Miss Rumphius [or: How I Learned to Stop Worrying and Start Fighting Cancer] (December 14, 2022)

 

I want to thank everyone who donated to the Facebook and email fundraisers (https://secure.givelively.org/donate/pheo-alliance/donate-to-support-your-pheo-para-phriends-on-giving-tuesday/bessie-lewis) for the Pheo Para Alliance in honor of Scott. The response completely blew me away - we raised just over $3,000 between the two fundraisers. The total Giving Tuesday donations for the Pheo Para Alliance was about $9,000, and the fact that Scott's fundraiser alone raised a third of that amount warms my heart so much, and I think it would have meant so much to Scott. $3,000 may not seem like much, but it makes a tremendous difference for the Pheo Para Alliance which is a small organization run mostly by volunteers. These funds will allow them to provide information and seminars to educate patients and their families on pheo/para symptoms and treatments. Because the symptoms are often general (anxiety, high blood pressure), it can be very difficult to diagnose this condition correctly and there is even a need to educate doctors about it.

My path to doing this fundraiser was long and unexpected. When Scott was sick, I knew that I wanted to do something to support the pheo/para community and research, but all of my time and attention were laser focused on getting Scott treatment and spending as much time with him as possible. After I lost him, I was in a fog of grief and needed time to recover and process all that had happened (which is still ongoing). The goal of "fighting cancer" seemed absurdly naive. But I knew that I needed to do something, because the thought that someone else might live what we went through is unbearable.

At around the 6 month point, I thought that maybe I could start with something small, but I still didn't know what that could be. Everything felt daunting. Strangely, it was a children's book called "Miss Rumphius" that kicked me into action. I loved the book as a child, and I have a copy in my library. It's about a woman named Alice Rumphius who follows her dreams, travels the world, and settles in a house by the sea in Maine. But she feels the need to do something to make the world a more beautiful place and decides to scatter lupine seeds throughout the town. (Yes, lupines are an invasive species, but let's just set that aside for now and appreciate that they are pretty flowers.) It's a beautifully illustrated book, but it also seems bittersweet because Miss Rumphius never marries or has a family. It's possible that I'm projecting the melancholy though, because Miss Rumphius seems perfectly fine with it in the book.

Anyway, when I was in Boston over Thanksgiving, my sister and I were in a bookshop and we saw the book on display. She read it and agreed that it was beautiful but bittersweet. The next day, I was on a flight back home and noticed that the man sitting in front of me with his wife and  kids was wearing a hat that said "The Rumphius Foundation." I thought that the name was unusual, so I asked them if there was a connection to Miss Rumphius. The wife told me that her father had started the foundation to make the world a more beautiful place, and it was inspired by the same book which he loved. Later I looked up the foundation's website (https://www.rumphiusfoundation.org/) and learned that the founder had died of cancer in 2013 and started the foundation that same year. He was very environmentally minded and gave grants to support sustainability as well as community and education initiatives. I thought it was inspiring that he had, in his own way, scattered his lupine seeds to make the world a more beautiful place even after he was gone.

That was the Monday after Thanksgiving. The next day was Giving Tuesday. As I walked out of the airport, I decided to start a Facebook fundraiser, which I had never done before. Later I added the email fundraiser as well. I did not have high expectations because I knew that the Pheo Para Alliance was a small organization that nobody had ever heard of, but even a small amount would make a big difference for them and I figured that any dollar raised would be more than doing nothing.

So, that's what led me here. After Giving Tuesday, I spoke with the Pheo Para Alliance's executive director about volunteering for other efforts in the coming year. There may be other ways that I can help fight cancer in a small way. It still feels daunting, but I have to try.

Thank you all again so much for your support. The fundraiser will stay open for one more week. Whether you feel inclined to donate or not, I wish you all a happy holiday season filled with peace and love. You all have made my world a more beautiful place.