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My Wheel Life

Shiitake Mushrooms Happen!

A note before we start:
Shiitake Mushrooms = Really! You really need me to say it?

I’ve decided to write this blog on behalf of all my fellow SCI buddies.. (For all you able bodied humans out there, SCI = Spinal Cord Injury) The ones that are having that absolute shizen day and need a virtual hug!
I’ve also decided to write this on a day that I am feeling undoubtedly positive about life, because I’m sure if I wrote it on a bad day it wouldn’t be so “G” rated.

If your reading this and are easily offended or even have your own opinion on the following facts, write your own blog post about them. This is my dance space!

They say that sometimes a smile conceals some of the darkest emotions, and in many cases this is true and for us wheelies this is a very common occurrence.

I am generally a happy person. I am a big advocate for positivity, and laughter is indeed a love of mine. But sometimes things just royally piss me off and these things are very much related to having a spinal cord injury.
While I try my hardest to not use my injury as an excuse, sometimes shiitake mushrooms just happen and the world needs to cut us some slack.

Here’s a few facts that some of you able bodied people may not know about people living with spinal cord injuries and hopefully can give you a greater perspective on why we act, think and feel the way we do.
As I always say, what you see isn’t always what you get!

Fact #1
It is almost impossible for someone with a spinal cord injury to be reliable.
This is not because we don’t want to be, but is because sometimes our bodies physically just shut down. Sometimes we have bad bowel days (this means shiitake mushrooms didn’t happen during our morning routines and we can’t leave the house because we are in fear of pooping our pants) and sometimes our carers just don’t show up for their shifts and we literally can’t get out of bed!
So don’t be upset with us because we missed your birthday party, or we were running late to a meeting or we didn’t take your call, because right now our mental capacity can’t deal with your problems – it’s busy dealing with the overwhelming emotions that come with the fact that we have an injury that prevents us from sometimes doing some of the things we love.

Fact #2
Employers hate us because of our unreliability therefor getting a job is a nightmare.
People suck. That is another fact, and running a successful business sometimes means you have to be selfish, therefor hiring someone who is unreliable could pose a risk to that business. In a perfect world everyone should be treated as equal, but the world isn’t perfect and there are some sucky people out there that don’t give a shiitake mushroom about why our lives can be so difficult. Again, cut us some slack! Most of us want to work because it provides two crucial aspects to our lives – Income and normality.

Fact #3
It really gives us the shiitake mushrooms when you tell us how sorry you are that this happened to us.
NEWS FLASH! Your pitty is petty! While it may come from a good place, fill us with positivity so that the rest of our day can be enjoyable. Treat us as if there is no wheel chair and we too serve a purpose in this life just as you do.

Fact #4
Quite like the above fact, it sometimes gives us the shiitake mushrooms when you tell us how “inspirational” we are. My friends have been acquainted with this fact as I’ve bitten their heads off on numerous occasions  when they have used it. However those of us using our journeys to make a change in this world respect that you see us as an inspiration, if we are using our experiences to better our lives and those of others chances are we are doing it because it keeps us believing we serve a purpose much like we did pre injury, and we couldn’t see ourselves doing anything different. For us its normal for you its inspirational.

Fact #5
Its ok for us to take the piss out of ourselves, but it’s NEVER ok for you too.
Ever heard of the saying “I’m laughing with you not at you”? This is a similar situation. Laughter releases endorphins and sometimes when we can’t find something funny to laugh about, we will make jokes about our situation. This is NOT an invitation for you to do so. This is our injury and disability to make fun of – Get your own! <——– Perfect example, obviously I don’t wish this upon anyone.

Fact #6
We are OCD and if you mess up our routine we might just kill you! (Again not literally but almost)
Did you move something on our bench, in our bedroom or put something in a different cupboard? Did this result in you having your head bitten off?
Well let me calmly explain to you why this happened so your head remains in tact in the future. We put things in certain places so we can reach them. So they are easily accessible to us and so we don’t run them over. We like to have a clean house because we are so susceptible to illness, so the sterile the better! This also explains why we are germaphobes.

Fact #7
We will tell you if we need help with something.
At some point during our journey of living with a spinal cord injury, we have felt like we have had our entire independence taken away from us so when you grab our handle bars to push us up that hill, or you go to grab our chair out of the car without asking us and we crack the shiitake mushrooms, we need you to know that while we appreciate you wanting to help, again, we have a routine and a system that we have set up for ourselves to make life that tiny bit easier for us. Thanks but no thanks. Always ask first!

Fact #8
Not to contradict what I’ve said in the last fact, but..
We need you.
Even when we say we don’t, or we are having an absolutely shiitake mushroom of a day, we need to know that you’ve always got our back and you need to know that we love and appreciate you.
Absolutely no able bodied person on this earth will ever understand or comprehend just how hard it is for us to continue the battle that is our lives. We suffer with depression whether we like to admit it or not. How could we not? We have had our entire lives ripped from underneath us and we wish we could go back to the way it was almost every single day. But that doesn’t mean we are completely unhappy with our lives today, so much so that we need and want you to be a part of it because we need your happiness to lift us up when we are feeling down,and don’t ever underestimate that we can’t do the same for you. Hello! Have you met me (us)? We can be pretty bloody funny when we want to be. Ever seen someone in a wheelchair attempt to crump?
Crump = A ghetto style of dance involving movement from the chest and arms that can actually look similar to having a seizure. NOTE: If you see someone in a wheelchair crumping in a random situation maybe double check that they are indeed not having a seizure! Please and thank you!

Fact #9
Our bowel movements will almost always come up in a conversation around the dinner table.
Shiitake mushrooms happens! And when they do and at the right time, for us its a time to be celebrated. It means we are gonna have a good day. So lets us talk about our shiite mushrooms, in fact if you even want to talk about yours we won’t be disgusted. Now thats friendship!

Fact #10
We are still the same person we were before our injuries, but now we just have wheels.
This seems to seriously be forgotten amongst friends and loved ones. So many relationships break down as people sometimes just don’t know how to deal with such a situation. But as you’ve been reading this blog that could’t be more blunt you should now know the absolute obvious message that i’m trying to portray here is shiitake mushrooms happen and one way or another we will learn to deal with it because some of us are now stronger then we have ever been before and have found great strength in a shiitake mushroom situation. So consider yourself lucky to know us, cause we are truly friggan awesome and make great and honest friends! We will always tell you how it as it is, because we’d expect the same from you. If you can’t handle the truth and you can’t handle us at our worst, then keep moving because you don’t deserve us at our best!

And in closing here’s an interesting fact that some of you may not know that could potentially roll (no pun intended) into another blog post… The majority of us can still get freaky between the sheets. Know your atomy people and also know for the men out there with spinal cord injuries, theres a little pill that can work wonders.
Yes our feeling and sensation is altered, it doesn’t mean we can’t have a good time! (Insert winky face here)
I felt the absolute need to mention that as it’s a question I’m asked pretty much every time people have got a few drinks into them.

So to all my fellow wheelies out there know you are not alone. We are a family, a clique, a posse, and most importantly a team. Support each other, talk to each other, and be there for each other on those shiitake mushroom days.

Sending love, light and lots of the colour pink your way.
Rhiannon x

 

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