Category Archives: Life

#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

Three Nights

Wednesday: We went to the emergency room because every time I coughed, I ended up choking and it was freaking me out. I couldn’t seem to get the cough out, only push it back where it came from and make myself feel even worse. It was a little like early labor in childbirth; I ignored it for as long as I could until it was clearly time to seek professional help.

Rob was on a work retreat, so my sister drove me to the ER, with Scarlett in the backseat running a constant commentary, and driving me nuts. I was concentrating so hard on breathing. When we got to the hospital, I went ahead, while Liz handed Scarlett off to her Uncle Rob. The ER was half-full when I rolled in, with one person ahead of me at the window. I felt awful. I knew I had to cough, but the prospect had become terrifying, like filling my throat with glue and then trying to breathe around it.

A Dr. walked into the room. “Mrs Copeland?” he said, looking around. I caught his eye and made the universal sign for choking. “Mrs. Copeland?” he said again, this time to me. I shook my head, indicating that I was having an emergency. “Oh,” he said, and walked away. “You’re okay.”

When Liz walked in, she dealt with a ridiculous check-in process, all the while trying to contain her anger as she kept repeating my sister has ALS and she can’t breathe. Read More>

|Categories: Doctors, Drugs, Life, Meditation, Parenting, Progression, Vanity | Tags: , , , , , | Permalink

Unsent

Dear ____,
I was thinking of you today, and thinking of myself, too, in that sort of unattractive, self-pitying way I sometimes do. Don’t you just want your life back? I want my life back so desperately today. I realized something recently: spontaneous acts of affection are slipping away from me. Not all intimacy, that’s not what I mean. But the little things, the things that feel much bigger once they’re gone. To stride across a room and embrace someone just home from a trip. To reach out and squeeze someone’s hand, a quiet connection. Even to completely and totally invade someone else’s personal space while you’re watching television, so that for the duration of the show, you’re not quite sure where you end and the other person begins, and you start breathing at the same pace because it’s just easier that way.

If I could have full command of my body again, I would positively spin across the floor when the front door opened. I would take a bath, my toes flexed and my hair spreading out behind me like a mermaid’s. I would stand in my closet getting dressed, and I would pile my wet hair on top of my head in a bun, and I would pour two glasses of wine.

I miss my life. You know what I’m talking about, ____. There’s plenty to be happy about still. We do make the best of things. But right now I’m tired of compromising. And you’ve been doing this for so long. How? How do you keep your frustration from spilling out, forcing the ones you love most to back away so they don’t drown in it?

I still have my little person. Read More>

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