Hello, I’m Hex, and this GoFundMe has probably been hosted by my partner CJ. Three years ago, I started having to use a power wheelchair for a progressive disability. And, in a frankly stunning turn of events, that disability has had the audacity to progress. So, I roll to you, hat in hand, to tell you the tale of how a young cripple is trying to move into an apartment that will fully accommodate a complex rehab power chair.

The quick and dirty breakdown up front for those of you who don’t want the story and just want to know where the money’s going:

$900 – Deposit to secure the new apartment / Admin and move in fees for the complex

$1000 – Additional money needed to move in. In practice, this winds up being the chunk of money for the end of August’s rent, since we need to move in the last half of the month and cannot afford to absorb that extra rent

$600 – Rough estimate of moving costs. The goal is to rent a u-haul and have people help us move as we do have more than just a single day to move. However, given that I’m unable to do much of anything in the way of lifting or carrying and CJ is also working with new chronic health issues, this number may go up.

$1000- Emergencies and other unexpected costs such as adaptive equipment and medical costs

Additional costs added are for any unexpected emergencies that pop up and to give us a little bit of cushion if we’re fortunate enough to meet our goal.

Okay, so that’s the quick and dirty out of the way. Now, what’s going on and why do we need to move?

The first part is simple. We’ve lived at our current apartment for long enough that we have been priced out. We’re in a position where they are leasing apartments to new tenants at over $100 less per month than they’re renewing our apartment for, and they are not willing to come down on our renewal rate. This, combined with the fact that frankly our apartment is not worth what they’re charging, there’s not really a choice on moving.

Beyond that, however, there’s also a large looming shadow over our lives and that is my health.

When last I asked for help, I’d just been diagnosed with Scheuermann's Disease and Hypermobile Ehlers Danlos Syndrome. Three years is a long time, though, and unfortunately things did not get better. Both of these conditions, but especially the Scheuermann's, are progressive diseases. And since the main point of degeneration is my spine, there’s a lot of room for things to go wrong.

And go wrong they have! [Jeb Bush voice] Please laugh.

Now, the EDS classification has changed to Kyphoscholiotic EDS based on genetic markers and a story too long to put in here. That, mixed with Scheuermann's phenomenon in my spine, have now led to two spinal cord injuries. They are non-traumatic, meaning right now they are pretty mild. However, it’s a red flag and a warning sign because they will only get worse.

So we’re left needing to find an apartment where I can, to put it bluntly, be prepared for things to get worse. In the past six months, I’ve gone from being able to build up strength in my core and legs to try and walk again unassisted to now, being told I need to use my chair as much as possible to avoid any falls, because any fall could be the one that fully cuts off cord function at that level. And as both injuries are in the thoracic spine, that could be a life threatening situation.

Aside from the very obvious effects this has on my physical health, this has also been a really hard thing for us to deal with mentally. CJ is my primary caregiver. He’s also the primary breadwinner in the family, and disabled himself. (I passed the baton of hEDS to him when I got my kEDS markers, go figure!) Because I cannot independently do things in my chair in our apartment because of it’s size and layout, it’s an intense point of anxiety for him. He finds himself unable to do anything for himself, and any time he leaves the house there’s a feeling of dread looming overhead because well, what could happen while he’s gone?

Our new apartment, which we’ve toured and applied for, has a lot of amazing features that would greatly improve this situation. No, there’s nothing really in the way of amenities save for some outdoor space and charcoal grills, but the elevator is huge. The apartment itself is larger, with a kitchen large enough to use my wheelchair in. The layout of the apartment means that I can get my wheelchair in every room easily, and we’ve already tried this while touring the apartment. There’s a better system for climate control, which we’re hopeful will also help with the heat sensitivity and seizures I’ve been experiencing. (Did I have epilepsy when last we spoke, go fund of the me? I’m actually not sure, like I said these past few years have been rough.)

Long story short, it will give me independence that I desperately need. It will allow me to continue to do what I can for as long as I can, and because of how open the layout is and the size of things like the kitchen and bathroom, it will also allow us to be prepared for the inevitable. Because yes, we hope and we pray that things will not get worse. And also, there’s a large and highly trained team of specialists at very fancy research hospitals telling us to get ready. So ready we get.

With all this being said, we do need your help. My social security check mixed with CJ’s income is not enough to secure a new apartment anywhere in the city, and his line of work requires him to live in the city. Go figure. We started reaching out to the housing authority in February to get help, but the wait list for wheelchair accessible units is quite literally 10-25+ years so I’m not sure how quickly we will be able to do anything with that. Every social service we’ve been referred to has told us they cannot help us because I am either too young, too old, or there’s no available apartments until a new building is built and the units are assigned. There is just quite frankly no available support for young disabled people.

This is the point where I don’t quite know how to end this, because that’s blunt and kind of a bummer. We really tried everything to not need another fundraiser, and we’re working as hard as possible to find other ways to supplement and offset the cost. CJ and I are incredibly grateful for any support and shares.