It’s Day 6 of #whatwouldyougive. The observations and insights from the team members have really touched me. It didn’t take long for people to clue into emotions and feelings that I’ve been having for the past three years. I’ll let them speak for themselves, after reiterating how grateful I feel that they took on this challenge. The campaign feels like a success, with nearly 100K raised, and that has everything to do with the team members and donors. THANK YOU ALL, from the bottom of my wheelchair (or perhaps the bottom of something less disgusting.)
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“The most challenging part was that I couldn’t make friends as easily as I normally do. I can talk to a wall and love having conversations with strangers. I just didn’t feel like me! That is the most upsetting part of ALS; people’s personalities, what makes you uniquely you, eventually gets stripped away.”
“Some unexpected things I’ve learned today about not being able to use a limb: it hurts, throws off your equilibrium, and can even make you feel claustrophobic. Multiply that by 2, 3, or 4 permanently and you have the experience of an #ALS patient.”
“During the day I felt many emotions: sad, rude, introverted, inefficient and annoyed. I carried a note around with me explaining my silence. The second person I showed it to (at early yoga) said her brother died of ALS.”
“Today has been a challenge for me, but it’s not nearly enough. It will not be enough until no one has to suffer through this devastating disease. Research matters, funding makes a difference!”
“It’s been about an hour and I’ve not really even been out and about yet, but am learning SO MUCH about the struggle of ALS patients. How will I talk on the phone? (I won’t). How will I help customers at the shop? (point at the items and menu descriptions.) How would I yell “FIRE” or call the authorities in an emergency?! (terrifying)”
“It was really hard. Harder than I imagined. I spent all day wondering how people live with this disease and when we will find a cure.”
“So far I have had my children brush my teeth. Giving specific enough instructions for them to follow was frustrating and eye-opening.”
“Physically it was challenging, but the thing that struck me was how uncomfortable I felt in crowds. Especially the morning rush. It was like being caught in the running of the bulls. And this sounds stupid, but I kept getting annoyed with people asking if they could help me out. I kept thinking, ‘No, I can do this myself. Thanks but leave me alone. Don’t need your help and sympathetic looks.’”
“Today I took James (age 4) to California Academy of Sciences in Sarah’s old hood. I thought about a long walk we took down there a few years ago and a much shorter slower walk awhile after her ALS diagnosis. I observed the freedom I have to chase after James and remember how scared Sarah used to get when she started having trouble walking and her daughter would run down the street thinking it was a game. Tonight I ran 5 miles and thought about Sarah and how she loved to run and how she introduced me to bikram yoga.”
“Tommy (age 6) said, ‘So we just did this for the day.’ ‘Yes,’ I replied. ‘Sarah and people with ALS have to do this every day,’ he went on. ‘Yes,’ I replied. Tommy finished, ‘That’s awful.’”
“Some things require forethought and planning, for which I did not think ahead or plan. Like running out of toilet paper. Or, after fighting through meal prep and service, my one-year-old finishes her food and says, “more.” I eat less, because I don’t want to deal with making food. Imagine the long-term consequences of that. I drink less, because I don’t want to deal with going to the bathroom. Again, think of the long-term consequences.”
“I did not anticipate that it would be Lucia (age 2) that was most disturbed by my silence. She needed me to advocate for her in sharing squabbles and to call out her name when she got turned around and couldn’t find me. At home play was just as challenging as I was unable to praise the wonderful “tea” that had been brought to me or to let my daughter know that I understood the pretend role she had chosen.”
“The hardest part about having someone brushing your teeth is that it’s messy, and I wasn’t able to wipe my face at the onset of the mess. Also, I had to remind him to put the brush back in the water, then back in my mouth, so that I was able to rinse and spit. It’s strange to have to coach someone else through a routine you’ve completed so mindlessly for years.”
“The experience was profoundly educational. One can certainly imagine what it’s like to be handicapped, but one does not have a true understanding of the challenges nor enough empathy until one walks in those shoes.”
“Of course being in a wheelchair doesn’t mean you never get another cup of hot tea. But I am realizing it probably does mean that you don’t always get just what you want right when you want it, even little things. Because no matter how good a planner you are our needs and wants are unpredictable. And it makes me so aware of needing help to do things I would normally do myself. I realize how much I take for granted the ability to control all of the little things in my day to day life, and how satisfying it is to be able to do that. And how much I miss it today.”
Please also read Rob Becker’s story of taking public transportation to work in a wheelchair.
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I am amazed by these comments. They are absolutely on target. As a person with ALS I am so touched that these folks were able to understand what we (I) feel every single day. The most devastating loss for me was noted by the first team member. You lose your personality, those qualities that are uniquely yours, that make you ‘you’. This is a success on so many levels. Go team! Go Sarah! Onward.