Foolish Girl

Innocent dreams, of a foolish girl
Blinded by a false sense of security
No control, no planning could ever make it be

One mistake, shattered lives
Body broken, beyond repair
Life forever changed, thrown into despair

Dreams disintegrate before my eyes
All I can do is lay and cry
Losing everything I've loved; what was once mine is gone

Can't repair the damage done
No matter how hard I try, how loud I scream
Life is harsh, cruel, and mean

I'm left inside a broken shell
Forced to live within my personal hell
Wishing I would wake from this nightmarish spell

My life is not a dream
Every day I'm faced with harsh realities
All I want to do is run

Devoid of joy, of hope, of fun
Surrounded by everything I want, so out of reach
Imprisoned in this lonely keep

Deprived of touch, of warmth and affection
Living has become it's own infliction
Every day, harder than the day before

I can't take this pain anymore
I long for everlasting sleep
I just want to be at peace






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So Much For My "Good" Day

This morning I had to shlep up to Newark (an hour drive- and very bad neighborhood), with my mom, to go get my psychiatric evaluation done. Luckily, we didn't hit any rush hour traffic, or get lost on the way. We even got a great parking space, and the facility was very wheel chair accessible. Despite hating getting up early, and the long drive, I'm grateful to Jeanne (the palliative care consultant I've been talking with, for several months now) for referring me to Dr. Shihabuddin. She is not only already affiliated with the VNA, but she also accepts Medicare and has experience working with hospice patients.

Our meeting went very well. She was very objective, and made me feel justified, and validated my reasons, for feeling the way I do. She said she would certainly declare me "mentally competent," which is crucial. That ensures my advanced directive, and DNR will be upheld, and respected, without contention. She also said she did not feel I was clinically depressed. She agreed with me, that my issues are issues of conviction, that they are directly related to my physical condition, and my personal standards for quality of living. It felt so good to hear those words. I just wanted to hug her! Thank you, God, someone who can see my situation, with unbiased eyes, and give me a logical, rational validation. I'm not crazy, nor depressed.

That said, she fully acknowledged the difficulties of my situation. She understands my exhaustion, and frustration, but also my deep care, concern, and worry for those closest to me; my mom especially. She and I discussed the medical implications, of refusing various levels of treatment, and she gave me several medical recommendations, in terms of my medication, and hospice care (if/when I need it). She also took the time, to include mom in the dialog, and explained her diagnostic evaluation to mom, stating that my issues are a matter principle, and influenced by physical suffering, not depression. She acknowledged how hard this all must be for mom, and explained that it was important I have this evaluation done, because no matter how badly I'm suffering, there will always be the concern, on the part of my doctors, that my family might try to fight my wishes, or sue after my demise. Mom said although it makes her terribly sad, to think about losing me, she would respect my choices. I already knew that, but I felt relieved after our meeting.

Emotionally, it was a rough morning, but productive, and necessary. I am at peace with my decision, to no longer wish to be hospitalized, or take antibiotics. I'm tired of fighting. I feel like if I get sick, my body will either fight it, or it won't. If I'm "meant" to live, I will, as long as I possibly can. Like I explained to my mom, and Dr. Shihabuddin, ideally I will get sick, and that will be out of my control. Whether to treat it, or not, is a mute point, for me. I rather not have to resort to refusing food/water, to hasten my own death, but if I get sick, I'm hopping on the train out of here. I'm satisfied with what I've accomplished, given my situation, and I'm tired of being sick. I feel like I've had one foot in the grave, for six years now. I've been cheating death, through medicine, and unnatural, painful treatments, for the sake of my loved ones, and at a terrible emotional and physical price. Dr. Shihabuddin recognized the fact (I'm grateful) that living for the sake of others, sacrificing my own happiness, and against my will, can not be sustained forever. When the time comes, that I can't bear this life another day, I'm ready to go.

After leaving Newark, I decided I wanted to go clothes shopping. I had thought about buying a few new things for the summer, the other night, but decided against it. Shopping for clothes online is tough, cause women's clothing sizes are so inconsistent. I have clothes in my wardrobe ranging from extra small, to large. Many times I end up having to send things back, and forth through the mail. I figured, since it was still early in the day, and I was feeling relatively comfortable, we might as well swing by "Mandee's" on the way home.

The store is a favorite of mine, and close by my old apartment. As usual, it was bittersweet, being in my old stomping grounds. I always feel a twinge of pain, rolling into a place, I once walked in. Before my accident, I was making good money, with minimal bills. I was definitely a bit of a shopaholic (no debt though), and clothes have always been a weakness. I used to hit Mandee's once every couple of months. I'd spend hours, trying on STACKS of outfits. I can remember walking back to the dressing rooms, my arms so full of clothes, I could barely cary it all. I loved dressing up, and buying new clothes.

My wardrobe is still pretty much busting at the seams (no pun intended), despite giving away bags, and bags full of my "pre-accident" clothes, that I can no longer wear (short skirts, shorts, bathing suits, short dresses, etc), or have no occasion to (business suits, cocktail dresses, clubbing clothes, etc). I've given away countless pairs of jeans, high heel shoes, skirts, you name it. Most of my wardrobe now, consists of easy to wear (and put on me) casual stuff, like baby doll tee shirts, and sweats, or stretch pants. I seldom go out, and have few occasions to dress up anymore. I pretty much dress the way I used to dress, to go the gym, with the rare exception to my trips outside. Even so, my draws are still over flowing, and my walk-in closet is packed.

Today was like I said, bittersweet, but also fun. No matter how awkward I might feel, being pushed around, not being able to easily access the whole store (clothing stores are always too crowded with racks, and hard to manuever in a wheelchair), or not being able to try clothes on, there is still that piece of me that enjoys it. We probably spent an hour, looking through racks of clothes, and I ended up with two new skirts, a pair of capris, six new shirts, and two new pairs of sandals. I'm officially ready for the summer; if I actually push myself to go out.

After shopping, mom and I stopped at Wendy's for lunch. I love fast food (although my stomach & hips might not agree), so it's always a welcomed treat. I try to choose small portions. It was yummy. All in all, it was a shaping up to have been a rare "good day." I don't get many of those anymore.

I should've known better, not to jinx myself. My good mood was shattered, a few hours ago, when my sister decided to open up today's mail. We had had a routine maintenance inspection, of our apartment, yesterday. Today we got a letter, citing us for a pet violation. Apparently, the complex (we live in a "luxury" apartment complex) has a "two pet" maximum, that we never realized. As it is, I have to pay $50 rent, per pet, per month. That's on top of the non-refundable $350 I had to initially shell out, for each of them.

When my ex-roommate Steve decided to move, and my backup roommate bailed out last minute, three years ago, my little sister came to my rescue, and moved in with me. She had already had a dog, Precious, from before my accident. I was more than happy, to have her join us. Shortly after they moved in, I adopted my cat Tommy. I honestly never realized there was any limit, especially given the fact that I am paying rent for them. I mean between the non-refundable fees, and monthly rent, I have more than covered for any damages they might create. The thing is, they're both well cared for, and neither of them is destructive.

When we got our second dog, Naama (mini-pin) I admittedly, didn't report her. Frankly speaking, because I'm on a fixed income, and was hoping not to have to pay another $50 per month. It has finally caught up with me, thanks to this recent inspection. I would've never adopted her, if I knew about the rule. However, now I'm totally attached to her. She's the closet thing I have to a kid. She's my baby, and I love her.

The complex sent us two conflicting letters, that have left me perplexed, and totally bummed out. One letters says, congratulations on your new dog, please register her on your lease, and that they will begin charging me, the $50 pet fee, on my upcoming statements. The other letter says, we're in violation, and must get rid of one of my pets. Naturally, I'm heartbroken.

I contacted my lawyer, to see if there were some way I could fight it, but he says they have the right to enforce it, if it's in my lease. So, I decided to resort to old fashioned begging. I wrote them a letter, admitting my error, and said I was sorry. I also explained the fact that I am quadriplegic, and practically bed bound. I told them the truth, that my pets are one of the few things that bring me joy, and comfort. I said that my animals were not destructive, and that I'd be more than willing to pay the extra fee. I pointed out the fact, that they have therapeutic value for me, and that I could ask my doctor to write something, to that effect. It is the absolute truth, that they improve my quality of life. I'm hoping and praying that whoever reads my letter, will be compassionate, and willing to make the exception.

So much for my "good" day. Now I'm going to be anxiously stressing out, until I receive their answer. If we do have to put one of the animals up for adoption, we've decided on Tommy. It makes me so sad, to think about losing him. He's such a good, unique, smart, funny cat. I really love him.





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Paralyzed Without Joy

An online friend of mine Laurie, recently asked me if I'd read any blog postings, by a woman named Heather, who writes a blog called "Paralyzed With Joy!" Heather had left a comment, on one of my previous posts. I saw the comment that she sent to me, and have to be honest, in that I wrote her off as a religious fanatic, and never visited her blog (until the other day, when Laurie brought it up). I'm ashamed to admit that, because it sounds presumptions and rude of me, and that's not usually how I am. It's wrong of me to judge her for saying that she's "joyful," just like I feel it's wrong for people to judge me, and expect me to be happy. Her comment just rubbed me the wrong way, because I disagree with the notion that "God did this to me." I take full responsibility for my mistake. Perhaps, it's because she was injured, through someone else, slamming into her car, breaking her neck. She wasn't at fault, and I'm guessing finds comfort, in the line of thinking that it all happened as part of "God's plan." I stupidly dove into a shallow pool. My foolish mistake cost me my health, and the life I loved. Although, I didn't intentionally dive, to harm myself, and there were many variables in play, it's my actions that ultimately caused my injury. God didn't push me into the pool, nor do I believe (if such a being exists) he/she/it/they planned this life for me. I don't believe in destiny, or predetermined futures.

I know she didn't intend to offend me, no one ever does, when dishing out religious counseling, or offering up scripture. It's just hard, for me, as a skeptic, and often cynic, to accept. While I am grateful for any feedback I get, it is hard for me to accept, when it's coming from a religious perspective. She's not the first to offer up words of "divine wisdom," nor will she be the last. Though appreciated, I take every word of advice with a grain of salt, because no one but me, has to live in my shoes, and knows my suffering, better than me. As far as religion goes, no one can offer up proof, that their beliefs are truth, you either believe it, or you don't. Personally, I have a hard time believing in a God that would WANT THIS life for me.

Laurie and I met through Facebook. She has MS, and got to know me, by reading my blogs. One day, she decided to write to via Facebook, and shared some of her story with me. Although there is a generation gap between us, we share a lot of interests in common. She was also a teacher. We've been writing emails back and forth for some time now, discussing all sorts of things, like languages, movies, pets, religion, family, friends, and our personal struggles, dealing with our disabilities and adapting to life with paralysis. Right now Laurie still has much more functional movement than me, but is continuingly having to adapt to her degenerative disease. I often wonder if it would've made it any easier on me, if I'd gradually lost my abilities, versus losing everything over night. Either way, paralysis sucks, and we both struggle to find answers for "Why us?" and searching for reasons to keep moving forward, despite it all. It helps having a kindred spirit, to talk to, even if you're each having a rough day. Although it makes me sad to know other people are effected by paralysis, it helps having others to turn to, that know what it's like to need help, and having lost independence. It especially helps having someone to talk to that is like minded, and shares a similar perspective, and attitude, towards THIS lifestyle.

Laurie is like me, in that she is disatified with compromise, and hates the ever growing number of limitations that paralysis has forced upon her. We are both very unhappy with the indignities of paralysis, and would most certainly never describe living with such lack of freedom, and forced dependence as "joyful." The mere name of Heather's blog irritates me. How anyone could possibly be "paralyzed with joy" is beyond me. I can't help but think she's insane, for saying things like "On a scale of one to ten (ten being the most satisfied with life) she is a ten" or six years post spinal cord injury, she's "the happiest she's ever been." On one hand, I want to slap myself, for being so critical, and judgmental. Clearly, I don't know anything about this woman, besides the fact that she is paralyzed, and apparently happy. Who am I to say she should, or shouldn't be happy, just because I have such a hard time coping with the changes in my own life, and hate every aspect of being paralyzed? On the other hand, a part of me is even jealous, that someone in a similar condition to me, could be so happy, when I'm so miserable. I know the secret to her happiness, and understand how it gives her such a rosy perspective on life. The source of her happiness, is something I wish I had, but can't force upon myself, and that is blind faith. I've seen it many, times; people like her, and Joni Erickson Tada, that despite their paralysis, they're able to be happy, and draw strength from God (specifically Jesus, in both of these cases).

I struggle with having faith in any God, let alone any one specific God. Although my accident has stirred up fears about God, and an afterlife, it hasn't helped me make any breakthroughs, or have any great epiphanies. On the contrary, it has put more, and more doubt, in my mind about God, and his/her/it/their supposed interest and/or love for me. As for being joyfully paralyzed, I see that as being a product of her convictions to God, not how extraordinary her life is. Let's face it, no matter how you dice it, paralysis sucks. It is a struggle, living with paralysis every day. I don't believe for a minute that any sane individual would choose to be paralyzed, over being healthy. Paralysis might have opened her eyes, and fostered in her a new appreciation for life, or feelings of being given a "second chance", after coming so close to death, but I guarantee she'd prefer being able to care for herself, over the life she has now. It is her belief in God, that gives her the ability to see purpose and meaning, in her suffering, and that gives her joy, despite being paralyzed.

I wish I could say the same for myself, but I can't. My belief in God is shaky, at best. I tend to lean towards Eastern philosophy, and feel turned off by Christianity. Some of my resistance to Christianity is my own, logical analytical nature, and my finding it hard to believe in a God, that would be as petty, jealous, or harsh, as the God of the Old Testament, and my historical knowledge of how Christianity formed, and how man has corrupted, and influenced all organized religions, in general. Growing up Catholic, the church, and it's rituals always seemed suffocating to me. The mere notion that Jesus is the ONLY path to "salvation" has always pushed me away. I just can't believe in a God that would eternally damn good people, just because they worshiped him/her/it/they by a different name. Logically, I don't even understand the huge rift, between Muslims, Christians, and Jews, given the fact that all worship the same God, and believe in the same prophets. Despite their common roots, and belief systems, people use "God's" name to promote their own selfish, man made agendas, and divide humanity. The more I have learned over time, the less I have come to believe, except for one unifying moral, to love oneself and my fellow man. It's the one idea that makes sense, and stands up to the test of time, throughout all religions, and faiths.

I think of having a strong faith in God, can be as equally powerful as ignorance. Ignorance is bliss. Blind faith is like that, in many ways. No matter how outlandish, or unscientific something is, people with faith believe. Faith is blind, and unquestioning. It also lets people be "blind" to the realities of life, and helps paint a silver lining on everything. At times, that blind aspect of faith can be bad, because it can be used as weapon, to make people do, and say things that hurt others, in the name of "God", or accept situations, no matter how horrible they are. I don't think God (if he/she/it/they exists) would've bothered giving us logic, and reason, if he/she/it/they, didn't want us to sometimes use those abilities to evaluate situations for what they are, and think critically, for ourselves. Likewise, if God gave us freewill, then I believe he/she/it/they is solely an observer, of our lives, and doesn't often intervene (if not, at all). I don't think God "gives" us a bad, or good lot in life. I think we get what we make of it. However, that also means I don't buy into the BS that, "God only gives us what we can handle" and "everything happens for a reason." I think sometimes bad things just happen, and they most certainly are too much for any one person to handle. I many respects, I hate myself, for making the stupid mistake, that paralyzed me. On the other hand, I love myself, enough to feel like living with paralysis, is cruel, and unusual punishment. In my case, my punishment VASTLY outweighs, my mistakes, and I don't think it's wrong for me to be upset about, or not want to have to live the way paralysis has forced me to. If God is watching, he/she/it/they knows how hard my life is, and how much I'm suffering, and I don't think it's fair, or just, for anyone else to judge, either way.

It pisses me off, when people down play their paralysis, because I feel like it's crucial for the average person to understand how hard it is, to live this way. I mean, if life's so grand, why bother finding a cure? I believe the key to gaining support for research, is by touching people's minds and hearts, on a personal level, by putting faces, names, and stories, to the word "paralysis." I believe that every person I touch, by sharing my story, and sharing my pain, is one more person that's aware of possibility that his/her life could change; one more person who cares about finding a cure; and one more person that can better appreciate the health, and abilities he/she still has. Yes, maybe if I had a stronger faith in God, this would all be a bit easier to handle, but that wouldn't diminish the fact that I'm dependent on others, sick and in pain. I don't want people to forget, or overlook the realities of living with paralysis. It's not ok, having to have a bowel program, a catheter, needing to be fed, bathed, and clothed. God, or no God, those are REAL, tangible things, that I'm FORCED to face, every day. Paralysis doesn't give me an option, and I don't get a break. I have to deal with all of that stuff, plus all that I lost, plus the sickness, every second, of every day. Does that mean I never have a joyful moment, or have anything I'm grateful for, of course not. However, reality is that living with paralysis sucks, and I'd give ANYTHING (besides my soul- ironic, I know) to just be healthy again.

I'm skeptical of anyone who says they're "happy" with living with paralysis. Laurie is Jewish, and like I said, I was raised Catholic. Neither of us is very "religious", nor do we blame God for our paralysis. It would be very easy, to put the blame on God, since after all, if such a being exists, and created the universe, space, and time, he/she/it/they could certainly fix something as simple some faulty nerve connections. We both take a more logical, fact based approach to life, and chalk our situations up to bad luck, not some divine plan. Rationally, it's hard to accept that anyone would be thankful, to be paralyzed. It seems against human nature, to WANT, or prefer to be dependent on others, and have a constant invasion of privacy, and personal space. The fact of the matter is, paralysis strips people of freedom, and forces a tremendous amount of change into one's life.

Most people would not want to live this way, by choice. It's not to say, that I don't believe people can find things to make them happy, and give them purpose, despite paralysis. I believe each individual's case is unique, and factors like religious beliefs, level of education, career, financial status, personality, support network, and level of independence before paralysis, play a HUGE role, in how "happy" a person can be, living with paralysis. You can't miss, what you never had, and some people lose a tremendous amount more than others. Suffering should be evaluated on a case, by case basis. Just because one person can find "joy" living with paralysis, that doesn't mean everyone can. I think each individual has the capability, and right, to asses their own level of suffering, versus amount of enjoyment. I don't think everyone can find balance, or the extreme opposite, happiness.

Naturally, Heather is entitled to her line of thinking, and in many respects is lucky, to be able view life, in the manner she does. I think that everyone has their own desires, standards, and threshold for what they can tolerate, and that living with paralysis should not be forced upon people, without escape, in the manner that it is. Living this way, for me, and others like me (Laurie for example) find living with paralysis closer to Hell, than to Heaven. I don't think that makes us weak, or wrong, just as it doesn't necessarily mean extraordinary people like Heather, Christopher Reeve, Joni Erickson Tada, and Dr. Dan Gottlieb, as being "better," or stronger, it just means we're all unique. Life is not like a cookie cutting machine, where one size fits all can apply. I think each person has the right to determine what he/she considers to be quality.

I realize that not everyone agrees with that philosophy, but personally, I feel like in certain situations it is justified, not wanting to live (aka- prolong suffering). For example, I don't want to ever live dependent on a vent. I have been on a vent before, and would prefer death, over ever having to go on one again. I realize that there are people out there that live dependent on vents, that feel happy, and fulfilled. Does that make them superior people? I think it just makes them different. I think everyone should have (and do, to a certain extent- through advanced directives and living wills) the right to determine what they consider to be quality. After all, it's very easy to hand out advice, when you're not the one having to live through it. Some people would disagree, and say that people should go to any lengths possible to extend life, like people hooked up to machines, despite being in a vegetative state (such as the Teri Shiavo case) . I realize this is a hot button issue, that people feel strongly about. I'm merely stating my own personal opinion, given my life experiences.

I personally feel as though I'm at a point of living with paralysis (C4/C5 complete injury), where I feel as though living, is only prolonging my own suffering. I battle myself every day, to keep pushing forward. The thing is, I feel as though my life is being sustained by unnatural means. If I truly left my life "in God's hands", I'd be dead a long time ago, because I have no ability to fend for myself. I'm kept alive by people, medication, and awful treatments (suprapubic catheter & bowel regime). I'm only alive because our society has the means necessary to provide me with all the services and things I need. However, there comes a point (right now, in my case) where one must evaulate if the ends justifies the means. I definitely can not say that I'm "paralyzed with joy." I feel more like a prisoner, than anything, and want nothing more than my healthy body back. I hate being dependent on others, and being chronically sick. I'm glad for people like Heather, in that I don't take pleasure in hearing about other's suffering. It's nice for her, that she is happy, but I can't imagine ever finding that level of enjoyment, or contentment, with having to live with so much pain, and compromise.

"Paralyzed With Joy!" - http://paralyzedwithjoy.blogspot.com/



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Disappointing Myself & Facing Harsh Realities

My little sister recently had a baby. My niece being born is of course a big deal to me, and to our family at large. We were blessed that she is healthy, despite being born a bit early and it being a difficult pregnancy for my sister. She is the first of her generation on that side of my family, and quite possibly one of my parents' (mom and stepdad's) only grandchild for quite some time (possibly even ever). Ironically, my LITTLE sister is the youngest of my siblings (eight years my minor) and the first of us (on that side of my family tree, which is a bit complicated, thanks to divorce) to get married and start a family. While I'm genuinely thrilled about having a new addition to the family and eternally grateful that she's healthy and that my sister made it through the pregnancy, the last ten months have been a roller coaster ride of emotions for me.


On one hand, I don't even want to discuss my pain, for fear of upsetting my sister. I never want to be a downer, or feel like I'm diminishing other people's joy with my misery. I don't want her to think I'm not happy for her. I am. However, I'm also jealous and extremely disappointed in myself and in my life in general. I've already dealt with my two best friends getting married (one also has a son), and continue to experience the mix of happiness, pain, guilt, jealousy and frustration every time one of my friends gets married or has a baby. At thirty years old, and five and a half years post SCI, I actually thought I had started getting numb. My list of married friends, versus single friends tipped the scale a while back, and friends with kids is nearly there as well. I thought my skin had thickened a bit, as in the past year or so, it hasn't felt like the wind knocking out, gut punch that I used to experience, every time I had to check a friend off the "single without a family" list. It had seemingly toned done to more of a slap across the face. Regardless, I still find myself having a pity party and reexamining all my regrets and "what ifs" every time I see someone else enjoying the kind of life I thought I'd have.The only difference that time has seemed to make is that I had started to bounce back (emotionally) a bit quicker. My baby sister having a baby has been much harder to deal with, in comparison to any of my friends. Her pregnancy and the birth of my niece has stirred up all the crap that's constantly lurking in the back of mind and I hate myself for letting it effect me in the way that it has. The fact that she's my sister makes me that much more repulsed by my own selfish thoughts. I feel like I should be extra happy for my sister, instead of extra sad and hard on myself. I hesitate to express my feelings in this matter, and wonder if it's best to not say a peep. 

The truth is, I'm reeling with jealousy, guilt over the jealousy and feelings of inadequacy and like a failure as a sister and as a daughter as well. Not being able to give my parents the joy of a grandchild is tough. I always thought I’d be the first of my siblings to share that experience with my parents. It’s painful knowing that I most likely will never give my parents grandchildren, or be able to give my siblings nieces or nephews. I see the joy in my parent's eyes and hear the excitement and love my parents have for my niece, and I wish I could give them that same happiness, with children of my own.  It's also extremely hard not being able to be the type of big sister, or daughter like I was before, or like I want to be. With my youngest sister, I was always the giver, the helper, the one she could turn to advice for and tried to set an example and urge her to learn from my mistakes. Despite our big gap in age, I was very close with her. I enjoyed taking both of my sisters out, buying them things, and helping them. I thought I'd have my own child by now & always imagined myself being able to give advice & be there for my sisters during their own pregnancies. I thought I'd be present to see my nieces and nephews being born and be able to help assist in raising them. Not to mention, I thought I'd have experience and knowledge to share with them, from having raised my own children. The fact that none of that happened makes me feel like a huge failure. I know my family probably doesn't see me that way and that I'm mainly a disappointment to myself. There's also many times I'd like to be more involved, but I just can't handle it, or realize that there's nothing I can do to help.


One of my biggest desires has always been to have a family of my own. When I was still on my feet the thought of getting married and having children always seemed like a certainty to me. I had been in several long term relationships and had no doubt in my mind that I would meet "Mr. Right." Finishing college and establishing my career were important prerequisites to settling down, and once I had accomplished both of those things I thought it would just be a matter of time.


I had ended a five and a half year relationship with someone the year before my accident. All throughout college I had fooled myself into believing that he would "pop the question" once I was done with school. Early on in our relationship, we had many ups and downs, but ultimately I never felt like I could be myself with him and his lack of commitment only fueled my doubt in his trust in me and forced a wedge between us. It's not that I wanted to be a party girl, or anything like that, I just wanted the freedom and trust from him to go out with friends and be able to associate with both men and women. His own insecurities and my poor judgment for putting up with it for so long, took a huge toll on my self esteem and in the end I still have regrets and feel as though I wasted five years of both of our lives, for not realizing that we were never suited for one another in the first place. I realize now that it was never him that I wanted; it was the idea of the husband, kids and house with the picket fence that he had initially dangled in front of me, that made me latch on for so long. I tried so hard to be someone I wasn't, to be with someone who wasn't right for me, because of the bigger dream, the bigger picture, and it made me lose sight of a lot of the smaller, seemingly obvious (to everyone else) problems, that ultimately made me leave.


It's scary how easy it is to get stuck in a rut. Change can be scary, and it sometimes forces us to settle with what we have, out of fear of possibly never finding anything better. My own poor self esteem and non belief in myself kept me trapped, fighting an uphill battle of trying to make a bad match work. The longer time went on, the harder it became to want to let go. I found myself stuck in a vicious cycle of not wanting to throw away all the time and energy I'd invested into the relationship, while at the same time regretting I'd ever put in that much time in the first place. Even though there were a million little red flags along the way, I kept holding on to the delusion that getting engaged, or getting married, would somehow make all of our problems go away. In retrospect, I know there were aspects of myself that I held back on, because I felt I needed the proof of a serious commitment, to let those barriers down. On the other hand, there's no way in knowing if my openness would have changed much, because in the end, I could never really be free with such a rigid person as my partner. Looking back, it seems insane to think that making the ultimate commitment of marriage to "Mr. Wrong" (out of fairness- it's not to say that he couldn't be right for someone else, just not for me) would have ever made me truly happy. Getting married, just for the sake of being married is ridiculous.


I'm thankful that I finally saw the light, and had the courage to leave. I had a little bit of a rough time letting go at first, but felt truly liberated once I started enjoying the freedom of being single. I had just turned twenty-four at the time, and within those first few months after my breakup I felt as though I was really discovering myself for the first time, and rediscovering life in general. I had my career to keep me grounded, which kept me from going completely wild (at first I felt like all I wanted to do was go out and make up for feeling suffocated for so long). Don't get me wrong, I did go out on the weekends, and reconnected with old friends. I did stretch myself thin, trying to balance a busy social life and a busy career, but I always had work on my mind.
Despite some criticism that I got from my parents at the time, I can confidently say that I felt good about my life and have always tried juggling a lot on my plate. While they noticed a change in me going out, and dating, they failed to realize that I was often the first teacher to arrive at work and the last to leave. That year I juggled teaching, yearbook club, attending school functions for yearbook, painting a mural, put on three student art exhibits, took two graduate painting courses, moved out and into my own apartment, began going to the gym and had an active social life. I was busy, to say the least, but I felt happier and more alive than I had ever felt in my entire life.


It was during the last six months on my feet that I met "Mr. Right" (or so it seemed). We had a whirlwind affair, and had just started the process of moving into together when I was injured. It had been a long distance relationship, that had us both traveling back and forth between New Jersey and Pennsylvania (about a two hour drive). It's hard to even describe our relationship, other than saying that when I was with him I felt like I was completely myself. It was first time I felt like everything clicked. Nothing is perfect, but I felt as though we complimented one another on a level that I'd never experienced before. Superficial things like, degrees, money, or career didn't matter with him. I can remember thinking to myself that those things only mattered to me before, because they were fillers for things the other people lacked. We were at different places in terms of career, money and education, but those things could all easily be changed, with opportunity and time (Lord knows, plenty of people with good careers, and money have lost it all, as easily as others have gained it).  "Mr. Right" made me happy, just being with him, and I knew that he had the potential and power to achieve all of the surface stuff, if he wanted it. Status isn't what makes people compatible, it's personality and core character traits (physical attraction helps for sure). During those last six months on my feet, I felt invincible. I really believed I had all my dreams within my reach; that all the pieces my life had fallen together. I had my career and was very happy with my work. I thought I'd found my soul mate and that we were about to start our life together, and in a little more time (maybe a couple of years-once I had tenure), we'd start to build our family.


Unfortunately, my life didn't play out the way I'd imagined it. All the pieces of my life, that I'd built up until June 5, 2005, came crashing down like a house of cards, in a matter of seconds. One stupid mistake to dive into a pool, changed my life forever. Instead of having tenure, being married and having children of my own, I'm thirty, single, unemployed and paralyzed, with little to no hope, of ever fulfilling the dream of having a family of my own (or my career back, for that matter). Some might argue, if "Mr. Right" really was "right" for me, then he would of stayed, despite my accident. That is easier said than done, and most people that  say that have no clue what my day to day  life entails, and how much of  a sacrifice it would've been for him. Honestly, I don't know that I could've stuck it through, if our roles had been reversed. I'm also keenly aware that there is no guarantee that if I had never dove into that pool, that my life would've run as smoothly as I'd envisioned. There are a million variables to consider. However, I feel certain that  if I were still on my feet that by now I'd still be teaching and have started my own family (whom ever that might have ended up being with). 

Admittedly, my lack of a significant other, and/or children is by choice. However, it's the practicality of my situation and the reasoning behind those choices that I'd like people to understand. There are those people out there (able bodied and disabled alike) that would say, "You can still do anything you want, just in a different way." Really?! Let's examine the facts. 

I could certainly have a boyfriend, or a husband. I don't deny that I hold myself back in this area. Everything I choose to do, or not to do, is done by weighing the pros and cons of any given situation. Although people love pointing out that "I can still do everything, just in a different way," the way I'd have to do certain things, or the compromises involved just don't cut it sometimes. There are many aspects of my old life (or life for the average able bodied person) that have become meaningless to me, because the aspects that I most loved about the experience/activity are now gone, and there just is no compromise or way around that, period. I see absolutely no point in going through the motions of something, just to say "I can," when in reality I can't. I refuse to do things, just for the sake of doing things, if the pleasurable aspects of the activity or thing no longer exist. What purpose does that serve? I'm certainly not fooling myself. There are countless things that no longer give me enjoyment, or create more stress than they are worth doing. My career is a good example, because it was the physical parts of teaching art that I loved the most. I miss the feeling of using different materials in my hands, typing, hanging displays, working one on one with the kids, organizing my supplies, preparing my classroom, crinkling, tearing and cutting paper, standing at my classroom door to meet my students and physically being able to help them. Yes, I could still teach art, but so much of what loved most about my career is gone. The remnants just don't compare and don't make all the effort, and coordination needed to get to work on a daily basis even worth doing. I feel the same way about having a significant other, and about having a family, in my current condition.


Let's face it, the key difference dividing friends from significant others is physical intimacy. Although sex is just one component to a healthy relationship, it is necessary and important. I was a very physical person before my accident. I enjoyed all the kinesthetic aspects of life: making art, exercise, dancing, experiencing different tactile textures in my environment and through physical intimacy. I've always enjoyed the feeling, and process of doing things and much as the outcome, or product of things. I didn't just take a shower to get clean. I enjoyed the sensation of the hot water flowing down my body, and savored the aroma and sensations and textures of different soaps and creams. Trying on clothes, was just as fun, if not more, than the thrill of buying new clothes. I enjoyed seeing how the fabric hung on my body, and feeling the texture of it, as it rubbed against my skin. The experience of creating a work of art, (such as feeling a scissor slice through a piece of paper, or a lump of clay squish between my fingers) was just as important as the final result. The thought of having a relationship, without the pleasure of physical intimacy, in my mind, is no more than a friendship. Just the mere fact of being with someone, and having the desire to be intimate and not be able to feel the experience of doing so, is more painful and frustrating than it's worth. When people (doctors, nurses and people in the paralysis community) say that I can still have sex, it just pisses me off. It's a joke. Reality is, someone could have sex with me, but I cannot have sex. Why some people cannot, or choose not to admit this reality is beyond me.


Personally, the thought of being physically intimate with anyone in my current state, is not only
stressful, it is disturbing. Yes, I could allow someone to have sex with me, but would not be able to do anything in terms of interaction, besides kissing. I cannot feel 85% of my body (including all of my lady parts), so therefore would be left lying there, with no real interaction, or enjoyment. Can someone please explain to me what point there would be to that exercise, other than perhaps satisfying a spouse (not likely), or for procreation? If anything, I think such an experience would leave me feeling more sexually frustrated than I was (or am) before the encounter took place. It's a touchy subject, that I find people like to sugar coat, or avoid all together. Unfortunately I don’t have the luxury of not considering it. We as humans are physical beings. Sex and physical affection are important aspects of life. Physical affection is good for the psyche, and being completely cut off and devoid of it, is not easy. Numerous studies have shown there are long term negative effects of depriving babies of physical affection. Sex aside, as humans, we need to feel the warmth, and touch of other people. It is an essential part of life and our overall development.  Paralysis robs individuals of their sense of touch and is in essence a type of solitary confinement. Even if I had a partner, I'm cut off from physical sensation, there's no way around that. Without the physical aspect (Yes, I know I can still kiss. I'm also not a twelve year old. I require more to truly feel satisfied) of a romantic relationship, it really just boils down to friendship. I have plenty of good, supportive friends. In terms of having a boyfriend, or husband, I just don't see it working for me, based on my limitations, desires and needs.

Even if I could somehow settle with having a basically platonic relationship with a significant other, there are numerous practical, physiological and psychological reasons as to why I choose not to have children in my condition. Can my body physically produce a child? Probably (I've never tried and therefore don't know how fertile I am). A pregnancy would be extremely difficult on my body and risky, given my condition. Given the fact that I can't feel most of my body, it also means that I'd be unable to feel and symptoms or possible problems with the pregnancy. When there is something wrong (a blockage in my catheter, incontinence, injury, or pain) that I can't feel, my body compensates by forcing my blood pressure to rise. This phenomena is called Autonomic Dysreflexia, and is something many people with paralysis live with. On one hand, AD is helpful, in the sense that my body creates symptoms, which alert me that there's something going on that I can't feel. AD presents itself in various ways, such as profuse sweating, chills or pounding headaches. When I feel these symptoms, I know I need to get help and try and find the source of the problem. AD is like a backup warning system. Unfortunately, besides the discomfort, AD also puts me at a higher risk for stroke or death. For instance, if my catheter becomes blocked, my body goes into distress over the pain in my bladder that I can no longer feel, which in turn causes AD to kick in, and my blood pressure begins to rise. If I don't have someone around to determine the cause and alleviate the blockage, my blood pressure will continue to rise and can cause me to have a stroke and/or potentially kill me. I can only imagine the discomfort and number of episodes of AD that would come along with putting my body through a pregnancy. 


There are several other practical concerns that I'd need to consider, that the average woman of my age doesn't most likely have cause for concern. The added weight gain of a pregnancy would make me more susceptible to pressure sores, and make it harder for my caretakers to transfer, wash and dress me. Once I put the weight on, it would be near impossible to lose, given the fact I have little, to no means of exercising. I already watch what I eat, and restrict caloric intake, in order to maintain my weight, and doubt it would be healthy to eat any less than I already do. There's also the fact that I take a dozen pills every day, just to survive. Some of these medications would be benign to a baby, but I'm not so certain about them all. There's aspects of my medical condition, like having a bowel regime and a catheter, that I'm sure would be impacted by a pregnancy and vice versa.

Practical and health issues aside, I don't think I could bear the emotional trauma of being pregnant, or having a child in my condition. My paralysis makes it impossible for me to experience most of the aspects of pregnancy that I've looked forward to and have imagined my whole life. I'd be unable to feel my baby growing inside of me. I'd be unable to feel the touch of my loved ones hands on my belly. I couldn't stand in front of a mirror and admire my belly as is grows, or have fun trying on maternity clothes. I wouldn't be able to feel my water break, or labor pains (not that I looked forward to that part). I wouldn't be able to push, or feel the sensations of giving birth. I wouldn't be able to hold my baby for the first time (or ever), or feel what its like to breastfeed. It would be extremely difficult to not be able to do all of those things that I've anticipated my entire life and have always looked forward to knowing what they feel like first hand. I feel like less of a woman for not being able to go through the process of pregnancy in the usual sense. For me, it's very isolating to not feel like "part of the club." Pregnancy has become one more thing that I can't share in knowing through first hand experience. I have no stories of my own, nothing to add that conversation. It makes feel more detached from my peers, and more alienated by not being able to be a part of the group. Realistically speaking, even if I were to get pregnant, my experience would not fit the norm, and I'd still feel like I'm missing out on most of it. 

Even if in time, I could accept the idea of a platonic marriage and turn a blind eye to all the risks and disappointments that I'd face being pregnant, the thought of having a child and not be able to care for it, is something I know 100% that I could never cope with. As silly as it might sound, I face (just a taste) the helplessness, depression and frustration I would feel having a child every day, thanks to my miniature pincher, Naama. Although she's just a dog, she's the closest thing I have to a dependent, and for as much joy as she gives me, it kills me watching everyone else care for her. It's indescribable how frustrating and sad it can be to have this, tiny, adorable creature look into my eyes, clearly needing help, or wanting something, and all I can do is sit there, powerless to do anything. Then there's the frustration and jealousy that come along with watching everyone else do the things for her, and enjoy her, in ways that I can't. I want to be able to hold her in my arms, pick her up, play with her, feed her, bathe her, dress her (yes, she wears clothes) and take her for walks, but I can't. Even if she sits on my lap, it's as if she's not there. If I drag my limp hand across her fur (using my shoulders), I can't feel her. For the most part, I'm forced to be a spectator of her life. 

I experience similar sadness and frustration on an even larger scale, when I spend time with my nephew and God daughter. There's so much I want to do with them and I can't. I want to be able to scoop them up and give them a bear hug. I want to be able to get messy and do art projects together; things like coloring, sidewalk chalk, finger painting and clay. I want to be able to get down on the floor and build stuff with Legos. I wish I could babysit them, or take them places. Instead, I feel like a talking piece of furniture. I'm just stuck observing them grow and play, and although I can interact with them though words, I feel a huge disconnect to their lives. I know if I were to have a child of my own, all of the feelings I experience now with my pets and the other children that are already in my life would be magnified one hundred fold. I just can't cope with that. So despite my longing for a family of my own, the risks and all missing pieces I'd be unable  to experience, vastly outweigh the positives. I know that there are women out there with high level SCIs, that have given birth, and have their own families. Everyone's situation is unique. I can only comment on my own situation, and know what challenges paralysis present me with from day to day, given my background and my unique coping skills. My reality is, that as long as I'm paralyzed, that I will never be able to fulfill my dreams of having a family of my own. That is a hard pill to swallow.

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.

Regret & Forgiveness

I checked my website email account today and discovered a few new messages. One of the emails was from someone who had watched the episode of Soul Survivors that I did, on Youtube. He asked me if I often re-live (in my thoughts) the day of my accident and how I deal with regret. I thought they were great questions and want to share my response in the form of a blog, since I'm sure there are many other people out there that can relate.

Regret and forgiveness are two things I struggle with every day. I think the worst part about my accident (other than the consequences) is the fact that I did this to myself. I've experienced a lot of horrible things since that day. One of the worst things that happened right after my injury, was the fact that some of my closest friends and family made my situation worst for me, by arguing, accusing, blaming, judging and guilting me and one another. Everyone deals with grief and trauma differently and a lot of things that people in my life at the time, did and said, really shocked me. It is very true that people show their true colors, when you are at your lowest point. Some people soar and go above and beyond your wildest dreams and show you support and love you never expected. Other people shut down, close you out and disappoint you. The surprise comes in when people you've trusted your entire life let you down. They say love is unconditional, but I've learned that unfortunately, that is not always the case.

It has been incredibly hard for me to deal with all the loss and drastic changes that I've experienced. Many of the people that claim to love me, say it is sometimes equally painful (or so they think) for them, to see me suffer. The key difference is, I have no escape. I can't put my paralysis by the wayside when it gets too tough. I don't get to go back to my normal life or choose to remove myself from the situation. My family and friends have the choice to run from the situation, or at the very least, distance themselves, distract themselves or focus on other things. Some people might feel they're not strong enough to handle being in my life. For them, it is easier to dull the pain by turning a blind eye and remove themselves from the situation. At times, it upsets me, because I consider it selfish and cowardly. No matter how sad I am, how hard I try or desperate I might feel, I'm stuck. I either deal with it, or go mad. It's challenging to find strength, when people on the outside are not supportive. You can't help but think, "What's with them? They still have everything, just the same as before. They get to leave here and go on with there life." On the other hand, I suppose it's not fair of me to expect other people to put themselves through discomfort or drama, on my behalf. My family situation is tangled and broken, and added to the difficulty of my situation. My parents divorced when I was a baby and I've bounced back & forth between two families my entire life. The animosity and tension amongst my two families bubbled over after my injury and added a ton of extra stress and pain to my already horrible situation. Despite all the tears, anger and hurtful words, I've been able to forgive everyone, except myself. I guess this stems from the fact that I love my family and friends, but hate myself. It is easy to forgive someone you love, despite how much they hurt you; at least it is for me.

I've never had terriffic self esteem. I've always been hard on myself and much more critical of my own flaws, than the flaws of others. I think the perfectionist in me helped me to achieve a ton of positive things in my life, but it has certainly added anxiety and stress as well. It's very hard for me to be totally satisfied with what I do. I'm not competitive by nature, with other people, but I'm constantly striving to fit the vision inside my head (of myself, goals and aspirations). I've always pushed myself to strive for really high goals and try hard to achieve them. However, I managed to unravel all my hard and shatter my dreams in the matter of seconds. I destroyed everything I worked for with one very stupid mistake. The fact that my mistake seems so obviously idiotic, makes it all the harder to deal with and admit to the fact. Although a lot of people have told me I've made them proud (in how I've dealt with my paralysis), I'm a disappointment to myself.

I don't have any answers for myself, as to why I did what I did. Perhaps, if I had had some sort of plan in mind (like trying to do a shallow dive) and botched it, at least I'd be able to look at it as just being a mistake. However, I have no logical answer and I don't remember any specific intentions. I just dove in, blindly, without thinking. The frustrating part of it all, is that I never dove (as an adult). Swimming was one of the very few physical activities I enjoyed and looked forward to each year. I'd been swimming almost as long as I'd been walking. My family had above ground pools throughout my entire childhood and I was familiar with pool from my accident. I also had regular access (community pool and family) to in-ground pools growing up and as an adult. The last time I can remember ever diving head first into a pool, would've been before the age of eleven. I attended a pool party around that age, which turned me off from diving. Nothing particularly drastic happened at that party, I just recall it being the first time I felt afraid or thought I might hurt myself swimming. I vividly remember climbing the ladder to the high dive board, walking to the edge of the board, preparing to dive and chickening out last minute, to the annoyance of everyone behind me. I can't remember if I was forced to jump in, or if I climbed back down the ladder, but I never attempted a dive again, until the night of my accident.

I normally liked to jump into pools feet first or cannon ball style. The thought of getting accustomed to the water temperature inch, by inch, does not appeal to me. I much rather just take the plunge and be done with it all at once. I know I was feeling lazy the night of the accident and climbing up onto the side of the pool seemed the fastest way into the water. It would be no surprise to me if I would've chosen to jump into the pool, feet first and had broken my leg, stubbed my toes, or banged up my feet. That would make sense. That would sound like me. Diving in, head first, into sixty inches of water makes no sense and doesn't mesh with my character.

For a long time I beat myself up over the fact that I had been drinking that night. Those guilty (guilty of what, I'm not sure) feelings were only exacerbated by the blame and shame that was drilled into me, over and over again, during the first weeks after my accident. At my weakest point, my mistake was thrown back at me, time and time again and the story became exagerated and distorted. I was experiencing fevers 106 degrees and above, hallucinated and heavily drugged. I was living off of machines and was close to death. Despite all that was happening, I had to endure (some) my loved ones telling me how foolish I was and picking at every little flaw I had. I can remember feeling like dirt, here I was, beating myself up more than anyone, fighting to live, and yet certain people felt it necessary to make me feel worst. Aspects of my life were blown out of proportion and lies were made. I was weak, with cloudy thoughts and the desperation of not knowing what my life was going to be like. My loved ones were fighting and all I could do at that point was cry and try to make it seem like it would ok. I really believed that if I tried hard enough, I could heal myself and make up for my dumb mistake. Looking back, it all makes me very angry. I'm angry at myself, for not being stronger to stand my ground and be more in control of the situation, but at the time, my life had just dissolved in front of me and all I could think about was making it all right again.

Naturally, I think I'll always wonder how much the alcohol contributed to my decisions that night. I'll always wonder if those drinks influenced me to dive. I certainly wasn't falling down drunk, nor had I really felt drunk at the time. However from the minute I can remember waking up in the ER, that became the focus point of it all. The alcohol became the scapegoat as to why I dove and the guilt just piled on and on. It's only recently that I've forgiven myself a tiny bit over the fact that I had drank. At the time, I was twenty-four years old. I had bought my own drinks and had no intention of driving home that night. I only had had a few, and was obviously coordinated enough to scale the side of the pool and balance myself on top of the rim. It apparently had seemed shocking to some (obvious by their reactions), that a twenty four year old teacher might like to relax with friends and drink on the weekends. At the time, I let that guilt and shame eat away at me. Fortunately for my sanity, I've since realized that I was not an anomaly. Even now (pushing thirty), tons of my hardworking, educated, professional friends enjoy drinks on the weekends, have parties with friends and enjoy going out. I'm not exactly sure why I was made to feel like an ax murderer, for having a few drinks, but I was. I was balancing a lot of things that year and did stretch myself too thin at times, but that's hardly a crime. I take comfort in the fact that I know I had my life on track (it's easy to judge, when you only see one piece of the puzzle) and had accomplished a lot of things in my life that I'm still proud of. I no longer feel wrong for drinking, however much or little. I could sit here all day and list specific regrets for that day (changing our plans, going to the party, planning to swim, drinking, diving), but it's only because it's in hindsight and because of the overall consequence of the chain of events. I regret drinking because I'll always have that doubt over what role it played that night. I haven't had a sip of liquor since and made a promise to myself to never drink again; not because it's wrong or evil, but because I don't want to ever feel like I'm not 100% in control of my thoughts and decision making.

Drinking is just one of many regretful decisions I made that day. However, I only regret them because of what happened. Any other time, I wouldn't have regretted planning to swim; I'd swum at night before. I wouldn't normally regret the fact that we (me and my ex-boyfriend) had decided to go to the party last minute, instead of just staying home. I'd been swimming a million times before, had drank alcohol and had been to plenty of parties before that night, and had had a fun time and life continued on as usual. I'm sure millions of Americans will enjoy barbecues, drinking and swimming this summer without a problem. In fact, millions of people will do extremely risky things, like ride motorcycles, extreme sports, cliff diving, jump on trampolines, or just silly stunts for fun, and they will get hurt and walk away. Then there's the few thousand people that will get hurt and never walk again. For what ever reason, I was one of those thousand people, in the summer of 2005.

Since my injury, I see the world from an entirely different perspective. I see things on tv or when I go out, that make me cringe, because I know how close that person was to ending up like me. I watch shows like "World's Dumbest...Videos" and I'm just flabbergasted by the things I see people do on purpose and with a specific intent (One example, is a man sets a ladder up against his neighbor's tree, attempts to jump over his fence and land on his pool cover, but gets his foot caught on a rung on the way down and falls on the cement. Another example, is a boy that decided to ride his bicycle off the roof of his house, into a pile of snow down below.) and not only survive, but get up and walk away. At times, it makes me frustrated and angry when I see people do something similar to me or worst, and nothing happens. In fact, in the typical irony to my life, I watched (and recorded) a commercial the other day for Branchburg Pools, in which the salesman dives head first into a similar above ground pool and pops right back up to continue his sales pitch. Don't get me wrong, I don't want to see the other people paralyzed; I just can't help but think, "Why I am so different? Why didn't I pop back up? Why couldn't I walk away?" I certainly can't answer those questions, nor can anyone else.

Having no answers as to why I chose to do what I did, or reason as to why I have to pay such a high price, is extremely difficult to deal with. Given the fact that I was the one that ultimately dove (regardless of any outside contributing factors) into the pool, makes it near impossible to forgive myself. Especially given the fact, that I was an experienced swimmer and have no clear explanation as to what I was trying to do. Did I think I could shallow dive the length of the pool? Did I miscalculate the depth, because I couldn't see the bottom clearly? I'll never know for sure, but I will always regret the choice. The next question is, how do you forgive someone that ruined your life (stole your freedom, took your independence, robbed you of relationships, ended your career and in essence, killed a part of you.)? More importantly, what if you are that person? It's been five years, and I've yet to come up with any solutions. I just continue to try to do the best I can.


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