I've gotten quite a lot of feedback, from my last two blogs, which I originally posted in the CareCure (online community related to spinal cord injuries)forums. Besides the wonderfully kind words of encouragement, and empathy, two of the key issues that were brought up were, possible alternatives to some of my most difficult obstacles and suggestions based on personal experience. I really appreciate all the ideas, feedback, life stories and concrete answers that people took the time to write. A few of the issues that I would like to highlight, and expand on reasoning, are the issuses of personal hygiene and my reasons for being so open about my life; even embarrassing and/or painful aspects of life, that most people find hard to discuss.
The number one, hardest aspect of living with paralysis for me is all of the highly intimate hygiene issues that I need help with. One of my biggest stressors is my bowel program (as itis for many people in my situation) and the only real alternative, would be to have a colostomy. This has been suggested to me, both recently and in the past. The thought of a colostomy bag is (to me) 1,000 times worst than BP. Just the thought of it depresses me. No offense, but it's definitely not for me Ideally, not having to go number two in the first place would be my solution. Unfortunately, that's not possible. The whole bodily fluid thing really disturbs me & grosses me out. I'd literally give up eating, if it meant I only had to deal with urine. As much as I love food, I gladly trade in a liquid diet, if it meant I could avoid needing to ever have a bowel movement. That's how much I hate the whole process, in general. I know it's a natural bodily function, that everyone does. I've just always been uptight about it. I guess you could say I'm somewhat "poopaphobic." I don't want to have to do it, or be around it, so the thought of having a bag of it strapped to me, is probably the worst case scenario I can think of. I've always been very private about bathroom & hygiene stuff, so being paralyzed is horrible. I find it disgusting and unladylike. I normaly would've never wanted to discuss it (and find it challenging to be so revealing), but feel it needs to be said, because the average has no clue, and would otherwise (and often does) take this fact for granted. I'm forced into having help with bathroom needs and it's never gotten any easier.
Sometimes I think being a woman, makes it even harder to accept & not be embarrassed. I don't know, but all my guy friends (able bodied & non) are way more easy going & less bothered by stuff like that. I mean let's put it this way, I dated someone for almost six years (also lived together for a portion of that time) and I never once passed gas in front of him. In the 24yrs I was on my feet I never once went number two in a public restroom. So you can imagine, having BP & a catheter is pretty much like hell on earth for me. Not to mention, as a woman, I have to also accept help every month with my period & other various feminine hygiene issues, that men just don't have. All in all, the adjustment to needing help with all personal care ADLs has been difficult.
Just the fact that so many people have to see me naked bothers me. I've always been self conscious and have had body imagine issues. My paralysis has not only made my body even more flawed, and less appealing, it also forces me into showing those flaws to numerous people (on a daily basis), over & over again. Its mortifying having to have someone else do stuff like brush my teeth, shave my under arms, clean my ears, help me blow my nose, acne, etc. I used to go to great lengths (as do most woman- doing my hair, make up, creams, shaving, plucking eye brows, getting manicures, exercise & diet) to look nice and to feel good about myself and feel as though I was pretty. It's not only embarrassing needing help with all personal hygiene needs, it also undermines my dignity and self worth. I'm forced into revealing every flaw and forced into having to ask for help, to look nice and correct imperfections, that under normal circumstances would be totally secret/private. It's all very challenging.
Like I've stated over, and over again, I'm just looking into all of my options. Living with paralysis has not been easy for me, and I'm tired of chronic sickness. This is not my first bout of serious depression, nor is it necessarily my last. Living with paralysis is a daily struggle. Choosing to fight to live the life that I have, is one of the few things that is still within my control. I will continue to do so for as long as I possibly can. I'm just the type of person that likes to think ahead, and take comfort in knowing that I'm in control of whatever aspects of my life that I CAN control. Paralysis has robbed me of almost all of my independence, so I'm forever seeking new ways to take back whatever control I can. My mind is one on the few assets I still have, and although it can at times be a curse (haunting memories and crippling grief) it has allowed me to be able to manage my own affairs and make decisions about my care, and overall quality of life. My mind continues to be the greatest source of pain, and although I realize that my perspective, way of thinking, and acceptance can change over time, I'm the only one that can make those changes. I struggle daily with the inner turmoil, of dealing with the life and choices paralysis gives me, and my sadness and desperate longing to have the type of life I once had. I realize it's a battle that only I can fight.
Last week I was chatting with an online buddy named Mariam about being so depressed lately. She's also a member of the AMFPA. We share a lot in common, in fact she's one of the few people on the planet that I feel like can truly understand where I'm coming from. We're around the same age, both artists and both suffer from similar spinal cord injuries. She's been injured for almost fifteen years now, and is one of those rare gems, in that she's somehow been able to keep it together, keep moving forward and find joy, despite being paralyzed. I had reached out to her, sending her a link to the CC thread, to get her point of view.
We had a long chat over Skype, and I really enjoyed our conversation. It always feels good to vent, but I particularly felt relieved talking with her, because I feel as though she really understands where I'm coming from, and has experienced much of the same struggles that I'm going through. She's amazingly positive and is seemingly much more open minded and receptive to going with the flow, and accepting her life with paralysis, much better than me. She'd probably agree with me, in saying that her current state of acceptance, and/or her strength and perseverance, as well as her current frame of mind, all took time, and that it might not make sense for me to beat myself up, for not being as strong as she is. She readily admitted to me, that living paralysis has also been a struggle for her, and that she also experienced a period of about two to three years (around her five year anniversary), where she was extremely depressed and in a similar dark state, that I'm currently experiencing. She was obviously, able to overcome it, and although she has her bad days, seems more well adjusted and happy with her life, living with paralysis, than I can ever imagine for myself, at this point.
During our discussion, I was expressing my wish for being understood, and how little I feel the average person really knows, what it's like to be paralyzed. I said I especially wished my loved ones understood how much I'm suffering, and how hard it is for me to live this way. Mariam then asked me, "What if they did understand? What difference would that make?" It was the first time anyone had ever asked me that, but I immediately knew the answer. I had to hold back tears to answer her, but managed to respond with a shaky voice, and tell her the answer that's been tugging at my heart and mind for a long time now. It's a two fold answer, that has been my driving force.
Firstly, I feel as though if people really understood what it's like to live a day in my shoes, they'd absolutely want to find a cure. I know in my heart, with 100% certainty, that anyone who could experience the grief, loss, fear, and sense of powerlessness that paralysis causes, that they'd want to fight with every ounce of energy they had to want to cure it. I feel as though, funding for research and emphasis on finding a cure to paralysis would take precedence and support would sky rocket, if more people really knew what it felt like to be paralyzed and to really comprehend how ethereal life is, and that their lives can change, as quickly as mine did, at any given moment. It is for this first reason that I pour my soul out to strangers and open my life up to the general public. As hard and as embarrassing as it can be at time, my goal is education. I want people to wake up, and understand what being paralyzed means.
Secondly, I feel as though if my loved ones truly understood my pain, and could experience all that I've been through, and all that I'm feeling, that they'd be able to let me go. This second part to the answer is what I told Mariam, and is what most often crosses my mind. I feel as though anyone that truly knew my pain, would be able to understand why I long to be free (by death, or by cure) and be at peace to let me go. I often think people expect me to keep marching forward, because they don't (and can't) know what they're really asking of me, and what a struggle it is every day. Although my loved ones might see my death as something horrible, and sad, I'm at a point where I'm tired of the daily battle and would welcome it. I just want to be free again. It doesn't mean I don't love my family and friends, and wouldn't miss them. They just don't understand how hard living can be. It's my hope that by sharing my thoughts and feelings I can help everyone (anyone who is willing to listen) to understand paralysis better and to motivate others to fight for a cure. Even if I never see a cure, I would feel at peace knowing I helped to prevent other people from ever having to experience all that I've been through, if I can inspire others to support finding a cure. Although I have little hope for a cure for myself, I do still wholeheartedly believe that a cure will be found some day. Again, I don't wish to upset anyone. I'm just being honest and sharing my thoughts, and where I'm at, right now in my struggle with paralysis.
Check out my buddy Mariam's website- I love her work!
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