It has become very apparent to me lately the unexpected happens often to people. For some it comes at the worst time possible. For others at the best time—even if they don’t realize it. How you view it rises from how and what “IT” is. A lot of the rest comes from you. My mother says, “No matter where you go, you’re still the same ‘you’ there. Your experience will only change when you do.” It is a phrase for me that I have reflected on many times over the years, and has affected the roads I have gone down. Especially lately, now that I am wheelchair bound.

“And so,” I reflected out loud as I sat smoking a cigarette at my favorite hangout late one October afternoon, “Have I effected enough changes that make the differences I need?” I’m not sure. Overall, many of them have come to me by force, and some by chance. I hope so, but of course people are ever evolving in some way. There’s no telling how true my changes will be for others or me in the long run. This is my truth now. More than that, time will answer. Jim sleepily sits down, and I ask him how his day has gone. He looks bloodshot, weary, tired of body and spirit right now, undertoned by his ever present five o’clock shadow. Jim’s voice is deepened by years of smoking rotgut cigarettes. He lights one of them, carefully regarding his first cup of joe for the day. “ It’s a good day. It’s always a good day if you are alive.”

I can’t sleep. It’s an act of will, not insomnia. And while in the back of my mind I know why, and that eventually my body will take over at some indefinable point, the trauma has me vigilant in its grip. It’s been a long collective of days leading up to a week. By now surely, with all the passing out from simple exhaustion I know that on some level I am safe. But the images still are too fresh, too jumbled, too real. And sometimes it seems so real in sleep that there is no trusting my own mind, body, and understanding. So I can’t risk sleep; I am ever vigilant. The nurses all react differently. Some with pity, others with a starchiness of person. And of course many with a downright black humor that comes from seeing and dealing with this and worse everyday, all day. I sigh and hope to pass out again soon—anything to not remember the nightmares and reality I now face. Another day trying to not remember sudden death coming at you around 60 mph, and dressed in the guise of an upset teenager in an SUV not paying attention to the road and stop lights.

The night nurses are characterized mostly by extreme kindness and sympathy. I am reminded of Kelly, my first girlfriend. She is a nurse at Park West Hospital in Tennessee. I know how the pain, trauma and suffering affected her-- remember the need to lock herself in a room alone and weep copiously, unable to let others be with her in this vulnerable moment. I know it touches them similarly, its written in their eyes. It changes us all, the reality of people in such consistent situations of pain, suffering, trauma, and grappling with overwhelming realities. It changes you almost as much as going through it. And sometimes, dependency is a relationship of forces beyond control. An unexpected new truth for me to live. And like Kelly, I find a strange abandoned stretch of night where in grief and vulnerability I weep long and deep.

Yes, it is another cold reality. The dependency of being a patient is hard. It is frustrating and stressful, and protracted with long haggles you cannot win. I look at the institutional ceiling. The TV takes the edge off the too quiet air and omni-present noise of equipment beeping, pulsing, or screaming at a random yet steady pace. I’m coping; not well enough for ease of spirit. Images of headlights in the night, metal, glass and bruises—the ever present bruises that are dark as the minute they were created and yet strangely do not hurt and perplex my doctors as much as anyone. It’s going on two weeks. The TV drones on. My body aches and hurts in ways now that I never expected to face. I need relief, and no matter if the nurse comes or not—there is not much to be had. And in some odd way, this will somehow hurt the nurse almost as much as it frustrates me. It’s a weird dance this impatient submission. New realties often present new truths, or repackage old ones.

Pinkie slips in quietly but gracefully. She is the night nurse assigned to me for this day in the acute ward. Of all the nurses here, her quiet gentle presence will make the one calming element for me this night. Though I don’t know it yet, she will be here all through her food break, watching over me and calming me as I later found out she did nearly every night while I was there fighting terror in my sleep. There is little Pinkie can do, the pain is bad but I am swimming with chemicals by now. My left knee is still horridly painful, and on fire from the 10-inch metal spike they drilled in to save my hip with skeletal traction. After watching me fight for control, she makes a decision as traitorous tears slip deviously down my cheeks. She leaves and returns with a huge ice bag, gently laying it over the kneecap. And fight as I might, a part of me submits.

Yes, for me a new reality has settled in for a stay. I am now in one of those unexpected detours of life. By now I am tired of reliving it, and my voice half dulls at having to explain it much these days to strangers. It’s another day at The Planet doing homework, drinking coffee, and shooting the breeze with people on 4th Ave. I exhale a stream of smoke, and several people pass by, their feet doing an unexpected stutter step to get by my wheelchair, half annoyed for the inconvenience. David is talking to me, chain-smoking between sips of cola. His oddly matched style of turtlenecks and western cut denim shirts hide the corset he wears for his back. “Doll, I hate to say it but it’s true, the problem is this: people treat the disabled like damaged goods. At least they do here in America.”

About 7 months ago, I came to Tucson to try and restart a life in America after many years in Germany, and finally get my certification to be a teacher. It was a step that has been hard in many ways, but necessary in many more. 3 and half months later, in late June I was finally seeing some light at the end of many tunnels. I had a car, I was an honors student in the college teaching program, I was working part-time in receiving at Sears, and finally had just gotten my first job as a substitute in summer school. Dagi, my girlfriend of eight years, was going to come visit from Germany for nearly three weeks in August and everything looked like it was finally going well. I was really starting to feel like I was making progress, fitting in the community, and on the right path.
Then, on June 23rd, on my way home from my last college final for the term, I was hit by a teen girl driving a large SUV. It was an especially nasty accident; I am lucky to be alive. And the doctors tell me my brain has to regrow many new pathways because of the trauma and force of the crash. But I am not crazy, just floundering in a sea of abandonment by friends and emotionally hard family issues. It’s now been several months since I was released for home care, and I still haven’t gotten over elements of it. But of all the emotional and mental issues that go with trauma, there are a stream of little and seemingly undramatic moments that frame the increasing hard frequency of my unexpected moments. Down the street, I notice a quadriplegic. And I am angered for us all, but especially for David, my sweet gay David. My heart is stripped to the core knowing he will one day trade places with me in a chair for good. The doctors can only treat the pain for his degenerative back/spinal ailments. Over the last months they have progressed and he has added epidural shots of painkillers to his weekly regime. And I cannot fathom that daily anxiety and fear I was spared. We just look at each other knowingly; punctuating unspoken sentences with exhaled smoky silence.

After the initial hit, the police and paramedics had a hell of a time cutting me free of the car. It took over an hour, and for each half hour I was in that car, the front engine block would drop and settle a little more. Each time that happened, I could feel my right leg giving under the pressure and had to wait for it to break both bones and feel the hard engine land and start the process over again. The three breaks in my right leg were so drastic, they had to operate and put in a steel rod that attaches to my knee and ankle area, and one of the two leg bones has still not formed reconnective bone tissue but there is hope. They have no plans to take my metal-ware out, even though the screws are too long and cause massive bruising, and pain daily. The most I can hope for is a surgery 8 months to a year after the accident to replace or remove one of the screws that has been the most painful.

The impact of the SUV forced the back seat into the front, and forced my left leg forward into the dash as it was being forced back by the front engine crushing and twisting. It broke my pelvic bone up badly, sheared the ball joint off in my left hip and dislocated my leg dangerously. For a long time in the ER they did not know if I would ever walk again. I was covered in glass, and bruised black purple over my arms, legs, back, chest, and places I can’t see. The X-ray technicians still remember me vividly even weeks later because of the copious amounts of glass that broke and shattered over their floors and sent them scattering for cover. I woke up with my knee in excruciating pain, harnessed in a metal traction machine with a 30-pound water weight attached to it off my foot area. I was literally pinned to the bed, and moving was excruciating. The skeletal traction pin they drove through my left kneecap became a real study in stamina. I remember just before surgery the day after being admitted, they wheeled me down to the imaging clinic at some insane time of night, intent on getting diagnostic scans. I will never forget the pain of them unsure of how to get me into the machine, and the doctor exercising a moment of exasperated brute force, nearly throwing me bodily into that machine with the metal traction hookups on my leg. The pain forced me to pass out. But it was nothing compared to the daily routines. Everyday, you have to go the bathroom, which means they have to flip you half over for a bedpan, twice. This does not count the times doctors and nurses had to check on it, palpate it, adjust the weight, wash you, or that you would wake up shrieking because you’d had a nightmare and twitched.

Yes, the unexpected happens. And I am still dealing with it now, so many more months from it. It’s early October, and I sit in the coffee shops’ back patio listening to couples plan out their holiday excursions and quietly hold hands. The force of that one image rocks me. My girlfriend surprised me by being so understanding and supportive the past 5 months, even as I know it has to be killing her inside. First her father, now me. It’s not enough that I was hurt, but now I have blood clots from sitting in the chair and can’t climb a flight of stairs so we may not see each other at Christmas without a miracle. It may be almost another 7 months to a year before were together even for a little while. And there is more that complicates it. Finances are messed up, classes are twice as hard because my brain has not finished retraining itself, and the ability and time to travel to the several places I need is not there, at least not at will. I have to plan life out a week in advance down to the minute. And that is new enough and hard when you have to adjust your needs to what reality will allow. I look at the anniversary cards I have just finished signing for Dagi, and tears for her slide quietly down my face. But again, Jim’s comment plays through my head, -- it’s a good day; I am alive.

The months I was in the hospital I had plenty of time alone to think. I had few visitors and none of the new friends I had made when I arrived in Tucson came to see me. It took me a long time to deal with that. The inability to hold down a job and bring income to my bank account has at different times messed with my mind, and restricted what I could do. And then there is the reality that everything is different, no matter how hard I try to make it the same as it was. I am different, and have changed in some way I’ve yet to define or understand. And as my mom pointed out, things change when you do. And change can be hard and scary, when you’re still reeling from the blow. Everything is more urgent and harder to make happen.

It is now late at night and I am beginning to get upset, tired out and on some level scared. It’s a balmy late October Friday night on 4th Ave. I am stuck downtown, waiting for the only cab that would come and take me home. It has taken a small act of God to find the cab, the cell phone nearly drained now for an hour. Rob sits on the pavement, waiting with me. He is sweet to stay with me. And I wonder how long we will have him or Jim around, the wages of AIDS a slow death. However, tonight I am the one who is sick, skin white, my lips a shade of blue. The irony of the situation does not escape me. Rob just waits, trying to distract me with humor. Tucson has para-transit services for disabled people, and I am lucky to live in one of the areas that get limited service. But to get my rides to places, I have to know a full week in advance where I need to be and when. And sometimes they can’t meet that constraining need.

It’s not just a matter to pay 71$ for a taxi ride in a wheelchair, or make arrangements to reschedule when I have appointments. Just to go to college classes and make it to class in time I have to arrange for a ride downtown earlier in the day to the coffee shop. Thanking Lynn and Diana for the Planet’s WIFI, I try to study or do papers while I wait around till its an hour before class to get a ride. And similarly in reverse to get home, which makes for very late nights and little sleep on an already tired and worn body and mind. David, my dear buddy, has pointed out more times than I care to imagine how the world never understands the plight of the disabled, esp. those with AIDS and how hard it can be to just wake up and keep going, but what choice do you have? Jim’s face plays in my head. He is getting worse, and we are all torn inside such we can’t talk about it much, and never in front of him. But Rob has started telling me stories about what it is to have AIDS, and it is perfectly summed up in his favorite quote,” If you want to see me, do it while I’m here.” And I pray for the van to get here soon, while I dial the dispatchers number again frustrated by the situation.

It seems to always be a case of time or money. Between doctors and therapies to walk again, the time and energy it takes to rest, pick up meds and undergo paying them up front, and then wait for reimbursement. I pat the nearly 80 dollars in my pocket for the ride home, and sigh. Money is always a consideration, because like so many people who get injured I had no medical insurance at the time. And even with the benefit of Arizona’s state paid medical cost containment insurance for the poor and otherwise disenfranchised people, I have no realistic hope of getting any recovery financially for being out of work, physically disabled, and dealing with the major process and pain of essentially losing my mobility and health. But, I pray for the miracle that ACCCS will waive the lien on the $15,000. And I was lucky, because the girl who hit me had minimum coverage insurance. Over half of the drivers in the state are not insured at all. And I worry for the day coming soon, when I will have to swallow my fears and anxiety and get back into the drivers seat. I am still working through the grammar of my own experiences and memory.

And the family issues continue as well. I have a very supportive church that loaned me the use of an electrical wheelchair. I would have been utterly lost without it. My parents, Dagi, and my baby sister are over protective now. At 34, it is strange and totally overwhelming. Needless to say, it is emotionally stressful-- and not just for the disabled, of course. I have come to a point where I have had to hide where I go at times or what I do from them, just to find some place or peaceful ability to just be who I am without judgment, conditions or emotional stress. I feel so indebted to the staff and friends I have found at The Planet coffee shop for their helpfulness, acceptance, and ability to just be as normal as possible with me. They have provided me a refuge from the different social views people have of someone invisible in a wheelchair, or on a walker who is young or hasn’t perfected walking well. And that means so much, because people seem to either ignore people with disabilities or think strange things.

Yesterday comes to mind again. At the Planet, while typing at my computer, Tammy comes over and sits down. It is dead essentially, and we are mostly alone. She is tired and sick with a cold, obviously not feeling well. Ever a kind, compassionate soul and thoughtful woman, she asks how things are and how am I recovering. I tell her not so good today. I have cried for whole parts of the early morning. And she asks what is going on. My girlfriend has suggested I find a secondary girlfriend here in Tucson, because it is easier to let me do that then try to keep wanting and needing each other from so far away. And I am livid at the idea, and yet too stunned to realize anger for itself. We talk about it briefly and the topic is personally hard. She nods knowingly and eventually goes back to serve a customer as the door opens. I go outside to get warm and smoke, sans walker. The odd person or two pass by and suddenly, it hits me. The simple act of having a small conversation for a few minutes bangs home how very isolated I have felt, and how hard it’s been to have this disability. Sitting there without my paraphernalia, there is no visual cue for the average citizen to use and the simple unknowingness of people really hits hard.

Since I have graduated to my walker, I have had more people look at me with pity and act like I can’t hear or am mentally challenged because my gait is choppy, disorganized, and slow. And no one feels free to comment on it, so they all look away with this guilty or patronizing look. It sometimes never occurs to people who don’t know that you possess a mind, ears, and a full life. It has given me an even fuller appreciation for my brother-in-law Mike, who has Down Syndrome. You learn to make fun of yourself and develop an intensely black sense of humor about your own disabilities and scars often, just to deal with other people’s reactions. I come back in and pay for more caffeine. Tammy’s ready for me, and I make some crack about how sweet she is, just with a slice of devil on the side and she grins and laughs unexpectedly. It changes my day for the better, and I wonder at how special a person it is who takes you for your inner self, not your outer shell.

For all of this tragedy, there is good. The boys (Jim, Rob, and David) are with me talking today, and a woman on a scooter chair comes up. We all break into conversation with her. And I find some odd sense of circularity with her. I think of all the people I met and was helped by, or whom I helped in the rehabilitation home, that doubles for old age homes really. I was able to help them find peace and comfort, companionship long lost in some small way, and enable the few people who I roomed with in hospitals gain moments of laughter. Unexpected strangers have become an active reality, learning new things from people, or listening to them and knowing somehow they were sent to me. Vital optimism has only found a new energy, and enables me to pass on my knowledge of forms, social service organizations, and processes to people I meet who are going into surgery or facing incredibly hard situations. Change is here, and I have enough understanding that more is on the way. But, I am on a journey now that my friend Carol can’t wait to watch unfold. She’s been on one too, but that’s a reality that’s been true since before I met her nearly 10 years ago; even more she is actively living it well. I called her today, and after a while we hung up. But I have been thinking about it, and I think I have figured out that right now, my mission whether I choose to accept it or not is this: to find a renewed sense of hope for my future slowly, realizing that every child I teach, classmate I learn from, every artwork I draw or well turned phrase I write, and each friend who reaches out a comforting hand is a step in the right direction-- A way to change, for the better--To make being alive, more than just a good day.

It has been a many months since the writing of the essay. Much has happened in my life, but to also point out that life does have some joy regardless if you are disabled, I am adding this minor update.

After the paper was released, I broke it off with my girlfriend of 8 years. It has been messy and hard, as breakups are wont to be, though in some ways this one has been particularly so. About a month and half after this I met and quite quickly unexpectedly became engaged to my wife, Lisa.

Together, we have been working on my physical mobility. I am so grateful for a spouse who is so able and willing to help me. I cannot tell you how difficult it can be to get dressed, ties shoes, or pick up the house or room for a long time. It’s still not great, but Lisa is ever loving and helpful. She is utterly a gift from God. It took a while to retrain how to walk and climb stairs, and my knee pain and hip healing effect how I walk and for how far, and so far I still can not squat.

I can drive a car now, which has enabled me to be a lot more able to get to places, however it was really a long complicated process to get a car, much less a disabled plate on the car. I was very grateful to David who volunteered to put the plates on despite his back issues, because there is no way I can kneel down and put them on with my right leg. And while they are still hassling out the realities of how much damage or cognitive changes have occurred because of the TBI from the accident, things are much better; I have gone from frustrating full blocks to a mild coffee drip and now to a somewhat consistent steady leak of processing and ability to get things done. I still find some residual moments where things just aren’t going to recover the same. But, you know we all have to work out our lives and find ways to make it with a great deal of trembling, brave faith and time. Darkness comes and it can be overwhelming at times, but light eventually pierces and that makes all the difference.

At any rate, the disabled life is not one of just pain and darkness. For many it may be more pervasive than others, but not for all. It often varies directly with how big and sufficient your support system is. As I write this, I have found my own frustrations come back often enough to how much time I have lost in recovering physically, how far back my goals and education were set, the financial problems and the issues it brings for my present and future. But with that, there is light and joy too. I think perhaps that is an important thing to mention. I am now within a year of finally getting my post-bach degree. And with enough luck and blessed wonderment, hope to start my Masters of Special Education as soon as I can. And in August, Lisa and I will finally have our wedding. And mostly, weddings are joyful things with moments of frustrated outbursts and family dialogues. So, things progress and there is great joy more or less.

Between classes and doctors appointments, Lisa and I have been hassling out all the normal issues that come with moving from different states and into the same home, as well as getting married versus producing a wedding (neither one should be confused as the same thing). Needless to say, in reality weddings are huge productions rivaling those of the stage that often are thought to be “how the bride wants it” and actually end up being some compromise between that dream, your families, a host of friends, and what you can afford to pull off. Getting married is the part where you make the commitment and join together. The two can be merged… I still highly recommend you think about eloping. I tried, my parents would not hear of it.
Cheers to life-- one lived not just survived!
Kandice