Since Jackie posted a “rant” today, I figured I would follow suit, since I’m feeling slightly bitchy.
So my main point of interest here is in the issue of how other people, who know absolutely jack shit about being diagnosed with a potentially debilitating disease when you’re in your twenties, that does in some ways, and potentially big ways, make you re-think your plans for the future, try to dole out advice which you didn’t ask for, or even insinuate that you need in the first place. Sorry, probably one of many run on sentences. So I was at a dinner the other night and the lady who was giving the dinner, who I “surface” know, but who apparently think she has some relevance in my life, looked at me in a totally condescending way and basically told that I need to make sure I don’t avoid doing things because of the MS. Wow. Now that’s some golden advice. Definitely something I hadn’t even thought of. Perhaps the fact that I had cancelled the dinner twice before finally dragging myself over to attend led to her to think that my disease was what perhaps kept me from delaying her pot roast dinner.
So thanks to her, I will bring up the dreaded “future” issue that has become a staple in my food for thought bank. When I think about the idea having children, I think about how my disease may “potentially” affect their life. When I think about finishing school, I think about how a relapse one semester could “potentially” fuck up my grades. When I think about the future years spent with the person I love, I think how about this could “potentially” affect his quality of life. These are the realistic facts being diagnosed before you have accomplished all of these stereotypical “musts”. I am not however wallowing in self pity, telling myself that I can’t do this or that. I am realistic, I do not live in la-la land, and I do not feel sorry for myself, I am simply truthful. I do not have plans, and will not ever, give up on “doing things”. I don’t think that having MS is grounds for giving up on “doing things”. Do I think it’s grounds for perhaps not getting on the treadmill everyday. Yeah, I do. Is it grounds for taking a nap every now and then? Yeah. Have I ever talked to her about even having MS in the first place? No, I have not. So for her to come out of left field with a little friendly advice about the grapevine news of my diagnosis, was completely uncalled for. I didn’t ask for it, and if there is one thing that people who actually LIVE with a disease do not want, it’s advice on how to live with it, from someone who doesn’t have it, unless perhaps you’re an over payed, undereducated doctor. Here’s what we do want, someone to listen, and only when we ASK them to listen. I choose my listeners wisely.
So my advice counselor for the night apparently has a sister with MS. Mind you her sister, like her, is in her late fifties or early sixties. Apparently when she was diagnosed, she was the “suffering saint” who kept her illness a secret for five years. Is this what is expected of people who are diagnosed? Is there supposed to be more pride in a person who hasn’t felt comfortable enough to share their issues with even their family, or perhaps felt that they are protecting them from worry or hurt? These may not have been her reasons for keeping her diagnosis from her family for so long, but I will safely assume that they are reason for some. I however didn’t appreciate the again, condescending way in which this was said to me, as if sharing the diagnosis with my friends and family somehow makes me weak or looking for sympathy or pity. In my family, we communicate. We fart in front of each other, we scream and argue, and we have issues, just like every other family on the planet. If there is anything that bothers me more than life itself, it’s surface fake bullshit. I am thankful that in my family, this only happens with the extended members.
Now let me just state here, as a sort of disclaimer, that perhaps this advice really did come from the bottom of her heart, or what have you. It isn't that I don't appreciate the thought, although it did unleash some perhaps unnecessary rage in me. Still, there is this huge element of ignorance or non-kosher behavior in this, I think. I suppose I could have found myself in the opposite position here, if the tables were turned. Maybe I would try to give someone some super good advice on how to act in the face of their newfound neurological disorder, if I didn't already have one. Having one however, has forced me to quickly learn who I will kindly accept advice from. I have learned so much about the kind of friend, sister and daughter I want to be not only now, but to someone else when a similar "shit card" ever gets dealt in their direction.
