When I was a teenager I wanted nothing more than to be normal; with my super short, curly, mousy coloured chemo hair I stuck out like a sore thumb. Luckily in high school everyone was so wrapped up in their own lives and drama that people barely gave me so much as a passing glance on their way to English class. And I grew comfortable in my invisibility.
I was never the best at anything. I barely scratched the surface of good most of the time. But I was good enough at a lot of things and that has served me well for most of my life.
Now I am stuck in what used to be a perfectly normal, at times invisible, good enough body. I am no longer normal, but I am normal enough, and that is a horrible way to be.
If you see me before I have braced and splinted up for the day, I appear quite normal, until you get a look at my many assistive devices haphazardly scattered around the house. You might run in to me out and about, using a shopping cart instead of my walker and wonder why my husband is making me push it around the supermarket. Chances are you would think I was just any normal, healthy 29 year old female grocery shopping and not give me a second look. I pass as normal, enough.
This is challenging for a few reasons. One of them being people not believing me when I ask for help reaching something or think I’m faking when I’m limping around the house. These illnesses are so hard to explain and the fact that they are invisible makes it even harder. As they have progressed they have become more apparent to the knowing eye and spoonies can usually recognize one another in public (we even give each other the nod to convey an unspoken understanding). Otherwise, family and friends sometimes do not understand why I’m in the hospital so often and why I can’t make it to their cousin’s daughter’s 8th birthday party because “you looked fine the other day.”
Appearing fine on the outside while falling apart on the inside is a spoonie curse. It’s impossible to understand for those who aren’t familiar with us warriors who can smile while being hooked up to an IV with what is basically poison being pumped through our veins. We can laugh while tears are streaming down our face and that contradiction seems bizarre to those around us. We can say “I’m fine” pretty convincingly through intense pain and nausea. We are fighters. We are strong. We are brave. We have no choice.
Only those closest to us can see the heartache behind our eyes as we miss yet another family function. We are liars to our core and only a select few know the truth.
We look normal enough, but we are not normal at all. And that is emotionally wrecking.