(Chapter Excerpt – The Interior of Their Hearts)
Once I started feeling horrible enough, I began to reconsider the Rebif. It was sitting at the bottom of our refrigerator, and at last, I knew it was time. I called the doctor’s office, and I scheduled my training. I knew there would be flu-like symptoms. The directions were to start off small and increase the dose each week. Like the Copaxone, the Rebif had an auto injector, which meant that you load a plastic sling shot with a needle, press a button, and wha-la, your medicine is slammed into your unsuspecting flesh.
I didn’t tolerate the Rebif very well, and I kept feeling like my chest was constricting. I had the stomach flu almost every day. But I didn’t want to give up on the new medicine so easily. Eventually, I ended up manually doing the shots so that I could control the dosage. You never think you can give yourself a shot with a needle 5 inches long, until you have to. Then you do it.
If there’s one thing people should know about MS, it’s that those who have it also have a low tolerance for bullshit. It’s probably true of any life-altering illness. I already had a low tolerance for it, but it puts things into a whole new perspective. You see, I’m sitting at the party, thinking about plunging a needle into my thigh, whether the ice packs are cold enough, whether it will bruise too much to wear a bathing suit, whether I’ll make it home early enough to get ten hours of sleep, how long I’ll be able to walk. So the shallow conversations about makeup and beer tend to lose my attention pretty quickly.
When you have to make decisions that can save your life on a daily basis, you grow up pretty quickly. I try to forget about them, but they creep back in, reminding me of my medicine waiting at home, of the refill at the pharmacy, of the doctor’s bills stacking up on the counter. Yeah, it hurts to plunge that needle into my skin, but it hurts a lot more to see what happens if you don’t.