Living on the Fringe

My Christmas Cactus must know that I need a little Christmas, right this very minute. She is blooming full force. She does her spring and summer on the oasis. I just try to keep her going until she can go back outside next spring. I guess I am just trying to keep me going until, well, I don’t know that answer. I feel that I am in the midst of a challenging period of growth. Those are always tough until I come out better on the other side.

I have always felt like I was on the fringe of society – not an outsider, but certainly not an insider. I had friends at school but that did not really translate to people to hang out with after school and weekends. Same at college. Same at every workplace. Oh, I can point to reasons beyond the obvious social awkwardness. I have always needed quiet to process and sort life. That is difficult for some to understand. I enjoy solitary hobbies like playing piano and organ. Yes – I can play in front of many, but most time is spent practicing alone, my favorite kind of playing. I was always surprised to hear when most co-workers went to an evening or weekend outing of which I was unaware. At my last job at the co-op, the other 5 people who worked in the main office with me would order lunch and never let me know. But, to be honest, I never felt deliberately excluded. I felt more like an after thought. I worked hard at work so I could get home to my family earlier in the evening. I also am really bad at reading people. I always assume the best in people until they show me otherwise, but then am shocked when they do. The election reminded me of my place in the fringe. While it stings, I needed the reminder that not everyone has good intentions toward me, my children, and people I love.

I have done a lot of advocacy work since I was diagnosed, both for metastatic breast cancer and for breast density. Advocacy requires many contacts and lot of social media. It is also work. Social media is not good for me. I am an empath so I take on more people and causes to care about and lack the ability to scroll past loud, angry social media behavior. I think of social media like the scene from the movie, “The Wizard of Oz,” when the curtain is pulled back to reveal that the Great and Powerful Oz is really just a tiny man working an effects machine. Social media gives us a false sense of security that we can say anything without consequences and we don’t have the opportunity to “read the room” to see if our true message is being received. We see examples of loud, threatening behavior on social media most days. Some of you handle it so well and I admire those who can debate their position in a calm, straightforward manner. That used to be me. That is not me anymore. Five years plus of a terminal illness, years of caregiving for my parents, the pandemic, the divisive nature of our society and some serious illnesses in my family besides my cancer has rendered me unable to handle social media. For that reason I am giving up my advocacy work and making my circle smaller. I am surrounding myself with the people I know for sure have my best interests at heart. Here, I hope to find some peace.

The HFS (Hand Foot Syndrome) is intolerable. I stopped capecitabine again but am still waiting for the pain to subside. Living with pain every moment, day after day, is exhausting. I am afraid that I am not going to be able to stay on this line of treatment.

Other channels of peace

My “inside oasis” is either at my piano or in my Llama Lounge (my former office for work). This is where I write, zoom people, draw, sew, and scrapbook. Two very special little girls provide me artwork, along with the painting my daughter made for me a few years ago.

Here are some photos of the Veterans Memorial in Elliott, Illinois. My dad was an Air Force Veteran and we used his memorial money to place a bench here and to fund some improvements to the memorial. Other than his time in the Air Force, my dad spent his life on the farm in Elliott. I love spending some quiet time here at the memorial when I want to think about him.

I can also count on my 2 black labs for providing stress relief. This is what Madi does when she wants her tummy scratched.

“Peace I leave with you; my peace I give you. I do not give as the world gives. Do not let your hearts be troubled and do not be afraid. “

John 14:27