My little sister has this disease that makes all of her limbs fall off.
Her disease, it isn’t leprosy. One of the first signs of leprosy is that your eyelashes fall out, and hers never did. Also, leprosy does not make all of your limbs fall off. Leprosy is: a chronic disease caused by bacteria, a disease that leads to disfiguring lesions, nerve damage. Sometimes and in some places people suffering from the disease were placed in leper colonies. They don’t really do this anymore, though. Leprosy is not very contagious. We are not sure if this disease my little sister has is contagious, but nobody else has gotten it yet so we’re pretty optimistic. Or pretty dumb, Dad sometimes says. But I mean it’s not like he’d want us to send my little sister away or whatever.
When my little sister was seven and I was ten, her small toe fell off in the bath. It was weird, because Mom and my little sister both didn’t notice until they were draining the tub, and there was this little pinkish stub of something floating in the surviving bubbles. Mom fished it out of the water. It was soft, pruned, fleshy, with a tiny toenail. Mom screamed, and looked at my little sister’s feet. My little sister looked at her own feet, and screamed. The little toe had fallen off my little sister’s left foot.
Mom stopped screaming after a couple minutes, but my little sister screamed all the way to the hospital, the whole time we waited in urgent care, through all of her appointment with the doctor, and the entire ride back to the house. The good thing was the doctors were able to sew my little sister’s little toe back on, but then for the next week my little sister could barely speak she was so hoarse, from screaming for like six hours straight. I guess it was pretty scary, even for me and Mom and Dad, too.
Three months later it was the same thing all over again, except this time my little sister was biking home from school with her best friend Claire, and also this time it was her entire right foot that fell off. It broke off right at the ankle, a clean break like I guess some people sometimes say. This time with the foot it was again with the screaming for like six hours straight, all the way to the hospital and then through her appointment with the doctor, but this time they did not immediately sew her foot back on—something about waiting, and seeing—and they also arranged for my little sister to stay in the hospital a couple days. Since it was the middle of the school week, I went and stayed at my godparents’, but Mom and Dad slept in sleeping bags on the hospital floor so it would be easier for them to meet with the doctors and make sure everything was going OK. My sister was in the hospital for like two weeks, so Mom and Dad were there for like two weeks, too. I started off coming every day after school but then didn’t come as much after one time, I heard Dad make some sort of joke about how the medical bills were going to cost an arm and a leg, and then he and Mom got in this huge fight even though Dad said he hadn’t meant anything by it, really, it was just a stupid thing to say, and Mom said yeah, stupid would be how I would describe it, too, and then they didn’t talk to each other for a while and I felt like I just wanted to leave the whole time I was there.
When my little sister was in the hospital basically what they did was run a lot of tests. The tests didn’t fix anything, and they didn’t solve anything either. We are sorry, the doctors said, but we have no idea what is going on, here. I guess a really weird thing about this whole thing is that when my little sister’s right foot fell off, and when her little toe fell off, too, there was no blood or anything. There were no warning signs, no atrophy, no rotting. Both times it was like the foot or the toe had never been there in the first place or had been separated from the body long ago. And: later, when I asked her about it, my little sister said that both times it didn’t hurt at all, not the moment the foot and the toe each fell or and not after she noticed each was gone, which is weird. I guess I don’t really blame the doctors for not knowing what was going on, because the whole thing was just so weird. Is so weird.
The doctors still don’t know what is going on. But, the doctors say, at least now you can anticipate things. And isn’t that some small comfort? They don’t sew my little sister back together anymore, after the time her right hand fell off and they reattached it, and then like ten days later the entire arm went. The whole thing just seemed so pointless, the doctors said, and Mom and Dad agreed, and my little sister agreed, I guess. I don’t know if I would’ve agreed. But my little sister has always been much more easygoing than me in this sort of situation.
After my little sister had lost her right arm, and also (already) her right foot, her (again) left little toe, and her left foot, it seemed like everyone had given up on science. Mom turned to prayer: every morning she would, she said, have a conversation with God, although she never asked God why all this was happening, like I asked her to ask. Dad quit his job to help take care of my little sister full time, and when I would come home from school he would be looking up alternative cures on the computer, although there never seemed to be anything homeopathic for all your limbs falling off. It didn’t make sense, that everyone had written off doctors so fast. One night, while Mom was cooking dinner, I asked her about it: Hey mom, I said, have we ever looked into leg transplants? Or arm transplants?
Because I was kind of curious, and felt sort of strangely guilty like I sometimes do. Because I’ve got all my arms and legs, right down to the fingers and phalanges. Mom was putting broccoli on the stove to boil, and also I think praying because even though the TV was on some news special about child molesters she wasn’t looking at it and was sort of staring warmly into space and moving her lips, a little.
What? said Mom.
Well, couldn’t we find someone to give my sister an arm or a leg?
Mom stared at me, and it felt like I’d said something really idiotic.
I mean, I said, I’d be willing to give her one of mine?
Which came out as a question, and suddenly Mom was all kindness.
Jenny, she said, sweetie, she said, I know where you’re coming from but that just wouldn’t work because, you know, if you gave her one of your hands or something, then you wouldn’t have that hand anymore yourself, and we’d be in exactly the same place.
And I thought, isn’t that how gifts and things usually work? Sometimes I have dreams about slicing off my fingers with a hacksaw, or dislocating my legs at the hips. I sleep with my arms above the covers, so that if I ever wake up in the middle of the night I can see right away if they’re still there. Because, see: I don’t want to give these things up, but I think I probably would.
With the disease my little sister has, most things you’d want to keep fall off, and each time without warning. When she was eight, my little sister’s left foot also fell off, and then her left leg and (then, when she was nine) some of the fingers off her left hand. The pointer finger fell off in the classroom, while she was practicing long division on a January morning. Without her pointer finger, she had to find new ways to hold her pencil.
The pinky fell off in the summer, at a picnic, in the middle of a game of hide and seek, and my little sister didn’t say anything about it until we discovered her hiding place. We found her last.
My little sister is eleven now, and I am fourteen. When one of my sister’s extremities or appendages falls off, we wrap it in plastic, and store it in the extra freezer we have in the garage. It seems sort of cruel or something to keep all those necessary parts so near to my little sister’s old bike, soccer ball, skis, but we do. It’s not like we’re saving them for anything, but Mom says it’s nice to know everything is there, which I guess is sort of true. What Mom and Dad and my little sister don’t know is sometimes I make excuses to go out to the garage. I take hands and legs and toes out of the freezer and hold them in my arms. They are gummy and frozen and frightening all at once. At school, I told Spencer Morrison about the freezer and he didn’t believe me, so I invited him over. I took him into the garage and I showed him everything and I think he was pretty freaked out, really.
Once when we were home alone my little sister asked me if I thought that once she got boobs, whether those would fall off too, and I said I didn’t know because I didn’t.
When my little sister’s last limb falls off, when she is torso and head, I’m going to carry my little sister down to the beach. Mom never lets her go swimming because she says it wouldn’t really be safe to go out into the ocean with anything less than two arms and two legs so as to keep yourself from getting carried away, what with the riptides and all. I don’t know that my sister really cares, because even when she had all her limbs she hated swimming anyway. But when her last limb falls off I’m going to carry my little sister down to the beach. I will carry my little sister across the parking lot, across the sand, and down to the water. I will wade out into the water, holding my little sister, and we will stand up to our necks in ocean for a while, at least until my arms get tired.