I mark March 2018 as the date when I became officially disabled. Two major events happened: I received a disability parking placard, and I left my career as a teacher and started receiving disability benefits.
My neurologist filled out the paperwork required by the state of Colorado, and I mailed it in. A couple weeks later, two blue signs showed up in the mail that can hang from the rearview mirror identifying me as disabled.
When I finally reached the point of not being able to teach, my neurologist and the human resources department in my school district helped me fill out the necessary paperwork to begin receiving disability benefits. I stopped working on March 5, 2018.
As an educator, I have experience with disability. At least a quarter of all of my students have had disabilities including ADHD, autism, and microcephaly.
People in my family have disabilities too. I have witnessed the struggles that people with disabilities undergo. The stress, the difficulties, the misunderstandings, the stigma.
There is nothing easy about being a person with a disability, but welcoming the label of “disabled” did not take much effort for me at first. I needed the label, and not just for parking.
Receiving the designation of “disabled” validated my experience with erythromelalgia, a rare disease that causes chronic pain in my legs and feet. Each day for two years the pain intensified, causing me to be unable to stand or sit without extreme discomfort.
Since becoming “officially disabled,” I have wrestled with the deep meaning of disability — especially for my particular disability.
1. Clock Watching
There is no cure for erythromelalgia, so I take medicine at least three times each day. Much of my time involves looking at the clock to ensure I take my meds promptly. I feel like I am always waiting for the next time when I pop open my pill organizer as I watch my life pass away dose by dose.
2. Mental Health
My disability has profoundly altered my emotional wellbeing. The relentless pain and change in lifestyle has caused depression and anxiety. Along with my pain meds, I take medication for clinical depression and anxiety. These help, but they don’t solve the root cause. For me, physical pain brings about emotional pain.
3. Loneliness
I spend most of my days alone. My family arrives home in the evening, but even then they have their things to attend to. Homework, dinner, housework, and so on. No one has much time to just sit and chat. My friends and former colleagues work, and they check in with me less and less as time passes. A friend encouraged me to start a social media account to meet other people with disabilities. I have done that, and I have made friends from around the world. This helps alleviate my isolation.
4. Family Life
My disability often prevents me from participating in family events. My oldest attends college two hours away, and I have not been able to visit her. My middle daughter will start college in the fall, and I doubt that I will be able to visit her. Meanwhile I have missed some of her concerts — -including her first professional gig. I have also missed some of my son’s plays. This contributes to my depression Nevertheless, I have looked for a bright side. My disability has helped me appreciate the times I can spend with my family.
5. Community
I struggle with a lack of social interaction. My professional community brought me a sense of belonging, and my faith community gave me a way to experience a wider connection. Now, I do not work, and I am unable to participate in church life. This creates a profound sense of loss. My social media friends have helped fill this void. They graciously listen to me complain about my pain and aggravation and have provided encouragement that I have desperately needed.
6. Weight
My weight has fluctuated, and I now weigh more than I ever have. The chronic pain makes any kind of movement problematic, so I am unable to life weights and run like I used to. All of this worries me that I will develop other health issues that accompany a sedentary life, such as diabetes. I have not yet found a way to resolve this issue.
7. Body Image
Along with my weight, my body looks different that it used to. The disease turns my legs, feet, ears, and hands red and purple. That’s awkward enough, but I lay on the couch almost all day. I hate (yes, hate) how this makes me look to my family, the few friends that visit, and myself.
8. Mobility
Sometimes I need help standing, and I use a cane when I walk. Recently, I have gotten a walker, and I will soon need a wheelchair. These mobility aids remind me and communicate to the world that I am disabled.
9. Imposition on Others
No one has ever grumbled, but I often feel that my needs impose on my family and friends. I feel like I am always asking people to do or get something for me. Making plans with friends is always sketchy because I might have to change them at the last minute.
10. Finances
My disability payments are about half of my teacher salary, and my expenses have increased. High insurance deductibles, medicine, doctors’ visits, and tests all cost money. My lowered income and increased expenses create pressure for my family — two children in college, one on the way, a leaky roof needs fixed, and the engine of my car needed replaced. I am not sure why society believe disabled people should be poor.
11. Justify Myself
I constantly feel compelled to justify myself and my condition. “I truly am unable to work. My pain really has spiked. I wish I could do yardwork. Yes, I actually do need this cane. Sorry, but I cannot attend the concert. I apologize, but I need to cancel our lunch plans. I have tried that remedy already.” Even when people have been understanding, I feel this pressure. I even keep a daily log to track my pain and any potential triggers. When I look back at it, I wonder how anyone could function as well as I have.
12. Finding a Purpose
I am not the same person since becoming disabled. I have changed, and what I do has changed. No longer do I wake up at 5:00 to drink coffee and review lesson plans. I have no students to assess or colleagues to confer with. I have tutored one student, and I try to write each day. But I do not have a sense that I am contributing to anything. This might be the most difficult part of my disability, but I find solace in the fact that many people do not discover (or create) their purpose until later in life.
My disability is unique to me, and I am responding to it according to my particular make-up and circumstances. Barring an unseen medical advancement, I know that I will remain disabled for the rest of my life. However, the way I respond to it will change and has already changed.
My anxiety levels have lowered as I am learning how to accept my “new” body. But my identity as a disabled person is my real issue. Who am I now? What do I do? How do I relate to my loved ones and the world around me?
I keep looking for answers, but there are not any out there waiting to be applied. Instead, I keep making my way, one painful step at a time.
