Dear creatures that were once thoughts and are now beings,
Today I express to you my thoughts about thoughts (how meta)! Long ago I decided to create a a little book of Eleanore. I dug through my room and found an obnoxiously pink leather bound book, and before long it went from being a simple journal to invaluable. A year later, it contains every single hope I have along with a plethora of lists. There are lists of places I want to visit and places I have been, concerts I have been to and ones I dream to attend, my favorite songs, books, and movies. It holds quotes from those favorite things that have made a place in my heart as well as wonderful quotes from people in my life who have taken even bigger places in my heart. It also includes tiny written dates next to those items I have already accomplished. This pink, leather thinking thing has come to bring me so much joy…until I started to wonder if I was being odd.
It was only recently I realized that this practice might be seen as strange. Many people have a bucket list, whether it is tangible or only in the subspace of their minds, but my book became more, as you can tell from its description. After initially being pleased with this new little creation of mine I became a bit self conscious about it, and that feeling has persisted since.
I’d assume for most people it is easy to understand why I’d write down everything I wish to accomplish, so I find that part unnecessary to explain. The oddness lies in why I write down what I’ve already done or every quote I have heard that has caused my heart to flutter. My pondering has led me to a single answer; it all comes down to memory. My chronic illnesses, specifically Celiac Disease, PTSD, and Chronic Fatigue Syndrome (also known by its more daunting name, Myalgic Encephalomyelitis) all contribute to my mind not working quite as it should, and as I grow it troubles me more and more.
Celiac disease keeps my brain in a fog despite being gluten free for nearly ten years. Contrary to popular belief, a Celiac going gluten free solves many issues, but not all. Considering I was not diagnosed until I was 18 years old, my disease has done a good deal of damage to my body, some of which cannot be reversed. While I can remember many memories and important information, I often struggle to remember fine details. My brain is notorious for forgetting pin numbers, passwords, and usernames, as well as the placement of items. All of this information seems just out of reach in my mind yet I cannot bring it to surface. I’d be perpetually lost in Missouri if not for being able to say to my pocket robot, “Ok Google, where the fuck am I and how do I get home?”
There is also my PTSD and Chronic Fatigue Syndrome, both of which work to cause my disassociation. Together they keep me in a dreamlike state, causing me to always feel separated from my own body, on the worst days questioning if I’me even real at all. Disassociation causes constant discomfort since it makes me feel less than human and as if I cannot completely feel most things I touch. This also explains why I am particular about textures; some I get more sensation from while others I seem numb to. The numbness is a cruel reminder that my brain is not average at all. (You can read more about my disassociation here!)
Two years ago my grandmother began to suffer from the onset of Alzheimer’s. Within months it progressed and completely overtook her mind, making her forget much of her life. Witnessing her mental decline has not only made my heart ache for her, but has filled me with fear that I might end up the same. I certainly hope I do not inherit the disease from her, but every day I can’t help but think how badly I do not want to forget.
For everything in the past that I wish to hold onto and everything in the future I hope to experience, my little book of Eleanore captures it all and keeps it safe. I fight vigilantly to have a fantastic and wondrous life, and to forget the most spectacular parts would be a terrible loss. My book calms my anxieties about loss while allowing me to organize the static in my mind. It is altogether a written composition of the stardust that I am made of.
Those of us who deal with chronic illness experience life differently than those who are considered to be of average health. Therefore we must find our own ways to cope with life, to organize it and to live it as happily as we can. To the outside world we may seem peculiar, but likewise, most days the outside world seems peculiar to us. The ring I keep on my finger to help with my dissociation and my anxiety, my compulsive list making, my little book and all my other habits help me to experience life positively despite all the illness that tries to deter me.
The more I become transparent about my life with chronic illness the more I meet people who are similar to myself, and it is positively fantastic. In fact, it is one of the main reasons I write; to remind us all that we are not alone in our struggles or our peculiarities. What helps you to cope with your illnesses and help you experience life? I hope you’ll share with me your answer in the comments below!
Do the scary thing; get scared after.
~Klaus Baudelaire – A Series of Unfortunate Events