Thursday, January 12, 2017

This Photo Terrifies Me

A high school friend of mine recently found and posted this photograph on her Facebook feed.

This photo absolutely terrifies me.

And it's not because I find it at all embarrassing to see my soon to be seventh grade self with that hair (I'm the one at the very top in the blue shirt).

It's because I have no recollection of this moment. None at all. Not the moment this picture was taken, not the birthday we were gathered to celebrate, not the balloon fight we had just prior to gathering for this photo.

To be fair, this group - or pack, as my mother called us - spent a lot of time together both in and out of school and at various houses, celebrating birthdays throughout the year and having water balloon or snow ball fights frequently over the course of middle and high school, so one could argue that it would be easy to get one or more of those social gatherings confused or mix the details of one party into another.

And this photo is also over 20 years old.

But I'm not quite 40.

It terrifies me because I honestly have no memory of the events surrounding this photograph.


There are other moments in my life that are gone too. They just don't exist in my memory any more.

I remember several years ago my sister was recalling a family story where she and I were doing something crazy...but I don't remember at all what it was that she was telling me I had once did with her because not only is the memory of that event in the past gone, but my short term memory of being told about the event didn't quite take hold, so I've lost the initial memory and even the memory of being told the specific memory. (And when my sister reads this and then asks something like, “but what was I telling you about?” my honest answer is that I have no clue.)

My memory is screwed up. I actually have much harsher words to describe how I feel about it, but let’s just stick with “screwed up.”

I was diagnosed with Multiple Sclerosis in 2006 and for me that includes physical symptoms (numbness and tingling in my extremities, an intentional tremor in my hands, and poor balance, to name a few), mental health symptoms (depression and anxiety), and memory issues.

Most of the physical symptoms I have learned to live with and compensate for. I take medicine that is supposed to stop the progression the disease and I take medicine for some physical symptoms and medicine for my depression and anxiety.

However, there is no medicine to bring back lost memories. There is no medicine that helps me remember the end of TV shows or movies that I have seen multiple times in the past. There is no medicine that helps me retain more than three or four pages of a book that I’ve never read before. (Which is one of the reasons why I love Harry Potter so much and why I’ve read those books upwards of fifteen or twenty times each, because I know them by heart, but I can still enjoy the characters and the plots that I’m reading without getting frustrated at myself for forgetting the chapter I just read.)

My screwed up memory is the thing that bothers me the most about having MS.

I know, I know, it could be worse (and yes, there are people with MS who have much worse symptoms and that sometimes includes much worse memory problems), but the thing is, when I’m only thinking about myself and what MS does to my life, my body, my mental health, and my memory, it really doesn’t matter to me that it could be worse, because, frankly a lot of the time it just plain sucks that I have MS.

I hate that I considered myself a dancer (ballet and some jazz and tap) from first grade all the way through high school graduation and now I struggle to walk a straight line.

I hate that I was decently athletic through high school and part of college and now I’m honestly afraid of being able to stay balanced on a bike.

I hate that I acted in plays throughout elementary and high school and into college, memorizing line after line and monologue after monologue written by other people, and now I can’t memorize a twelve minute sermon that I researched and wrote myself.

I hate that people can’t understand or don’t try to understand that I have chronic health issues simply because I “look so good” and look “too young” to be sick.

And so you may be wondering how, after living with this diagnosis for over ten years, I have come to peace with all of this.

Well...I haven’t come to peace with it on some days and on other days I have.

The nature of the disease is that no two consecutive days are the same for my symptoms so no two consecutive days are the same with my acceptance.

I know that in the midst of it, I am blessed to have my best friend and husband be incredibly patient with me day to day as I ask the same question about the same thing (TV show, scheduling issue, technology question, etc.) again and again. I am blessed to have family and friends who are not just patient, but don’t constantly ask me how I am feeling or treat me like I am sick. I am blessed that I have doctors I trust (who have assured me my memory probably won’t get worse), I am blessed that I have found an online community in a secret Facebook group of other young clergy women with chronic illness who just “get it” when whatever the “it” is needs to be said.

However, what I simply want while living with this illness and all of the chaotic issues that accompany it, is that you please don’t assume. Don’t assume about anyone, but please don’t assume that because of external assumptions you make about me that I’m not struggling with symptoms and/or that my symptoms aren't bothering me. Please don’t assume that even when I “look so good” there aren’t days that my body is screaming at me on the inside in multiple ways. Please don’t assume that I’m being lazy when I take a sick day even though I don’t look sick or when all I do on my day off is sleep (truly, all day from 9:00a-4:00p). Please don’t assume, as much as I love and respect you, that I’m going to remember every moment we’ve shared.

For now, I am healthy, given the fact that I have an incurable autoimmune disease. Being healthy with MS still comes with some pretty significant health issues, but I’ll take what I can get.

And even though I don’t remember the events surrounding this photo at all, I will revel in the comments made by my peers who were in the picture with me and, without having to remember, I will know in my heart that were having a fantabulous time.