My friend, Sybil, has a disease called CBGD and has been living in a guest home for a few years. Her disease has frozen her body and taken away her ability to communicate and care for herself. And yet, she is still my friend.
Witnessing this part of her life has been an interesting experience for me. For the most part, I have been surprised how much I enjoy visiting her and there have also been times when I feel like my heart is breaking. She has modeled pure grace and I love that the last word she can speak clearly and often is the word, “yes”. It speaks to who she really is and how she has lived her life.
Sybil’s journey is also a learning experience for me and I would like to share some of the lessons and reminders that have come my way because of it.
Live each day fully – we never know how much time we have or when things might suddenly change. This may be the best year of your life or the last time you get to do something you really enjoy. Approach your days with awareness and appreciation because each one is truly a gift.
Trying to understand “why” is a waste of time – sometimes things just don’t make sense. Why is my friend who loved to travel and have compelling conversations sitting in a wheelchair unable to move or speak day after day after day? What could God possibly have in mind? I have learned to accept that it is not for me to know the answer to this question.
My life is truly blessed – it is so easy to get upset about little things like bad hair days, computers that don’t work, and other challenges that come along, but visiting Sybil puts my life in perspective very quickly and reminds me just how blessed I am. I can move, take care of myself, talk, drive, read, and even swallow easily. She reminds me to be grateful for all of these, and more.
Sometimes being loving is all you can do – most of the time, now that we can’t have conversations, I read to my friend. But, it’s really about just showing up and being there. I believe in the power of love and when that is all I can offer, I know that it will be enough.
(Thank you Sybil for saying yes to my sharing this story.)