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Sunday, August 10, 2014

A World Without Me

Eugenics: the study of methods of improving genetic qualities by selective breeding (especially as applied to human mating)

People hear the word "eugenics" and they automatically think of the Holocaust or the sterilization of the poor, uneducated, colored, and or people with disabilities. That E word has a huge negative connotation because there's been people with God-complexes and their own agendas that did horrible things thinking they were improving the human race. Eugenics is a very ethically complicated subject. And whether we like it or not eugenics will one day lead to the eradication of most if not all diseases.

Since I was a little I've been told that one day there would be a cure for my disease, Spinal Muscular Atrophy (SMA). I was also told that if I ever wanted to have children I should have my partner get genetic testing. Around 1 in 40 people unknowingly carry the SMA gene and it takes two people with the gene to have a chance at having a baby with SMA. Since most carriers of the disease are unaware that they are carriers it never occurs to them to get genetic testing. If I decide to have children I could have my partner tested and if he wasn't a carrier there would be nothing to worry about. If he was a carrier then we would discuss our options such as adoption or selecting the egg and sperm that didn't have SMA. I want there to be a cure and I'm an advocate for genetic testing. However, not everyone with SMA feels the same about these topics.

(1. I respect that opinions about this are very personal and I'm not saying that anyone that doesn't agree with me is stupid or selfish or whatever. 2. One aspect of genetic testing is having your baby tested in utero and deciding whether you want to terminate or not if they have a disease. I'm generally against that. I'm only a proponent of preventing diseases pre-pregnancy.)

I was probably a teenager when I decided there wouldn't be a cure for SMA in time for me and I've accepted that. I still want a cure for future generations. Sure I love my life, it's been great, I wouldn't be who I am, or met the people I have without this disease. That doesn't change the fact that SMA is an AWFUL disease that robs people of their abilities and lives too soon. I would not wish this disease on my worst enemies. It takes a certain type of personality to truly thrive with a disease like this.

I was born a stubborn surviver. That isn't a personality trait life with SMA gave me. I don't know who I would be without SMA but I know my stubborn streak would still be in me. A lot of people with disabilities contribute all their good qualities to the adversities that their disease have put them through. I am not an angel or anything, there are parts of myself I need to improve. But sometimes I think that everything bad I've been through is the reason I have a great personality. Adversity adds character and all that jazz. Then I think about all my great able-bodied friends/family and realize I could still be an awesome person without this stupid disease. On the other hand, I've met some people with various disabilities that are horrible people. Good character and a functional body are not mutually exclusive.

As far as genetic testing goes, I don't even know if I want kids. Men have never been historically known as the caregivers in society. Of course, there are men that choose and love being caregivers but that's a little harder to find. As it is, whatever man I end up will end up being my caregiver part of the time. Assuming we can't afford a constant nanny he will also be a single parent in the physical aspect of raising our child. An able-bodied child typically won't need physical help for 18 straight years. A child with SMA typically will need that help for 18+ years. To me it would be extremely selfish to ask my husband to spend the remainder of his life being a caregiver for me and our child(ren). So yes my husband will be getting genetic testing if we want children. And it's not just my husband I'd be considering; if it can be avoided I don't want my children to have this life.

I wouldn't trade my life for the world but yes if I can I want to prevent others from this life and pain. I was emotionally bullied extensively in my later elementary school years. In 6th or 7th grade I came home from school everyday that year and cried due to excessive loneliness. I relinquished certain dreams because my body wouldn't cooperate. I watched my little sister hit milestones I never would and I had to teach myself to be happy for her. I've had countless guys reject me straight away or tell me I'm that I'm their "dream girl" but ultimately they couldn't handle my disease. I've learned to ignore the stares, whispers, and points from strangers in public. I lost my first, out of many friends at 13 because a disease killed them. And everything aforementioned is just the tip of the pain ice-berg. If I was a weaker person I would have cracked years ago. So no I don't want a stranger, let-alone my child to experience that. (By the way, the older I've gotten the more grateful I've become for everything I can/do get done. I've done a lot in 22 years. And now I am typically happy, but I don't want to sugar-coat things. SMA is not something that's always easy to live with.)

This is why I'm pro-cure and genetic testing. One day if scientists eradicate diseases there won't be people like me. But that doesn't mean the world won't have any unique or good people. A world without children that have bodies that waste away or are forced to become wise before their time isn't a horrible world. That's the plus side of eugenics.

(P.S. As I Christian I feel that God made diseases for a reason but I also believe he made technologies and Doctors that can discover treatments and cures, for a reason.)

Friday, August 1, 2014

Great Expectations

As I turned 22 a few weeks and August is Spinal Muscular Atrophy (SMA) Awareness month I thought it was fitting to discuss expectations. There are literally millions of articles/blogs about SMA so I'm not going into great detail about it. There's a lot I could say about the disease but I'll just say this: not only does SMA steal muscles, but it also steals lives and certain expectations. My parents had anticipated a life of "normalcy" for me until the doctor told them I wouldn't live past the age of two. I've defied a significant number of negative and positive expectations.

Expectations are everywhere in life. Whether it's about yourself, your loved ones, your future or anything else you have these hopes for how life is supposed to turn out. If you're exceedingly lucky your future will unfold exactly as you desired but most likely it won't. Expectations are tricky because if one doesn't have any one might live a stagnant life that can't progress but if one has too many or too great of desires then they are just asking for disappointment.

Balance in this area has always been a struggle for me. As a child I was convinced that most of teenage and adult life would be almost like tv and the movies. Obviously, I would soon learn how disillusioned I was. That didn't change that fact that I had ridiculously high hopes for certain milestones and when they didn't go as planned I was often crushed. It got so bad that I started expecting the worst out of everything. That way if something good occurred I was pleasantly surprised. However, a mindset such as that is a very cynical approach to life.

For me life is best when I don't expect the worst but I expect nothing at all or keep my desires very minimalistic. Recently I went through an experience that would have broken my heart years ago because I would have wanted so much more. As it was though, I was able to see the whole ordeal for what it was: a necessary learning experience. I was only able to do that because I went into it not anticipating much.

And maybe that's what life is about: learning not to expect so much out of people, places, and things but learning that you can expect to learn a lesson in every good and bad thing that happens in your life. You can't expect someone you love to always be there. You can't expect your children to be exactly who you imagined. You can't expect to be financially rich. You can't expect an impossible future. But you can expect routes that deviate from your plans so adapt and learn from them because in life the expectations that are completely unexpected are the ones you can always expect (try saying that 10 times fast ;).