At chemo on Thursday, I sat beside someone who was diagnosed with Rheumatoid Arthritis when she was twenty years old, the very same age I was when I donned my “Lupus Face.” At one point, this woman to my left, sitting by her “drip, drip, drip” of the RA miracle drug Remicade, asked me if I was married. She must have been in her 50’s, her entire head of hair pulled back in a silvery ponytail, her oversized sunglasses slipping every so often down her nose, which she curiously kept on for the whole 4 hours of her IV treatment. I smiled at her question and shook my head “no.” I was not surprised in the least when she smiled back, shook her head sadly and said, “yes, relationships are hard.”
She continued on to describe one night when she approached her now ex-husband and asked if he would help her out of the bath if she chose to take one that evening. He said yes and so, like many RA and Lupus sufferers before her, she ran herself a hot, soothing bath for her achy body. When it came time for her to get out of the tub, she called out for her husband. There was no answer. She called out again… nothing. She had to wait three full days for him to return. Among other medications, she was on steroids and her body went into steroidal shock and withdrawal. When he came back he said simply, “I was hoping that you would die.”
There is so much more to this story that I didn’t hear and so I choose not to put too much meaning into that dramatic last line. It just made me sad. I am sure they were very happy once. She said he married her when she was already sick, but “I guess you never really know until you’re really in it.”
My eyes have been red lately – that’s a Lupus thing…you know, inflammation of the eye vessels. I remember having a particular bad bout of the “wolf eye” when I traveled to Toronto for a conference a few years ago – it took gargantuan inner strength to simply look at people! My inner voice was working overtime – “surely they think I have a grody case of infectious pink-eye (not at all conducive to any kind of social networking) or I had clearly just been in my hotel room getting high!” Oh, the drama. The bat signal (butterfly rash) is out too, I’ve noticed. Started showing up last week. I have thanked my rosy moon cheeks for the warning and I’ve made sure I’m extra tuned into the sights and sounds of my body, especially now that I am weaning off “Evil P.” I’m getting headaches now, nothing major, but enough to send me back to bed for hours. I feel Chester, my cheeky, chest inflammation monkey, poking at me lately. Breathing is fine, but every so often he’ll give me zings of pain to carry around in my breasts, just to remind me that he’s still there. I’m cool with it. I, of course, understand the need to get a little attention now and then.
I’m still feeling the affects of chemo today… had to say no to several lovely invitations to venture out into world that exists beyond my fuzzy blanket and the whirring buzz of my little portable heater. That’s what happens when the bat signal lights up the sky – instead of going out to “save the day,” I know I must stay in. Obviously, I don’t have a very good track record for doing this, but I am working hard to be a better Superhero. Don’t they say that the best way to save the world is to save yourself? Well, most in the city are watching the Pacquio fight, including my parents, so saving the world involves an empty house and I’m thinking, perhaps some popcorn? Watching the French Film, Amelie, is certainly on the menu – it’s the perfect movie to watch when you hear a story like the one I heard at chemo. I suppose it’s expected that I would go home, eyes wide open with fear that, oh my god, that could be me, in that metaphorical tub, waiting, waiting, waiting, for someone who will never come. A previous me would have definitely done that. Instead, I choose the me that would buy one of those remote control bathtubs that Ed McMahon promoted, so that I wouldn’t have to ask anyone to help me out of the tub at all! So to all you lonely Lupies (and general humanoids) – Take showers, not baths! Eat popcorn, watch Amelie (English subtitles, not dubbed, please and thank you)! Rest, sleep, then meet one of your favourite keepers tomorrow morning for pancakes! That’s my plan… what’s yours?