Home Days 202 - 230 10th Oct - 8th Nov 2021

 Another full and interesting month that’s been spent talking with various people and groups.

As time goes on I want to better understand what has happened so far, how that affects me now and how I move forward from here. I also want to help others gain some level of understanding of that as well and I can only do that by engaging with people. A far cry from my wanting to just hibernate in my own safe space and send out the occasional blog post 😂 I feel this is a positive thing and David  doesn’t need to persuade me quite as much as he used to. 

With that in mind, I had the opportunity to present to a Disability network group of professionals who serve the Disabled community daily. I think my aim was to give an insight into the impact of a life changing event and just how fragile the certainty of our immediate future can be. Heavy stuff eh? Haha Well you would think so, but actually it wasn’t  The attendees were warm, welcoming and more importantly, interested. It felt less like a presentation and more like a chat with a close ( if somewhat large) group of friends. 

David and I were also able to join Skills for Life 5 1/2 . A one and a half day online event we were invited to by @shawnswansonjohnson . It was hosted in the US but had attendees and contributors from all around the world giving talks and tips on life as a Bilateral upper limb amputee. Some incredible stories and fantastic advice from a truly sharing community. As I said, it was an online event but hopefully we can attend one of the next face to face meets. 🙂

I also had an in depth and thought provoking discussion online with James Owen Roberts https://www.facebook.com/groups/743579706109487/ James is a Paralympian and Athlete who through the use of his own experiences and  knowledge gets you to challenge your own thinking and behaviours.

Very importantly, we had an online consultation with one of the Prosthetists from Open bionics, Kameron, about my suitability for a Hero arm. https://openbionics.com/our-story/ As you know, the Gofundme was set up to help with our house adaptations and possibly towards funding a Hero arm. David had been in touch with Liz and Sarah since early last year when all of this started and it was the first Bionic prosthetic he showed me. Kameron was wonderful and took time to find out what it was I was wanting from a Bionic arm, what the possibilities and limitations could be, and how it compared to the various other options we have been looking at. 

David and I both feel that we are at the point where we have to make a decision on where we go from here in terms of a Bionic limb. The NHS work very much to a strict model of having to become adept at one set of prosthetics ( the dreaded Hooks!) before you can be considered to move on to the next and they have told me that in their opinion, we are moving too fast. Whereas we have always believed that I should have the opportunity to learn and use multiple devices at the same time in order to use whichever suits the task at hand ( pardon the pun 😉) Ultimately it’s my decision and my responsibility to work hard to learn and use whichever devices I have. After weighing up all of the options and costs we have decided to contact the guys @openbionics  and arrange the initial appointments. If anyone out there has any experiences to suggest otherwise please let us know.

And finally ( sorry, these monthly updates are a bit lengthy😕).. I wanted to highlight to you why I’m interested in speaking to people about me, my sepsis experience and what it’s like to be a Quad amputee. This week David and I spent a few days away in York for my birthday. We’ve both been there many times and both know places that we like to visit. Only now do we appreciate how inaccessible it is for someone in a wheelchair, with approximately 90% ( rough, unverified data 🤔) of the independent shops and cafes we wanted to visit having at least one step up. At one of them, I sat outside the doorway in my wheelchair while David went in to price something for me. I was unaware, but a group gathered just inside the door and were debating what I was doing and was I okay.. They then waved David over, asked if I was with him and was I okay?…David couldn’t  help laughing as he suggested they turn to the left and ask me?

It was all done with the best of intention but all these well meaning people saw was the disability, not me as a person. It’s a very difficult thing to deal with as in nearly all cases it comes from a place of kindness. Now what I would much prefer was that people saw me in the way that the beautiful Lucie does below. I’m just Auntie Alli and my sticks, arms and legs are just me and more importantly, something else to play with 🙂

https://gofund.me/61b3bd47