More Somber Than Usual

You know I love to eat. It's how I have fun, and it's not just me, it's a familial characteristic. It often feels strange to blog about light, happy things such as going to restaurants or being pregnant without ever mentioning the darker sides of life. So today I'd like to write about the fact that today my dear sister, who was diagnosed with ALS about 14 months ago, had a feeding tube installed. It's to prepare her for the fact that she is losing the strength to chew and swallow.

To write on a serious topics requires time for digestion of fact and space for personal reflection on feeling. It's actually sort of the opposite of blogging. While I know it's too soon for me to be able to effectively parse thoughts and feelings on this with any sort of emotional distance, I want to try.

If you are personally unfamiliar with ALS, or Amyotrophic Lateral Sclerosis, may you remain so. It's not productive to play a game about "what is the worst disease," but if we were to play, I cast my vote for ALS. Famous for killing Lou Gehrig, and Charles Mingus, and afflicting Stephen Hawking, it's a fatal, degenerative neuromuscular disease that takes the lives of its victims, but only after systematically robbing them of control. In Beth's case, first speech, then the ability to walk, then use her arms, and soon enough, eat. But that physical description doesn't touch some even truer losses -- the lack of power scratch her own nose, or have a sip of a drink when she'd like one -- without first struggling to communicate her needs to another person, who must help her, on their schedule, rather than hers. It doesn't talk about the fact that she is watching her kids watch her die, without the ability to wrap her arms around them to hug them.


Early in 2007, Beth noticed that she was tripping on her words, but at first it was slight. She'd ask whether I could tell and I couldn't -- I was sure she was just in the midst of one of those situations where you become hyper aware of one thing, like the size of your tongue, or how weird swallowing is.

Then she would mention that her eye was twitching. "You need more sleep," I'd say. Beth is my older sister (my only sibling) and she has 2 amazing kids -- one of whom was in the thick of being six years old. He looks like an angel but has an energy level that gets my eye twitching just thinking about him. Her baby girl was about a year and a half at the time, and had recently started to walk. I could not imagine the mom to these 2 kids not needing more sleep!

Though I wasn't concerned about her eye twitching, per se, some other comments she had made over those months did have me worried. In the course of our normal phone conversations, she told me about falling several times. Once was in the driveway, while holding the baby in one of those infant carseats that snap out so you can carry them. Thankfully, Beth and Baby were both ok, though Beth got a significant bruise.

She also fell, at around that time, at the party of one of her friends, walking out onto the back deck. It seemed to me that the stories were beginning to stack up, but she didn’t associate the falls with a lack of balance, or with what was starting to become a slur. She was carrying too much. There was a step she didn't see. She was on a hill and she lost her footing.

I started to read up on MS.

In a very unusual coincidence our cousin, who happens to be a neurologist, left a practice in New York and moved to Connecticut. He and his wife, a nurse, took over a neurology practice about 20 minutes from my sister's house. I don't want to get into a discussion about how doctors don't always advocate for patients, let's just leave it at the fact that I don't know how people function without a medical person in the family when something goes truly wrong, and you can't get in for weeks, or you can't get someone to really listen to you. With the current state of healthcare, you can't get someone to care about you.

Beth talked with our cousin about her symptoms and he started ordering tests. He found some nerve compression but nothing that pointed necessarily to ALS. (It's my understanding that ALS is often a diagnosis of exclusion.) As weeks passed, her slur increased. She was increasingly worried. She'd been reading and she began to be very afraid.

We were planning my wedding then. Beth was my Maid of Honor and one day we were looking at a hotel where we thought the guests might stay. At the front desk, they gave us some keys to a sample room. On the way up to see it, we were in an elevator with some other people, and because she has always been the gregarious person in an elevator, Beth made a cheerful enough comment about the slowness of the elevator. Hearing her speech with other people in attendance suddenly made the change seem much more dramatic. "They think she's disabled," I thought. That was May.

Weeks passed, and she started experiencing other "fasciculations," or twitches of the muscles in her face. At around that time, Beth went to a bagel shop with her son on a weekend morning, where they sat while he worked on a school assignment. A woman getting her morning coffee -- apparently thinking my sister was drunk because of her slur -- told her she was a terrible mother, and that she needed help. Then the woman stomped out. Another person approached my sister's table to say that she agreed.

There isn't a definitive test for ALS, but one, an EMG, and don't quote me on this, shows the firing of the muscles and whether it's normal. (ALS is a degenerative nerve disease that causes weakness and twitching.) The EMG looked okay initially but our cousin sent Beth to an ALS clinic he'd worked at and on that day, July 13, 2007, came the diagnosis.

About a month later, she fell and this time, did hurt herself. She broke her leg so badly that the bone nearly poked through, and spent time in the hospital and then 6 weeks in an intensive physical therapy rehab. At that point, we didn't know whether she'd make it to my wedding, though she made it a goal. She came to the wedding, but she never drove again. Nor has she walked without a walker.


I live more than 100 miles from my sister and see her every few weeks. I dream about her all the time, and in my dreams, she is "sick," or there is the sense that she is not healthy, but she seems fine in the dreams. Her voice is normal.

'Til she lost the power to speak, the voice was the same as mine, to the degree that for years, if one of us called home and just said "hi," our parents wouldn't know which kid they had on the phone.

Having a sister -- maybe any sibling, I don't know -- is a little bit like having a mirror. It's the person who is most like you, in a certain sense, at least physically. Beth can get tan while I cannot and the quality of her skin is a little smoother -- maybe it's the melanin or perhaps because she's always been more likely to moisturize than I am. But to look at her arms: her arms are a little darker, the freckles are a little smaller, the bones are a little more delicate. But her arm is the most familiar arm in the world to me other than my own. We carry weight a little differently -- now, weight is falling off of her. It has always been painful and a little embarrassing for me to see Beth cry, because in a way it's like looking into a mirror and seeing myself cry.


One day, in the summer of 2008, we went to a pool so she could have physical therapy in the water. Beth loves nothing more than swimming and the water.

I wheeled her onto the humid tiled pooldeck, so similar to the one at the high school where we'd have swim lessons, then later, practice, as kids. A physical therapist came over to help her get into the water. Instead of one of the normal caretakers, she had a different person with her than usual -- me. One of Beth's most salient characteristics is her friendliness. She always tries to make people comfortable, and she needed to introduce me to her physical therapist. "This is my sister," she told the physical therapist, who couldn't understand what she was saying. She just shook her head. Moments like this drive Beth crazy. "This is my sister," I told the therapist. It's like a palindrome, the same if you say it either way.

This is my sister. We share so much, yet I can't help with this at all.

With the hazards of choking getting greater every day, she chose this time to get the tube installed in order to stave of choking and to help her get the nutrition and hydration she needs. So many of my memories are tied to my sister, and so many are tied to food. A bottle of cream soda in a case, a single orange tic tac on the ground, the shakers of hot pepper in a pizza restaurant. Any of these things are part of my taste memory of my sister. I hope she can keep her taste memories for a long time.