Category Archives: Vanity

My Body, Myself

After my ALS diagnosis was doubly confirmed by UCSF and the Mayo Clinic in Rochester, I decided to send a mass email letting my friends and family know what was happening. Partly, it felt ridiculous to be putting this kind of information in email, but I didn’t know how else to share it. When you give people bad news, you often end up managing their reactions, even if it’s your bad news. That doesn’t upset me; I know how hard it is to say the right thing when there is no right thing to say. But I couldn’t imagine the countless conversations as I explained ALS, my newfound area of expertise.

So I opted for email, and I received a lot of beautiful and thoughtful responses. Maybe people didn’t know exactly what to say, but the notes were heartwarming to read. Many were telling me that they believed in me, that they loved me, that they were shocked. Even hearing that people were speechless felt like a form of support. I knew the feeling of being speechless.

One friend asked if I was mad at my body. It was an interesting question, and one I hadn’t thought about before. So I gave it some thought and decided that no, I wasn’t mad at my body. I felt like this was something that had happened to me, not something that I had done to myself. Fast forward three years and I’m still not mad at my body. I can feel the effort it’s making to work correctly, even as things get more difficult. Read More>

|Categories: Diagnosis, Drugs, Life, Vanity, Venting | Tags: , , | Permalink

The Way Things Are

As a family, our morning routine needs work. Yesterday was the first day of kindergarten, and despite our efforts to arrive early, we did not even manage to arrive on time. Scarlett wears a uniform, I had planned quick and easy breakfast options, Rob was up early to shower. But it didn’t matter, because, not to be dramatic, everything takes us forever.

Today we actually had to wake Scarlett up for school. This child has never had to be woken up for anything, but we were told that kindergarten can be exhausting, and that appears to be a true story. She rolled around for a few minutes before springing out of bed, ready for another day. Oh, to wake up like that. She then proceeded to eat two pieces of toast and a banana as though it were a three course meal that she was reviewing for The New York Times, by which I mean sloooowly. I know we’ll get the hang of this, and I really don’t want to stress her out, but watching someone get ready at a snail’s pace turns out to be one of my least favorite things.

On the plus side, the first day of kindergarten was fantastic. She may have been the last kid in the class, but it was a mellow morning and no one seemed to mind. It was a half day, only three hours long, and Rob and I attended a parent orientation meeting after dropping her off. I spent the rest of the morning sitting outside, getting to know other parents, before it was time for early pickup. Scarlett was disappointed when it was time to leave, which I consider a very good sign.

Chatting with the other moms and dads felt so normal. I really liked everyone and I felt like we were going to be part of a great community. As we left, I was tired but definitely in high spirits. Things are good.

But things are hard, too. Read More>

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

#Whatwouldyougive FAQs

Yesterday, I launched a new fundraising campaign called #whatwouldyougive. I did this because I wanted to create a fundraiser that helped people understand just a bit of what it feels like to be stripped of the basic abilities that ALS takes away. The things that most of us take for granted. The things that I absolutely took for granted until I received an ALS diagnosis when I was 33 years old. I’m 36 now, and even after all I’ve given up, I’m not giving up.

While most fundraisers center around a physical activity that requires ability, this one is about the things ALS takes away. During the week of August 1-8, team members spend a day (or an hour) giving up an ability in an effort to *begin* to understand what life is like for a person with ALS.

Examples: Have someone feed you meals or brush your teeth; type on your phone to communicate. This experience is a fraction of what people with ALS deal with, all day, every day. What would you give in order to live normally again? What would you give to end this disease? Each team member reaches out to their network to raise money around their efforts.

Our team is raising money for ALS TDI, the largest nonprofit biotechnology organization dedicated to developing effective treatments for ALS. With more attention and funding, we can find treatments and an eventual cure for ALS.

Here are a few FAQs to help people better understand the concept and how to get involved. All support is so appreciated! Read More>

|Categories: Life, Research, Vanity | Tags: , , | Permalink