Category Archives: Relationships

To My Nephew On His 5th Birthday

Dear Jack,

The first thing I thought when I woke up today was that you are five. FIVE. That means it was one whole hand ago that I walked into your delivery room, commandeered the video camera, and proceeded to document your birth. It was one of the most amazing moments of my life. As your mom and dad were falling in love with you, I was falling in love with you, too.

You had giant eyes and even bigger cheeks, and you were absolutely perfect. I didn’t stay long after you were born. I wanted to give you three some privacy. Or rather, I should say I wanted to stay and stare at you forever, but it felt like I should give you some privacy. I drove home and walked up two flights of stairs to where Scarlett was asleep in her crib. I told Uncle Rob everything about you. Everything about your brave and incredible mama and your rockstar dad. I told him how it felt to watch someone come into the world and to know that they are quite suddenly one of the most important people you will ever know.

Fast-forward five trips around the sun and I feel so lucky that I’m still in your life. Read More>

| Categories: Age, Life, Relationships | Permalink

Mom’s Week Off

It is Day Four in San FrancIsco without Scarlett. In many ways, I’m doing better than I thought I would be. I’ve been sleeping in, which never happens when the small human is present. And Rob and I have been having very mellow evenings, with no one popping out of bed 17 times because they “have to pee/get water/hug Otto/learn how the BiPAP works/look in the refrigerator and consider the following day’s breakfast.”

We’ve even been able to watch HBO’s The Defiant Ones at a volume loud enough to hear, without worrying about a little voice calling from bed, “What are you watching? Did that person just say fuck? Why did he say fuck?” And you know the answer “Because he’s Dr. Dre.” probably won’t suffice.

Parents who are smarter than me, and there are many of you out there, probably already knew that having your kid away for a week can be relaxing. I have intense moments of missing Scarlett, and a couple of nights I’ve had dreams that she is a toddler and we are dancing together, buzzing like bees inside a preschool room that I have never seen in real life. I wake up desperate to hold her. But there is stress relief in knowing that your child is well taken care of, and that the responsibility for her resides entirely with someone else, if just for a few days. I have, for example, not even considered grocery shopping. Read More>

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

I Want You To Know

Hi. It’s ALS Awareness month, and to commemorate the occasion, I thought I would share some things I’d like you to know:

1. ALS progression differs from person to person. Some people progress so quickly that they are gone within months. Others live for decades with the disease. My own progression is somewhere in the middle. The latest change is in my right arm, which has been very weak for a while. But now it’s not strong enough to get back on the armrest of my wheelchair if I move it off to do something crazy like read a book on my iPad. That means that I have to constantly ask for help moving it back to the armrest so that I can adjust the position of the wheelchair or drive it. It’s one more hit to my independence, but with this disease the hits just keep on coming. It’s kind of like The Beatles, only bad. Unless you don’t like the Beatles, in which case I guess it’s exactly like The Beatles.

2. I’ve been living with ALS for six years, even though for one of those years I didn’t know it. Normally I have a pretty good imagination, but I find it hard to picture what my life would be like if I had never gotten sick.

3. ALS means that it’s very hard to live normally, but I try to do it anyway. Yesterday, I wore bright red lipstick and met friends at an art gallery downtown. I couldn’t see the pieces on the second floor, because there was no elevator. My friend Mary fed me at a table intimately set for 12, surrounded by colorful canvases and glossy sculptures. One painting just had the big word YES in silver glitter. The whole thing made my day. ALS does limit me, but not as much as you might think. Read More>

|Categories: Cure, Drugs, Life, Meditation, Progression, Relationships, Research | Tags: , , , | Permalink