Help Kelsey Survive Disability

Hi, my name is Kelsey, and I really need your help. I have become physically disabled and am at risk of losing my housing if I cannot cover my medical costs. Please help me make it through. I'm so grateful for my community, and I will spend my whole life paying it forward. Here is my story.

The Reality I'm Facing:

I became severely physically disabled this year. I mostly try to keep this reality hidden, as if I’m in the closet about it. But to put it bluntly—my body is falling apart. I have lost all ability to work, to cook, to use my hands, to bike, hike, dance, run, or even jump—I’ve nearly forgotten what these activities feel like. My whole life, I was always a “fit” and active person. I grew up playing sports. For the first half of my 20s, I biked one hour every single day of my life. I used to hike every week. I used to dance my heart out—contra, swing, you name it. Disability snuck up on me and completely altered my life.

Now, I struggle to perform the basic physical tasks I need to keep myself alive. I can no longer cook meals for myself. I can’t chop vegetables or lift cast iron pans. I can't use scissors. I can’t write with a pen for very long. I can’t open jars or even most packages. “Can you open this for me? Can you reach this? Can you lift this?” I ask my housemates on rotation every single day of my life. I use multiple mobility aids to make it through each day. I put a great amount of daily effort into preserving the very limited mobility I still have left.

The official diagnosis is Hypermobile Ehler’s Danlos Syndrome, a connective tissue disorder that effects every system in my body. My collagen is defective and as a result, my joints are not held together properly, leading to frequent partial dislocations (subluxations)—typically in my ribs, shoulders, knees, ankles, and wrists. It is a miracle that I can still walk and type. I work to maintain this ability very carefully because it feels like all I have left. To be able to write, I need to wear thumb and wrist braces that provide enough support for typing. To walk, I need to wear the same compression leggings medically designed for hypermobile joints to prevent my knees from subluxating. I need to wear ankle sleeves daily to protect my ankles, braces when needed, and custom orthotics. All of these measures are helping me maintain my ability to walk and to write. To walk and to write—that’s mostly what my body can do these days.

I have no clue what my future holds anymore. My focus has been on surviving each day. Navigating this unexpected disability turned my life upside down. I lost my source of income and ability to work. I dried up all of the savings I once had as I supported myself while managing my health. As I sought medical care, I quickly discovered that no doctors on my insurance were knowledgeable about hEDS and I had to seek out specialists, often travelling long distances. I am now in a huge amount of debt from medical bills and costs of living while unable to work. I have been denied government disability assistance, and I have no family to lean on.

After this month, I will no longer be able to afford my rent and risk losing my housing. I never thought it would get to this point, so I never asked for help until now. Losing my housing is an extreme risk for me because I am not in contact with my family, and it is not safe for me to ever move in with them again. I need to continue living in my communal home, not just for all of the physical assistance and helping hands, but for the safety in numbers it provides to give me a sense of protection from my dangerous father, a serial child rapist who continues keeping tabs on me despite not having seen me in 14 years. The toll my father's violent rapes took on my body throughout childhood has definitely contributed to the severity of the disability I am now facing in adulthood. And the horror has not ended. Since being informed of his stalking behaviors one month ago, I have feared for my safety more than I have in years. Secure housing is crucial for me at this time. I need to protect my basic safety as I try to heal from the violence of my childhood and seek care my disability. I don’t know what I would do if I lost my housing.

I’m in a desperate position and I need help.

Here’s How You Can Help:

To keep my housing, pay off my medical debt, and survive with this disability for one more year, I will need to raise $42,000. This will cover:

With this support, I’ll be able to:

I know I’m a healer. I know I have medicine to share with the world. I just need to believe I’m worthy of healing myself, too. It’s easy for me to accept extreme pain as normal and inevitable. My early life set me up to become very skilled at keeping my pain secret, and that’s what I’ve done for the last year with my disability. The conditions of violence that were normalized in my childhood set me up to withstand severe, life-threatening conditions in adulthood while minimizing the danger, keeping the impact a secret, and not asking for the help I needed. As a child, I learned how to simply pretend the danger wasn’t happening—because that’s the only thing I could do. But now, my body is falling apart. My safety is on the line. I need to finally ask for help. Please chip in with any amount you can.

I will spend my whole life paying it forward. I feel an incredible sense of purpose, and I want to devote my life to being of service. I am committed to using the wisdom I’ve gained from my experiences of abuse, incest, and disability to help bring strength to other survivors in the future. I dream of doing future research on the connections between childhood sexual abuse and developing hEDS. But first, I need your help to make it through this very uncertain and terrifying time. I need to secure my housing to keep a safe home base this year. I need to get the care I need to prevent my disability from getting worse. My whole life, I was forced to survive by leaving my body. Now, my survival depends on my ability to return home to myself, to finally give my body the care it needs.

If you've ever been a part of my journey, if you’ve ever read my writing, if you’ve ever felt inspired by the truth I’ve shared, and if you ever wished you could help me carry these burdens—I need you now. Your generosity will help me survive, keep my housing, work to regain my health, and continue to advocate for other survivors.

Thank you. Your support means the world to me.

If you want to help spread the word, please share this link with your family, friends, community, and colleagues. My venmo is @zazanis if you want to bypass the GoFundMe fees. Thank you so much for your support.