Not Doing So Good :(

I haven't been doing too well, for some time now. My physical health hasn't been the greatest, which I'm sure has played its part in my overall decline. As many of you know, from reading my blogs, or living with paralysis yourselves, I have to deal with a certain amount of medical issues, on a weekly basis, that I struggle with, greatly. Even after five years of being injured, I've still yet to come to terms with needing help with personal hygiene & bathroom issues. I've yet to find a way, to "just deal" with having another adult shower me, dress me, and feed me. Worst of all, is the need for a catheter, bowel regime and constant fear of incontinence. They all bother me just as much as they did when I first got hurt. I try my best to block it all out, but instead of getting easier, it's becoming increasingly more difficult. Part of the reason, may be because, as time goes on I've had to deal with more & more related health issues, that are just wearing me down. I've had countless UTIs (despite trying to stay hydrated, taking various medications & attempting to be as sterile as possible), most of which, I've tried to tough out, without antibiotics, because they often render my bowel regime useless, which is ultimately more upsetting&can cause skin breakdown. There are times though, when I'm just too sick to ignore and either land myself in the hospital, or force me to breakdown and ask for an antibiotic. Even that is a hassle, because half the time, the laboratories kick back my specimen, without culturing it, because they think it's contaminated. Apparently, I live with a pretty outrageous amount of bugs in my system, because even though we explain it's from a catheter, I've had more than one lab reject my samples. So then, I'm stuck with taking an antibiotic that may, or may not clear up the infection, and the wonderful stress, of worrying about accidents. This is all on top of the dozen or so pills I take on a daily basis, just to stay somewhat functioning (mostly bowel & bladder related, with a couple anti-depressant, anti-anxiety meds).


Yesterday, I spent all day at the hospital for a UTI. I just took an antibiotic called Leviquin, about three weeks ago, that obviously didn't work. They took blood & urine, gave me a ridiculously strong IV antibiotic& a prescription. I was in the ER for about seven hours (two of which, were just spent waiting for an ambulance ride back to my apartment). The whole time, I'm trying my best not to freak out, or have a panic attack, because my absolute worst fears & experiences all revolve around the hospital. I spent the first year & a half, after my accident living in Robert Wood Johnson ICU, Kessler rehab, ST. Barnabas ICU, Cheshire nursing home, Morristown Memorial hospital and then back to the nursing home. Despite having daily visitors, most of the time, the large majority (mostly at night) was spent painfully, and terrifyingly, alone. I can't even begin to describe the loneliness, fear and sadness that I experienced, most nights. At times, I was literally at the brink of death, most times, just overwhelmed with loss and fear. I doubt anyone, has pleasant hospital memories, however, being hospitalized and totally paralyzed, feels like hell on earth. You are 100% at the mercy of the hospital staff, especially when you can't even hit a call bell, reposition yourself, get a drink, change the tv channel, work the bed controls, pick up the phone, or any other small comfort, that the average person can do. Plus, thanks to HIPA, I end up having to re-explain that I'm paralyzed, almost every time someone besides my nurse, or doctor enters the room. Honestly, I rather have staff read my chart, than have to explain why I can't make a fist, or raise my arm, or any other stupid thing. Even when I have family, or friends with me, I feel scared and lonely. I just want to be home, and I'm dreading the time when they'll have to inevitably leave me behind. The few times people stayed overnight with me, I still knew they'd eventually have to leave. Plus, I felt horrible, because I knew how uncomfortable & exhausted they must have been, trying to comfort me. As crazy as it might seem, I couldn't even watch a tv show or movie about the hospital, without feeling panicked. Although, thankfully, I haven't had to stay over night in the hospital, since I've been home, the fear is always there. Horribly, in the end, with or without visitors, I often still feel alone.


Short of having a person climb into bed with me, it's hard for me not feel alone. I can't feel people holding my hand. I can't feel much of anything. Other people with paralysis and therapists have said stuff like,"You can still feel your head, neck and shoulders.You can learn to substitue affection to the areas you can feel" and/or "intimacy is mostly in the mind." For me, paralysis has been extremely isolating and I feel extremely deprived. Not only do I feel emotionally cut off (because most people have no clue what it's like), but physically, alone. I so often, feel like I just want to be held and be able to embrace the person back. Not that a hug would really solve anything, I feel such a void in my life. A big part of that emptiness, is not having a signifigant other. Family and friends can only do so much, and although I love them and am tremendously thankful for the people in my life, there is ahuge, gaping emptiness inside of me. I miss having that other half, to hold me and make me feel safe. It's a different type of love and affection, and it's been lacking in my life for a very long time now. Sometimes, I feel as though, I'd be stronger and feel as though I would have more purpose, if I had a husband in my life. At the end of the day, my friends& family, all have their own lives, and I feel completely lost and empty. Part of my problem, is that I honestly still love my ex (the person I was with, when I was hurt) and our break-up isn't something I've been able to get past. Mostly because, we both feel like we'd be together, if I were never hurt. All my dreams were ripped out from underneath me overnight, and being with him was one of those dreams. The events that followed my accident, made it impossible for our relationship to work, and although I have no way of knowing how my life (or our relationship) would've turned out, up until this point, the abruptness of how it all ended, makes it unbearably difficult to move forward.


As unbearable as it's been without him, I'm full of doubts within myself as well. I don't know that I'd have been able to be there for him, if our situations were reversed, and that's an ugly reality, I didn't want to admit to myself. You think that love should be enough, but the reality is, that each case is unique and you really can't judge anyone, unless you've been in their shoes. Part of me feels like, if he truly loved me, we'd somehow be together. Another part of me says, I'm not sure how I'd handle it myself (in his shoes or even now, in my position). I don't really know how I'd deal with having a romantic relationship, on top of all of this. There's so much of my life, I'd want to shield, or hide, that I couldn't. I only know what I had, and recognize, it wouldn't be the same. Regardless of who I'd be with, the thought of letting anyone into my life in that way, both terrifies me and leaves me feeling very skeptical. Why would anyone want to willingly choose, to take on all the hardships that come along with my life? I'm trying so hard to run away from them myself, so why would anyone welcome them? Plus, there's my overwhelming sense of guilt, that I could never contribute even a fraction of what that person could. Also, there's my want to be with someone that's able bodied, because otherwise, I feel as though, it's just another friendship. How can I expect someone else to want something I don't even want for myself? Part of me feels like a bad person, for not being able to see past all the physical, but it's so much of the physical, nurturing aspect of a relationship, that I feel so lacking and that I miss.


My failed relationship with my ex, is just one of many hugely important goals/dreams that I've struggled with since my accident. There's the career I worked so hard for, achieved, then lost. Then, there's the dreams of marriage and children, I've had since I was a little girl; on top of ordinary goals, like owning a home, playing an active role in helping family & friends and common milestones. For the past five and a half years, I've been watching all of my friends accomplish the things I thought I'd have (and still desperately want). Every day, I see painful reminders of what I could've had, but ruined. It's not to say, I absolutely couldn't teach, get married, or even have children, in my condition. What most people fail to see, or understand, is that the aspects of' those dreams that I most looked forward to experiencing, would be gone. I can no longer do most of my favorite parts of my job, which include, the physical interaction with the materials, the hands on working & demonstration with the kids and the physical tasks of organizing, showing, managing and doing. Yes, the ideas are still there, but so much of what I loved, was making those ideas into reality. It's the kinesthetic, tactile sensations that I love most about art, and most of that is gone. Marriage and children, come with a ton of experiences that I'd completely miss out on. It kills me, to think I'll most likely never experience most of the things I've dreamed of my entire life. The compromises just seem so pale in comparison. I've looked forward to all the traditions of marriage, not just the piece of paper. I want to go try on wedding dresses in front of a million full length mirrors, WALK down the isle arm & arm with my dad, dance my wedding song with my husband, be carried through the threshold the night of my wedding, and make tons of love on my honeymoon. I've been dreaming, and wondering ever since I was a little girl, what it'd be like to be pregnant, feel my baby growing inside of me, having my husband rub my belly, decorate the nursery, go into labor, hold my baby in my arms, and breast feed. If I had a child, I looked forward to bathing it, feeding it, dressing it, rocking it to sleep and keeping it safe. I don't know that I could handle all the compromises and being a spectator. It breaks my heart, just thinking about it.


I've been struggling with all of these issues, since day one (June, 5, 2005). Instead of getting easier to cope, it's gotten harder and harder. Every year that passes, seems like a year lost, a dream gone forever. Every day that passes without a breakthrough, or a cure, it seems less hopeful. Every politician's decision or governmental set back to funding, seems like a punch to my face, like a personal attack. When people fight over research, it makes me feel so insignificant and worthless. How can people value cells, already predestined for the trash, more than me; a living, breathing, suffering, citizen? Why is there hardly any money or time to find a way to repair the spinal cord, but plenty of time and money, for war and exploration of other planets? Why is it ok for me to have to live this way? Why do so many people do foolish things, and/or even mean, horrible things, but get to spend full, healthy lives? It's getting to feel to be too much, too overwhelming, more hopeless, emptier, unbearable.


I've talked to my doctor about changing my anti-depressant medication, in hopes of helping me regain some ability to cope. I'm at the point where I feel as though nothing is taking off the edge, nothing is distracting enough. I feel awful, sad, lost, scared and lonely. I know I have people around me that worry,care about me and support me. Nothing is enough, and I feel helpless and horrible and don't want to feel this way. I'm skeptical of how much difference a pill will make, or even what talking about it can do. Nothing, short of fixing my spine can really serve as a solution, but I feel as though I've hit a wall. I feel worn out and at a loss for how to keep going forward, by just continuing what I've been doing up until now. I feel as though, I'm quickly unraveling, and it terrifies me. Asking for help scares me, but saying nothing scares me more. It's especially hard finding (or believing) anyone that really understands what I've beenthrough and what I'm going through. Many of my disabled friends/acquaintances are men, and I feel lack the ability to truly understand my perspective. I'm always concerned my honesty will upset the people that love me, and therefore hold a lot back. I'm at a point, where I feel I must speak up, to keep what sanity I have left. I don't even know how anyone can really help me. I know part of me, should just force myself to go forward, and do things, despite my lack of drive, or desire, but then I start to wonder who I'm really forcing myself for. Do I really want it for myself, deep down, or do I just not want to further disappoint myself & loved ones; but at what cost? My mind is currently just a chaotic mess of mixed emotions, sadness, frustration and fear and I'm desperate for some real solutions, if there are any.