(Christina originally wrote this post on April 19, 2011)
I've been doing a lot of thinking lately, about life, and how one might define the overall quality, of his/her life. "Quality of life," means different things, to different people, and not everyone can agree. Each individual has their own tolerance for coping, with the demands, of his/her life. What might satisfy one person, may not satisfy another. Contrarily, what might seem unbearable to some, might seem reasonable to others. Most people will agree, that it is quality, that is more important than quantity, but how do we define "a quality life?" It's a very complex, personal, evaluation process, that each human being, ought to be able to determine, for himself/herself, based on careful, purposeful introspection. There are many factors that impact one's quality of life, that need to be (or should be) carefully weighed, and considered. It's not easy, but it's something I highly suggest, that everyone do, at some point, in their adult life. It's best to think about what type of life you want to live, and prepare for life's unexpected twists, and turns.
At the time of my accident, I was twenty-four, happy and healthy. I was in the prime of my life. I had a career I loved, a man I loved, a full social life, my health (with the exception of having IBS), a loving family, & a place of my own. I was living a carefree, independent life. Never in a million years, did I imagine I'd ever be gravely ill, or incapacitated. Up until that point, I had never been hospitalized overnight. I had never broken a bone. My worst accident had been splitting my lip open, when I was four. I had been walking, and drinking water, out of a mug, at night, and tripped over some shoes, and cut my lip, on the edge of the bed. I got four stitches, as a result, and other than getting my wisdom teeth surgically removed, during college, it had been my most traumatic, bodily damage, or medical procedure needed. I was a total wuss, when it came to any type of sports, and had no interest, or inclination to do, or play most any out door activity, besides hiking, swimming, and riding a bike. I hated heights, and wasn't into any thrill seeking activities, like bungie jumping, parasailing, hand gliding, mountain climbing, or riding motorcycles. My favorite past times included, going dancing, playing video games, painting, and watching anime; not exactly "X-games" material.
Up until the moment of my accident, I never really gave any serious thought, to what my definition of a quality life was. Looking back, I wish I had. Obviously, in hind sight, I'd wish I just never jumped into that damn pool. That said, even if I never dove into the pool that night, there's no saying I couldn't have gotten injured, or fallen ill, like so many people I've seen, and met, over these past six (almost) years. My spinal cord injury, opened my eyes to the fragility of our bodies, and how little control we have over our lives, and our health. In rehab, I met dozens of people with similar injuries. Everyone's story was unique. I've met people who were completely paralyzed due to freak falls, car accidents, motorcycle accidents, diving accidents, bicycle accidents, sports, work related accidents, horseplay, & gun shot wounds. I've also met young people who were totally (seemingly) healthy, that all of a sudden came down with degenerative diseases, like MS, ALS, and Gian Berret. In the nursing home, I literally watched people go from walking, to being in a vegetative state, to dead. You can't always control the course of your life, despite all the best planning in the world, but you can put in writing, the type of life you want to lead, and what you do, and don't consider to be "quality."
I wish I would've had a living will, or advanced directive, when I was injured. There is no way of knowing, what my future might've have been, if I never dove into that pool, that night. I could've potentially ended up disabled, a million other ways. I could have, however, prevented the last six years of suffering, if I had given serious thought to what I considered to be quality, and to what end, I wanted life saving measures made, in the event I was injured, or incapacitated. I wish I had been more informed, about things like advanced directives, and that I would've taken steps to create one. I also wish I would've better understood, and accepted the gravity of my situation, when it first happened. I was in denial for at least the first year, thinking that my will, would be strong enough to cure me. My ignorance has caused me a lot of suffering. That is why I think it's important to share my story, in hopes of educated the general public; both to the need for cure research, but also to encourage people to think about their own standards, and definition of a quality life, and to put those wishes down in writing, just in case.
Because I didn't think things through before hand, or have a living will, I created a very difficult life for myself (unintentionally), by having to live within the confines of paralysis. Living with paralysis (at my level-C4/C5 complete) means I have very few options. In order to stay alive, I HAVE to take medications, accept help from others (for EVERYTHING), and tolerate unbearable (to me) treatments, like having an indwelling catheter, and bowel program. I HAVE to do all of those things, just to survive. That doesn't include coping with the loss of freedom, lack of privacy, loss of sensation, loss of dreams, aspirations and having to deal with constant compromise. It also doesn't account for the physical pain, discomfort, and sickness, that comes along with living with paralysis, and ultimately autonomic dysreflexia.
I have come to a point in my own life, where I'm struggling with the question "is this life worth living for ME, or am I just prolonging my own suffering?" I think it's a very valid, important question, that many people will have to face, at some point in their life. In terms of quantifying the quality of one's life I think there are five key factors. When I think about quality of life, I think first & foremost about the ability to care for one's self. If a person has that, he/she already has a million reasons to fight, to stay alive. Being able to be self sufficient allows for endless possibilities, in terms of things he/she can do, places he/she can go, things he/she can still experience. The amount of available options out there, for people to "regain" lost abilities, and or sensation, is a blessing and decreases with every level, further up the spinal column. When you think about person like me, that has no alternatives, to replace or substitute most of what I've lost, it is all the more harder to face.
The second aspect of life I look at, when determining quality of life, is physical suffering. My best friend just lost her mom to lung cancer. When they diagnosed her, she was already in stage four. She spent the last six months of her life, in misery, doing chemotherapy and treatments, that didn't help a bit. Instead, they made her physically ill, and weak. It became increasingly hard for her to want to go through with the treatments, because the treatments themselves were like torture, and only contributed suffering. Physical suffering and illness, have a huge impact on overall mood, and the ability to find happiness. If someone is in constant pain, or physical distress, or discomfort, it is incredibly hard to focus on much else, and there comes a point, where the scale tips, to being not worth living.
I think the third important component to quality of life, is having loving, meaningful relationships with other people. Having a strong support network of family, and friends, definitely contributes to overall satisfaction with one's life. If someone feels loved, and wanted, it gives them purpose, and motivation to return that love, and friendship. Friends and family, offer moral support, an ear to listen, and a shoulder to cry on. Having quality care givers, that you can trust, and feel safe with, also helps provide security and helps to maintain physical wellbeing as much as possible, given each particular situation. Often loved one's play the part of caregiver, and their vested interest and love, in the individual with needs' life, ensures a higher standard of life.
The fourth factor, in determining quality of life (or potential to improve), would be having a passion for something you do, that brings meaning and purpose to your life, and contributes to society. Having a job, volunteering, going to school, or even hobbies, provide distraction, as well as boost feelings of self worth. Feeling needed is important. Having an inner drive, or motivation, to complete a task, or goal, can provide reasons to want to keep living. Teaching art, has always been my passion. I miss my classroom, and my kids terribly. Having such a physical based passion, has made it hard finding satisfaction, in just having a very limited amount of ways I can still do what I love. I have been able to continue to teach others, by creating artwork by my mouth. It has provided me with an outlet for one aspect of my old life, but there are countless things that I can no longer do. Words and writing, have also served as a means of expression, and tool for educating, but I miss being able to demonstrate and do so much, and the things I can still do, are often not enough to satisfy my needs.
Last, in terms of quality of life, and overall happiness, I think of superficial things, like looks, and material possessions. Self esteem, and self image are important factors in a person's life. People often become sad, or depressed when they don't fit, their ideal image, for themselves, or when having to cope with drastic physical change. My body has changed immensely, due to my spinal cord injury, and there is very little I can do to change that. Before my accident I was very sensitive about my looks, and about my weight. I watched my diet carefully, and exercised. I always did my hair, shaved, put on make up, wore jewelry, got my nails done, wore nice clothes, and used perfume. I had even planned to get cosmetic surgery (my procedure was scheduled for 6/27/05- my accident was 6/5/05), because of my insecurities, and my quest to be the ideal version of myself.
Now, the overwhelming majority of my body is flabby. I have no way to exercise, or tone most of my muscles. I have many scars from all the surgeries done to my neck, and for the suprapubic catheter I have. I can't groom, or dress myself, in any way. I rely on others, for everything, and although my caregivers help me, some things are embarrassing, or awkward to ask for and accept help for (like shaving, going to bathroom, brushing my teeth, cleaning my ears, clipping my toe nails, blowing my nose, dealing with acne and dealing with my period), or just never turn out the way it would, if I were doing it for myself (like feeding myself, putting on makeup, and fixing my hair). It has been very hard, getting used to living in a body, I no longer feel, or recognize.
It has not been easy, to look at myself in the mirror, or go out in public. I'm constantly comparing myself, to my old self, and to my peers. Going out in my wheelchair, is especially difficult, not only because of the attention the chair draws to me, but the fact that other people witness me, needing help, being dressed, groomed, and fed. I often feel like some sort of bizarre spectacle, and I find it extremely hard to relax, or enjoy my surroundings. Going out, also always triggers bombardment of memories, which inevitably bring bittersweet joy, and pain.
As far as money, and material possessions go, they are necessary, and can help, in improving quality of life, to a certain degree. Having the money for adaptive equipment, and technology, can open up more possibilities, and widen a person's variety, of things that he/she can do, and can provide a higher degree of independence (which is crucial). Having special equipment, and accessibility, also makes it easier and for more efficient care giving. For example, having a Hoyer lift, makes transferring me, in and out of bed, much, much easier, and safer for me and my caregivers, than my caregivers having to manually lift, or carry me. Having a wheelchair accessible vehicle, offers me the freedom to travel, and go out, much more easily and frequently than having to rely on medical transport services, public transportation, or being transferred in and out of cars manually. Having the resources to make one's living environment as accessible as possible, provide quality (necessary) medical care and having a wide variety of activities, and things to do, all play a role in helping improve overall quality of life.
It's hard for my loved ones to accept, but I feel like my life has come to a point where just living, equates to physical, and emotional suffering. I have very few options available to improve my quality of life. I can't care for myself. The things I CAN do are very limited, and EVERY aspect of my new life involves change, and/or compromise. I have a lot of physical pain, and discomfort, much of which there is nothing that can be done to change it. My IBS makes having a bowel regime difficult. Having a bowel program is both mentally, and physically taxing. Right now, I have BP every other morning. Before my accident, I went "number two" at least once, or twice a day (thanks to my IBS-some days I might've had to go as many as four, or five times, in one day).
Having a nerogenic bowel, and bladder, makes life very difficult. I have to rely on an indwelling catheter, for urine, which keeps me constantly susceptible to infection. The BP requires I take seven pills (2 stool softener & 5 fiber), each day, plus watching my diet. It is extremely embarrassing, degrading, and invasive, and has never gotten easier to cope with. It involves me sitting on a commode, and a nurse has to give me a supository. The nurse has then digitally stimulate my body to "go," multiple times, each time having to insert her finger, to verify if my bowel is clean. It takes about two hours, and it's absolutely horrendous. If I don't have a successful BP (don't go enough) I have to worry about having incontinence, and end up having to have BP repeated the next day (which ends up making 3 back, to back BP days-for scheduling purposes).
The whole process is not only an extreme violation of my personal space, it is physically uncomfortable. I get cold sweats, nausea and chills from the stimulation, and have chronic hemmrhoids. I'm convinced my daily chest pressure, and nightly fevers, and dsyreflexic symptoms are because my body wants to go to the bathroom, but can't. I can no longer feel the urge to go, or gas pains, but my body interprets that pain, and creates autonomic dysreflexic symptoms. AD symptoms can get very severe, and can result in stroke, or death. My only "option" besides having a BP, is a colostomy. I refuse to do that. The thought of having another artificial hole cut into me, and a bag of feces strapped to me, is just too difficult to bear. It would only decrease my quality of life, which is already very low, in my opinion.
The only things I have going for me, is the love & support, of my family & friends. I am blessed with amazing friends, that have taken an active role in my life, and have stood by side, through my hospital stays, visited me at the nursing home, and continue to visit me in my home, keep in touch with me, and invite me to do things. My family is supportive, and has helped me in, many, many ways. Their love, and affection, has been my one constant driving force. My family is there to comfort me, help care for me, and continues to make feel loved, and wanted. Besides my love for my family, friends, and pets, I have my art and writing. Both have been an outlet for me to express my feelings, and my pain. Both my art, and writing have given me purpose, to use my talents to teach others about paralysis. They have made me feel like I have something to contribute to society, a method of spending my time, in meaningful way.
Unfortunately, I've been suffering for so long, and my symptoms are only getting worse. There is no cure, or quick fix. When I think about all the factors, and weigh all the variables, that contribute to MY daily life, the negatives vastly outweigh the positives. The room for improvement, to much of my life, is slim, and seemingly inconsequential, when stacked beside the physical and emotion pain, I have to endure every day. At some point, I feel justified in saying I've suffered enough. I feel it's horribly unfair, that I'm forced to live, the way paralysis has forced on ME. I'm not talking about "quadriplegics," I'm talking about Christina Symanski. I'm talking about MY personal losses, disappointments, limitations, and physical pain and discomfort, that MY body presents me with, due to MY unique physiology, and IBS. I can't speak for anyone but myself, in terms of quality of life. I wish there were more answers for me, untapped options, but I know there aren't many, I haven't explored, that are reasonable, or that I'm willing to do (like the colostomy). So then I'm left with the question, "is it really worth living?" Not for everyone else's reasons, or for anyone else, but ME. If not, than I only have but one choice, and that's to stop accepting the treatments that are prolonging my unnatural lifestyle. My only hope, and biggest obstacle, is that my loved one's understand and accept my wishes, and know that my wish is to prevent suffering, because I don't view THIS as a quality life.