Help Mariah get a wheelchair!

I’m going to be honest in my first sentence- I have been mulling over for weeks how to even write something like this.

In September, I started having seizures. It is now June, and while we’ve ruled things out… we are not any closer to answers. I have gone from having one instance a week to multiple instances in several hours. I stop breathing, and when I come to, I go straight into asthma attacks. My heart rate has gone from 115 to 52 in two beats during an episode. On top of the seizures worsening, I have also started to faint multiple times a week. I don’t leave my home except for appointments and emergencies. I can barely leave my house otherwise because seizures get triggered on car rides, either headlights or light through the trees/buildings. It is getting to the point that most days, I can’t:

My husband has had to become my full time caregiver for the time being. He makes sure if I want to try to do something within my means that I can be safe, or if I need the help he is always there. My other partner has become more of a breadwinner than I would ever have expected him to be. They both assist me through every single episode they witness. They hold me up when I collapse trying to make it to a chair so I don’t hit my head. They massage my muscles that won’t loosen after an episode. They help me take care of my basic needs like taking a shower and making my meals. We have family members financially supporting us through this as well that shouldn’t have to be. I am grateful that our life situation is stable, though not sustainable for the long term. I am also beginning to accrue medical debt at this point. I can’t tell you how many things we have going on that we don’t talk about to do everything we can to stay afloat for as long as possible. But I essentially went from being independent and “normal” to completely dependent on the people around me in no time at all. Things that were well within my abilities in the beginning, even something simple like cleaning my house, I can no longer keep up with.

My quality of life is severely diminished from not being able to do things that bring me joy. If you know me at all you know I love to hike, foster neonatal kittens, go to zoos and museums, experience new places and foods, go see movies, try a new craft I haven’t yet, sculpt, help people with their pets, go to concerts or musicals… I’ve lost my ability to enjoy those things physically. Not even that, but normal routine things that people typically take for granted. I can no longer drive, use sharp objects, use a stepstool, or walk without a mobility aid in case I fall. No matter what diagnosis I get in the future, this is something my medical team does not anticipate is just going to “get better quickly”. I am being referred to more doctors every month. Even though I was still able to work in the beginning, I have not been able to work for months. Not only am I the most physically vulnerable I’ve ever been, but my mental health is suffering as well. I am becoming AFRAID to leave my house, even for appointments, for fear of seizing in public without being the safest I possibly could. The anxiety over that is crippling in ways I couldn’t anticipate.

This is not a fundraiser asking for handouts. My living situation is stable. Our bills are paid (with help), we have food in our bellies, and our pet’s care has stayed exactly the same (with help I am also beyond grateful for).

Our biggest goal right now is to help me get some of my independence back. We have been working with our pit bull, Koni, to be trained as a service dog. While he is great at home with his tasks, the rest of his training is going to take time because he is a dog who wants to be friends with everyone. I am also not in a safe enough place to be training him in public, even with assistance from my part time dog training husband.

Canes and walkers are great for me around the house, but I do not feel safe going out in public with them because they don’t feel like safe enough options. Accommodating and adapting to my current circumstances has been nothing short of a challenge. We have been doing a lot of research and finally found a wheelchair that is affordable but also accessible for my body. (Not every wheelchair is built the same, and this one is CUSTOM!) Not only that, but we found glasses specifically designed to limit seizure activity from visual triggers. While we are stable, these costs are outside of our budget. In an effort to combat my mental health decline, I have decided to be the most vulnerable I ever have been and ask the community around me for help trying to improve my quality of life. I just want to try to live a little bit of my life instead of remaining stuck. It’s just the little things… like being able to go to the grocery store, walk (wheel?) the block with the dogs, read a book on my couch, watch a movie with my guys, or be able to watch the sun rise sitting on the patio instead of through a curtain.

This is something I wished I didn’t need to do. I know so many people are struggling right now. But I am so scared and I need some hope that I can start trying to enjoy the life I have. If I continue to lose the things that bring me joy… I am truly worried about what that means for me. I don’t know where life goes from here for my personal goals and dreams. I am losing hope. I am already struggling to accept the support of the people that have been supporting me through this. My family and primary support system has been so graceful in not only handling the symptoms, but the fallout of it all. I am hoping to be able to raise just enough for the wheelchair and the glasses. I’m even going to attach screenshots of the finalized prices including shipping so you know EXACTLY what you are donating towards. Anything past the goal will be used to pay off the debt we’ve been accruing since this journey started. Every little bit helps. Even if you are not able to donate, if you could share, I would be thankful. If you’ve read this whole thing, I appreciate you more than you even know.

(I was actually having a seizure here)