Anticipatory grief. This is the term a friend recently gave me to describe the stage I find myself in. It fits perfectly to what I, and all of my sister’s family and friends are going through right now. It is a place of deep discomfort, a lingering place of limbo that consumes the mind and heart and makes daily life feel robotic in many ways.
I have experienced much grief in this lifetime, and this particular type of grief, is all too familiar to me. It brings me back to my early 20’s when I watched my mother’s struggle with terminal cancer. Now, 33 years later, I face a similar devastation as I bear witness to my sister’s life coming to an end due to the cruel disease of ALS.
It is hard to put into words all of the emotions I have felt and continue to feel watching her suffer. Slowly I see that the beautiful, vibrant, nurturing, woman – the sister who has been beside me through all the ups and downs in my life – is disappearing before my eyes.
There is still a part of me in denial. This can’t possibly be happening. I can’t possibly be losing another sibling before the sixth decade of their life. It all feels like a colossal mistake. Like someone “up there” got their wires crossed and pressed the wrong button. There has to be a way to make this just a really bad dream that we’re all going to wake from.
And then I bring myself back to reality. Today is Wednesday. It is the day that I have been taking off weekly from work, to be with Patsy. I’ve dubbed it “Wednesdays with Patsy” which I’ve borrowed from the title of the book, “Tuesdays with Morrie” by Mitch Albom. A few weeks back, when I told Patsy what I named our Wednesdays together, she told me this was one of her favorite books. She also reminded me of something that I had completely forgotten about since I hadn’t read the book in many years. The main character, whose journey while facing his impending death is so beautifully captured, battled ALS. I knew I had to revisit this book, which I did by getting the audiobook version. I highly recommend this book to anyone and everyone, and the audio version is especially beautiful.
When I spend time with Patsy today, there is not much that I will physically be doing for her. That part of this caretaking, is coming to a close. I will sit with her and send as much love as humanly possible from my heart into hers. I’m sure I will cry, while at the same time, I will try my best to bring a laugh or even just a smile to her face. I will sit in the discomfort of this “anticipatory grief”, and try to grapple with two truths that seem to contradict one another in this space…
- I want Patsy’s suffering to end and
- I don’t want her life to end.
These are two very difficult feelings to hold onto simultaneously, and if you’ve experienced “anticipatory grief” in your lifetime, then I am sure you understand this all too well.
I am not sure how many more “Wednesdays with Patsy” are left. There is no way to definitively know at this point when we will say our final goodbye. But I will do my best, to keep my heart fully open while in her presence, and know that inside that body that I see failing, her spirit continues to shine brightly. It will continue to connect with my heart as it will the hearts of all those whom she loves.
And somehow, with God’s help, we will find the strength to wade through this heaviness and limbo.