Here We Go

Tomorrow is the first day of August, and the first day of the 2017 #whatwouldyougive campaign. I can’t believe that this week has arrived. First of all, when I initially conceived of the idea for this campaign, I thought it would only be a one-time deal. It’s beyond inspiring to see how many people joined, whether to take the challenge of giving up an ability, to donate generously, or to hold our signs and stand in solidarity with the many of us who can no longer stand on our own.

By far, my favorite part of the campaign week is the reactions from those who are giving something up in an effort to understand just a little bit of what it might feel like to live with ALS. Right away in year one, I realized that people were getting it. They were understanding the frustration, the loneliness, the helplessness. They were grasping the concept that life with a sudden disability is not only shocking, but incredibly inconvenient. They were grateful, some tearfully so, when they could use their entire, strong bodies once again. And I loved them for it. Read More>

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

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

Identity Theft

I think Otto might be having an identity crisis. He hasn’t said anything specific about it, but Scarlett changes his name nearly every day and I just feel that this must be confusing. Sometimes she calls him “Sticks” and other times she affectionately refers to him as “Phinneas.” She has spent hours telling him that his name is “Bernice”, and I once caught her chasing him in the backyard with a stick screaming “COME BACK, PROFESSOR!”

In case that thing about the stick alarms you, let me assure you that the professor was having the time of his life.

But really, what’s in a name? An Otto by any other name still farts as much. I guess I’ve been thinking about identity a lot lately, because there is so much wrapped up into what we consider our self, and it’s undeniable that parts of myself are slipping away from me. I’ve never been someone who dwells in the past, at least I wasn’t until I got ALS. Now I look back with a nostalgia typically reserved for someone who has lived twice as long as I have. I have never wanted to go backward, but I would like to go forward differently. I would like to feel more like me.

The writer Gerda Saunders recently published a book called Memory’s Last Breath: Field Notes on my Dementia. I read a review of the book and was struck by the following phrase: Read More>

|Categories: Life, Meditation, Progression | Tags: , , , | Permalink