The Untold Story of My Sister’s Illness and Our Journey | More Human More Kind

Welcome back, my friends, and welcome if you are listening for the first time. I am both happy and honored to be part of your day. Today I am circling all the way back to the very beginning of our story, almost 6 years ago to the day, to share another layer of the chaos that I've kept pretty quiet up until now. Changes, growth, tragedy, celebration, sadness, and joy can all happen at once, right? Life doesn't happen in a vacuum. Other than brief appearances here and there, I've rarely talked about any of our family members on either side. Other than the 6 of us, and there are a lot of reasons for that, but today I'm going to talk about my sister. My sister, Corinne, is 5 years younger than me, and we are very different in almost every way possible. Looks, temperament, interests, loves of people, places, and things. And as the oldest— I'm the oldest, she is the youngest in the family— we adhered to those roles really into middle adulthood. Corinne lit up every room she walked into. She loved to travel. She loved her work. And she loved her friends. And even though our life paths were quite different, She loved me and Steve and her little nieces and nephews. She was my ally and I hers in our family dynamics. As the youngest, she saw the truth and reality of things way before I did. Her coping mechanisms were to cut people off and keep me moving forward, whereas mine were those of the peacemaker and creating mental narratives that allowed me to remain in the system. She was not warm and fuzzy, and she used her sharp tongue and intelligence as a weapon when she felt wronged. She was guarded and let few people in. But oh my goodness, she had the best laugh. She had a silly, quirky sense of humor, and she could debate anyone. For days. She has stayed with me for weeks, sometimes months at a time throughout our adulthood. She spent holidays and birthdays and just regular days hanging out with me and my growing little family. She even insisted on being in the delivery room for Grace's birth, which in hindsight was probably not the best idea given that it ended in an emergency C-section. We've had knockdown, drag-out screaming matches, as most sisters do, and we've had moments of silent acknowledgement of pain. When Connor came out as gay to Steve and me in February of 2017, I did not tell Corinne. Her sharp tongue had been teetering on the line of cruelty, and she'd become increasingly unpredictable in the way she would respond. So I had set a pretty strong boundary. As you know from hearing our story, my focus, our focus became 150% on the ever-changing and scary dynamics of Connor's coming out, as well as the energy to support Isabelle, Grace, and Rowan, and I had nothing left for anyone else. And something inside of me kept me from sharing any of this with my sister. When I finally shared what had been going on, her response was cold and quite confusing, and so the boundary became stronger. We talked less and less, and even when we did, there were often long moments of silence. A few months before Connor was set to return home from the therapeutic boarding school in the spring of 2018, it became very clear that something was very wrong with Corinne. Strange behavior during a well check snowballed into Steve and me driving into the city to pick her up from an apartment that rivaled any episode from Hoarders. And that then rolled into a hospital stay, a battery of tests, and a confirmation that what was going on had nothing to do with substance abuse, but something far more concerning. Something was going on with her brain. I will never ever forget the look on her face the night that I brought her to our house. I could see something was just off as she answered every question with a singular, "Yes." and an expression that was mixed with relief, trust, and fear. She knew she was safe with me. Since Steve and I were preparing to bring Connor home though, having her live with us was not an option. So our parents came up and moved her out of her apartment and took her back to Ohio with them. 10 months later, at the age of 42, my sister was diagnosed with FTD, frontal temporal dementia. Over the past 4 years, we have watched as she has slowly lost her ability to speak, and then to smile or make any facial expressions, and now to move or do anything on her own. The Corinne we all knew is gone. My mom has cared for her through it all, and I have incredible compassion for the sadness, anger, and grief she feels on a daily basis, as well as the physical strength Corinne's care requires. I miss my sister. Our relationship was a perfect example of ant. She was difficult and self-involved, and she was loyal and had a good heart. I am sad that she has missed her nieces and nephews growing up. She would have been so proud of each one of them. I very carefully considered how I would share this little snippet of Corinne with you. It is very personal and clearly extremely painful. But I decided to do so because it is life. Changes, growth, tragedy, celebration, sadness, and joy can all happen at once, simultaneously, intertwined. If you have multiple crises or difficulties going on, I know it can feel so big, so overwhelming, so never-ending. And I want you to remember when you are in those spaces that you are not alone. Remember that you are strong, you are brave, you are loving, and that you will make it through. Be kind to yourself. You are human. Be kind to others and remember their humanness as well.