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Dr. Judith Guedalia and Chaim K. © 2006 How can anyone have the Chutzpa to say they understand me? To what in their life can they compare my experience?! Almost five years ago, while crossing a street a car hit me. The car was driven by a man who, as a result of his actions, was sentenced to lose his license for three months; I lost my life as I knew it, forever. I was 14 years old. Today I just celebrated my 19th birthday. They, my family, wanted to go out with me to celebrate. I think of the lives of the people around me, those who I know well, my parents and siblings, and those who would stare at me and look away with tears in their eyes, and decide I'd rather stay home alone in my room. What exactly do they think I have to celebrate?? That I am alive? I can only move my eyes, jaw and face. That's it. I have a SCI- more specifically known as a C1 - C 2 injury. What is a Spinal Cord Injury (SCI)? A spinal cord injury (SCI) happens when your spinal cord gets pulled, squeezed, bruised, or cut. Accidents--including car crashes, falls, or sports injuries--are the most common cause. Some conditions, such as spina bifida or polio, can lead to SCI, too. Over 250,000 people in the US live with these injuries. An estimated 10,000 people develop SCI every year. Because your spinal cord helps control your body's movement, SCI often leads to paralysis. Where the injury is and how bad it is determines how it affects your body. In general, the higher the injury in your spine, the more widespread the paralysis. A complete spinal cord injury means you can't move or feel your arms, legs, or any other body part below the injury site. An incomplete injury means you still have some movement. Maybe you can raise your right arm more than your left. Or you might control one side of your body better than the other. About half of spinal cord injuries are incomplete. I can't voluntarily move my hands, well maybe one finger sometimes. I can move my jaw, and my computer and electric wheelchair have ‘joy sticks' that can be set up near my jaw so that I can operate them. I have uncontrollable spasms and then parts of my body will move, but I have no idea when that will happen and so I can't ‘benefit' from those movements. SCI does not always mean permanent paralysis. When your injury first happens, your spinal cord may swell, which makes you feel numb in various parts of your body. At the hospital, doctors will treat your injury to reduce this swelling. Depending on the injury, your loss of feeling may be temporary or lasting. If you can begin moving or sensing touch--in your legs, for example-within the first week of an injury, you may recover almost fully. If you can't feel anything six months after an injury, your paralysis may be permanent, that's me, it's almost five years after the accident, the main miracle occurred immediately thereafter, Gd let me live. In addition to paralysis, SCI brings other complications. Things most of you, well me too before the accident, take for granted, like breathing (easily), sleeping, going to the bathroom, or taking a shower, swatting a fly away from your face, all change when parts of your body are paralyzed. Learning to live with SCI means learning to deal with these changes, it is really hard to ‘chose' not to live with it. I can't choose to ‘do' almost anything. Even to voluntarily decide not to breathe!! I breathe thru a pipe that has an electric generator which is ‘my buddy'; it is attached to me 24/7. In my condition one runs a risk of urinary tract infections, bed sores, and stiffness, for example. Therapists and nursing staff have to help me avoid these SCI effects. I am regularly demeaned by the fact that I need to totally rely of the help of others to meet my most basic needs. It feels as though anyone who comes off the street, i.e. the people that help me 24.7, are ‘welcome' to wash, care for my ‘toilet needs', even scratch a fly of my face, or blow my nose. At the moment, there is no cure for SCI. I know this as it is five years since I've been a SCI myself. But researchers are making progress--never fast enough for someone in my condition! In recent years, they've learned how to limit nerve damage after an injury. Now, several studies have shown that one day, medication and surgery may make it possible for spinal nerves to "grow back" after an injury--basically reversing the damage and allowing paralyzed people to move on their own again. This is in the VERY beginning stages!! For now, while research continues, the best thing anyone with SCI can do is stay strong-mentally and physically. Dr. Judi keeps prodding me to use my brain. I wonder aloud and to myself: why. I have still to be convinced that there is a purpose in doing that. Depend on your family and friends. DEPEND ON OTHERS, to me that is the single biggest curse of this horrific situation. I can't live without others' help. I can't even breathe on my own. Until his death over a year ago, one of the most talked-about people with SCI was actor Christopher Reeve, best known for his reoccurring role in the Superman movies. Thrown from a horse in 1996, Reeve suffered an incomplete C1-C2 injury-his spinal cord was damaged between the first and second cervical vertebrae, just at the base of his skull. I have the same injury. He came to Israel to publicize the ‘cause', and I even have a picture of him and me together. Reeve's sheer determination was inspiring to most. He worked to raise awareness (and money) for spinal cord research. In an August 1996 interview with U.S. News and World Report, Reeve shared his SCI philosophy: "What you begin to say to yourself, instead of 'What life do I have?' What life can I build?' And the answer, surprisingly, is, 'More than you think." I have questions to everyone, but especially to Hashem. I have been to many Rabbanim and Mekubalim, a feel a degree of calm immediately after I go to them. But it doesn't last long. I am still stuck here in this chair. My brother told me that when I decided to take off my Kippa, when you have doubts or are angry at Gd and His ways, you need to be strong, Who are you to judge me? Were you ever paralyzed? Did you ever have the experience that you couldn’t breath? That you are demeaned, day in and day out? Always new helpers, people I don't know from the street seeing me naked and bathing me, and seeing me do my ‘stuff' and it is very embarrassing and very difficult to ask my younger siblings, 10 years younger than me, to scratch my nose, to wipe my nose, It is so unpleasant uncomfortable. j- What you tell someone, how would you educate them to behave and speak to you. Don't know. When I was healthy and my brothers were young and bothered me, I ‘d shout at them or even hit them, now even with my younger siblings, I have to yell at them for at least 10 minutes to get them out of my room if they are annoying me. My younger brother thinks this it's funny to hit me, he's 15 years old and I yelled at him more than once or twice. You can't hit me, you have to respect me as your older brother, you can't hit me and think it's a joke. J- Where does he hit you, he slaps me on my face. I told him that I don't think it's funny. J-Does he think it's a way of connecting with you and treating you like you're ok. No he knows I'm angry at him for doing it and that I don't think it's funny. J-How would you act? I would act toward him appropriately. If he was my older brother I would respect him, not bother him, I would help him in any way I can. If I could walk I'd break every bone in his body, and send him to the ER at the hospital. Even if I was ok I'd beat him up, now the situation is different. He's the only one who hits me the other's bother me, annoy me. They come and they kiss me, they know I don't like to be kissed; they wet their mouths first and then kiss me, they do it on purpose to annoy me. They spread their spit all over my face when they kiss me. It makes sad and angry. I yell at them but it doesn't help so much. j-do you think they are jealous? Of what. My mother spoils me, I can understand it, she wants to make me happy, put me into a good mood. It's hard for her to see me like this. Why do you think, because she can't do anything that can help me. It is the feeling of helplessness, for a mother to feel, that is so hard for her, for a mother, to see your son suffer like this and not be able to do something to help him. Because of this she spoils me. And maybe that does make them jealous. You are 19 yrs old what can you do to change this? Are there any adults that treat you with disrespect? Maybe you should live with people your age. I love to be at home. Tell me about that, being at home. It's different being at home, with family, everything has it's benefits and its negative sides. At a wedding: I try to help them over the moment of their embarrassment by saying hello and smiling as though they didn't hurt my feelings and didn't emphasize that I can't move. If it's a young boy who comes and I can joke with him I say that I'm not shaking his hand because I don't know where his hand was previously. With a person older than me, you smile and say hello and try to show that I am not hurting or insulted by his actions (holding up his hand that I may shake it, when of course I can't move my hand or anything else for that matter!) When it happened the first time I wouldn't have asked you to help me and ask you to lift it up. When I was in Alyn I only drank once a day water, I didn't want to ask anyone to get me anything, even water ,I was embarrassed to ask anybody to help me. J- What is the key to give you a kick in the ‘tussik' so that you'll want to do something with your life? 24 January 2006
Going to the beach. They got in to the water and had a good time. Do you think that by not moving ahead in the way you could, you are ‘getting at' (screwing) them? Hum. You know what? You should snap out of thinking I have a future. I'm Lazy. Your mother. Our time is finished and I think that we might discuss Joseph and his brothers from the Torah portion, next visit.
Originally published in the Jewish Press on February 15, 2006. |
