The good, the sad and the ugly

Elizabeth Saska

About Life...
Liz Sanza

Purple starAs I've grown and matured (I'm 19 years old now), I've learned a lot about life. In fact, I'm writing a book about the experience of many people with physical disabilities, and like my story here, it will be about the good, the sad and the ugly.

Purple starThe Good

Let me begin with a wider perspective, the world around me. People seem  confused and innocently ignorant about minorities, especially the disabledUnfortunately, no matter how hard the U.S. government tries, the world in America will never be fully accommodating to those with physical disabilities.  Fortunately, however, efforts continue to be made.

In life, material things are not as important as people (disabled and non disabled) may think.  It is more important that we are loved by others and have a home (which we should appreciate).  Although I guess wheelchairs would count as material things, they are often necessary,  as are other assistive devices, to help people with disabilities (like me) function effectively in life.

Although I certainly have my share of physical disabilities, I have a number of amazing abilities as well, and I do appreciate those! For starters, I am a passionate advocate for those with disabilities. I have a knack for music and computers, too.  They mean more to me than they might if I didn’t have reduced abilities in other aspects of living. Because I can do those things, I often forget about what I can’t do. I hope to become a music therapist, and maybe someday, a professional singer. I think I’ll always continue advocating for people with disabilities, whatever else is in store for me.

Interestingly, my disability gives me a great appreciation of my life.  I look at many people who are worse off than me and I think, “God, thank You for giving me this life.” And the best part of life for me is the ability to love and to communicate, no matter what form that communication takes.  As Christian says in “Moulin Rouge”, “A life without love, that’s terrible!”

Purple starThe Sad

I have something called merosin deficient congenital muscular dystrophy, one of forty types of muscular dystrophy. Because of this, my muscles are very weak, and I cannot walk.  Most of my gross motor skills are extremely limited without a lot of help from someone or something (like a wheelchair). Fine motor activities are difficult for me, too, but I can do them with a lot of effort.  Oh, besides my muscle weakness,  I have seizures.

Sexuality is something that is way too infrequently considered as it relates to people with physical disabilities. I expect it to be more difficult for me to develop a romantic relationship  because it is frightening for people to face the unknown, and let’s face it, guys might think that I can’t make out or engage in any other type of sexual behavior. Frankly, the touchy, feely part of a relationship will be the most difficult for me because I can’t just impulsively touch or feel, I have to verbalize my desire first. Although my hormones are functioning very well, thank you, the difficulty with intimate relationships has to do with the physicality of them. It is hard for me to act on my own, and assistance from anyone seems somewhat awkward to deal with.

Before I can even consider marriage,  I need to find someone who is comfortable with the extra needs I have (wish me luck on that one!) More than anything in the world, I want children.  This many seem odd or cruel to you, but I hope that if I were to have children, they (or at least one of them) would have a disability. You see, I would be able to relate with much understanding, and I think because of that I would be a better mother than if they did not.  Though I would love to have children, I am not sure if I will be able to carry a child because of all my medications and scoliosis.  I do know that I will be able to create a child though.  When I first considered this, I was very upset.  But then I realized I could have someone be a surrogate mother for me, and fortunately one of my friends said yes, which was the nicest thing someone could ever offer to do.  I am still upset that I may never carry a child, but I’m working on adjusting to that reality.

Social Difficulties are often a part of having physical disabilities. For me, for example, although thankfully my regular friendships have never been affected negatively by my disability, my friendships with those paid to assist me rest in a fuzzy space somewhere between friendship and business. This is especially true outside of their work times. I’ve got to tell you, it is quite hard when an assistant I’ve become close to is no longer my aide.  Many times these quasi friendships fade away, and because of this, unfortunately, I have developed a complex and have trouble trusting aides I am friends with.  I always tell myself I must not allow the relationship to develop into a friendship, but when you are with a person for a long time that is a difficult rule to follow.

My need for a great deal of constant care bumps its head against my need for privacy; not only because of my need for physical assistance but because I also have epilepsy. I usually need help with anything that involves more than my hands.  I need complete help bathing, getting dressed, brushing my hair, getting meds, transferring to and from my bed and my wheelchair and the car, etc., and being taken to the bathroom.  I need some assistance eating/drinking and brushing my teeth. That’s about it. Fortunately,  I do not need help in talking, singing, or typing.

 Every once in a while I feel like I am being babysat. The epilepsy is not fun, either. Having seizures prevents me from driving, so my life revolves around the schedule of others. I often dream that I could spend some time alone and live a private life. Nothing in my life will ever be a secret, in fact most of it is written down so people can be paid to help me. Ouch!

Purple starThe Ugly

I see six doctors: a gastroenterologist to help me gain weight; a neurologist to keep track of my seizures and seizure medication levels; two urologists to try and get rid of the kidney stone I have (because my body does not break down calcium due to my disability); one who looks over my respiratory heath and equipment; and a nephrologists who gives me medication to break up the kidney stone...or at least keep it from growing.

When I was eleven I was in the hospital at least 4 times because of pneumonia, once because of a collapsed lung, and another time because my CO2 levels were so high I was unconscious for a week.  When I was twelve I had a G-tube inserted to give me supplemental feedings because I was only 32 pounds.  Muscle weighs more than fat, and I had neither.  At fourteen I got pneumonia again and was put in the hospital, but since that time, I have been okay, really!

Hope that you enjoyed my story. If you have one of your own, send it my way for the book!

This slide show I put together will explain what merosin deficient congenital muscular dystrophy is all about.

Interested in my perspective on things when I was younger? Another story!

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Joan Fleitas, Ed.D., R.N.
Associate Professor of Nursing, Lehman College, CUNY
Bronx, New York 10468

Last updated: September 22, 2006