Monday, 13 January 2020


I’m stubborn and proud.

These qualities were drummed into me as much as manners were.

When I first started having health issues and the first signs of Muscular Dystrophy started showing upon my body I was already installed with these qualities.

Despite this, the first prognosis for my health condition was not good. At the age of 13 my parents were told that I wouldn’t reach my 16th birthday.

A few years pass and the prognosis extended to 18. Subsequently, it was drummed into me to leave a “legacy” that proved I was more than my health and I should achieve all I could with the little time I did.

I did exactly that.

I threw myself into my schooling and education and gained good qualifications.

The years went on. The prognosis changed repeatedly and I tackled it.
It was a battle.

I get told one thing and I had to beat it.

No one else.

I had to prove that despite my condition that I could do everything anyone else could and in some instances better. 

My will to be “normal” has always succeeded over the ability of my condition.

But, despite this, you can get lost in the stubborn position to prove that you can do everything alone and that anyone else can.

In doing this I have caused myself more harm than good at times. A cost that lays heavy on not only myself but to those around me.

This last year has been proof of that.

Mental health and physical health always go hand in hand. The downfall of one has lead to the fall of the other.

By the end of 2019 I was in a position with my disability where I became solely dependent on Hannah and the kids to help me.

I was dependant on being lifted in and out of the wheelchair because I had lost the ability to do it independently. The constant use of the chair meant I lost strength in other areas. This then knocked on to the activities that I was doing.

For someone with great stubbornness and pride my life was a hard reality pill to swallow.

There was a way around it though.

I could get a motorised power chair. If the height was right I could get in and out of it independently. I could transfer between bed to chair without being lifted. I could transfer between car and chair without being supported. I could even use the toilet unaided. Finally, I could get my lost independence back and go to town with Will or even pick James up from school without Hannah coming.

We looked online and to get what I need it would we would need to pay between £900 - £2,500+ for something suitable.

This is far beyond our budget.

I drew up a plan. I checked my money and what I could save. I worked on a scheme to sort my work out. I could earn and save enough money to get the chair and the target date was December 2020.

I could do this myself.

But at what cost?

To become weaker and more dependent on Hannah in the meantime? Get to the point of affording the chair but it no longer serves me the way I had planned?

Hannah believed we should ask for help and see if we can raise some money from friends and family. Then we could meet half way. We could get the chair by July 2020. It could work and I wouldn’t suffer further.

I swallowed my pride and agreed.

On December the 12th Hannah set a Go Fund Me page up and shared it online.

I scoffed at the idea.

No one would be interested this close to Christmas but that was ok we had 7 months to see what happens and I have 7 months of my pride and stubbornness working to cover the majority of it.

24 hours.

24 hours and we hit our target.

Even now, a month later and I can’t quite get my head around the fact that £1200 was raised in that small time.

48 hours.

Yet it didn’t stop.

24 hours in celebration and heightened emotion and the increased total reached to £1397.

Another 48 hours and 2 private donations later and we hit £2397.

I’m not ashamed to say that over those 4 days I cried a lot.

Not just for the money and what it would do but the overwhelming love and support that the community around me had given me. Their words meant more than the money itself.

Asking for help is difficult for me. Showing that I need help is even more difficult; it’s never been my way.

Yet the generosity and love of those in my life shows that sometimes going out of your comfort zone, no longer being an island and acknowledging your village of people right in front of you can benefit in more ways than one.

Now, to begin my next chapter.


xxBr0k3n13xx said...

You are an absolute dickhead, always gotta be better šŸ˜œ Haha! Seriously though, I know how hard it was for you and I'm glad you hit your target so quickly! Can't wait to see you doing around šŸ˜‚

Plutonium Sox said...

Hooray! So pleased for you. Now you need to get off your motorised arse and find a chair and set up a fundraising page for the marathon.

Hayley said...

So pleased you got your chair. I had to set up a gofundmepage me page for my chair last year. I hated doing it. I didn't want my business known to others. But I'm incredibly grateful to the people who donated. It keeps me going knowing how kind others can be. Hope you get to go on lots of adventures. When i got my new chair, i was so excited to go to the local shop by myself šŸ˜‚