invisible zombies and magic beans

Going from hospital to home was terrifying. "Home" is not wheelchair accessible. I settled into life as a prisoner in a funhouse of stairs and barriers. I cannot leave the house without someone here to carry my chair down the stairs. I can't even go out on the deck as the threshold is too high to get my chair over. I get stuck in the bathroom doorway regularly. Getting a towel out of the linen closet requires stopping halfway through the bathroom doorway, opening the right linen cabinet door and extracting a towel, but to get a washcloth, I have to pull all the way into the bathroom, maneuver the chair 180 degrees, and then go back to open the left linen cabinet door to get a washcloth. To shower, I have to transfer to the toilet, place a towel on the seat of my chair so it won't get wet when I got out of the shower, then get back in the chair to roll to the bathtub. Every task requires preparation and a lot of maneuvering. I have learned some great new cuss words, and used them often. The doors and woodwork have become tattooed with the artwork of wheel bolts scratching across them. It is rather abstract, but adds a bit of character. I can't keep my footrests on my chair in the house, as they don't allow me to get close enough to do simple tasks such as washing my hands, and I cannot get through the bathroom doorway with them on my chair. So my feet hang freely, which means I roll over my toes all the time. My daughter told me she always knows when I get up to use the bathroom at night because she hears me holler every time I roll over my foot. She thinks it's funny. My raw and bruised toes think it's torture. My family rarely remembers to leave dishes down in the lower cabinets for me, so I have become great at improvisation - a storage container for a soup bowl, a cutting board for a plate. I use the same cup for weeks at a time, washing it out by hand daily. If I didn't do this, I would have to drink water out of a mixing bowl or by sticking my head under the water dispenser in the refrigerator door. I spend my days rolling between the living room couch - which is my bed, my TV chair, my laundry sorting table, and my storage shelf -, the kitchen, where I have become quite adept at tasks such as grabbing a package of crackers or making some toast, but can't manage things that, at one time, had been simple -such as making spaghetti, and the bathroom, which I try to use as little as possible, considering how often I get stuck in the doorway. I have no need to race away from invisible zombies here. There really isn't room to run much of anywhere. My world has shrunk to a 400 sq ft area, barely enough room to turn my chair around. If invisible zombies attack, I won't stand a chance.


In the hospital, I had determined that life in a wheelchair was annoying, inconvenient, cumbersome, and uncomfortable. After arriving home, I also learned it can be frustrating, infuriating, and very humbling. To pass the time, I started keeping Top 10 lists, documenting the aggravations of my life in succinct little passages. They became my magic beans. If an aggravation made it into a Top 10 list, it became less annoying. It was magical. Some of the Top 10 lists were:


Top 10 Reasons to Run Into the Back of People's Heels

1. When someone stands in my way yapping on their cell phones, blocking an entire aisle
2. When a teenager asks me to get something for them on a high shelf, then laughs when I tell them I can't reach the item either (This has happened. Sad, isn't it?)
3. When adults openly stare at me - at least have the decency to wait until I am looking away
4. When young people standing in front of an exit door without an automatic opener just move out of the way and watch me struggling to open the heavy, self-closing door in my manual wheelchair and don't offer to hold the door open
5. When people park in handicap parking spots using a placard that clearly does not belong to them
6. When the Vikings lose week after week after week after week.
7. When there is a line in the restroom and a lady brings 4 little kids into the one handicap access stall and proceeds to let each of them use the "potty", singing little potty songs and taking their time while I sit there with my bladder exploding and unable to use any of the other stalls.
8. When people cut me off in the grocery store while yapping on their cell phones, oblivious to the fact that they nearly took off my knees with the front of their shopping buggies.
9. When complete strangers ask me what happened to me.
10. And the most important thing people do that makes me want to run up the back of people's heels: When I am flying down a ramp, and someone stops right at the bottom.

Identifying these factors helped me to avoid them. I stopped going to stores at the busiest time of day. I started using "family" restrooms (I figured if women could bring an entire gaggle of kids into the handicap stall in the main restroom, it makes sense for the handicap person to use the restroom designed for women with a gaggle of kids), I stopped slowing down at the bottom of ramps (this really does encourage people to move...quickly). But there really isn't anything to be done with people who block aisles, refuse to open doors, and park in handicap parking spaces when they aren't handicapped. I have decided to tolerate them, the same way I tolerate the bills every month. I don't like them, I wish they'd go away, but unless I want to live in the dark, or never leave the house, I have to tolerate them.


Some other, simpler lists I made:


Top 10 Things That Make Me Laugh

1. Spongebob Squarepants
2. My kids
3. My legs when they move in all sorts of unnatural directions as I push myself across the foyer whenever I leave the house
4. Politics
5. Puppies
6. When I carry a pile of freshly laundered and folded clothes on my lap to be put away, and they fall off my lap and end up rumpled on the floor, run over by my chair, and covered in dog hair
7. The movie "Elf"
8. When I eat soup out of an enormous mixing bowl and my spoon keeps falling in.
9. When I try to shave my legs and the water keeps rinsing the soap off my legs before I can shave them (I have to sit on a stationary shower bench, so I can't get out of the way of the water)
10. Judge Judy

Top 10 Things That Make Me Cry

1. Getting yelled at when my wheels hit a cabinet door
2. Burning myself while attempting to cook
3. Falling in the bathtub
4. The massive bruises I get from tossing my legs out in front of me as I go down the stairs
5. Rolling through dog poop
6. Running out of tampons (and being unable to drive to go get more until someone is around to take me)
7. Being unable to reach the doughnuts on top of the fridge
8. My dog begging to go for a walk and being unable to take him up to walk at our favorite place
9. Rolling over my own toes
10. Feeling like I'm no longer a viable, contributing member of society

Identifying what made me happy and what made me sad helped me to learn ways to ensure I spent more time happy and less time sad. Better planning, greater vigilance, and staying busy with meaningful projects have been helpful, but the sense that I am no longer useful still lingers. I have to reassess all of my goals and dreams for my life, but find that it makes me too exhausted, so I end up watching judge shows all day in my pajamas. I suppose this is what depression is. I've never been wrapped in such a heavy cloak of despair and hopelessness. I don't even find any joy in Facebooking with my wonderful group of friends there. Their cheerfulness just makes me more sad: Holiday plans, baking, shopping, parties, and I am stuck here, in my living room prison. I know this is a phase, and I'll grow out of it, but for now I am content to be a cantankerous old crank. If I don't allow myself to feel these feelings and to be angry and sad and depressed and frustrated, then I will not be able to move forward to the good stuff I know awaits me at the other end of the tunnel.


I do have my fun moments: I love the older folks in scooters in the grocery store. I'll roll up next to them and ask them if they want to race, and they always answer no, but continue chatting amiably, sharing their stories, and revealing their ailments. A new knee, a broken hip, arthritis, bad lungs, bad heart, bad feet, bad day. They always ask what happened to me. I always tell them I got hurt while racing an old person in a scooter. They always say "oh, I see", and laugh. Sometimes we continue shopping together, comparing sodium content and calories in various cans of meat, pasta sauce, and pimentos. Other times we go our separate ways and meet up during our shopping trip, smiling as though we are old buddies. Being old makes you appreciate human contact, being young and disabled makes you appreciate genuine human contact. People stare, they may smile, some are brave and risk a feeble "hello", but most people look at me, my chair, and avert their eyes and scurry away. It's awkward for them, because to appear too friendly would imply they are being nice because I am in a wheelchair, and not being friendly enough would imply they were rude and insensitive, so they trip over themselves to get away from me to avoid their own internal conflict. At first, this drove me nuts. I am, after all, still a vibrant, friendly human being. Why should a pair of wheels make people change how they look at me? But I do know, because I was standing in their shoes just 2 months ago. Older people in scooters or wheelchairs, or severely disabled folks were easy to handle .They had a clear and indisputable reason for using a pair of wheels. But someone like me, someone young, and with no obvious reason for being unable to walk, I represented the dark side of life. When young people see me, they wonder if they could be me someday, and it instills a sense of unease in their hearts. This is why, whenever I go to a sporting goods store and roll through the ski equipment section, I answer any young employee's question as to how I ended up in the chair with "I was shredding some wicked powder and landed on a tree. Tree won, man. Bummer!". This is, of course, an absolute lie, but it gives them pause. Maybe it will make them take safety precautions when out on the slopes. Maybe it will stick with them and remind them not to take unnecessary risks with their lives - there are outcomes other than death. They have to be willing to live with those outcomes. Or maybe they just think I'm an idiot for not turning before I hit the tree.


I know if I was still working I would be in a better place, emotionally, but they decided they had no more use for me once I left the hospital, so my job of nearly five years is gone. It's funny how much that affects me. I loved my job, I loved the company for which I worked. I brought a lot of business to them. Their decision to let me go was a very painful one for me. I feel angry, but at the same time, I also recognize that to return to the department I was last in, and the hostility I endured there, would not be beneficial to my health. Meaningful work can be healing, and highly motivating to anyone who is overcoming obstacles in life. But meaningful work at the expense of your health is counter-productive.


Life in a wheelchair is different. It has changed the way people interact with me. It has changed the way I shop, the way I seek employment, the way I handle every task throughout my day. It has altered my vision of my future - I no longer see a shadowy male figure beside me. He is gone. It would be hard enough to find a good guy with my legs in full working order. Now, I have little hope of ever finding a good man who would be willing to walk by my side into the sunset. Not that his is a huge worry for me. With everything I'm dealing with at the moment, I really can't even think about dating. I live on a sofa in the house I own with my ex husband - who also lives here. I can't drive. I have no job. Yeah, I'm a real catch! I know it won't be like this forever. I will find gainful employment eventually, get a van equipped for a wheelchair, and find a wheelchair-accessible apartment or townhome to re-start my life. But in the meantime, it is best for men to run away screaming. But the truth remains that my life is different now, if only because I see everything from the visual perspective of a seven year old. Sometimes I think this should give me license to also act like a seven year old, but tantrums require energy. So does talking a blue streak. So I speed forward and act more like a brooding sixteen year old. This does not require any energy, since all I have to do is sit and write. And writing, for me, is as natural as breathing.


We are not guaranteed a happy life. We are not born with a promise of life filled with rainbows and puppy dogs. Some people are born to bad parents. Others are born to great parents but marry a lying adulterer. Others are born to great parents and enjoy marital bliss but lose their job with eight mouths to feed at home. Others enjoy great childhoods, fifty years of marriage, perfect children, and long, successful careers, but learn they have terminal cancer just as they reach retirement. Some people experience their sadnesses all at once, others experience them in a series of events over time, and others experience them one at a time, with long periods of relative joy in between. But regardless of how much or how little sadness we have rain on us in our lifetimes, the lesson I have learned through my experience is that the most important gift any of us can give ourselves is a network of friends and family who will be there for us when we are navigating through a maze of challenges.The love of family and friends is a priceless gift when we are unable to lift ourselves out of the well of despair. Only Spongebob Squarepants has more magical healing powers. That little sponge could make even Eyore feel happy. 


In the end, I know I will be fine. I just have to get through this dark tunnel first. But I will get there. I can see the pinpoint of light, just ahead.