This is another post which I struggled about whether to share or not, but I also feel that it is very important that I do!
I want to tell you a story, about something that someone said to me eight years ago. It was a small interaction, but the consequences of it have had a deep and painful impact on my life and specifically right now at this point specifically as I have been forced to move from someone who a year ago “looked” from the outside to be someone fully mobile, to someone who now needs aids (and often aids that people have never seen before) to get through my every day life. I am not yet used to being stared at every where I go, and let me tell you, when you stare, and think that you look as though you aren’t staring: ….. you are wrong! When you follow me around the rack of clothes in the store so that you can get a better look, when strain your neck to get a better view, when you follow behind me to get a stare for longer … I see it, and I feel it! I have suddenly become intensely aware of myself and what I look like! Like many people with EDS, our struggle leaves us with little time for make up, fashion or high maintenance dressing, and our clothes need to be comfortable before anything else! I am used to wearing little or no makeup ninety percent of the time, I wear clothes that are comfortable rather than fashionable, and have learnt to be OK with that and be true to who I am rather than what I look like. But suddenly people ARE looking at me, … ALL the time! I have never met anyone (yet) who has ever seen crutches like mine, and as I “walk” slowly and with both legs and heavily on both crutches, I clearly am not using crutches because I have a broken leg (no cast etc) and my crutches are “weird”. It’s HARD!
And it is impossible to pretend that they aren’t looking, and judging. Maybe not all of them, maybe not all the time, but thanks to my interaction eight years ago, where my eyes were opened to just how judgemental and prejudiced human beings can be, when my only “aid” back then was a pair of cheap “Croc” imitations, I can only imagine how much worse that person would judge my footwear now!
I had already been in pain for many years by the time I “broke” my right toe. None of the bones were actually broken, but it was the short version to avoid an explanation, and eight years ago I had NO idea about EDS … but from kicking a ball and collecting someone else’s foot instead, my toe was in such excruciating agony, and my tendons and ligaments so swollen and angry, and my toe itself so swollen, that for two years, the only thing that I could wear, were a pair of large, airy, simple, soft, comfortable “Crocs”. They were eight dollar knock offs, but they were like walking on air. I couldn’t even get my foot into ANY of my other shoes, let alone the pain that squashing into them brought, but at least I could walk!
And to make matters worse, six months after I did my big toe on my right foot, I did the baby toe on the left foot, and not knowing that I had EDS, I did not understand why the damage to my tendons and ligaments was sooooo bad from something so simple, and after many X-rays ruled out broken bones, there really wasn’t anything that anyone could do other than be patient. And so patient I was, and through winter I bought some mens socks that were think and warm but not too tight, and wore them under the “Crocs” and in summer I was either bare feet, or in said “crocs” without socks.
One evening when we were out, this person who I am speaking about, approached me (which was unusual, we knew each other but had never had anything much to do with each other), and opened directly with “You know that those shoes are REALLY bad for your eyes right?”. I was quite shocked by that as it seemed rather forward for someone who I hardly knew, to come up and speak to me so directly without saying anything else, and I also found it an odd comment that I didn’t understand. At the same time, seeing as these were my only option of foot wear, and I was in so much pain and trying to survive, I got a bit of a fright thinking that I was doing something quite damaging, and so I simply said “no, what do you mean?” … and she said “it hurts people’s eyes having to look at them!” I was so shocked that I was stumped for words, and I am not one for quick responses and so on, and so the conversation kind of fizzled. I may have explained my toe situations, I truly don’t remember, but whatever I responded with it kind of ended there I think. I was shocked by so many things, the least of which being that she herself dressed very strangely compared to other people, and I didn’t understand why or what her story was, but I would NEVER tell her that or judge her for it, or even think that it was offensive to anyone, let alone say that! It was cruel and insensitive and judgemental. At the time I was upset, because I truly could not understand how anybody could do such a thing, but even more so because it was something that I could not help, and it was nobodies business what I wore or why…
I moved on, I had bigger fish to fry. It was unkind of her and deliberate (as apposed to just something that slipped out, she had walked up to me to tell me this, and it clearly was something that bothered her), but it was also small minded and I had a life to lead…
But since my LFI this January, which is the toe situation on a much more serious scale (a major injury from something very small), I have again not been able to wear my “normal” shoes (which were always still rather limiting because I have always needed so much comfort and support … but I had been able to still wear some high heels on special occasions and had quite a few very pretty shoes which are also stable and comfortable).. but again I was been reduced yet again so SUPER comfort and support, with a bit of height to match the air cast when I was wearing that, and then when not in the air cast, I had to wear two shoes that could support all the messed up ligaments, and the LFI.
But then in August came the EDS diagnosis and it’s consequences of fallen arches and weak support in my feet and ankles, I am now permanently (FOR LIFE!!) in medical compression stockings, specially made orthotics, and medical support shoes! They ARE ugly and embarrassing, and yes I plan on making the most of it in whatever ways I can, and hopefully can find or make, or renovate, something better than this, but I will never be in scrappy sandals again, and certainly nothing ever very “fashionable!”
And when I cringed and cried, and thought everyone will be judging and condemning, and making assumptions and my husband said no they won’t …. it hit me like a ton of bricks! I was reminded of that interaction eight years ago! If someone who at that time was in the helping profession, could be that judgemental of what I wore on my feet then, that she would approach me, mock me, and make me feel so terrible, what on earth would people think of my feet now?
And before you tell me not to worry about it, I’m working on that already! This post isn’t about what I am going to do about it, and how I am going to put up an armour around myself to stop myself from being hurt every day because people are judging me every single day, based purely on my crutches and my stockings and my shoes! It is about sharing with you what people have ALREADY said to me that hurts and the impact that it has had on my life already! I did not CHOOSE to buy, or put on “Crocs” every day for two years, and believe me, I would NEVER choose to wear these on my feet EVERY SINGLE DAY (yes even when it is boiling hot!!) … It isn’t easy, and I still have a long way to go to build that strength, and I have some people in my life who are carrying me from lots of angles and I am SOOOO thankful for that! But most days I have to go out in public, and I now know, thanks to that insensitive person eight years ago, that I am being judged every time anyone sees me… even if they don’t say anything! So please don’t add to that by saying anything as well…
So the point that I want to make, the part of my journey that I would LOVE you to understand, is that words DO have an impact. It is not about me being a sook, it is about me sharing with you a part of my heart, my journey, that is incredibly painful, and that if by sharing it you can walk in my ugly, unfashionable, hot shoes for a few minutes as you read this, and try and imagine what it is like for a moment, then it would not only help you to be a little sensitive to where I am at, but it might just save someone else who DOES walk in my shoes, or crutches, or wheelchair (or worse shoes, wheelchair etc) a little bit of unnecessary pain 🙂