Tag Archives: whatwouldyougive

Fruit Good. ALS Bad.

I wouldn’t call it Writer’s Block exactly. That implies that I’m sitting down and making an effort to write. Instead, I think what I have is more commonly known as Trier’s Block, wherein a person does not even pretend to attempt to write. It’s not that I’m just sitting here making murder eyes at Otto. I’ve been reading a lot. I finished a book yesterday (Today Will Be Different by Maria Semple. Although I loved her first book, Where’d You Go Bernadette, this one is a skip for anyone looking for recommendations). Today, I’m reading Good As Gone. That one is better. I’m keeping up with all of the news, as abhorrent as most of it is. And I’ve been focused as usual on my Google alerts for ALS, which let me know what’s going on in the great world of this rare disease with which I have been blessed.

And that is why I’ve recently seen a couple of studies that make my cranky motor neurons want to fight someone with their flailing little neuron fists. (I’m not a scientist, so I can’t confirm this is possible.) The first was a study showing that smoking cigarettes is bad for people with ALS. Wow. Some real critical thinking must have gone into that one. I hope that absolutely no money went into it, but that’s clearly wishful thinking. The second study, which is in the news today, suggests the very provocative theory that fruits and vegetables would be beneficial for people with ALS. I already said WOW, didn’t I? So this time, let’s see, the word I would use is… Do you think we’re idiots? Who on earth is spending money on stuff that proves what the average kindergartner is already aware of? Why would smoking cigarettes, which is proven to be good for exactly ZERO people, be any different for people with ALS? Read More>

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

Perspective or Something Like It

I am hiding inside a holiday week, refusing to accept that I have responsibilities and obligations. Yesterday was Columbus Day and tomorrow is Yom Kippur, and so Scarlett is off school until Thursday. This makes it hard to blog. It makes it hard to do anything really, because after yet another night of no sleep (courtesy of ALS), I am home all day with Scarlett and Otto, and they are conspiring against me.

Actually, that’s not fair. I am, after all, describing a six-year-old and a puppy. But I am in charge here, with a body that doesn’t work. So the situation doesn’t work. I tried to read to Scarlett earlier, but I got tired after a few pages, and her new Harry Potter book, a gift from our neighbors, is not short. It’s so much fun to read with her, to do my terrible British accent, to explain to her how this book is different because it is in fact the script for a play. But when I can’t manage more than one act at a time, she grows bored, and wanders off to cause trouble. The latest: writing all over the wheelchair ramp in our garage. The whole space has been graffitied, the inside of her heart spilling out onto walls and floor. Otto, Harry Potter. Something that I’m pretty sure says Kill Malfoy.

I am annoyed, and I snap at her, while secretly blaming myself (maybe if I could open a door to monitor her activity?). I know it’s not my fault. Just like it’s not technically my fault that my husband hasn’t slept in weeks, even though it is my body that is causing the problem. I try to parse this issue: I am not my ALS. But in the middle of the night, when we are tired, when he is adjusting my body for the fifth time, when my ankles feel like they are going to explode, when he says “we can’t keep doing this,” it feels like it’s about me. It feels like I should fix it, but I don’t know how.

Then there are the wonderful things. My friend Ava turned 10 this month, and instead of gifts, she asked her party guests to donate to the #whatwouldyougive campaign. Donations in Ava’s honor have been pouring in. I am so proud to know her. She is compassionate, well spoken, confident and kind. Happy birthday, dear Ava, and what a special person you are to use your day to think of others. I love you, honey.

My brother’s girlfriend Emily works at a restaurant in Chicago called Dove’s Luncheonette. They organized a fundraiser around #whatwouldyougive, donating a dollar for every chicken they sold in the month of September. They raised nearly $1000 for ALS TDI and donated it to the campaign last week. This was unexpected, and very much appreciated. I am loving how creative people have been, and how generous.

So I try to focus on the good things, even when it’s a challenge. Scarlett and I spent yesterday morning in the hospital, getting her cast cut off, because she had submerged it in water the day before when we went to the pool with my sister and her family. Rob tried valiantly to rig up a protective cover so that she could swim, which involved duct tape, medical tape, and a seemingly robust cast wrap that is probably intended only for use in the shower. Scarlett dove into the water, and the plastic filled up.

“It’s no problem,” the physician assistant told me when we arrived at her office. “It’s been four weeks and the cast is probably ready to come off anyway. We were conservative in our estimate of six weeks.” She cut the cast off, and both Scarlett and I were relieved to be done with it.

Then they took x-rays, and when the PA came back, she informed me that the cast was not only going back on, but would need to be on for an additional four weeks. “The fracture was more serious than we thought,” she said, “and it isn’t healing the way we were hoping.” Just like that, I went from great mood to bad mood. And the same thing happened again today. Scarlett and I went to a flower shop where she created a gorgeous bouquet, blues, yellows and pinks. The whole thing made me happy. And then we got home and saw her fancy penmanship all over the ramp. I plummeted again. I’d like to think I could handle the ups and downs of the day in a more graceful manner, but the ups feel so precarious, the downs so inevitable. It’s like an exercise in trying to escape my disease, but realizing over and over again that I can’t. And everything is a reminder.

Occasionally I consider texting Rob the status of my moods during the day. Things are really going great, I imagine writing. And then 15 minutes later I quit. I can’t do this anymore. And then 30 minutes later How is this my life? But I don’t text. I don’t need to take him along on this roller coaster anymore than I already have. Besides, how would I expect him to respond? I might get a return text simply saying so sorry, and my curdled mind would read that as you’re on your own.

I’m not on my own. I’m well aware of this, because if I was truly on my own, I wouldn’t be holding a computer, I wouldn’t have had lunch, and I would probably be sitting in pee. So there is our final thought for the day: things must be okay. I’m not sitting in pee.

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

Too Beautiful

150K, people. That is what we have raised through the #WhatWouldYouGive campaign. It’s amazing. The idea was that the campaign would run through August, but we are going to keep it rolling, because no one in their right mind turns down money for a cure. We’ve also seen some late additions to the team, and feel like the fundraiser is still full of momentum. I want to thank all of our team members for their incredible efforts throughout the summer; we absolutely couldn’t have done it without you. For our new team members, and those still actively fundraising, a big thank you to you for joining and being a part of the inevitable end of ALS.

I also owe thanks to our more than 1500 donors, who gave selflessly and generously. My family and I are very happily overwhelmed by all of the support and empathy that you’ve brought to the cause. It’s true that right now there is no effective treatment for ALS, but I’m not exaggerating when I say that reading the notes from donors, both those I know well and love, and those I’ve never met, has definitely made me feel stronger and more able to stay positive.

In the realm of other things that make me happy, Read More>

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