For 12 years I’ve been living with a thief. An insidious, grotesque, invisible thief that has stolen some of the most valuable things in my life. And no matter what I do, or who I go to for help, no one can stop this monster! It is the unrelenting, unforgiving, merciless pain in my head. It is my invisible disability.
Growing up I always got good grades, was involved in all the right extra curriculars and was on the college tract. Mom never had to tell me to do my homework or to watch less television. I was never called to the principal’s office. More likely I was waiting at his office because he was late for a meeting I had scheduled with him. (If the words goodie-two-shoes or teacher’s pet are running through your head, you’ve just discovered my high school nick names.)
I got my first job when I was 12 years old. I had to get a special work permit from the town clerk’s office with my parent’s authorization because I wasn’t not legally old enough to work yet. But I wanted to make my own money and I wanted to work at the vet’s office. Ok, so I was a great kid…what’s the point, right? The point is, I’ve always had an independent spirit. The ironic part…I was able to be more independent as a teenager than I am now as an adult…all because of my disability.
This is what happens. Disabilities rob us of many things. They’re like evil little thieves with invisibility cloaks running around our lives stealing at will. I have lost financial stability and physical capabilities that once allowed me to be completely self-sufficient. And it’s not as if any of this happens in a vacuum. Loss of independence almost invariably leads to anxiety and depression. Here’s where I’m at now…
- Can’t hold down a job – awesome for the self esteem, really!
- Can’t afford to live by myself – my ex just loves having me hang around two years later, honest!
- Often need help with simple daily tasks such as making meals or walking the dog – really feeling good about myself now!
- Need help administering medications -all the injection sites I can reach are used up – need to let them heal for a while, but hey, I’ve taught valuable medical skills to so many of my friends!
- Can’t drive at night – the sick, poor girl with a chauffeur – cool!
….Just to highlight a few examples. Yeah. Awesome. Just what I always wanted to be when I grew up. Well, OK. So things haven’t exactly worked out the way I had hoped. And I’m making fun of some pretty serious issues, but really, what else can I do? This is where acceptance and reinvention come in…not just for me, but for all of us. We live with chronic conditions that fundamentally alter the way we live our lives. It doesn’t matter whether it’s fibromyalgia, or chronic migraine, or chronic fatigue syndrome or depression or bi-polar disorder. Adjustments have to be made to the internal way we frame our view of our existence. Whatever shape that frame started out as, it’s going to have to change to fit the new picture.
At 32 I thought I would be married with kids leading a successful career. I am a little ways from off that. Okay, that’s in a different galaxy. I’m single, childless, unemployed, and living with my saint of an ex-boyfriend. But I’m moving forward. I’ve adjusted my frame; I’m focused on the new picture ahead and I’m getting there, one step at a time. And I’m taking the time to get every ounce of enjoyment of out each day that I can. Today I get to spend time with some horses and watch my dog have a blast with her new best friend. These are simple things, but they make me happy. There is plenty of time for complex things and I know there will be days when I will look back and wish I had time for simple things the way I do today. So while everything about today might not be ideal, I’m choosing to seize all the lovely moments.