Updated: Aug 6, 2020
In this series, guest writers with a variety of conditions and impairments will share about their experiences as Spoonies, and how their health affects their relationship to life and death.
Author's Note: As of Aug 2020, Spooky Spoonie has been changed to Disabled Darklings. For information on this change, see post "I'm Disabled." The text for this post has not been modified to reflect this change.
Today, and in honor of Ehlers-Danlos Awareness Month, we hear from hair artist Courtney Lane!
1) Introduce yourself! What are you passionate about? How do you identify (what are the terms you use to describe yourself and your condition)?
My name is Courtney Lane, and I am a Victorian Hair Artist, Historian, and Professional Weirdo currently residing in Kansas City. I am the owner of Never Forgotten where I make bespoke contemporary hair art and jewelry. Some of my deepest passions include keeping the nearly lost art of hairwork alive, harnessing the sentiment of hair to help get in touch with our most complicated emotions, and exploring mortality as a means of learning how to live our best lives.
Depending on the circumstances, I may say that I suffer from a chronic illness, chronic pain, chronic fatigue, or any combination of the three. Over the past few years, I’ve needed to rely more heavily on using a cane, and as I’ve become more comfortable with using a mobility aid, I’ve also become more comfortable with embracing the term disabled for myself. Of course, Spooky Spoonie is also a new favorite of mine!
2) Tell us about your disease, impairment or condition!
After years of a seemingly endless search for answers, I was finally given a diagnosis of Ehlers-Danlos Syndrome (EDS) along with a few related disorders such as Postural Orthostatic Tachycardia Syndrome (POTS), an unspecified demyelinating disease, and immunodeficiency.
EDS is known to be a connective tissue disorder, and as there are connective tissues throughout the entire body, it can cause a wide variety of symptoms and related disorders which can fluctuate in severity over the years or even day by day.
3) How does it affect your day-to-day life?
The most obvious symptom of EDS is extreme hypermobility which can be a very odd thing. On one hand, I can do some really interesting contortion tricks, but on the other hand, if I yawn too hard, I might dislocate my jaw. This is especially problematic when the condition causes chronic fatigue and; therefore, a lot of yawning. I have a brace for just about every joint on my body, which I’ve been accumulating my whole life, and my accessibility/mobility needs vary every day.
With the constant variation in the severity of my symptoms, it can make planning my days very difficult, because some days I’m just not able to do very much. In turn, I experience a lot of frustration and guilt from lack of productivity on bad days which can be horribly demoralising as a business owner, and between dizziness/fainting spells, joint dislocations, numb or tingling limbs, frequent, prolonged infections, and general body pain which can often verge on debilitating, there are a lot of things that can go wrong to interrupt my daily activities.
I absolutely love my job, and I wouldn’t change it for anything, but it certainly wasn’t my first career choice. I grew up a dancer, and I absolutely loved it even though it could be quite painful. I very much wanted to be a dancer and choreographer, but as I grew older it became evident that my body would not be able to handle the intensely physical lifestyle of a professional dancer. On one evening a week, I still teach dance lessons for the pure love of the art, but at times it does kill me how little I am able to dance myself.
4) How does your diagnosis and/or condition affect your relationship with mortality?
Much like mortality, my condition is chronic and incurable: an inevitability.
In learning how to coexist with my disability, I have become well prepared to live with the inescapable reality that someday I will die. In the midst of endless doctors appointments, I’ve never felt invincible as many young people do. Death has always seemed possible, and at a time when my medical history was riddled with question marks, the thought would often occur to me that it may come for me sooner than my healthier peers.
I use my knowledge about my disability and my mortality to continually adapt and evolve. Acceptance is the only answer to the things which cannot be avoided, and I thoroughly believe that you can only live the best version of your life once you make peace with these things.
5) What is one thing you would like others to know about interacting with someone with your condition?
Please trust that not everything can be fixed and people who live with chronic conditions understand our bodies better than anyone else. The average, able-bodied person I interact with does not seem able to accept it when I say there is no cure for my condition. Very often the conversation will turn into “you should do this” or “have you tried that?” This is especially unfortunate if the questions are coming from someone who sells the product they’re recommending.
I often feel like walking into business networking events with a cane makes me an instant target for anyone selling health and wellness services. People like this seem to gravitate toward me to ensure their products will help me and ask invasive questions about my medical history when I decline. Whether the recommendations are well-meaning or not, it is very rarely (if ever) helpful, because I have a massive team of doctors, years of research, and a lifetime of experience in my body that I trust far more than your unsolicited advice.
Would you be interested in sharing your story in the #SpookySpoonie series? Send us an email at firstname.lastname@example.org.