My father thinks I was being pessimistic about those side effects Tecfidera is known for. I don’t think so. For starters, my father didn’t even know what kind of side effects he was talking about until I enlightened him. Continue reading
Resentment is like taking poison and expecting the other person to die, so says the quote that has been attributed to several different authors. And it’s true. Resentment holds you in its grip, doesn’t let go, and slowly eats you up inside. If you think of an autoimmune disease like ms, in which the immune system eats away at the myelin sheath, it becomes quite literal. Dr Gabor Maté writes on his When The Body Says No that if you can choose between guilt and resentment, choose guilt every time. I’ve been trying to adopt that strategy but every once in a while resentment surfaces before I even have time to notice what’s going on.
I’ve always been very independent and autonomous. That’s a personality trait of which I am, for most of the time, very proud. But because of that people don’t usually see me as someone who may need help, who may need to be cared for. And there were moments in my life when I certainly wish things hadn’t been so lonely, despite the fact that I could take care of everything on my own. So when someone in her thirties asks me to purchase something online for her because she doesn’t even know how to use a credit card on a website (you just put in the numbers, stupid), I feel like screaming. Scream because I don’t understand how someone doesn’t even try to do something incredibly simple for herself before asking for help, scream because I don’t understand how someone can get by exclusively through manipulating people into doing things for them – and, yes, scream because I rarely remember having people offering to help, even in much complicated situations (aww, look at all the resentment right there). Damn. I don’t remember who told me or where I read that ms was a blessing in the sense that I now have a perfectly valuable reason to say no to people and don’t let them take advantage of me. “My brain is all foggy today, I don’t remember how to do it, but I’m sure you can manage, little princess.”
The other day I had dinner with a friend. I was reading a book while waiting for him and when he arrived he asked me what I was reading. I told him it was about anxiety and depression in the context of ms (I will write about the book soon) and also mentioned some curious things I’d learned from it. He then proceeded to make fun of the book (“what a light summer read”) and changed the subject as I tried to tell him how relevant it was for me. Now I know some people use scorn as a means to disguise the fact they don’t know much about a given subject. Oldest trick in the book. And they even go as far as to say that it’s not important (if they never heard of it, of course it’s not, because the world obviously revolves around them). Some people even feel threatened by the idea that other people may know more than them, especially, god forbid, if that person is a woman and they’re men. But news flash! It’s my health, you moron, of course I know more about it than you! Why not ask some questions about why it is important for me and engage in a dialogue that can actually add meaning to both our lives? Wishful thinking. I can’t believe someone who’s known me for 15 years doesn’t let me connect and chooses instead to push me away with scorn. I can’t believe I’ve become alien to even those who have known me longer.
Seriously, I’ve cut off people from my life because of their absolute disregard for my health. On and on again I used to tell a friend of mine that no, I didn’t want to have dinner during the week, because that would make going to work the next day extra hard for me. Besides I had classes on Tuesdays and Thursdays and I wanted my mind to be clear and sharp, which wouldn’t happen if I’d slept less hours the night before. And no, Fridays I’m usually so tired I just crash. He couldn’t make arrangements on weekends so he kept pushing me to make an exception. But no. One day I just told him I was really busy and that I would call him when I had the time. I never called. It was it. I just wish I didn’t consider, time and again, to do the same with other people.
Maybe I’m overreacting and I will laugh about this soon. Maybe I just wrote the last sentence because I’m second-guessing myself and not having any consideration for my own feelings. Maybe I became overly sensitive since the diagnosis. I wish there was an instructions manual but there isn’t. Right now I’m just angry and lonely and scared. But mostly angry.