This is an email that I sent to 30 of my friends in 2011 when I realised that walking was soon going to be out of the question for me. I was 23 years of age, living at home, interning for free and bloody miserable. I spent about a week putting this email together, hoping it would get my message across without having to explain myself to every single person I knew.
The last sentence reads: “It’s not easy and it won’t be get any easier in the future.”
Luckily, things are so much easier now. I had this very dark cloud above my head thinking about using a wheelchair because I felt like I might be shunned. I was so, so wrong. Some of those 30 friends got it and they were/are just the greatest people ever. However, some didn’t get it at all. That was the only tough part of the email.
So much has changed since 2011 and I think my head is now in a clearer place than it ever has been. Whatever limitations I expected to see in 2011 have been erased. If there are limitations, you fucking challenge them or call whoever is responsible for them out. So many things change in your life from here to there and looking back on this email, perspective is definitely the most important thing to adjust.
In the last year or two, I have noticed that it’s been getting more and more difficult for me to do the majority of the things that I used to be able to do. My legs have gotten weaker and I get tired more easily.
I don’t know if it’s a physical ailment or a mental block, but I’m just tired and I am done putting myself through things that exhaust me. I feel like I no longer want to prove myself.
I have mentioned to a few of you about this but I don’t know if you realise how serious it is. We had a chair lift put into my house about a month ago which was the cause of many tears and the final admission that this is how my life is going to be.
With my decreased mobility and ability to do things, I need to rely on people more. I even find it difficult to get change from my wallet when I’m buying something in a shop without breaking a sweat.
For me, when I make plans with people, I need to prepare myself mentally and physically before I go through with it. The physical thing is obvious because I can’t really walk anymore. Obviously, I’m not a fan of going places with loads of stairs or that have slippy floors (I have a sharp eye for slippy floors). I automatically need to veto a lot of places.
The mental preparation is a different thing. Over the years, I have received a large variety of abuse from passer-bys whenever I’m anywhere but my own home. From some jock calling me a cripple and high-fiving his mates afterwards for making a thick joke to people actually slowing down their car so that they can shout something at me. And it’s never a compliment.
One night, a guy I was kissing stopped kissing me when he found out that my shark attack story was a joke, muttered something about “not scoring retards” and walked off.
Someone joked recently that I was too sensitive, but when I have to deal with people being so insensitive to me on a regular basis, I have no other option. I have put on a strong enough front for so long that I am sick of dealing with insensitivity and ignorance from strangers and people that I know.
I actively decided a while ago that I will no longer make plans with people that bail on a regular basis. I put in a lot of effort when I do things and when it only takes you a quick text to cancel, it’s kind of hard not to take it personally, especially when it happens so often.
I get that people are busy. We all have our own lives and yeah, we do need to rearrange things but I just want a bit more notice than that day because as I said, I need to prepare myself before I go anywhere.
I know that people have jobs, emigration, boyfriends, girlfriends, final exams, Christmas exams, other friends, families, theses, masters, hangovers, no money – I know people are busy and I’m not asking you to spend more time with me, I’m just asking you to not be so flaky when we do actually have plans.
I don’t want to guilt any of you into thinking that I don’t want you to enjoy these things – please, do. You’re only young once.
As all these doors open for you, so many are currently being closed in my face. With my disability, the opportunities to be young and carefree are very limited. I’ve sadly learnt that I can’t be carefree anymore. I can now only put myself in situations that I know I can deal with. These limitations will make my lifestyle very boring and I, in no way, want to drag you down with that.
I’ve never wanted to be treated differently but it has come to the stage where I do need to be treated differently. I absolutely do not want sympathy but I just want to feel like you’ve considered what I have gone through and will be going through for the rest of my life.
I can’t do stairs, I can’t walk long distances, I will need to get taxis (another reason why I try to limit going out and drinking – I will need taxis to drop me to the door and this can get expensive), I don’t dance – don’t make me dance, I get tired easily so I can’t do loads of things in one day or even in one week.
I don’t know what the response will be like to this. Hopefully it’s not anger and I don’t want anyone to think that it’s a direct personal attack on anyone. Basically, my life has changed and I’m not happy about it. It’s not easy and it won’t be getting any easier in the future.