If you’ve ever struggled to explain a disability or illness to others because you don’t “look” whatever they think is sick/disabled, then you probably know about the great little story called The Spoon Theory. If you are one of the fortunate, those that don’t have to worry about if they have enough energy, enough strength, enough _____ to get everything done you need to do in a day because of your health, congratulations!
What I wanted to share with you today is how The Spoon Theory has affected me and mine. I struggled for a long time to figure out how to make others, especially those with good health, understand that I’m not being lazy, I’m not ditching out on them, and that I would really rather hang out/work/go out/etc. than be stuck at home because I’m simply too tired, in too much pain, well… simply do not have enough ‘spoons’ to get through my day. This is not the easiest thing to make others understand! Sadly, it’s been an uphill battle even within my family.
You see, as many of you know, I have a genetic disorder called Ehlers-Danlos Syndrome. Some days I have the ability to write, read, enjoy my children (as long as I don’t do too much physically), but others… and by far the greater number of days, I have little to no energy thanks to pain and exhaustion. When I began writing, I used forearm crutches and gave my first MC the same disorder I have. Now, however, I have been told that the crutches need to go away and I need to use a wheelchair almost exclusively. Talk about depressing. There are so many places I simply cannot go now, thanks to my chair. Many shops are not accessible. Others have isles/racks too close so I can’t look around within, even though I can get inside. And don’t get me started on the ramps around me! Ugh…. too steep and oddly banked! GRrrrrr
My point is not to make you feel bad for me, I don’t want that! But rather, to make others see that those of us that have to back out, that can’t do all the things we once did, don’t want to be this way and that we aren’t being lazy. I would invite each of you to take a couple of minutes to read The Spoon Theory and then see if you might think a little differently about those around you. See that the person at Wal-Mart using the electric cart, that person that doesn’t look elderly or disable, just might have something ‘wrong’ and really need that cart. That the person who rarely goes out, might need a friend willing to stay in and help them some…
There’s this great shop I found, I used them in Desires’ Guardian in fact, that makes spoon necklaces and such. I’d love to share that with you also. In DG, Chase wears a choker of a spoon from Sunshine Silverware! They’re a real thing and I simply love the wide variety of spoon items she has for sale.
I know I rambled a little, but I hope you find a new understanding for those that want to be “normal” because we want to do more, we just need more spoons in our day to make that happen.