Get Bekah Mobile!

Hey friends! My name is Rebekah Hair-Stewart.

I am almost 34. I love the outdoors, nature, live music, shopping, and anything weird and wild. I also have Psoriatic Arthritis, a rheumatic autoimmune disease that causes chronic pain and mobility issues. I am raising money so that I can regain some of the independence I have lost since my diagnosis, and preserve as much of my mobility as possible.

If you didn’t know me before my diagnosis, then you don’t know what I’ve lost in the past 4 years. I watch nature documentaries instead of going outside. I do gentle stretches for half an hour instead of following an active and challenging yoga routine. I work in fundraising now, instead of managing live music events. I can't buy concert tickets at venues that don’t offer ADA seating. I can't even volunteer to pick things up, or carry something heavy, or bend over, or walk long distances. My world seems to keep shrinking every day, and my disease takes up more and more room every day.

Access to mobility, to community, and to a healthy, full life is what motivates BE, the company that makes the Alinker Mobility Aid (pictured). However, for many people living with a disability or chronic illness, finances can be as much of a barrier to community as their illness or injury itself. Having to pay for additional expenses like mobility aids, home care, and medication forces many people into medical poverty.

It’s time for me to accept what I can’t change, and change what I can. It’s time to create safety in my home, and safety in the world outside.

I’m asking you to help me make my world a little more accessible so that I can approach new opportunities and experiences with confidence and joy.

Thank you,

Bekah

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My Disease and Diagnosis:

Psoriatic arthritis (PsA) impacts more than 8 million Americans, and there is no cure. The exact cause of PsA is not yet known, though my family history certainly plays a role. My father suffered for years from symptoms that were all assigned to post-polio syndrome. However, through my own research, I’ve learned that many of my father’s symptoms were indicative of autoimmune disease. Furthermore, three more of my family members from my generation have come forward with an autoimmune disease diagnosis since 2018.

I was diagnosed in 2019 shortly after my father suddenly passed away. After his death, I suddenly seemed to lose control of my body. I was having unmanageable gout flares despite following a rigid diet and taking prescription medication. My ribs were constantly throbbing. Finally, I woke up one day with pain in my lower back that was so uncomfortable and persistent, I started questioning whether or not it was possible to get gout in your pelvic bones.

Sometimes I experience pain so intense I am left bedridden for days at a time. Other times I wake up feeling fine, only to be hit with overwhelming fatigue and pain later in the day. Sometimes (not very often) I have a good day and can manage to get out of the house for a few hours, but find myself completely wiped out at the end of the day, unable to move a muscle. More than once, I’ve had to cut my plans short, because I just didn’t have the ability to keep going.

Living with this kind of pain and fatigue has taught me so much. I value my health and comfort over everything now. I listen to my body more. And I’m learning to not blame myself when my symptoms get out of control. But I can tell I’m losing more mobility and function every year. The Alinker can help preserve and maintain my mobility, without putting undue stress on my body. It was quite literally built for people like me, with ambulatory disabilities.

The Alinker:

The Alinker is a non-motorized walking-bike without pedals. With an adjustable saddle and handlebars, it is custom designed to challenge society's assumptions about disability. This device is designed to be a walk assist for the differently abled to help them keep moving. Its innovative design allows people to get out of their house and take longer, less labored walks.

Most medical devices are a technical solution for a body with a problem, it emphasizes the "problem". But, we are humans, and we have a body. The body does not determine who we are.