i pick up a magazine"Little Plastic Castles" Ani DiFranco
which is every magazine
and read a story then forgot it right away
I'm not saying I liked having cancer but it wasn't the end of my world. I got more out of it than I lost, gaining a new perspective on life. Diabetes, while complex to manage and somewhat time consuming didn't fundamentally change who I am. Any limits I had on my life were already in place and I got along. I could still write poetry and love people I love so I didn't really see the need for a pity party. Graves Disease was tricky, a first misidentified as hypothyroidism and potentially fatal but close only counts in horseshoes and we eventually figured that one out too.
Sure, my medical history is complex and takes a lot of management but Multiple Sclerosis is the first medical condition that has fundamentally and permanent impacted so many areas of my life that it it hard sometimes to recognize myself.
they say goldfish have no memoryI am a poet who can't type, can't concentrate, misspeaks myself like a stroke victim but I probably will not recover that. I try to call my daughter most days but sometimes forget to call, I forget her number and have to look it up, I forget why I came into the room. I spend a lot of time walking into rooms not knowing why I am there. It is hard to come up with memory strategies when you forget to remember, forget to write it down, forget to read your day book or the calendar which you have a better than average chance of having forgotten to write in or on anyway. The little spoken reminder doohickey only works if I remember to record the memo, remember to check it.
i guess their lives are much like mine
the little plastic castle
is a surprise every time
"Little Plastic Castles" by Ani DiFranco
I am a writer and an editor and my creative stream is easily dammed and diverted by misspellings. It is difficult to hang onto the words the muse whispers when you have them blown out of your short term memory by the incomprehensible verbal mash that was, prior to this, your primary way of communicating. If I don't know what I mean, how will anyone else and it is very difficult to get the mental editor I spent a lifetime training to turn off when faced with gibberish.
I am a walker who can't walk long distances anymore, who has to depend on rides and buses, who gets confused sometimes driving somewhere I've been enough I should know the way. and I am an environmentally conscious person who has had to buy a car, and an SUV at that, because I am no longer capable of taking care of errands and my responsibilities without one and I have to have a car I can get into and ride in comfortably. I scare people who love me when I slip, fall, forget the way home, come home late because I have gotten on the wrong bus twice. Checking the bus number, route, direction are logical steps but only if you remember to take them.The inactivity of two years has caused me to put on nearly a hundred pounds that is difficult to shed.
I am an independent person who is forced to be dependent on other people to do simple tasks like cooking or buttoning my own winter coat. I've always been able to take care of myself and while my realistic side will ask a stranger in the street to close my back tailgate for me, the do-it-myselfer is angry and appalled. I don't want to have other people take care of me. Doctor-Patient, Caregiver-medical disaster...these are hardly equal relationships.
People I love have the hardest time with the memory problem. I've lost some, I'm losing more. The fact I can't walk right anymore is easy to grasp. See me walk. Obvious handicap. A memory impairment that comes and goes with no predictability is impossible to spot with any consistency so it seems to become easier for them to regard me as unreliable. I am the partner. I am the mom. I am the friend, the organizer, the protester, the volunteer but it is getting hard to accept that it is just hard for them to accept and just fucking ironic that I can't forget I don't remember stuff.
It's a complex situation ripe for misunderstanding. I forget things. I remember things wrong. I misspeak myself. I become agitated and sometime verbally combative when I realize I've forgotten again and someone else is inconvenienced, let down, upset with me. It may not be what they mean but the implication is that I am not trying, I am doing it on purpose. You fuck up enough times and people start to focus on the fucking up, not on the why. I can deal with apologizing if I have let someone down. I am not too proud to explain. I can deal with being wrong and saying but I can't deal with being blamed for something I cannot help.
MS does not care if I need to remember. MS does not care if the bill is due to be paid. MS doesn't care if I have dreams or responsibilities or a self definition that does not come from my medical conditions. It doesn't care at all that I let people down.
My self definition was poet but am I still a poet if I cannot write anymore? Am I still a mother if I can't meet my child's needs.
On good days, my partner marvels at my positive attitude. On bad days, he's doesn't want to remember either. Goldfish, Ani reminds us, have no memories so now I am Goldfish Girl.
Goldfish may not mind but I do.