Monday, April 16, 2012

Ignorance is Bliss

Not much gets me as fired up and passionate as someone questioning my quality of life. Lately, in the communities I’m a part of, the topic of quality of life for someone with a severe physical disability has come up. Although the issues are separate topics (one blogged about by a family, the other two by nationally televised programs) I found myself feeling frustrated by the beliefs expressed in all three forums.

There is an old saying that goes “ignorance is bliss” but, in my opinion, that couldn’t be further from the truth. Lack of understanding, in my experience, leads to a great deal of misunderstanding. Looking at the child version of myself, you would not have thought anything was wrong with me…you would have thought that I was an average baby girl. My parents learned that I had a potentially fatal disease called Spinal Muscular Atrophy or SMA. In 1988, they weren’t offered much, other than “take her home and love her”. To this day my father says “as if we would have done anything else”. The truth is, my parents did exactly what they were told but also took the diagnosis and its accompanying timeline of a maximum of 2 years and lived. As a child, my parents insured that my life, and that of my younger sister’s who also had SMA, was full of ordinary things. We attended school, went to the beach, family vacations, spent time with friends, had tea parties, and so much more. There were medical things that had to be addressed too. We had daily breathing treatments, physical therapy, speech therapy, doctor appointments, shots and hospital stays. It wasn’t the life that my parents imagined when they found out they were having a baby but it was an awesome childhood. In 1991, my father became an unwitting single parent after my mother was killed in a car accident. He was forced to take on the role of mother, father, doctor, nurse, chauffeur, chef, and so much more. In the next year, we also lost my sister to SMA and we became a family of two. Life changed drastically as we moved and attempted to start over. Despite the hardships, my dedicated caregiver, Brenda, ensured that my childhood was nothing less than extraordinary. SMA limits my ability to do almost everything independently. I have never had the ability to sit, crawl, stand, or walk but that didn’t keep us from doing anything I could think of, from horseback riding to canoeing to flying in an airplane. My world was only limited to my imagination. Despite what passersby’s may have thought when they looked at me, I have lived an extraordinarily happy life and I’m not done yet.

Quality is defined as “The standard of something as measured against other things of a similar kind; the degree of excellence of something”. So I guess that one could say that you don’t know quality until you have something to compare it against. In this instance, no one can judge what quality is to another person. Like it or not, I feel that my life is a quality one worth living. Despite needing to rely on life giving equipment, I enjoy myself and feel that today, at the very least, is worth it. I can’t judge another person’s quality of life because I don’t live it but my inability to accurately predict that there will be quality moments in every day should not allow me to quantify their days. We’re not born with an expiration date that is visible to the world and as such no one knows how long they have. I agree with most people that however many days you have; they should be made the most of. But, that being said, into every life there must fall some unpleasantness. Not many children enjoy car seats, yet any responsible parent makes their children use them because they are to protect them. Similarly, my father chose to protect my life by providing certain equipment that may not have been my favorite. Everyone has the right to decide what is best for their family and child. I don’t have to agree with anyone else’s choices but please don’t force your choices onto me. My life, my choice. I know that life is a terminal experience and that my days are fewer than they were last week but I am determined to enjoy this “terminal illness” because that is the hand God chose to deal me. It can be hard but life would not be worth fighting for if it was easy.

From the outside looking in, you might assume that I have nothing to live for but you would be wrong, dead wrong. Yes, I require a trach and ventilator to breathe. Yes, I have a feeding tube because I can’t eat enough by mouth. Yes, I use a power wheelchair because I can’t walk. Yes, I have been in the hospital longer than I can count. But when I wake up in the morning and look out the window, I’m thrilled that I have the opportunity to live another day to its fullest. I have bad days, like everyone else, but despite what you might think, I also have some amazing days. My quality of life is probably better than some able bodied individuals. I know, at 24 years old, I’ve outlived the doom and gloom prognosis given to my parents by more than ten times. I know that tomorrow is not promised to anyone so, despite what you might see as limitations too large to overcome, I will live this day, and every one after it, to the fullest. My disabilities are made disabling by others ignorance. “Ignorance is bliss”…or is it?

28 comments:

Kim S said...

There is a reason you are Queen! Very well put and I love you.

Laurie said...

Awesome words!!!!

Marylynne said...

I just love you MJ! What else could I say... :) Much love from Louisiana!

Jen Peters said...

Beautifully said MJ!! It makes me so sad when others think just because a child has SMA that their life isn't worth fighting for. I will fight every minute of my day to give Ella just one more. And you are one of those amazing people who helped me to see that the doctors were wrong, Ella is going to have a very full life! Sending our love MJ ;)

Junior said...

perfectly put, I get the quality of life question frequently with Junior. Disability does not make his life any less worth living. He is the happiest, most determined child I know and he loves life more then any able bodied person I have met, people only see the disability and they so often miss the amazing person behind the chair. The looks of pity always make me want to scream, they need to find somewhere else to put that pity because we sure don't need it. Hugs

gettyowl said...

Absolutely beautiful MJ Queen! Life is all about perspective. Some live it like there is no tomorrow and some live it believing they are entitled to many more. This journey as a mother of my beautiful daughter that happens to have SMA is that she is one of the most happiest little girls I know. This disease is not stopping her for a moment. And our need as parents to not only protect but to nurture exploration is our responsibility, and it is a pleasure.

Anonymous said...

I love you beautiful girl
Well put <3 Aunt Ruth

Britney Sadler said...

very awesome and well said MJ! Love it so much :)

Kpiazza said...

All hail the Queen! Thank you MJ for showing us the way! You are a true inspiration!!

Tina Mac said...

Thank you always for enabling us to know your awesomeness. Thanks also for the kick-in-the-pants reminder to really live the blessing of each new day. The Mac Pac loves you!

Dru said...

My son is unable to do anything for himself, and he is unable to talk or express himself as well. Your blog proves to me what I've known all along--he is a happy 12 year old who wasn't supposed to live after 2 weeks, and he's happy to be here. His quality of life is excellent because everyone who loves him makes sure he is included in everything. Thank you for sharing your thoughts--I couldn't agree more!

Jen Elsner said...

Inspiring words Miss Queen!!! Feel free to also me with this when I'm having a ”down” day! And, as soon as she's able, Peyton Lola will be reading this :))) <3

beth lockwood said...

Wonderfully said MJ, as always! You are such an inspiration to all of us! We love you!

Unknown said...

you are amazing!!
I am glad you do all you do for the SMA community!!! well said!!!

I am glad God made you just the way you are , you are an inspiration to many!!! everyone in this universe has a purpose!!
lots of love!!

Anonymous said...

Beautiful. You made me cry, and smile. Very well said.

Anonymous said...

MJ you are an inspiration and a star. We love you! The Scurrias

Jim Hecker said...

As a grandparent of an SMA child, little Cooper Somers, I applaude your optimism and resilience and thank you for such an uplifting and positive message. Believe me, we are all working towards giving Cooper the best possible life he can have, and his happiness and engagement along the way are wonderful gifts and thank yous. Thanks for your great, and very well written, message. Jim Hecker

Life with SMA said...

MJ, You are such an inspiration to all of us!! We Love you soo much!!
The A team!!

dianadear said...

Love hearing your thoughts, your heart, your perspective... Thank you for putting into words what our kids can't, for standing up for them as well as for us parents who try our best everyday, despite the walls that keep blocking our way!

Chris and Sarah said...

Thank you for this post!!! We are in the process of adopting a little boy that has spastic quadriplegia and so many people don't understand why we would do this. I was just missing our our little one really bad this morning when I came across your post. Thank you!

Anonymous said...

MJ, you are an amazing writer! But that is just a "little bit" of your talent. I have a nephew who has SMA and before he got his diagnosis, I already knew he was going to be somebody amazing. The SMA was just a "little bit" of his total picture. He is the one person in my life that I try to emulate. He is stronger than all of us in the ways that really count. If I am having a "pity myself" day, all I have to do is look at his picture and remember the things that he can do and has done and how he brings smiles to so many faces each day. God gave him a personality and the ability to love every person and he never judges anybody. It might sound strange, but SMA has been a gift in our family as it has taught us all what really matters and what doesn't. Thank you for a great day MJ and I will think of you when I look outside every morning and be happy for the day!!

Anonymous said...

Hi Margaret - I don't know if you remember me, but i work for Robert Tonner and we first met about 15 years ago at a doll event. You are truely an inspiration as i have watched you, through your dad, grown from that cute little pink wheel chair to an amazing young adult.

you are definitely a hero to me.

hugs,
Miss Nancy

Anonymous said...

So often we forgot to just stop and enjoy what we have. You can do anything you ever wanted to do and wouldn't your Mother be so proud of who you have become. I don't know you but my heart jumps out today to say "have a great week" and enjoy every day to its fullest with much love, Lori, Phoenix

Anderson's Autumn Adventure said...

itimishWell said. I have taught severely handicapped children for 37 years and had the privilege of having 2 boys with SMA in my class over the years. I have been inspired, impressed, and blessed to have had them in my classroom. Everyday is truly a gift and well worth fighting for.

All the best to you!

Cheri Anderson

bmccormick_ati said...

Wow....what an inspiration to us all!! I thank the Lord that you have lived to be 24 ~ we serve an awesome God! You have been through so much but you realize that you are blessed to see the beginning of a new day and live it to the fullest!! You are such a blessing to everyone!! I hope you have a wonderful blessed day!! Brenda

Jared said...

Wonderfully said, MJ! I could not agree more with all that you said in this blog post.

Carole said...

This is a beautifully articulated reminder that we should ALL be able to make decisions about our own lives. For many of my friends, it is a huge struggle to figure out how to give them the tools to make real choices, but we have to find a way. Things look and seem so different from inside the story. Thanks for this lovely post. Gave me much to think about.

Khrystal Davis said...

MJ,
Thank you! You are an inspiration to our family. Thank you for all you have done and continue to do. <3
Hugs,
Khrystal & Hunter