Living with Motor Neuron Disease

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Abstract

the toilet. You can’t scratch your own nose when it itches or pull up a blanket when you get cold. It’s difficult to breathe, like you’re drowning above water. And when you’re chest cramps tightly around your lungs for what seems like an eternity, you feel like you’re literally fighting for your life.</p><p id="2153">And then there are the people who seem to think that just because you’re in a wheelchair, you’ve completely lost your mind, and feel the need to speak down to you in a slow, condescending, high-pitched, and somewhat child-like voice. We might be disabled, but we’re not stupid.</p><p id="c22e">I’m not sure when it happened, but at some point, the reality that I was going to die, finally made itself blatantly clear to me, despite my naive faith that I was going to beat this. The fact that I’m writing this [advanced care] plan is evidence enough that I have conceded to the fact that no one cheats death. Not even me.</p><p id="f808">With that said, I want to end this chapter with a challenge. For the next 24 hours, if you get an itch, no matter how big or small, or where it’s located on your body, you are not to scratch it. You can get someone else to relieve it for you, but you are not allowed to scratch it yourself. If you can do this one single thing, I’ll send you a chocolate fish!</p><p id="8627">Do you feel an itch coming on? ;)</p><p id="6085"><i>-My Dad</i></p><p id="4743"><b>This is an excerpt from my dad’s advanced care plan, shared with us a few days before he died — I think it is too good to be left unread.</b>

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</p><p id="56d2" type="7">Sending my thoughts, love, and prayers to all affected by this horrible disease ❤</p><p id="19a4">Show your support by becoming a member via this link:</p><div id="6293" class="link-block"> <a href="https://ramblingsanon.medium.com/membership"> <div> <div> <h2>Join Medium with my referral link - Ramblings Anon</h2> <div><h3>Read every story from Ramblings Anon (and thousands of other writers on Medium). Your membership fee directly supports…</h3></div> <div><p>ramblingsanon.medium.com</p></div> </div> <div> <div style="background-image: url(https://miro.readmedium.com/v2/resize:fit:320/0*Yymcnom97uTSfNnY)"></div> </div> </div> </a> </div><div id="25cf" class="link-block"> <a href="https://readmedium.com/be-open-submission-guidelines-41ea51ef4ef1"> <div> <div> <h2>We Invite You to Become Our Writer — Be Open Submission Guidelines</h2> <div><h3>You don’t have to be a great writer or super perfect human to contribute here. I believe everyone can become inspirator…</h3></div> <div><p>medium.com</p></div> </div> <div> <div style="background-image: url(https://miro.readmedium.com/v2/resize:fit:320/1*eBrTZS3wC0WwzBZjivi7tg.png)"></div> </div> </div> </a> </div></article></body>

How do I explain what it’s like to live with MND?

How do I explain what it’s like to live with MND? I guess if I were to choose one scenario, it’s like being strangled by a weed at the back of an over-run backyard. At first, it starts off like a tiny insignificant shoot sprouting from a crack in the ground, carelessly growing alongside your feet. You know it’s there but you don’t think anything of it. Much like the words “you have Motor Neuron Disease” meant absolutely nothing to me when I first heard it.

But in time that weed turns into a cancerous vine growing stronger and taller with each day, silently creeping up your legs, your arms, your neck. Given even more time, the vines mature and grasp even tighter around you, eventually engulfing your entire body, to the point where you fall to the ground, deprived of air, until one day you wake up and realise how real this bloody disease really is.

You no longer have control of your body. Muscles kick and buck on their own. And you scream inside your head at the thought of someone having to wash you in the shower or assist you on the toilet. You can’t scratch your own nose when it itches or pull up a blanket when you get cold. It’s difficult to breathe, like you’re drowning above water. And when you’re chest cramps tightly around your lungs for what seems like an eternity, you feel like you’re literally fighting for your life.

And then there are the people who seem to think that just because you’re in a wheelchair, you’ve completely lost your mind, and feel the need to speak down to you in a slow, condescending, high-pitched, and somewhat child-like voice. We might be disabled, but we’re not stupid.

I’m not sure when it happened, but at some point, the reality that I was going to die, finally made itself blatantly clear to me, despite my naive faith that I was going to beat this. The fact that I’m writing this [advanced care] plan is evidence enough that I have conceded to the fact that no one cheats death. Not even me.

With that said, I want to end this chapter with a challenge. For the next 24 hours, if you get an itch, no matter how big or small, or where it’s located on your body, you are not to scratch it. You can get someone else to relieve it for you, but you are not allowed to scratch it yourself. If you can do this one single thing, I’ll send you a chocolate fish!

Do you feel an itch coming on? ;)

-My Dad

This is an excerpt from my dad’s advanced care plan, shared with us a few days before he died — I think it is too good to be left unread.

Sending my thoughts, love, and prayers to all affected by this horrible disease ❤

Show your support by becoming a member via this link: