Letting Go of Identity: Stories of Transformation
REFLECTION Rachel Carter, Intern Minister
Some of you may not know me. I’m the new intern minister, Rachel Carter and I am a person with disabilities. It’s not apparent. I’m privileged that I can often be perceived as an able bodied person but behind this face of a resilient advocate is a person with five disabilities, four that impact me physically. I wasn’t always a person with disabilities. I joined the Army in 2004 and when I was discharged a few years later, I was diagnosed with Post-Traumatic Stress due to military sexual trauma. At the time, I thought I understood some of the struggles people with disabilities face. Although Post-Traumatic Stress was added to the Diagnostic and Statistical Manual of Mental Disorders in 1980, it was still considered a condition only people who have experienced combat could have and quite frankly, only males. Trying to receive services even with a 100 percent service connected disability rating was difficult because I never deployed. Sometimes it felt my service didn’t matter but as I learned about the struggles of others just like me, I discovered the need for advocates. I began speaking out and discovered the power of my voice.
Eight years later, I was newly divorced and discovering a love for the outdoors. I was hiking or walking 3-10 miles a day, often starting down by the Mississippi River at Riverside Park when I lived in La Crosse, walking to and along the marsh at Myrick Park and then up the bluffs at Hixon and back. Sometimes I’d go even further. My only restraints were how much time I had before I needed to pick up my children and how much water I should drink to so I could make it to the next port a potty.
In 2015, I got shingles and although I only had a small rash on my spine, nothing like the huge horror stories you see on the internet or from other people, it was enough to cause permanent damage to my autonomic system. My body quickly couldn’t regulate my blood pressure, heart rate, or body temperature. It suddenly meant no more hiking, no more chores around the house, no more helping my son tie his shoes or running around with the kids outside. I was dizzy all the time. If I tried to do too much even like a few loads of laundry, I’d wake up the next morning and immediately have a complex faint. For the first year, I was using a walker or wheelchair every day and relying on my now husband, for a lot of things-like cooking food, doing housework and helping with the kids. Along with the Dysautonomia or dysfunction of the autonomic system and Postural Orthostatic Tachycardia Syndrome or POTS that was the result of the shingles, it was discovered I also had Ehlers-Danlos Syndrome, a hereditary tissue connectivity disorder that we now know my youngest daughter also has. I’ve also since been diagnosed with fibromyalgia.
There’s a dark place full of anger, frustration, depression, sadness, shame, feelings of burden, guilt, and grief, that can lure and trap a person who is dealing with a difficult diagnosis. Sometimes a person can pass through this place easily or avoid it all together with the support of family and friends and access to adequate health care but some find themselves lost in that dark place regardless. Maybe it is because they struggle to get a diagnosis for their symptoms or in my case, they refuse to let go of who they were before. For the first year and a half, I was stuck in that dark place and it was really hard to get out. I had met my husband and daughter. We met over our love for the outdoors and the worst of my conditions developed after they moved in. I felt a lot of guilt and burden even though my husband never complained about all my appointments, my inability to hike or walk far, being outside too long or having to push me in a wheelchair but his lack of complaints didn’t matter. I wanted to be that person I was before and who I had wanted to be, a life without physical restrictions and full independence, despite what the doctors kept telling me. I was obsessed with trying to find out ways to be fully independent and when my attempts weren’t panning out, I was back in that dark hole. Finally, I realized that I was wasting my life on something that wasn’t going to happen. I grieved the person I was and the life I thought I was going to live and then I started paying attention to what was too much activity and what I could do. I figured out what treatments I needed to able to live as full of a life as I could and I fought hard for it. I have a high salt diet of 10,000 mg a day which I’ll point out is not easy to get through food even when you eat a ton of ramen, chicken broth, and burgers cooked with salt, salted after they are cooked, and then going in your mouth. Now I have a chest port to help manage my POTS and Dysautonomia through saline IV treatments at home. I accepted the fact that I wouldn’t be able to hike or walk 3-10 miles whenever I wanted to but I could hike 3 miles on a cool day with proper precautions. I also found a passion for canoeing which is much easier on my body.
I’ve experienced and learned much as a person with disabilities.
When your life changes significantly, it tests friendships and even family relationships. However, it also deepened my relationship with my husband and showed me how deserving and worthy of love I am even when I felt broken, like a burden, and undeserving of love and a committed relationship.
My sudden restrictions and conditions opened my eyes to how really sweet my children are and how they can melt my problems away unknowingly with kind or funny words, unlimited kisses, snuggles and hugs, and doing extra chores without question. My youngest, who is 6, recently asked for special time with me. I thought she was going to ask to watch TV or a lot of Taylor Swift music videos on youtube or go into town but instead, she asked if we could go lie in bed and have conversations who knew a 6 year old would want to talk about what I was doing with my internship and would want to learn about Quakerism.
People will question your ability to go to school, pursue your dreams, buy a house, and even parent but my disabilities have taught me how resilient I am and what I am capable of, no matter the odds.
I’ve also learned about the kindness of strangers. When you leave a store in tears because a store worker helped you without question. But also the ignorance of strangers when they are hesitant and reluctant to help you because you look like you can help yourself or when you use your walker when at an expo with your family and you realize that someone put their food trash in your walker when you weren’t looking.
The joy I have seeing the reaction in elementary students when I tell them I don’t sweat. It’s like I have a super power. No really, you should see their faces.
When people around me say that I look like a vampire hunter off of Buffy the Vampire Slayer when I wear my knee braces. I can dig it.
It has also taught me the importance about person first language. I never paid much attention to “person with disabilities” versus “disabled person” or using the term “handicap” but now as a person with multiple disabilities, I see just how important it is to recognize the significance of putting the person first. We label everything. We label ourselves, we put labels on others. We also define ourselves and others based on what we experience, what we see on television, what we read about in newspapers, and what we were taught growing up. I am still learning how to talk about myself. My husband started saying disability tag and disability space instead of “handicap”. I didn’t realize that in some ways, I was still using poor language when it came myself, even if it is something as simple as a parking tag and space.
My long-term goal in ministry is to help all religious spaces be more accessible and inclusive to people with disabilities. I’ve found that people with disabilities often face many challenges when it comes to accessing a spiritual community. Maybe it is getting to the church, struggling to get involved even though they want to, not feeling welcomed, or parts of the building and service aren’t accessible. All of us should be able to be part of a religious community if one desires to be and I want to help make that happen.
This journey has tested me in many ways. For a while, I struggled with the idea of being a person with disabilities because of others’ perceptions but also how I perceived myself but now it is an identity that I claim proudly. I still find that people including others with disabilities and people with same conditions, try to define my conditions or experiences, or try to speak for me. It’s frustrating but I see it as an opportunity to educate people or speak up instead of a moment to doubt myself or be silent.
It has also shown me how it to be humble and ask for help as well as how to say no and yes even when my voice is shaky. It is an honor to be one of many voices for the disability community, not just speaking out and advocating but also lifting other voices up and empowering others.