I’m forever telling people, don’t judge a book by its cover because so so many disabilities are invisible. This isn’t just something I preach on my blog. It’s a mantra I live by. I often find myself vehmenantly describing how difficult things can be for people who appear perfectly fine. I’m almost as often shot down by people who will never understand and choose to believe we are all Such Scroungers but that is not the case.
In this blog I hope to prove to you that you really cannot tell by looking at a person whether they are well or not. I hope to show you how these things can be well hidden, with the aid of this photo…
But that’s not true, here’s the story behind the photo…
My health recently has been on a serious downward spiral. My days are filled with exhaustion and extreme pain. Pain I wouldn’t wish on my worst enemy… well, in theory. Pain I definitely wouldn’t wish on most people anyway. My WORST enemy could possibly have a wee taste; but only because their treatment of me likely set the ball rolling to the crippled shell of a woman I am now. But I digress.. The pain is severe, severe enough to leave me biting back the tears most days. That and the exhaustion combines to pummel the wind from my sails every single day; to the point I can only stand to be up and about around four hours on your average day. To the point when the babies bedtime is also mine. To the point where my hands have been too sore to blog all the thoughts I have swimming around my tiny mind, making me feel my head will surely explode. To the point that even though I’m home all day every day, I’m missing my children. Missing them to the point my heart actually aches.. though to be fair that could just be one of my list of ever growing symptoms.
So, with it being the school holidays, I planned a rare treat. Taking my two eldest to the cinema. Something I only get to do on the rarest of occasions. Even more special, I took them by myself.
The outing was planned with military precision. I chose a film that was as early as I could manage, but hopefully not running too late. Tickets were booked online in the hope of avoiding a queue at the cinema, my nemesis. (Standing in line has often caused me to pass out cold thanks to a pesky little condition known as POTS.) We chose the VIP seats. Less stairs to contend with. More chance I could be at least a little comfortable.
Before going I spent literally the entire day resting. Only climbing out of bed to have a shower with my husband. I sat as he washed my hair and body, resting my head against his bare stomach I sobbed quietly as I worried I wouldn’t be able to do it. I’d have to drag the kids home midway out of the film or perhaps wouldn’t even make it there. I sobbed because of the days of extra pain and exhaustion I knew I’d suffer just from going out on such a simple outing with my children. The unfairness and the fear mingled inside me as the salty tears washed down my face and mingled with the flow of the shower. Then I sloped back to bed and laid there as my body slowly dried. Too wrung out to dry it myself.
Finally the time to leave arrived. I scraped myself from my bed and slung on the clothes I’d chosen. A soft and stretchy jumper dress with a pair of black leggings. Comfortable, expandable, perfect for a body that can go up four dress sizes in ten minutes when my stomach expands, which it does. Daily. You might have noticed my face is makeup free. Not because I don’t like makeup, but because makeup doesn’t like me. I have to think very carefully before wearing makeup as it not only reacts with my skin and causes swollen itchy eyes, it also flares my pain. I was already in all the pain I could handle, makeup was a no. As for my hair, I left it how it dried. Then stealed myself for the task ahead…
I didn’t tell the kids until we arrived what we were doing. Partly to make it a fun surprise. Mostly in case I had to turn back round and head home. I didn’t want to see them try and hide their disappointment from me, so I told them we were running an errand for their dad. (In hindsight that may have been a mistake as the last time we did that we went to collect him a new car; so running an errand actually got the kids pretty excited.) When the realisation dawned on them the excitement on their face made it all worth while. I knew my efforts and all the pain it would cause was completely worth it. I hope that it is these special memories that will stick with my kids, not the countless days of seeing me worn down and in pain.
Fast forward to the photo. Seated in the theatre and awaiting the start of the credits. We had come in really early to ensure I was seated and comfortable rather than stood in the foyer. I took some pictures with the kids for a bit of fun and to fill the time. Also, my memory is so hazy these days, pictures help me keep them in focus.
What memories does this picture conjur? A fun trip to the cinema with my kids. But what do I actually see when I look at the image? I see myself, desperately trying to hold it together for my kids. Painting on a smile and fun to hide the difficulties I go through. I see a disabled woman doing her best to have a few hours of being just like everyone else. Is that what you saw when you looked at it? I doubt it.
Just as you cannot look at me and see all the problems I have hidden within me, you also cannot look at anyone else. So before you start whispering about Joe Bloggs down the street, just remember; the real story may be very different to the snap shots you see.