Category Archives: Relationships

When the Giving Gets Good

Who wants to talk about #whatwouldyougive?

Trick question! This is my blog, and we’re going to talk about whatever I want to talk about. And this particular post is long overdue. Part of the reason I haven’t been talking about the campaign is because there is almost too much to say. August was a huge success for us, and our incredible team members brought in 170K, a number I can barely believe. As many of you know, our goal is to raise 250K for research at the ALS Therapy Development Institute in Cambridge, Massachusetts. These brilliant folks have a  promising drug that can go to trial in 2018—but not without help.

What you may not know is that our campaign isn’t over yet. We launched the second wave of #whatwouldyougive this month, and it’s a big one. We are partnering with hundreds of social influencers (Bloggers, Tweeters, Instagrammers, and more) to raise further awareness about ALS and our efforts to find and fund treatments and a cure.

How does this work? Read More>

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

Don’t Even Think About Trying To Escape

In July, my family acquired a new assistive device called the Hoyer lift. It looks like a torture machine with its dangling chains and numerous metal bars. I half expected it to work the way the machine in The Princess Bride worked, with me as a whimpering Wesley watching the six-fingered man turn the dial up to 11.

I think I’m mixing up my Christopher Guest movies. Also the lift doesn’t work anything like what I described above. Obviously.

As an aside, any time we watched The Princess Bride in my family when I was growing up,
my brother and I would tell our sister that the creepy white-haired dude from the pit of despair was her husband. That’s just the kind of nice kids we were.

The way the lift actually works is that I am rolled onto a mesh net every morning, and my dress is pushed up to my lower back, leaving my bare ass hanging out of a hole in the net so that I am able to use the toilet. It is the height of dignity. But it’s also critical, because lifting me manually takes a toll on my caregivers. I will happily swing around in a perverted hammock if it means taking better care of the people who are taking care of me. Read More>

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

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