Noah Alolan Variant: Wheels
Donation protected
I have h/cEDS (Ehlers-Danlos Syndrome), aka one of the variants where pretty much all my problems are "my body is made of crappy sad rubber and kinda falls apart sometimes." Because of the way that American insurance works, I have to pretty much care for and support all my own mobility needs.
I have been using a cane for the last three years, and prior to that, for three years as a teenager. As with most people with EDS (degenerative and untreatable as it is) I'm on a slope that is sort of vaguely labelled "at some point, you won't be able to walk any more." My own variant is that I can walk, and even sometimes, run, without much difficulty as long as I am either on a cane or crutches.
But standing?
Can't do that.
I can barely even stand in line long enough to, for example, order food at a restaurant. Certainly can't do it to wait for a window at the post office. Standing long enough to go to a museum is now impossible for me; I can't stand long enough to ride a train, or stand long enough to wait to be seated at a restaurant. It's pretty severely limited what I can do to where I will be certain I can have seating or can rent a wheelchair, and those places are few and far between.
For the past couple of years I've been putting off the necessity of buying a wheelchair, because they cost a lot. I really need to own my own—for one thing just so that I can travel easier—and I want to go to a convention this fall, which means I absolutely have to go ahead and get one.
I am, essentially, unemployed (I work contract for a university as an assistant to adjunct faculty which means I get paid, uh, zilch) and my husband is terribly underemployed, and I cost a great deal in health accommodations already, and we can barely make our rent. So for me, buying a chair? Is almost impossible. Given that we can't do so much as be certain every month we'll be able to afford every bill, we definitely don't have the cash to drop on a chair, and my family will not support such an expenditure. I was really lucky to find a chair used this week—a model that fits me, is lightweight, was on an ENORMOUS discount (significantly under half-price to one that's new!) and I grabbed it when I saw it, but we need help paying for it, and also for paying for some of the stuff I need to use it—bags, a better strap for me to put my cane on it, a cushion for my sciatica, traction gloves, and spoke covers are all pretty essential for my continued easiest use of it.
So simply put, the goal of this gofundme is: help me afford wheelchair + accoutrements! The total calculates out to, and receipts can be provided, for:
-- $250 (Breezy EC 4000 used at absurdly good price)
-- $35-50 (sciatica cushion, I can't provide a model of this yet as I need to discuss the best to get with my chiropractor)
-- $15 (wheelchair bag, potentially a little more if I buy a second one)
-- $15 (traction gloves)
-- $20 (cane holder, because despite being nominally collapsible, my cane refuses to fold)
-- $70-100 (for spoke guards)
This comes out to $450 or so, with extra wiggle room a) for if something ends up costing more because of model needs/health needs and to cover the funding fees.
I have been using a cane for the last three years, and prior to that, for three years as a teenager. As with most people with EDS (degenerative and untreatable as it is) I'm on a slope that is sort of vaguely labelled "at some point, you won't be able to walk any more." My own variant is that I can walk, and even sometimes, run, without much difficulty as long as I am either on a cane or crutches.
But standing?
Can't do that.
I can barely even stand in line long enough to, for example, order food at a restaurant. Certainly can't do it to wait for a window at the post office. Standing long enough to go to a museum is now impossible for me; I can't stand long enough to ride a train, or stand long enough to wait to be seated at a restaurant. It's pretty severely limited what I can do to where I will be certain I can have seating or can rent a wheelchair, and those places are few and far between.
For the past couple of years I've been putting off the necessity of buying a wheelchair, because they cost a lot. I really need to own my own—for one thing just so that I can travel easier—and I want to go to a convention this fall, which means I absolutely have to go ahead and get one.
I am, essentially, unemployed (I work contract for a university as an assistant to adjunct faculty which means I get paid, uh, zilch) and my husband is terribly underemployed, and I cost a great deal in health accommodations already, and we can barely make our rent. So for me, buying a chair? Is almost impossible. Given that we can't do so much as be certain every month we'll be able to afford every bill, we definitely don't have the cash to drop on a chair, and my family will not support such an expenditure. I was really lucky to find a chair used this week—a model that fits me, is lightweight, was on an ENORMOUS discount (significantly under half-price to one that's new!) and I grabbed it when I saw it, but we need help paying for it, and also for paying for some of the stuff I need to use it—bags, a better strap for me to put my cane on it, a cushion for my sciatica, traction gloves, and spoke covers are all pretty essential for my continued easiest use of it.
So simply put, the goal of this gofundme is: help me afford wheelchair + accoutrements! The total calculates out to, and receipts can be provided, for:
-- $250 (Breezy EC 4000 used at absurdly good price)
-- $35-50 (sciatica cushion, I can't provide a model of this yet as I need to discuss the best to get with my chiropractor)
-- $15 (wheelchair bag, potentially a little more if I buy a second one)
-- $15 (traction gloves)
-- $20 (cane holder, because despite being nominally collapsible, my cane refuses to fold)
-- $70-100 (for spoke guards)
This comes out to $450 or so, with extra wiggle room a) for if something ends up costing more because of model needs/health needs and to cover the funding fees.
Organizer
Noah Ben David
Organizer
Chicago, IL
