It's Hard Feeling Happy, When You're Feeling Sick.

As I mentioned in my last blog, I've been doing a lot of soul searching and actively seeking out answers to some tough questions. My state of mind is an ever changing battleground, where I find myself forever fighting to find reasons for why I'm suffering, and looking for motivation and purpose to keep moving forward. One of the biggest obstacles that makes living with paralysis such a struggle for me, is chronic illness and feeling physically sick. The near constant discomfort has left me feeling very worn down and has pushed me to examine my life very closely, and ask myself why I try so hard, despite my unhappiness, and if there are any solutions out there, and what all of my options are, regarding my life, as it is.

I recently discussed some of these questions with my doctor. He was kind of vague in his responses. He's a PA with a visiting physicians group. He sees me at home about once a month. Most of his patients are elderly. It gets frustrating at times (even when I go to the hospital) because most doctors (including mine) aren't specialized in dealing with spinal cord injuries. I feel like most of the time we're just playing a guessing game, trying to pin point why I'm feeling sick. Most of the time, I get told it's a UTI or possibly neurological. In other words, they don't really know for sure. Understandably, it's probably just as frustrating for them, because I can only tell them secondary symptoms (since I can't actually feel what's going on) like fever, chills, chest pressure, sweating, etc. Given the fact that I have a catheter, my urine specimens always come back positive for infection, so half the time I wonder if it's a UTI that's making me feel sick or something else. All we ever do is run tests, but never find anything concrete. Honestly, I don't know that a specialist could do much better. I'd just feel more confident if I had more access to doctors that had more experience dealing w/SCIs. The only place we really have in NJ for outpatient care is Kessler Rehab, which is an hour commute. It's just not worth going there, every time I feel sick.

Aside from the emotional trauma and dealing with an insane amount of loss, living with paralysis has been physically taxing as well. One of the biggest problems for me personally, is my ever diminishing tolerance for sitting in my chair. My ability to sit in my chair, be productive, go places (not that I'm often itching to go out) and do things, has gradually become more and more uncomfortable over the past couple of years. The discomfort and the chronic sickness has made it very hard for me to find joy in the things I used to. Ever since I had a bed sore (6cm wide and deep- at its worst- on my upper thigh, below my backside) back in '08 my tolerance for sitting just isn't the same. The first couple of years post accident I could comfortably be up in my chair for 8hrs a day, 7 days a week. Now, I get out of bed on bowel program days (which ends up being like 3 hours on a commode chair-for BP & my shower) and then spend the rest of the day in bed; sitting up in bed for an additional hour or so around dinner time. I try to get into my power chair on non BP days, but lately it all depends how I'm feeling. The thing is, I end up getting very uncomfortable in my chair after only sitting for a few hours. My symptoms vary, but it usually starts off with a clammy sensation, followed by weird tingling throughout my body, then further followed by a gradual pressure building up in my chest and/or abdomen. On top of that, I'm constantly dealing with leg spasms, phantom pain and tingling in my legs and feet. I end up asking my aides or family to check if my catheter is kinked, if my clothes are wrinkled, if Id had an episode of incontinence, or any other visible problem, and we almost always come up short.

I do periodically weight shift while I'm in my chair, and have only ever had two bedsores (one was on my elbow). Most of the time there's just no real rhyme or reason for why I start feeling symptomatic. The chest pressure gets really bad though. It feels like someone is filling me up with air and squeezing my sides all at the same time. I also start to get lethargic and feverish after about four hours of sitting. I've had various tests done to rule out serious heart or lung issues: blood works up, X-ray, CAT scan, sonogram & EKG. All of them came back fine. I take Prilosec OTC and have ruled out indigestion for the most part, because there's no obvious connection to meal times. I had a OBGYN exam to rule out anything on that end, nothing. Although, I have noticed a change in my cycle this last year, in the sense that around that week I feel worse than usual. During that week I'm usually achier, more tired and have more frequent fevers. All in all, it's been a vicious cycle, that has kept be bed bound most of the time. For whatever reason, the symptoms do subside a bit more when I'm lying down (not completely though). Knowing I'm going to feel uncomfortable makes me not want to bother getting up, which in turn lessens my tolerance for sitting up. It's a lose-lose situation. I'm just so tired of feeling nauseous, feverish, achy, and down right icky, 75% of the time. It's kind of like having the flu five days a week. It makes it very hard to be happy, or motivated, when you have the chills and feel discomfort.

I'm at my wits end. On one hand, I want to get up and be more productive. I end up feeling guilty and worthless for being in bed all the time. On the other hand, I legitimately feel sick, and lack the drive to do stuff and risk feeling worse. On BP days for example, I'm wiped by the time the nurse is gone, I'm showered and have eaten breakfast. Just sitting on the commode for three hours is taxing on my body, not to mention the constant stimulation the nurses have to do, to make me go to the bathroom. The whole process is both mentally and physically traumatic for me. It has also created hemorrhoids (how wonderful) that are directly irritated further by the entire process. I never had them before my accident, but I hear they are extremely painful. Although I can't feel the pain directly, it could be one of the contributing factors to my mystery symptoms and discomfort.

I end up chalking up a lot of my discomfort to autonomic dysreflexia, which is something many people with paralysis have to deal with. AD is the body's way of compensating for the fact that Ican't feel It is like nature's way of giving me a warning system. When there's something wrong, like my catheter being pulled, or an ingrown toenail, my body responds by elevating my blood pressure. The alleviation in blood pressure presents itself in different ways: chills, profuse sweating, muscle spams and throbbing headaches. If I start to feel symptomatic, I usually assume it's AD related and try to find the cause. If we do find a reason and fix the problem (such as repositioning me, or flushing the catheter) the symptoms subside almost immediately. Unfortunately, most of the time we don't find an obvious reason. So although I know my depression is a contributing factor to me being unmotivated and dissatisfied with my life, my reasons are not all in my head. My physical condition (aka-paralyzed) is the number one contributing factor to my depression, and my overall health and comfort has made it even harder to remain upbeat. Able bodied or not, no one likes being sick.

Having no real diagnosis or treatment for the chronic pressure, fevers (always low grade and always in the evening) and cold sweats makes me very frustrated and adds to my sense of hopelessness. As it is, I take over a dozen pills every day, and have the BP & catheter to contend with, all of which I absolutely hate. All of which, is unfortunately necessary to keep me alive, and relatively comfortable and healthy. The only problem is, it's obviously not working- at least not well enough. It's especially aggravating that I seem to be forever adding more pills and seeing few results. I take three different medication to help with depression, anxiety and insomnia (Pristiq, Remeron & Xanax). I take four different medications for my bowel & bladder related issues (Senekot, Colace, Detrol & Ditripan), on top of watching my diet. I watch my calorie intake and make sure to eat lots of fruits and/or veggies. Then there's the Prilosec, which is supposed to help with stomach issues and a multi-vitamin. It's bad enough being paralyzed, but feeling gross on top of that, just makes me want to curl up and sleep forever. It's like having a chronic illness, on top of a chronic condition. There's no cure in sight for my paralysis, and there's seemingly nothing to make me feel better. I wonder how many people with spinal cord injuries deal with similar problems. It's hard feeling like no one understands you and even harder feeling like there are no answers. I'm just stuck dealing with it; just like all the emotional pain.

Like I said, I've been feeling very down and tired of struggling so hard to cope with my situation, only to feel empty and sad. It's hard fighting for a life you hate living. That's why I started to seriously consider what it would mean to stop fighting. I mean, in terms of the physical and medical repercussions. It's not to say that I have already decided to stop trying. I'm literally just searching for answers. During these last five and a half years, few people have had any concrete answers to give me. There's no recipe for how to cope with having your life turned upside down over night, or how to deal with finding yourself complete stripped of yur independence. Everyone's situation and injury is different. The emotional scars and finding reasons to move forward have to be dealt with on your own terms. No one can say or do anything to make the emotional aspect of dealing with paralysis easier.

It's just infuriatingly frustrating when there's not any answers for the physical stuff. I get so angry sometimes. It seems so unfair that medical science has no cure; that they patched me up and sentenced me to live the life I have. It seems absurd and cruel to me at times, that my loved ones, doctors and nurses expect me to be happy, being paralyzed. It is not a high quality of life, no matter how you slice it; not to me. I feel I have the right to know all the options available to me, because at the end of the day, I'm the one living my life. I'm the one suffering, both physically and mentally. I'm the one that has to endure bowel programs, chronic aches, lack of privacy, cope with all of my memories and all of the loss. I never get a break from it. I never have the luxury of not thinking about it. I'm stuck, in every sense of the word.

I want to know what to expect if I were to say, enough is enough. What would happen if I stop having a bowel regime? What would that do, to a person in my condition? My doctor didn't really have an answer to that question. So I'm left wondering, who would have the answers? I'm not even sure who to ask, for some of my questions. That's why I've opened the subject up to general discussion. I figure there might be people out there who went through something similar with loved ones, or doctors, or nurses that have experience, working with people with paralysis and palliative care. My doctor thought I would qualify for hospice, if I decided to refuse nutrition, hydration and my treatments. He didn't know for sure. I'm wondering who would know. It's not as if I'm taking this matter lightly, and just saying I'm too sad, so I'm going to stop eating. I'm just curious to know exactly what my rights are and what to expect, from a medical perspective, if I chose not to sustain my life; if I decided to refuse help. In a way, I feel like everyone is tip-toeing around the answers, even if they know them, out of fear. It's as if people think the moment I have a few answers I'm going to die that very day. That's not the case. Surely, the thought of starving myself to death does not sound pleasant, and I'm in no rush to find out what it's like. I have looked into it though, as it is one of my only means of escape.

I've read up on the right to refuse nutrition and hydration. There is information based on eye witness accounts. For example, I read it's best not to intake any water at all, because it only prolongs the suffering. I read instead, you should just use a sponge to moisten the lips, to help alleviate the dryness, due to thirst and dehydration. I want answers, because if I really felt as though I absolutely had no will left to fight, I'd want to make my last days the most comfortable as possible. Refusing bowel program and what ever else, I'd decide to stop, would be careful decisions that I want to make based thinking things through and only ever as an absolute last resort.

I realize this might all seem morbid, and/or suicidal to the average healthy individual. The truth of the matter is, I have very little control over anything in my life and I've been hell and back. I know exactly what it's like to be on the brink of death. I've experienced being dependent on machines for life support. My life span is not that of the average person. I am not healthy. I know what it's like to feel like a burden and to have put family in the position to have to make life and death decisions for me. Therefore, I feel as though I both have to and want consider ALL of my options. I've already had to put my wishes down in writing, in my advanced directive, in case I'm unable to communicate my wants. I'm just at a place right now, where I want to know all my options, even if I decide to exercise while I still can communicate them. I mean, my living well basically already states everything I'm asking. I'm just wondering what I'd go through, and/or experience physically, based on medical experience and advice.


- Posted using BlogPress from my iPad

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.

One step forward. Two steps back.

Two weekends ago was awful. I thought I had caught the flu. My everyday life is enough of a struggle as is, and being super ill on top of things is just unbearable. I started out on that Wednesday, with just an annoying tickle in the back of my throat. Unfortunately, it quickly turned into an achy chest cold by the next morning. I tend to panic whenever I develop a cold, because I'm afraid I won't have enough lung power to cough properly. The more I cough, the more tired I become. If I’m really having difficulty I need someone to roll me onto my side and pound on my back. The tiniest bit of mucous can take me 20 minutes of coughing, before I can bring it up & out of my lungs. It makes me very susceptible to bronchitis & pneumonia. Despite all my efforts, I still ended up with a small amount of fluid in my lungs, by Saturday. So my nurse called the doctor and he prescribed an antibiotic over the phone.

I'm normally very hesitant to take antibiotics, as they can wreak havoc with my bowels. Going to the bathroom is one of the few things that still stress me out just as much as it did when I first got hurt. It's a subject I don't normally like to discuss, but I find necessary in this case, since most people have no clue just how awful the process is. As crazy as this sounds, I'd gladly give up food if there was a way to get my nutrients and never have to go to the bathroom again. Unfortunately, I'm out of luck. Instead, I have to live with tubes coming out of places they were never meant to; along with having strangers (nurses) manually force my body to go, every other day. The catheter required surgery to “install,” for lack of a better word and the sight of it disturbs me. It is also responsible for one of the many scars I’ve accumulated since my accident. Not to mention, having a catheter makes me prone to having urinary tract infections, that at times could become lethal. All that just so I can live a somewhat normal life, without having to worry about having accidents (like a small child). I doubt it's something I'll ever be comfortable with and I'm always on edge worrying about it. Given the everyday trauma factor of needing a bowel regime, I certainly don't want to mess with system and make it even worst. The down side to holding off on antibiotics is that I end up having secondary symptoms that last long periods of time. Slight discomfort is still better than the risk of having an accident. Pick your poison.

I hate having to choose between two undesirable options. Incontinence is embarrassing and upsets me every time it happens. No matter how many times my nurses or family try to brush it off like it’s no big deal, whether it bothers them or not, matters little to me. I could care less that “it’s a natural body function that everyone does” or that “everyone knows I can’t control it.” That’s the problem! I can’t control it. It’s very easy for other people to expect me not to get upset, because they don’t know what it’s like. The average person doesn’t have to worry about soiling themselves every time they go out or have company over. Although it doesn’t happen often, it makes me anxious and creates extra stress, which in turn, makes me not want to go out at times. I think it’s especially bothersome to me (in comparison to other people I know), because I had a lot of “issues” before my accident as well. I’ve been uptight about going to the bathroom my whole life. I’m sure it’s difficult for men to understand, but we women have so many more obstacles to deal with than they do. I could barely bring myself to pee in a public restroom, let alone anything else. Even then, I’d have to strategically put down toilet paper on the seat and then do a balancing act to flush with my feet. On long trips I carried a “survival kit” of travel toilet paper, mini cans of Lysol, hand sanitizer and baby wipes. Some would say I was a bit neurotic. However, given my past behaviors, it’s easy to see why I have such hard time dealing with my current situation. It’s unbearable needing help with such private things.

Since I already had fluid in my lungs, I felt I had no choice but to take an antibiotic, even though I knew I’d be risking bowel issues. The only way to get the fluid out, besides coughing it up, would be to have it suctioned out. I had to get suctioned many, many times when I was newly injured and it was always a horrible, painful process. My memories of the hospital are all very disturbing and the thought of having to go to the hospital terrifies me. The horror of ending up back in the hospital greatly outweighed the fear of incontinence. The hospital is potentially just as dangerous as it is helpful. I’m always afraid I could catch something worst than I came in with. The hospital is also extra scary when you’re paralyzed. In my experience, the staff is never really prepared to deal with someone that is fully paralyzed. I need a special call button that I can tap with my head; without it, I have no way to call for help. I’ve actually been told “to scream” if I need help. Then, there’s the fact that if I’m hungry, thirsty, bored or uncomfortable I have no way to help myself. Being in the hospital is always uncomfortable and extremely lonely. The nurses and doctors always have other patients, so it’s not like they have a lot of time to check on me or help me with little things, like taking a sip of something or changing the TV channel. The worst part is the flood of horrible memories that come back when I enter a hospital; sleepless, lonely nights, fever induced hallucinations, the fear of dying and the powerlessness of being hooked up to machines. The thought of having to relive a moment of those memories and the fear of getting worst made it an easy decision to take an antibiotic.

Thanks to my bad luck, the antibiotic that the doctor prescribed made me feel worst than I did with only the cold. The first day I assumed all the terrible side effects were flu symptoms. I didn’t figure out it was the medicine until the second day. The doctor gave me Clarithromicin for the congestion as well as Musinex. Both pills are meant to last 12 hours. Shortly after taking them I felt like I had swallowed a basket ball. The pressure in my stomach was awful! I could have handled the pain, if it weren’t for the nausea that came with it. I haven’t thrown up since my accident. Thank God. I was in so much pain and the nausea was so horrible that I was willing to try. It’s scary to think about having to vomit because if I’m laying down flat there’s the potential of aspirating. The thought of dying that way isn’t very pleasant. Although no one enjoys throwing up, it’s so much more stressful for me now than when I could just get up and run to the toilet. Even after I had everything ready and I was ready to try, I had no success whatsoever. I’m sure anyone would agree that nausea is enough to make anyone miserable. I tried dealing with it the best I could. I had my sister put me on my side in a fetal position the best she could, (something about curling up into a ball has always helped me with nausea) in hopes of making it more tolerable. Unfortunately, lying on my side is extremely painful to my shoulders after a short amount of time, due to the fact that my muscles or so weak. I was physically and emotionally drained by the first night. I hadn’t been sleeping well because I had to sleep partially sitting up for a couple nights before the medicine and being nauseous on top of sleep deprived was enough to put me over the edge.

I normally do a good job of appearing like I’m ok, but the combination of lack of sleep & the nausea was too much. I lost it. It’s been a very long time since I’ve felt that depressed and/or desperate. It’s difficult enough to deal with the day in and day out issues that come along with paralysis and feeling sick and in pain made everything seem a million times worst. All I could do was cry and pray. You’d think after a certain point it would all seem easier or that you’d adjust over time, but I felt as if I’d been warped back to those first few months after my accident. All the fear, pain and anxiety came rushing back and overwhelmed me. So many questions come to mind and it’s so frustrating to never have answers. It’s times like these, when I’m most vulnerable and all the doubts and regrets I have feel like they’re enough to crush me. The same questions repeat themselves over and over again and four years post accident I’m no closer to figuring them out; “Why did this happen to me?”, “Why did I dive when it’s so out of character for me?”, “Am I being punished?”, “Why do I have to pay such a high price for one mistake, while people do stupid things every day and walk away just fine?”, “Why are there rapists, murderers and pedophiles out there enjoying a healthy life, while I’m confined to a chair?” The list goes on and on. I’m guessing most people in my situation go through a similar emotional rollercoaster ride and I often wonder how they cope with everything.

I often wish I had a stronger faith in God. I feel like I’d be more at peace with things. I’ve never been a strong believer in any specific religion, despite being brought up Roman Catholic. My accident awoke the desire to believe in something. I can remember being under the water, positive I was about to die and feeling so scared about what would happen next. Up until that point, my belief in an afterlife or greater being was non-existent. I believed as a kid, but became cynical over time. My mom’s two divorces and my sister’s death, among other things, created a lot of doubt and slowly ate away what I’d been taught to believe.

Shortly after my first brush with death I had another experience that shook me to the core. What I thought had been a nightmare, I now know were hallucinations, brought on by high fevers. In ICU and in rehab I had fevers over 104, so the near drowning was only one of several times I almost died. The things I experienced during the hallucinations were terrifying. They weren’t scary in the classic sense, like vampires or zombies; they were scary because they felt as if they’d never end. I sensed I was close to death and at times I was convinced I was already dead. I’d hear the voices around me and I’m guessing I was drifting in and out of consciousness, because I’d see the nurses, doctors and aides and things around me. I was aware of being brought to different tests; MRIs, X-rays and surgery, but I had no sense of time. It felt endless. I felt as though I must be in hell, because of the pain and fear and what seemed like a never ending repetition of the same things, over and over. The overwhelming sense of eternity was horrific. I tried calling out to every God or deity I could think of. I panicked each time there was no response and I can remember thinking, “What if we had it all wrong? What if we humans didn’t know God’s name? What if my non-belief meant God would never hear me?” I tried everything I could think of. In the end, I just cried and begged that it was all a terrible dream and that I’d wake up and it would still be June 4th, 2005 and everything would be good again. Part of me is still hoping to wake up. The other part of me will never be the same after that experience.

It was an awakening, in a sense. Although I’m still not sold on any one faith, I’m trying hard to believe in something. I feel like if I had faith I could relax in knowing all my suffering has a purpose and that there’s some great plan I just don’t know about. I’m hoping to find some sort of meaning that will give me enough strength to keep moving forward. I’m also hoping that there is something more after all this and that someday all the questions that plague me will be answered. I especially don’t ever want to feel that horrible, empty feeling of eternity.

Now that I’m feeling better, things don’t seem so desperate and overwhelming, but I’m a bit shaken up by it all. Thankfully, I figured out it was the antibiotic that was causing the pain and nausea. After three doses of the medicine and two days of hell, I’m feeling much better. The hard part is waiting for the memories to fade. It’s been awhile since I’d been in such a dark frame of mind and the memories that I thought were dull sprang back to life. My life always seems like the saying, “One step forward. Two steps back.” These past couple of weeks I’ve spent trying to regain some of the emotional lost ground, so to speak.