I recall loving sick days as a child because my parents worked and I had the freedom at home to raid my parents cabinets and do whatever I wanted without anyone watching. But that was also back in the day when I wasn’t paralyzed. On “sick days” now there’s no trips to the pantry or refrigerator. There’s not even a trip to the bathroom. I become completely dependent on the hands of another, which sounds pleasant but actually is so difficult. Don’t believe me? The next time you play hooky from work try not to step a foot on the floor for the entire day, not even for food. I dare you.

8. I’ve been known to disappear during bed rest. When on lock down I don’t return phone calls or texts. If I do respond it’s usually a one worded text like ‘Thanks.’ I’ve been known to stop emailing and participating in social media. Why would I isolate myself at a time when I am forced to be isolated from the world? There are two reasons. The first is simply that it’s too hard both physically and emotionally. Gravity doesn’t work well with me when I’m laying down and if I can barely operate a phone there’s no use in setting up my computer. Plus I don’t have anything to say. Who really wants to hear about my wounds or bed sores? And considering that I’m doing nothing I have nothing to talk about. The second reason I am slow to interact with the world is because on bed rest I am at my worst. That’s not a side of myself I’m willing to share with a lot of people.

The good news is I have a husband that loves me unconditionally. He dotes on me daily, but even more so on the days I’m at my worst. Somehow I’ve managed to share this part of my life with him without scaring him away. Before he came along I used to lay around and wonder if there was anyone in the world that could understand the hardships of my life, especially because at times I don’t even understand it. No one should feel guilty for wanting to sit in their wheelchair, and yet some days I do. But that’s the affects of spending lots of time on bed rest. There is a constant fear that it may happen again at any given second. As early as tomorrow my life could be canceled and put on hold thanks to a tiny scrape that magically appeared on my bum, the most sacred part of my body now that I can’t stand erect.

In the fifteen years I’ve been paralyzed I’ve come to learn that I’m not the boss of me. I must do as my body asks, even when it means canceling vacations, stopping work and bailing at the last minute on friends. Needless to say, there are some days being paralyzed fucking sucks. Because being on bed rest blows. And I hate it. The second it is over, however, I’m always pleasantly surprised by the amazing life awaiting me. And then I’m all happy again. Because I did it. I created that.

Posted Wednesday, November 13th, 2013 in 99 ProblemsTags: , , ,

6 Responses to “99 Problems — #13 I Am Not The Boss of Me”

  1. Allyson says:

    Jana,
    Thank you for continuing to share these aspects of your life. I remember that loooong stint of bed rest a few years back and how tough it was. You are so brave and sooo loved. Stay healthy!!
    Love,
    Allyson

    • Jana Waring says:

      Thanks Allyson. Yeah because I had to miss your wedding in NYC!!! :( If it weren’t for you and all my pals (especially Zach’s drag shows) I would have never survived! xoxo

  2. Gerri Helms says:

    I’m sorry that you are going through this again. If I was there, I’d help. Hey, we’ll be there soon, but I hope you don’t need that help from me by then. I pray for you daily.
    Love Gerri

  3. Cheryl Bianchi says:

    lordy, girl…you really have been through it…so far, Xan has been pretty lucky…NO pressure sore…but the bowel/bladder business is right up there…to say you are brave is not quite right…it’s not like you guys have any say in the matter…but you are tenacious, stubborn, funny and righteous…and bit by bit we will get to know each other…

  4. Barbara Dizon says:

    Jana, you continue to amaze me as you share the stories of your life. And I am so very very happy for you that you ‘found’ Corey, that kind of love is awesome. I loved the part of your article where you said you didn’t scare him away and the peace that must have filled your heart when you realized that. Thank you for continuing to write.

  5. kathy kiely says:

    hey jana — no wonder you take such obvious joy in being out and about! great insights about the true nuts and bolts of paralysis.
    we all need to bitch and moan once in a while — it’s like a storm, necessary and natural, and then it moves on and the sun shines. everyone knows you don’t dwell on things, but we might be alarmed if you didn’t vent now and again. keep making the most of your days up and about!
    k.

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