I’m singing along with sopranos, banjos, and fiddles that resound from my tiny speaker.
A deer peeks her massive ears around a pine tree to get a better listen; I gasp. Her delicate hooves inch closer toward the melody, with her ears, perked to pick up every note. I try to keep harmonizing, but as the doe draws nearer to our small deck with big eyes fixed on me, tears flood my own big eyes and my voice cracks.
The deer doesn’t care that I’ve been diagnosed with spina bifida occulta, a congenital form of paralysis. My spine never finished forming, so there’s a gap in vertebrae where there should be bone. The deer doesn't know that I have a genetic, degenerative, hypermobility tissue connectivity disorder that affects every joint and bodily system. She pays no mind that by my teenage years, after years of migraines, motion sickness, calluses, illnesses, crutches, and surgeries, I was diagnosed with a rare form of psoriasis, an autoimmune condition that can cause arthritis and other issues.
The birds don’t care either: the house finches with their melodic songs or the hummingbirds with their midair magic. The trees don’t really seem to mind that a combination of conditions led to many more. They keep swooshing and swaying with breezes as their pollen is scattered with their needles. The lizards keep stopping to smile or sit by my side, so I don’t think my disabilities bother them. If only the peace and comfort they bring meant that my entire being didn’t hurt, or that I could finally hold a pencil correctly, or that my feet didn’t tingle.
Although I see a therapist, I also sing to deer, write about ancestors, and listen to guided meditations and hypnosis. This is my journey; others don’t know exactly what the path is like and can’t necessarily diagnose me with their eyes. Sometimes, people judge, but their understanding, compassion, love, and support are what helps me along.
Lately, I’ve been working through denial and fear toward acceptance and a sense of feeling free to be me. Raising awareness about some of my rare diseases and asking for help is about as uncomfortable as being naked in front of a crowd, but I had to arrive in my own body and my own reality while trying not to worry about whether others would judge me.
As I’ve been able to get out less and less, I’ve finally started asking physicians about mobility assistance devices. I wondered why I was afraid of having help to get out and about again? I imagined going to a museum and being able to stay in one place for more than a moment and going out to eat without the restaurant chair being too uncomfortable for me. So, when I asked my first doctor about a wheelchair, and he immediately dismissed my request without knowing my day-to-day life, I spoke up. I told him my reality. He told me to talk to another doctor, but that’s okay. At an upcoming appointment, I will take a deep breath and empower myself to have more freedom.
It’s also important to recognize the amazing abilities I do have! After all, I managed to write a highly unique book about my ancestors that nobody else could have written. Every poem I pen reminds me that there are wells of capabilities left to be explored. Maybe my disabilities open doors that I would have never even seen as a little girl.
Despite grieving the loss of my mom and many of my previous abilities as I adapt to my new and changing health conditions, I still try to find joy, love, and comfort amidst life as it is now. This is the only life I can wake up to in the morning, in the only body I know. Denying my reality will only dig me deeper into despair. Radical acceptance is needed to move forward. And love is the only way, even if that love sometimes arrives in the form of fascinated ears on a wild deer. Like them, I need to focus on living.
As a former resident blogger for the town of Camp Verde, Jessica Lynn MacLean wrote articles for the city of Sedona, as well as several publications. She’s worked on communications projects for many organizations and has published her first book, Arizona Rain. Jessica holds a Summa Cum Laude BA from ASU in Human Communication and Mass Communications.