When you’re a teenager, you spend a lot of time figuring out exactly the path you want your life to take. You’re going to be married (or not), have kids (or not), have such and such career, live here, work there–on and on.
Life sure is funny sometimes, isn’t it?
I think one of the biggest rites of passage from the teen years into actual adulthood is when you start to realize that the things you wanted and the things you actually have really have nothing to do with each other.
Me? I wanted to be a marine biologist. I was going to work and live between Alaska and Hawaii, studying marine mammals. I would become a leading expert in the field, maybe appearing in National Geographic occasionally just for variety. I didn’t much care if I was married or not, and I certainly didn’t want any kids to slow me down.
I am not a marine biologist, incidentally. I am a caregiver.
What happened? Life, that’s all.
This isn’t a biography. I hold no delusions that the boring tale of my transformation into the ultimate soccer mom I am today is of any interest to anyone. It will suffice to say I am married with two children. Also, and the full time caregiver to my sister. Oh, and my 14 year old daughter is also permanently disabled, and I’m her caregiver, too.
My sister and my daughter’s disabilities are very different. My sister has CP, and my daughter has an undiagnosed neuromuscular disease. Sister is non ambulatory. Daughter ambulates a little, but poorly, and is a fall risk because of seizures.
So, you may be asking, what’s my point?
As with most of my writing, there is little point. (Sorry.) But I heard something the other day that seemed insignificant at first, then began to gnaw at my mind and churn around in there (along with the lyrics to hundreds of songs and a vast library of movie quotes) until I finally had to write about it.
Someone called me a superhero.
Let me start by saying I wouldn’t be caught dead in tights or a unitard or anything else that is the going fashion among the superhero community (you should be grateful–trust me.)
Mostly, though, the comment left me feeling a little disappointed in the way caregivers are viewed in our society.
As a full time, total care caregiver for two people with disabilities, I can assure you I am many, many things, some good and some (not so) good, but a superhero isn’t one of them. I’m not even side-kick material.
Superheroes don’t get tired. They are strong and fearless and they always save the day and solve the problem. They always beat the bad guy. Superheroes swoop in, set everything right, and fly away to do whatever it is superheroes do when they aren’t superhero-ing.
I am painfully non-super.
Tired doesn’t even begin to describe the level of physical and mental exhaustion I can experience. I’m physically strong (I like to think I have a dependable, pack-mule type build), and I act fearlessly when necessary, but I am afraid almost all of the time. Sometimes I feel like a total emotional weakling.
The biggest difference is that I can’t really set things right or beat the bad guy. Oh, I can manage day-to-day life pretty well. Everyone is clean and fed and warm and (hopefully) happy. I can change a diaper with one hand. I can administer meds in all sorts of fun ways, and I can load, strap, unstrap and unload a wheelchair in Olympic-gold-medal-worthy fashion.
What I can’t do, though, is beat the real bad guy.
I can’t make Sister or Daughter’s disabilities go away. We manage symptoms. We fight fires and try to prevent new ones, but I can’t make Sister walk, or Daughter talk, and I surely can’t make their lives “normal.” I can’t swoop in and destroy all the things that are basically just mean–things that take and tighten and weaken and hurt and sting and crush. Hell, I can’t swoop at all.
I would also be willing to bet that superheroes never have days when they are almost drowning in self-pity. They probably never sit morosely on the side of the bed and think, “why does everything have to be so hard?” They never have secret, hateful moments when they wonder what happened to those dreams and plans they had when they were teenagers. They certainly never have weak moments when they wonder if their lives will ever be anything more than an endless cycle of cleaning and feeding and medicating and entertaining. Obviously, I don’t have super powers.
I’ll tell you what I do have, though: a very important job.
My job is far more important than any role I could have ever played in the marine mammal world. I don’t think I’ll every make it into National Geographic, but I’m okay with that. Sister and Daughter rely on me to take care of their physical needs–that’s obvious. That’s what caregivers do, right? Provide physical care? Yes, but we do so much more.
I am the link between my people and the rest of the world. I make them aware of the world, and, more importantly, I make the world aware of them. I advocate for them, and I make sure others treat them fairly. I work very hard to make others see Sister and Daughter for what they are–a 36 year old woman and 14 year old girl. Each unique. Each wonderful in their own way, just as we all are.
In short, I am their voice.
Somehow, this seems infinitely more important than wiping a bottom or administering a pill. It is the heart of what we do, the very essence of caregiving, and we are doing it with plain, boring, every day skills. We aren’t superheroes. We are sisters, and brothers, and mothers, and fathers, and wives, and husbands, and children, and so many more. We are caregivers.
And, if you ask me, that’s pretty super.