What I have learned most in my health journey, academic career, and creative projects is that the stories we tell in the communities we share is what makes the most impact on many outcomes. Narratives and community-based support can promote resiliency and growth, allowing us to feel strength in ourselves. In telling my story and sharing resources, I hope to help others find whatever they need in their journey. A desire for independence is not in opposition with the appreciation of community; to be free of influence, we are genuinely ourselves. Indepenchant is resilience.
My dive into digital and fiber art began with my development of pain and other responses to parts of my environment, particularly volatile organic compounds (VOCs). When I was young, I painted with acrylics and watercolors, accruing canvases and papers that overflowed my closet. I loved my art classes in elementary and middle school, and found myself learning to use chalk and oil pastels at a benched easel.
When I realized that the mediums I worked with caused unbearable pain, finding embroidery brought relief. Initially inspired by the modern take as seen on much of social media, it allowed me to get creative again. As I built up a theme of hands and typography, digital art allowed me to bring my thoughts into the world in a more efficient and extensive way. I know I am always going to be creating, and am always going to want to give support.
My friends like to say my catch phrase is “I can’t eat that.” The list is so long that I’ve made a spreadsheet with columns of Can’t, Can Sometimes, and Can Eat But Then I Max Out and It’s Bad to track what that all covers. A fun party trick that bartenders have used to freak out their chefs, the spreadsheet represents the fluctuating and complicated life that I have learned to live over the past 10 years. It’s taken years of trial and error to build it up, and thank god I went through it.
Part of me is reluctant in telling this story, as I don’t want my life on display for others to respond with their “would have’s” and their “try agains!” I am settled in the slow pace my odyssey has adopted, and am learning to admire how far I have come. I know hearing others’ stories has helped me believe that there is a way in which I can live by my own terms, and that is truly all I want to do. There are many more nuances and events than those I am disclosing, and maybe some day in the future I’ll discuss them in more detail.
To connect with Ally online, visit https://indepenchant.com/ or follow her at https://www.instagram.com/indepenchant/. You can also see the templates she designed for Chronic Illness Hotline here.
When I was 7 years old, I asked my mom why one of my best friends was diagnosed with type one diabetes. She told me it was because he didn’t eat enough vegetables. The following year, I was diagnosed with type 1 diabetes on September 12, 2005. Lucky for me, there was a community of type 1’s that we were immediately and warmly welcomed into that showed me that I am not broken, just a little more like my friend. It was easy to adjust to this new life, although the low blood sugars were absolutely terrifying to experience in the middle of a playground. I had the privilege of attending the Diabetes Youth Families’ Bearskin Meadow Camp in Kings Canyon National Park before my diagnosis had its first birthday, and served as a counselor after 10 years as a camper.
While that diagnostic odyssey was relatively short and I spent quite some time in a coasting honeymoon phase of low insulin basal rates, a whole new can of worms opened up a few years later. As an avid equestrian, I subjected my legs to some weird squatting positions for hours on end. The knee pain that I began to experience in seventh grade seemed like a product of puberty and turning into a rickety old lady as a tween from this hobby. What we discovered instead was that these were no ordinary growing pains or Osgood-Schlatter disease. Well, actually, we pretty much discovered nothing.
My club volleyball career was cut short because I couldn’t wear both my kneepads and the knee braces I needed to keep myself walking. I made it most of my way through my freshman year of high school in one piece, until I contracted a severe viral infection the summer after. By sophomore year, I was unable to walk without a Velcro exoskeleton of braces around my ankles, knees, wrists, and lower back, and wished for support around my elbows and hips as well. I once attempted to dye part of my hair blonde and woke up two nights in a row, feeling like my body was on fire, wanting to run and scream but too terrified to move. I was experiencing dizziness and vertigo, heart palpitations, migraines, and bouts of extreme and sudden fatigue on a regular basis.
And so began my diagnostic odyssey.
I began my bouncing journey between vinyl clinic chairs at my pediatrician’s office. I vividly remember looking past her head and over at my mom, in the same way that I looked at my mom the day I was diagnosed with type 1 when I had ten vials of blood drawn out of my scrawny 8 year old arm. I watched her cover her mouth and cry quietly. She had no idea the amount of pain I was in, as I pointed to each of my limbs and explained how often and how deeply I ached.
The first thing I was told was to stop riding horses, and after 10 years of riding and it being the only form of exercise I could handle with my pain, there was no way I was taking that recommendation. After running tests on my non-compliant vitals that suddenly fell back in line on their own, it was on to an array of other specialists. Immunology told us I didn’t have enough antibodies to be diagnosed with Lyme (but what did the ones I did have mean?). Neurology and neuro-oncology said my MRI was clean after missing half of the most important dance rehearsal of my life. The ENT specialist cleared out my ears, which made everything sound tinny for about a day. The opthamologist diagnosed me with nystagmus, so now I wear massive glasses (good thing they’re in style!) to accommodate progressive lenses. Rheumatology confirmed no arthritis or fibromyalgia. I had every joint in my body x-rayed, and just as we knew when every girl in my seventh grade PE class was scanned, I have scoliosis. Eventually, I ended up in front of a panel of doctors at the Stanford Pain Clinic, where I received a suggestion of acupuncture and biofeedback, a prescription for amitriptyline, and a psychological evaluation recommendation. None of these I took to heart.
My independent health journey began when my mom brought me to a sports medicine acupuncturist. I gave him my symptoms, including how my hands and feet were always cold, and he told me to stop eating dairy. I found it odd, but appreciated how I finally felt some rejuvenation after napping for an hour as a human pin cushion. (Note how with chronic fatigue, I cannot remember a time when I ever woke up feeling rested.)
Throughout the years, I have seen BodyTalk practitioners, medical intuitives, chiropractors, and more acupuncturists. I attempted physical therapy for my scoliosis, and made it barely three sessions. I started an elimination diet and cut out the major allergens like gluten, dairy, and soy, and added to that list sugar, tomatoes, chocolate, and anything “processed,” and took supplements for inflammation, energy, and the things I was missing in my diet. My symptoms began changing as I reached the end of high school, and every Thursday I would wake up with my heart working too hard as I tried to catch my breath while walking across my bedroom through what felt like thick sludge. Still, I saw my pain begin to subside.
When I went to college, my symptoms really threw me for a loop. I started having numbness in my limbs, more severe migraines, found buildings I couldn’t walk into without risk of passing out from pain or just plain dizziness, new pains, and severe brain fog. I became more attuned to the specifics of these reactions, such as where the pain showed up in my body and what I had eaten or been around that day. I had to move across the lecture hall when a cute boy sat next to me in organic chemistry because his cologne would make it feel as though my femur has shifted in my pelvis and keep me from walking to my next lab. I didn’t attend an entire quarter of lectures for statistics because they cleaned the hall right before class and the chemicals made it impossible to process the lesson. Sugar gave me brain fog, but wasn’t bad enough for me to reward myself with a raspberry almond muffin at 11 pm after a long afternoon of studying. Freshman year proved to be difficult since our generation is so enthralled by the social atmosphere and luxury of food and the only thing I could kind of eat in the dining commons was a plate of french fries. I landed in the ER that year for the first time after a dangerous brush with some Indian food, and had reactions over the years that probably should have sent me on many more trips. I found myself going to class in extreme pain early in the quarters instead of spending one of my precious class passes, betting on the fact that I would be knocked down again in week eight out of ten. I spent one day almost every finals week unable to move and took two midterms on a day when I definitely risked my life for a grade.
I was terrified about living this life as an adult. In college, I was able to skip class if I needed to, move around commitments, and work during weird hours when the brain fog cleared. As I geared up for my first full time job, I had no idea how my supervisor would view my pain or if I would be unknowingly exposed to some reaction-causing environment every day in the office. While we do have obnoxious construction going on for the next two years, the office has been supportive in the adjustments I’ve needed to make. A few reactions have forced me to spend my sick time, and I know that doing so and taking the time to recover will let me be a better employee the next day. If only my college self had believed that.
The physical pain did not come without mental struggle. I started seeing a therapist for the first time during my sophomore year – something I should have started my sophomore year of high school. I was diagnosed with Major Depressive Disorder and Generalized Anxiety Disorder, things that everyone says are a side effect of chronic conditions but never really stay on the sidelines. I’ve learned my own coping strategies to calm my compulsive need to start projects when something in my life needs to be fixed, and to build rest into my rhythm instead of a mechanism for rescuing myself on tough days. It often feels like the universe is the only one who gets to make the decisions in my life. I know that even on the worst days, when the walls are crumbling, and the stars are crying, and destiny seems to be leading me only to more pain, that I can do something about it.
So we’ve reached a point at which I have no diagnosis. I call it multiple chemical sensitivities (MCS) or idiopathic environmental intolerances (IEI), which so far are the best ways to describe my environmentally triggered responses. Every test has been run, every specialist has been consulted, every at-home remedy has been attempted. I still experience joint pain, brain fog, and feeling like my body is on fire on a regular basis, but I no longer have to ask my friends to walk slower in fear of puking at the pain. I can’t go into rooms that have just been cleaned. I often drink soda water and lime when out with friends if we go to a bar with no gluten free beer options (Corona Light, y’all!). Flying on airplanes requires an extra day for recovery, and I can’t get out of bed too quickly or I won’t be able to breathe. Yet, I still get up at 5:30 am to ride a horse before work and make time to eat paella in DC on the weekends. I avoid painkillers because I know they’ll bring me more pain than relief, unless it’s a specific brand for a specific kind of migraine. I have to live in an apartment with a bathtub so I can soak my aching joints. I was once taking over 120 pills a day when just weeks before I had never been able to swallow an Advil. Between two forms of birth control with the exact same percentage of the exact same hormones, my body will only tolerate one because some inactive ingredient or preservative in the other interacts with my insulin infusion sites and causes swelling, bruising, and pain that won’t go away for months. Most of my life is lived in trial and error, and by George am I going to try.
Throughout all of the reactions, all of the crying and breakdowns about my lack of control, all of the missed concerts and boiling hot baths, my friends and family have stood by me and let me ask for what I needed. I have taught so many people the concept of spoon theory and watched them unabashedly accept the weird cashew bar snacks I’ve given them when they get hangry. Invites have been extended even when friends know it might be difficult or impossible for me to participate, because the value of the attempt to include me has a lasting impact while my condition already makes me feel like such an outsider. Going to the ice cream store when I can’t eat dairy can still be a great afternoon. I have thrown fits and abandoned what is supposed to be the only option left to ease my pain, and I have been met with kindness and patience. For all of those around me, I am grateful. For my friends, I am in awe of your support. For my mother, I am safe because of your commitment.
In one of my recent rants about the futility with which I have slowed my search for answers and my fear of shifting into a higher gear again, my SO reminded me of something. He said that even though all of my doctors appointments happened years ago, it doesn’t mean that the lack thereof signals an end. I have still been on my diagnostic odyssey as I navigate each day. I am still learning more and more about my condition and adapting to its changing demands. I am still growing, and always will be – and that’s okay. It’s frustrating not having a name or a treatment plan born of modern medicine. As long as I am moving, I will be headed in the right direction.