Category Archives: Life

My Favorite Helper

Rob is out of town this week, and I decided to go it alone (with Scarlett) for three nights. This was no small decision. Though I used to love a night or two on my own while Rob traveled for work (think cereal for dinner and bad tv), there are now so many details to think through, and so much planning required, that it’s become more stressful than fun. In a practical sense, it would be easier to have someone stay at the house with me, and there is no shortage of people who would be happy to do that.

But I want to do it myself. I want to have dinner with my daughter, give her a bath, read to her, put her to bed, and watch crap TV until my own bedtime. I want to be the one to guide her back to her room when she wanders out at 10pm, lost in the sleepy confusion of a dream. Am I being independent or stubborn? Probably a bit of both.

Of course, I would never put Scarlett in a dangerous situation. Here’s the main reason that it’s possible for me to stay home with only a 4-year-old to help with the tough stuff: because she can help. Read More>

|Categories: Life, Parenting, Relationships | Tags: , , , | Permalink

Speed4Jay

When I was first diagnosed with ALS, I wasn’t sure I really wanted to talk to anyone else who had it. I was in shock, and I wanted to hold everything close to me, including my particular situation. But as time went on, and my disease progressed to the point where it was affecting many aspects of my life, I realized that I needed support from people who truly knew what I was going through. I tried to ask a few questions at ALS forums online, but I found the responses to be harsh and negative. I asked my doctor to introduce me to other patients who were young and who had kids. And when I wrote an essay on parenting in The New York Times, people with ALS reached out to me.

I struggle with the words to explain what it has been like to find people who are also experiencing this disease. Our lives—and even our symptoms—are different in many ways. We are spread out across the country. We wouldn’t know each other if not for ALS. But now we are going through this, apart-but-together, and it’s a source of comfort to know that. We can ask each other questions, some of us can talk on the phone, others send notes of support and encouragement. Sometimes we are angry and we can just be angry together. Read More>

|Categories: Diagnosis, Doctors, Life, Parenting, Progression, Relationships | Tags: , , , | Permalink

Back to the Clinic

I had my regular ALS clinic appointment last week. I go every three months, which is recommended based on my level of progression. It’s not an uplifting place, but I’m learning to prepare myself and to control my reactions, regardless of what the clinicians might tell me. Having Rob there is crucial. The one time he couldn’t make it is the one time I ended up sobbing, and it took me a week to get back to normal.

Here’s how the appointment goes. I start out by getting weighed. That means wheeling my chair onto the scale to get the weight of both of us. Then I hop out (just kidding! I get out slowly, with help) and they weigh the chair alone. This brings to mind a new mom weighing a baby by holding it in her arms, and then weighing herself without it, and that thought leads to another thought and then another and I find myself wondering what I would be doing right then if I didn’t have ALS.

Then the nurse comes in and asks a series of questions called The Functional Rating Scale to determine how far I’ve progressed since I was last there. Yes, that’s right. They’re asking me. Read More>

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