Having an incurable disease is a strange thing. One moment you’re living your life as normal. The path is clear. Then BOOM! You find yourself picking up the pieces of your shattered plans, desperately trying to put them back together into something that resembles the picture you had before.

But there’s a problem. Chunks of it are missing.

And I’m not talking about the odd bit here and there around the edge. I mean this is BROKEN. No amount of glue is putting this back together. It’s shattered, damaged beyond repair, and you never even realised it had been slipping out of your fingers.

I am going through my own period of readjustment. I’m worse on a morning, I finally understand what it is to feel slow and difficult movements. I can’t go as fast as I could. Then the meds kick in and away I go, whahoooo! It’s great, I’m cured! I work again, I can walk easily, my fingers dance across the keyboard as I type.

For a few hours at least.

Most people still don’t see it, I think I hide it well. My father assures me I don’t look like I’m ill. I assure him that sometimes, I really do.

Then there are the outside opinions. I spoke with someone this week who knows a mutual… person. Let’s call them Boris. Boris and I are not friends. We dislike each other intensely. I think Boris is stuck in the past. They think I’m an upstart. We met when we were volunteers for an active youth group that does lots of outside activities. Yet while I was talking to the other person, (Let’s call them Sally) who is also a volunteer, they mentioned they knew Boris. I remarked that we had a love / hate relationship and Sally said, “Ah, but they have taken some time off recently, which is good really, because they’re, you know, just not up to it any more. They’re a bit past it.”

Silence.

I was stumped at what to say. Now, if Sally has said “Boris is a complete areshole and is no good at dealing with people, I’m glad he left”, I would agree wholeheartedly. But I know Boris has Parkinson’s. I know they struggle with aspects of this hideous thing. I would be amazed if Sally didn’t know too.

Thankfully for her another friend rocked up and the conversation swung away. But I’ve not been able to stop thinking about it. Boris is indeed someone I really try to avoid. I don’t agree with many of their ideas. However, if they are being discriminated against because of their Parkinsons, damn right I would stand shoulder to shoulder with them in defence of their right to be involved in the youth group they have given so much time to. There are many ways they can still be included and have a valid part in the organization. I was horrified by the insinuation that they should leave because they have Parkinson’s.

I don’t know if Sally knows I have Parkinson’s. They said that damning line so off-hand, without a moment’s thought. Why is it that their first thought about someone struggling with a physical disability was “they should pack up and leave?”

This view is so sadly typical of the able. Unhindered by a faulty brain, or a damaged spinal cord, whatever disability it may be.  With their full mental capacity and a strong healthy body they make it clear the rest of us should just step back. We’re broken, faulty and should know our place in the corner waiting to die.

But I don’t want to give in. I have so much more to give. My mind is sharp and with medication I’m (mostly) OK. I’m not sure how many extreme walking trips I could manage now, but I’m still tempted to give it a go. I’m fitter than most late-40 women I know.

I bitterly regret not completing that conversation with Sally. But I will see her again sometime. I will also come across this mindset again. I will challenge it, I will demand to know why we’re considered useless, past it, on the scrapheap for something beyond our control. I often want to point out that just over 8 years ago I too was blissfully healthy. Or so I thought. Then it slipped out of my reach and shattered. It’s been rebuilt, I’ll never stop trying to patch it back together. It may look a little different, but I promise you it still holds great value.

Until next time.