SNAPSHOTS is inspired by the notion that without lived experience, it is often difficult to see more than mere glimpses into the lives of patients, caregivers, and loved ones affected by a particular disease. This collection of images was created in commemoration of the two-year anniversary of Fragmentation, Annie’s Honors in the Arts show inspired by the stories of those both experiencing and witnessing the degenerative progression of Huntington’s disease (HD). In preparation for SNAPSHOTS, Annie reached back out to the patients and caregivers involved in Fragmentation to check-in, catch-up, and try to understand what two years mean in the life of someone embodying a neurodegenerative disease. Though imperfect at best, SNAPSHOTS is an attempt to show more realistic glimpses into the inspirational life stories of those affected by HD.
SNAPSHOTS (shown at Stanford in May, 2016) is the culmination of Annie’s work over the past three years with HOPES, the Stanford Arts Institute’s Honors in the Arts Program, and members of the Palo Alto HD Support Group.
Maureen. We re-did the front yard. That was a big project because we did it all ourselves. Because of the drought, the Santa Clara Water District has a program so if you take out your lawn and replace it with drought-tolerant plants, which is what we did, you get $2 a square foot. And that was 1,000 square feet. 68 plants. I bought a lot of plants, he dug a lot of holes.
That was a big project that took months. All of the plants have square footages assigned. We ended up getting approved but we couldn’t get all of the plants because it was winter. So we had to find substitute plants. It was like a challenge. It was kind of like doing a puzzle – I kind of liked it.
David. It came out in 1983. It’s called Crystal Castles. I’m sure you’ve never heard of it but in its day it was very big. It sold 5,000 arcade units and the game I once estimated was played 400 million times and took in $100 million in quarters in just a couple years in the 80s. That’s a pretty big influence. People who are in my generation all know the game and have all seen it. I can walk up to strangers and they’ll know – that’s my claim to fame.
Lisa. We’re pretty status quo, really. And I guess that’s good. Health-wise, it’s pretty status quo.
Last time I was here, something that really struck me was when you referenced a little book your sister gave you?
Oh yeah, The Precious Present. It’s just this little book [mid-conversation, she went over to the living room bookshelf to retrieve a small book]. My sister gave this to me in 1999. It’s just all about today’s your gift and don’t think about what tomorrow brings and what the past had. I mean we don’t know – no one knows, really – what’s going to happen. It’s a good reminder not to dwell in the past and not to think too hard about the future.
I’m going to have to re-read it.
Robert. What does it feel like to move?
It still doesn’t bother me. My great grand children love it. You know, they’re watching me. They’re not going to play, they’re watching the old man twitch! I realize that for some people it is a distraction…and I love it.
If I can provide some entertainment – good! There’s nothing that’s gonna change. Whether they look at me or not, I’m still me. And I’ve been happy with me for a very long time.
Michael. If you asked me to summarize our conversation, I couldn’t do it. I find that hard and I used to not. Cleaning up, I mean why can’t I clean up the frying pans better? I’ve been instructed many times.
A couple times ago, I was going to a high school reunion and I went to the airport and they said we don’t have any flight today, it was last month. I booked it for last month. I once made a mistake booking and was in an airport for 12 hours because I mixed up the difference between am and pm.
Is that frustrating?
I’m still positive, but I need to have someone check me.
Jim. We were getting ready to do our taxes – TurboTax. I stabilize myself on the door frames and walls and I went to go to the dining room and missed the doorframe. I made a hole in the hardwood floor with my teeth.
[Mary, Jim’s wife started laughing]: This was just in march, so we have the teeth marks in the floor.
Jim: I have a walker now. What else do I have now?
Mary. That’s the other thing – eating and swallowing has changed. He went through a time in the fall when he had a couple episodes of choking when he couldn’t swallow. But he’s calmed down on that. I guess we’ve learned too, to not talk when we’re eating – which we shouldn’t anyways – but you know not to hold a conversation at a meal. Which is pretty boring at times. But yeah, because things do distract him and he needs his space.
You know Annie, I think things are gradual. So you don’t think about it too much. You just kind of adjust for it. Not always willingly, because it is frustrating. But more frustrating for him. I have to have empathy for what he’s going through. I’m not in his skin. And I’ m not the most patient person, so we’re both learning.
Marilyn. We were married for 54 years, had raised two daughters, both college professors, had traveled North America and the world, and were looking forward to even more travel that was not to be.
She was diagnosed with HD in 2010 at age 73, and I became a 24×7 caregiver for her last two years with significant help from hospice and other part-time caregivers. She lost her ability to think, speak, and walk. She was only 65 pounds when she died in 2015. While difficult, frustrating, and fatiguing, I slowly learned that caring for her every need was an honor, not a disagreeable or distasteful task. Yes, it was tough, and I had more than a few moments of impatience and anger, but it was the right thing to do, and in the final analysis, it was a labor of love, truly a privilege.
In the words of Indian poet Rabindranath Tagore: I slept and dreamt that life was joy…I awoke and saw that life was service…I acted and behold service was joy.
All pieces were done in pencil and completed in 2016 by Annie Rempel.