#MEAwareness: Guest Post “Send My Apologies”

dSavannah note: I’d like to introduce y’all to my friend Alice Ballinger, a #ChronicIllnessWarrior and poet, who publishes her work on Facebook on her Green Goat Poetry page, and who is raising funds for a desperately needed wheelchair. (Also, please note that in my state of tiredness, eyes burning, back hurting, and anxiety, I published this post before it was ready, so subscribers have received an unfinished post in their email! I changed the status to draft, but I have no idea if that means it will email it again when I hit publish on purpose… Oh botheration… And I think I messed it up even more, so I completely deleted that post and created this one… So if you try to comment on that one, you’ll just get an error. Sorry!)

It’s Monday the 15th, which means it’s time to publish this post. However, I am having a very hard time writing this intro, even though I’ve been trying to work on this for weeks! I want y’all to understand how lovely and special Alice is, and what a dear person she is, but words are failing me. So, here’s what I have:

The Hope Plant on 07.09.2019. The baby leaf unfurling looks like a heart to me.

Alice and I initially connected three years ago on Facebook over our shared love of Terry Pratchett‘s Discworld, the fabulous book series about a world not unlike our own, only it is a flat planet balanced on the backs of four elephants, and they perch on a world-turtle, The Great A’Tuin. (Sir Terry being one of my Very Favorite Authors, who of course I’ve written about before on this blog.)

Then, turns out that Alice, too, is chronically ill and disabled. I can thank Alice for helping me figure out some of my diagnoses – because we share so many symptoms! If it weren’t for her, I wouldn’t have gotten diagnosed with hypermobility syndrome, because I wouldn’t have known that the sum of some of my symptoms equaled a subset of Ehlers-Danlos syndrome, one of the diseases she has (only hers is much worse than mine).

Although the #MillionsMissing hashtag was coined by #MEAction, and is a big part of their / our advocacy, Alice pointed out in this poem that not just people with Myalgic Encephalomyelitis (MEcfs) are missing from having vibrant lives: many other people who have disabilities, both visible and invisible, are hidden from the world.

Sadly, Alice is one of the missing people.

I am sharing her poem for a couple reasons. One, it ties in with my own advocacy around chronic illness, and two, she wrote it for me. (I’ve written poems for lots of people, but I don’t think anyone has written one for me.) Obviously, I feel it should be shared with the world, as it perfectly captures the loneliness and isolation felt by many of us who are ill, and many of the barriers we face to being part of the world.

Most importantly, tho, I want to help Alice. She desperately needs a wheelchair. Although she was told eight years ago that she should probably get a wheelchair, she stubbornly tried to retain her mobility by using a rollator instead.

And of course, using a rollator (which, for those who don’t know, is like a walker, but with wheels and a seat, for when you need to rest, and is the type of mobility aid I currently use) has damaged her shoulder, and made her hips and back worse!

She has set up a gofundme page to raise money to purchase an electric wheelchair that will suit her needs and allow her to go to the park, around town, to her doctor’s offices, the store, and wherever else she wants or needs to go. She needs to raise £1,999 (or $2,500 US!) to get a power wheelchair that will be durable and usable. So far, she has £810, or approximately 40%.

She’s also sold some of her belongings at a car boot sale, and is doing everything else she can to raise the funds.

So, if you can, please donate and help her, and if you can’t, please share her gofundme page and this post with her poem. (And I hope I’ve done Alice and her poem justice.)

Send my apologies

Send my apologies
It’s too far for me
Can’t use the stair
I’ve no money anyway
It’s not fair