Saturday, January 22, 2011

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.