I’ve known for quite a while now that the worst thing about having MS and various other illnesses, it’s not the pain, not the losing of mobility, not the falling down, the slurred words, the fatigue, lack of job and income or the inability to care for myself. No, it’s the losing of my memory. That’s definitely the worst thing. I tried explaining to someone today what it’s like. Supposing someone broke into your house and took one thing. You probably wouldn’t notice, especially if it was something small like a book or DVD, and the only way you could notice that it was gone is if you went looking for that thing, and you might look other places for it because you know you own it but no matter where you look it’s just gone. Now imagine that things start going missing a few at a time, and you don’t really notice at first but then you start realizing that many things that you’ve wanted to retrieve just hadn’t been there lately and you wonder what’s going on, but there’s no explanation for it. Eventually you realize that your shelves and closets and drawers and cupboards are noticeably more bare than they were, that so many things have gone missing now that you can’t even keep track of what you’ve lost. You know it’s all missing, you can see the bare shelves, but there’s no easy way to take stock or inventory of what’s gone. Sometimes maybe you decide to retrieve a book or DVD, but maybe you only recognize it by sight so you rummage through all of your belongings, and best case scenario is that you find it right away, worst case you may search and search and tear your house apart but you just can’t find it anywhere, leaving you frustrated and exhausted, and angry and confused because where the hell is everything?! Now, add another layer, you’ve got a friend over and you decide you want to show them something, but it’s very difficult to describe, so you tell them excitedly that it’s around here somewhere and go on your usual search around the house, telling them you’ll find it, you know it’s there, you’ll definitely find the damn thing, and you start to get frustrated because you JUST saw it so you know it’s there, so your friend awkwardly tries searching for it with you, but since you can’t describe it they’re not sure what they’re looking for and all they do is get in the way, and you both become embarrassed by the whole situation and you finally just decide to drop it but the awkward embarrassment stays for a bit, because your friend reeally doesn’t understand what you’ve been going through as all of your belongings are somehow slipping away a bit at a time.
So now, imagine that your “house” and “belongings” in this situation are your mind and all the memories and contents therein. Imagine having a conversation with someone and visualizing something with a very self explanatory name, like toaster oven or weedeater, and despite the fact that you can see that object clearly and know exactly what it does, you can’t seem to find the name, and so any words associated with the description are also shrouded. If you could describe it in the simplest terms, “makes toast, small oven”, then you’ve found your object’s name or an approximation like “toast oven”. But no, you can’t find either of those words, you frantically try to think of words to describe this thing but when you’re on the spot with a faulty memory retrieval system, it’s that much more difficult to accomplish, and all the while your friend tries to help you by throwing out words, but all that does is confuse you. And it’s not just names of items, it’s names of bands, authors, books, places, names of people you know and people you don’t know but should know their damn names, like your best friend growing up, your favorite actor or musician, or even the friggin president. But it’s not just names, it’s life events, things you’ve done, things you’ve experienced, it’s all slipping away. Some of it may just be a bit hazy, but some of it is just GONE.
I can see all of these things happen to me. I used to have an impeccable memory. I have memories back to at least age 3 and until recently, there were very few gaps. I used to remember almost anything I’ve ever read, anything I’ve researched, anything that was told to me. The only things I was ever very hazy about was math, which has never been my strong suit, and names of people I’ve met but don’t know well. Otherwise I was always the person people came to when they needed information about all manner of trivia, life events, names of actors, matching a song to a band, and in the work setting I was the go-to person for pretty much everything pertaining to our particular work setting. Nowadays, it’s rare to have a conversation without faltering at some point or another because I can’t think of the proper word for something, the name of a person, place or thing, an adjective, an event. Sometimes it’s so difficult to retrieve words that I stammer and stutter just trying to formulate my thoughts into a sentence.
I’ve always prided myself of being able to learn from my experience and knowledge, to apply that information to my life and my actions and use my wealth of knowledge to shape me into a better person. What are we but the sum total of our experiences and knowledge, and how we choose to reflect on those things? As my memory becomes more faulty, I feel as if bits and pieces of me are slowly leaking away, and I can’t help but wonder what will be left. Pain and anger? Frustration? Confusion? Will I be the old (or maybe not so old) lady in the care home who fights her caregivers every step of the way because deep down inside I know that I should be able to do this on my own, because I know that I used to be independent, smart and capable, and now that’s gone and it’s killing me inside.
As these things are happening, as my body deteriorates, my world crumbles all around me and each day is filled with pain, some days I can feel myself screaming inside, like a person trapped, a person lost. Outwardly, and whenever possible inwardly, I try to weather these changes with grace. Even on days when I just want to scream and throw things about the room, I maintain my composure. I’m not trying to stifle my feelings, I process them as they come, but I feel that if I can’t or won’t handle my lot in life gracefully, I’ll lose myself, and really will be nothing but pain and anger, resentment and confusion. I don’t want that for myself and my loved ones.
I’d always told my clients in my counseling days, there are very few things that you can control in your life. You can control what you say and do, and you can control your reactions to things that happen to you. That’s it. So decide who you want to be and control your actions and reactions accordingly. I’m going to follow my own advice for a change. I have to try. I’m 36 years old, and I’m losing my memory, my mobility and my sight, and I do not want these things to change who I am as a person, I must try to take control of those things that I can control for as long as I’m able, because those are my choices. I can deal with this situation to the best of my ability, or I can let my emotions drive my actions, in which case I will likely lose myself completely.