Breath & Shadow
A Journal of Disability Culture and Literature
By Debbie Johnson
BEEP-BEEP, BEEP-BEEP. The alarm clock rings and I pull the covers over my head. BEEP-BEEP. After another minute, I tire of the alarm's incessant call. I crawl out of bed remembering today’s itinerary and wish I could just stay home. Taking a deep breath, I strive to remain calm and relaxed. Yet the anxiety begins.
As the time nears for the bus to pick me up, my heart races along with my thoughts. A dull headache has worsened throughout the morning just knowing I have to see HER.
Today’s trip is one of my least favorites. I find myself clenching my jaw, knowing I have little control over the outcome. As I get ready, I play out scenarios of what to share with the psychiatric nurse practitioner, and what her responses might be. If I act too nervous, she may think I need more medication. Or, she could decrease it if I appear to be doing well. If she senses I am too unbalanced, she could hospitalize me. I need to look pulled together, rather than scattered, which is how I feel.
As the bus squeals to a halt in front of the house, my dog barks frantically. She knows it means she will be alone until the bus returns me. It will likely take three or four hours for my fifteen minute appointment. The bus arrives seven minutes early, leaving me no time to double check that I have everything. I hurriedly throw my water and notebook in my bag to help pass the time.
I struggle to maneuver my electric wheelchair through the front doors and head down the ramp. The bright sun feels warm on my bare arms. Brian is driving today, and I smile. He’s friendly and usually has a funny story or two to share about his driving adventures. I see the drivers so often they almost seem like family.
But, I have a love/hate relationship with the bus. It is the only way I can travel with my electric chair. As I age, more of my friends and family are unable to lift my manual wheelchair into a car. As a result, I would be home-bound much of the time without the bus, but do get frustrated with their limited service hours and the long waits.
As I approach the end of my ramp, the smell of diesel exhaust permeates the air. I get onto the wheelchair lift which groans and shakes like a bad roller coaster ride. As I ride up, the driver is in my personal space as he operates the controls. Due to the design of the system, this is the only possible way. The ride up takes only a few seconds, but poses the awkwardness of where to look. Do I look at the bus driver, or stare at the sky and comment on the weather? Today I look straight ahead, seeing first the white paneling on the side of the bus and next the gray interior.
I go to the nearest seat and transfer out of my chair, always longing for a change of position. As I fasten my seatbelt, Brian, once again invading my personal space, secures my chair. I stare out the tinted window as if there was something interesting to see. Once security is ensured, it’s time to pay for the ride. I feel a twinge of frustration that I have to pay while others qualify for free transportation. Somewhere in the governmental bureaucracy, they determined my above the knee amputation wasn’t a disability.
The air is stale and sticky, so I ask Brian to turn up the air conditioning. A few strains of country music are heard over the chatter between the bus drivers and dispatchers on the two-way radio. After the noisy, bumpy ride, we arrive at the clinic. There’s a small step at the clinic door, but it is significant enough to jar my chair as I pass over it. Only the inside door into the clinic is wheelchair accessible. The outside door isn’t, increasing the time spent in rain and snow. There ought to be a law requiring clinics to be completely wheelchair accessible. Oh right—there is.
My appointment is on the main floor. Getting to the basement requires going outside and around the building while negotiating a steep drop in the parking lot. It is dangerous on a sunny day, impossible when the pavement is snow and ice covered. Fortunately, I do not need the food bank, energy assistance office, or clinic classrooms located there today.
Once in the clinic, I approach the reception desk. It’s well above my head, making me feel like a five-year-old trying to see over a bank counter. At times, I need to rustle papers or make noise so they know I am there. After I am checked in, the faceless voice behind the desk directs me to sit in the waiting room.
Waiting rooms are often completely lined with chairs, leaving no logical place for a wheelchair. I try to find a spot where I will be out of the way. An hour passes while I leaf through a few magazines. The clinic isn't running late. To accommodate all the riders, the bus company schedules a wide time window. In other words, I’m very early.
I sit, trying to be patient as I wait for my appointment. As if on cue, I miss the days when I could come and go as I pleased. That simple freedom, so unappreciated at the time, is both precious and elusive to me now. Dependence on others and their schedules is my new paradigm.
Finally, my name is called. I squeeze into the crowded office, which must have been a small closet in the past. With HER desk and chair, a bookcase, and two additional chairs for clients, I can barely close the door. My nemesis puts on her reading glasses, does something on her computer, and we begin to review my 'progress'. It has been a long time since I have had any major problems, but I always feel self-conscious as she begins the interrogation.
She rattles off the usual list of questions. How am I doing? Do I feel depressed? Is my anxiety level well controlled? How is my appetite? Am I sleeping? And do I have any thoughts of suicide? She looks at me suspiciously, as though wondering if I am being honest.
Pretty good, thanks; no, sleep isn’t good, but it never has been; and yes, I've been eating. I deny thoughts of suicide or homicide and try to lighten the discussion by adding that a Lifetime movie I watched the other night had tempted me to shoot the television. SHE failed to get the humor.
She taps on the keyboard with her perfect, red fingernails as she asks the final two questions. Do I feel safe at home? Do I ever feel helpless and hopeless? The answer is yes to the first. As for the second question, there are times I feel helpless and hopeless due to having to rely on others so often. The time I truthfully answered this, she wanted to change my medications. Today, I bite my tongue and give her the answer she wants to hear.
“In that case,” she says, “We’ll see you in three months, sooner if necessary.” She rises and opens the door, signaling we’re done.
I squeeze out of the cramped office and sigh with relief. She didn’t change anything. She never has without my agreement, but the fear is always there. I dread spinning out of control again, losing my footing, and my grasp on reality. I just can't go through that again.
I return to the desk, which I can't see over, to set up my next appointment. Talking loud enough for the receptionist to hear leaves little privacy. Back in the waiting room, I pull out my notebook and attempt to brainstorm ideas for my next poem. I try to be patient while I wait another hour or so for the bus to pick me up.
As it finally pulls into the parking lot, I go through the non-handicapped accessible doors, down the step --there ought to be a law--and back onto the bus.
We pick up and drop off other passengers, covering most of the county, as I review the day in my mind. Perhaps my fears were unfounded. Maybe the nurse practitioner isn’t so bad. I ponder the absurdity of a clinic not being accessible for the disabled. I look through my notebook and start jotting down ideas for a poem about control, and the lack of it. The sun still feels warm shining through the windows. Once in front of my home, the lift lowers me down to the sidewalk. My dog waits anxiously in the window. I thank the bus driver and say good night.
Then I travel up the ramp, which is just the right pitch and size for me. For the first several years after my amputation I had to crawl up the front steps, so now I feel a strong sense of appreciation every time I head up the ramp. After clearing the hurdle of the front doors, I enter my house, very glad to be home.
Here, I have my bearings. I know where the grab bars are and have my sweet dog, Zoë, who doesn't care I am missing a leg and suffer from depression. She loves me just as I am. Home, where no one stares or worse, averts their eyes, as if seeing me makes them aware of their own vulnerability. Back to where my dishes and food line the counters so that I can get them without struggling to open the cupboard doors while precariously balanced on one foot.
The sun is setting. The clock says 5:30 meaning the fifteen minute appointment took just under four hours. Not the most productive four hours of my life, but I did get a good laugh when Brian told the story about the growling dog he had to outsmart by giving up his lunch in order to pick up a client this morning. I did come up with some interesting ideas for poems. Now I am at home, in my comfy chair, back in control again. I sit back and take a relaxing breath as Zoë jumps up to sit beside me.
Debbie Johnson was in an auto-semi accident ten years ago. She had a left above the knee amputation as a result. Having worked in healthcare for twenty years, it has been quite an adjustment for her to be a patient rather than a caregiver. She has been treated for depression for twenty-five years.
She is the author of 'The Disability Experience' and 'The Disability Experience II', both containing prose and poetry on the subject of living with disability. She began writing four years ago after taking a therapeutic writing class. Her website/blog is www.thedisabilityexperience.vpweb.com.
She lives in rural Iowa in a house built in 1885 with her spoiled beagle, Zoë.