From the 3rd Annual Myositis Empower Walk
For the 3rd Annual Myositis Empower Walk (2021), we honored the memory and life of Stella Clapp. Kicking off Spirit Week, Jenna and Lauren Landman, creators of the Myositis Empower Walk, and Jerry Williams and Emily Filmore from MSU, hosted LIVE with the Landman’s, an intimate discussion with Stella’s daughter, Jennifer Schubert, and one of Stella’s “mentees”, “Myositis Joe” Sanchez, to learn more about Stella’s life, the realities of her journey with inclusion body myositis (IBM), and how one person can make a huge impact in the lives of others with myositis.
Watch LIVE with the Landman’s: Honoring the life of Stella Clapp
My Mom, My Hero
by Jennifer Schubert, Stella’s daughter
September 9, 2021
My mom, Stella Clapp, was my friend and my hero. She was strong, caring, helpful, and giving. Yes, she had her challenges; (Guillain Barre with 3 young children and, years later, myositis), yet she was always loving, caring and looking to do what she could for her family and others.
Before her inclusion body myositis, mom was always doing something. She loved shopping, going to get her hair done, getting a mani-pedi, and getting flowers. She liked to play bridge with her friends, drink wine (maybe I should have put that at the top of the list), visit with her girlfriends, go to the beach, watch the dolphins, spend time with her family and friends and play with her cats. She loved to decorate her home (for any holiday that Hallmark made a card for) and had an attic and a spare room full of holiday decorations. She particularly liked Christmas (more decorations) and the chance to watch all of the Hallmark holiday movies.
Even with Myositis, she remained upbeat and optimistic. She continued to do secretarial work at a hospital and managed to do patient registration and computer entries even after one hand stopped working. She never complained or even let it known to her fellow workers. Once she was no longer able to work, she continued her positive outlook and still went out with her wheelchair to shop, get her hair done, and sightsee. She always downplayed the effect of her condition. She focused on what she could still do and made sure to smile and laugh.
Over time, myositis affected her more and more. At first, just her hands were bad, then she had difficulty breathing and needed a respirator (ventilator) part time and at night. Then her legs started to fail, her swallowing got worse, and she got a feeding tube. Eventually her breathing worsened, and she had a tracheostomy with full time ventilator and could not even speak. She used messenger to communicate with family and friends. Soon she was bed bound and needed constant care for her daily needs. Even so, she continued to make sure that everyone else was taken care of and that everything was as normal as possible. She ensured that the house continued to be cheery and decorated for every holiday, even having wreaths, garland, and a tree in her bedroom.
All the while, she continued to reach out to help others. Through the various websites and groups devoted to myositis, she would contact people who had been newly diagnosed to help them manage and adapt to their new reality. She offered encouragement, advice, tips, and most of all, friendship and support. She had friends from all over the world that she would keep in contact with and check how they were doing via messenger. On occasion, mom even helped financially where there was a need, and she was able. No one had to ask for help, she just gave it if she saw someone with a problem. Mom was giving, caring, friendly, empathetic, and just a really nice person who always lived life to the fullest and smiled.