The 4th of July – ALS Style!

This is a photo I took on our cross-country road trip just before we crossed the Mississippi River.

Ever since we adopted dogs, I haven’t been a fan of fireworks. They terrified Malka, our dog who passed away on September 26th, which was surprising because she was a fierce protector. She used to huddle with our other dog, a chihuahua named Pickle, to hide from the fireworks. We’re not surprised Pickle is afraid, though. As Evan says, we raised a coward. Here’s a picture Malka and Pickle huddled together. By the way, our bird Jasper is a saint during fireworks.

Pickle always got to be the small spoon.

Now that you know how our pets celebrate, it’s time to hear my idea of how to celebrate the fourth, and to me independence means a cure! Let’s start with getting me off life support – goodbye ventilator! No more food pump for my feeding tube pushing food in my stomach 24 hours a day. I want to EAT!

I will start with enchiladas from Los Gorditos in downtown Portland next to Powell’s Books. Then Thai food and falafel in the huge city block of food trucks. I will finish with Indian and Ethiopian food before heading home where Evan will make all my favorite dishes. I will end the feast with a nap with Evan.

And since I’m cured, we might as well imagine my nerves have regenerated so I can cuddle with Evan during my nap. Our last hug was 7 years ago! I want to hike and climb. We once climbed a 50 foot cliff in Great Falls, Virginia. I was strong! I want to dig for fossils and row Carlos the red canoe at sunset, splashing Evan and singing all the while. I want to drive for hours and hours on a thousand road trips. We did four major road trips, but my favorite was our cross-country trip. We went the northern route to end in San Francisco, but I want to do the southern route, too. I want to see and do everything!

Happy fourth of July!

Here’s a picture of us in Carlos the red canoe setting out for a sunset paddle on the York River in southern Virginia.

2 thoughts on “The 4th of July – ALS Style!

  1. Derek says:
    Derek's avatar

    Hi Rachel. I’ve been reading your blog, and so much of what you’ve written reminds me of an online friend who was diagnosed with ALS a couple of years ago. Like you, he was diagnosed when he just as he was starting a family. This is such a terrible disease that has unfairly robbed so many families of potential memories and moments.

    I also follow Brian Wallach on Twitter. Hearing from him and you reminds me to be more grateful for every day, and not let small frustrations get the best of me. Your posts about your family make me think that I ought to treat my family members better. Show them I’m grateful; be kinder. Time is short for everyone; some just realize it more than others.

    Sending you hugs from California.

    Like

Leave a reply to howilivewithals Cancel reply