Yesterday was a bad day.
Important detail: I have Multiple Sclerosis. I have probably had it since my early 20s, but I wasn’t diagnosed until my mid 30s. I have a cousin who also has MS who is only a few years older than I am and is already in a nursing home. I am still walking and talking, but what I have to go through to maintain that is colossal (and insanely expensive.) I take 58 pills everyday (I do a mixture of traditional and modern medicine). I require 2 intramuscular injections a week. I need a machine to help me breathe while I sleep. I have acupuncture once a week. Sometimes I still need a cane. I can’t walk for very far or very long, and sometimes the fatigue hits me so hard it’s literally as if my body is shutting down. I recently went grocery shopping when it hit and I was forced to sit in a Haggen’s parking lot, unable to get out of my car and having to pee for 25 minutes. At one point I seriously considered peeing in the car out of sheer desperation. My point being that when these things happen no amount of determination or will power can change the situation. Because of the damage the disease has done to my brain and spinal cord, everything I do requires 5 times the effort and stamina it requires other people.
For the most part, I try to maintain a “positive” outlook. By positive, I don’t mean cheerful as much as determined and driven. I don’t do cheerful, it ain’t my nature. I try not to let on how much my legs hurt, how tired I am, how much it breaks my heart when people want to do things that I can’t participate in. I think the most devastating loss is the fact that I can’t dance anymore. Believe me when I tell you I am not being mawkish when I say to dance every chance you get, because you really don’t know when it will be your last dance, and you will miss it more than you can imagine. I try to forge ahead with my life and not let the disease or the burden of my healthcare get in the way. But sometimes something small can trigger a cascade of rage and sorrow that I think runs under the surface for anyone in my situation.
In German class yesterday, they had the guy in charge of the “study abroad” program come in to talk to the class of predominately 16-24 year olds about they opportunities available for them to travel overseas. I watched these entitled little fucks ignore the guy and act completely disinterested, not to mention say things like “oh I lived in X country for 5 months, but I never bothered to learn the language” or “I lived in blah for a year on a military base, but I never left the base”. Meanwhile, I am sitting there, wanting to jump up and scream at these brats “WHAT THE FUCK IS WRONG WITH YOU?? GO, FOR FUCK’S SAKE! BECAUSE ANY DAY NOW YOU MIGHT END UP 42 AND NEVER HAVING BEEN ANYWHERE!!” Because I never traveled. I’ve never left this country. I was always too poor or couldn’t leave my job or any number of stupid, stupid things. All at once, my situation crashed down on me, the fact that I will probably never travel, I will never go to Prague or Budapest, never visit Dublin or Berlin, never see a real castle, never be anywhere where the common language is anything but English. I will never see a building older than 300 years. I will never walk the streets of a medieval village or in the footsteps of my ancestors. The logistics involved in lugging my medical equipment and requirements are astronomical. My energy levels and physical limitations prevent me from really exploring a city or going to museums. I can’t travel alone and I can’t ask someone to just come along and be my damn nurse (Mr. Sigrun hates to travel.) I need to worry about medical insurance for travelers, making sure I have access to refrigeration and power supply, and a standard toilet, since any kind of insane crouching nonsense ain’t gonna happen. Not to mention the bullshit of airport rapist security and physical demands of air travel. An uncontrolable torrent of suppressed bitterness, self-pity, anger, and frustration filled my stomach. A sense of impotent rage at my own helplessness and feebleness came over me. From that point on, my day was pretty much a crap sandwich with a side of fuck fries.
Adding in the fact that I was already having one of “those” days where everything you touch falls apart, and the day just kept getting worse. Stubbed toes, bad drivers, ferry problems, missed connections, you name it. It culminated in having dinner at a friend’s house, where the glass of wine I was enjoying suddenly had a fly swimming in it. There was a woman I had never met before there, so I was trying desperately to repress the bile that had accumulated in my heart all day, but after a couple of glasses of fly wine I was feeling less like holding back. I was trying to riff passionately about a subject (coincidentally, Americans who don’t know how to behave themselves in another country), humorously but darkly as is my nature, when she said that one sentence that has haunted me my entire life,
“Gee, Sigrun, tell us how you really think!” *chuckle chuckle*
My good friends and husband got quiet for a moment and all instinctively leaned away from me, bracing themselves.
I snarled as inwardly I am capable and tried to brush it off in the most gracious way I could muster, which is to say like a bear dressed in a wedding gown, on its hind legs, trying to speak English, all flared lips and teeth and grunting.
I don’t think the new girl likes me, but then again, my first impression of her wasn’t that great. I HATE that saying. That is such a passive-aggressive, dismissive way of trying to shut someone down by making a joke out of their opinion. I also hate the fact that people tend to say that to women far more than men. Because a woman with a strongly held and passionately expressed opinion is an eyesore, to be scoffed at, negated, and ignored.
After dinner, I came home and had a good cry (because even fucking valkyries get the blues, dammit) while my husband made me a cup of hot cocoa to comfort me. As I was finishing it, a clump of undissolved powder at the bottom of the glass broke open and I ended up with a lungful of chocolatey goodness.
That day couldn’t end fast enough.
I really had no point to this post. Sigh. And so it goes…
Ravens and Ivy 