A couple of years ago my dad was diagnosed with Parkinson’s. I was going through a really difficult time with the community where I’d lived for seven years and was soon to leave, and I processed the news mostly as the dull toll of a deep-voiced bell, tolling softly but continuously under everything, audible mostly at night when there were no other sounds to block it out. For two years, while the bell was rolling out its note, I found myself in a strange mixture of avoidance and hyper-preparedness. I didn’t want to think about Parkinson’s, didn’t want to know even if it was fatal or just degenerative, didn’t want to talk about it with anyone, really. A woman I was seeing at the time for spiritual direction gave me an article on Parkinson’s and I tucked it away in a notebook and flinched the couple of times I happened to see it there. I scrolled quickly past Facebook posts where people were sharing about their loved ones’ struggles with cancer and other illnesses. I started two books I really wanted to read — The Summer of the Great Grandmother and Two-Part Invention, both by Madeleine L’Engle — but set them aside because they both dealt with illness and death and I couldn’t take it. At the same time, several times a week, I would suddenly think: I have to be ready! and begin to walk myself through my father’s illness and death in my imagination, trying to experience the emotions ahead of time so they wouldn’t undo me when they came for real.
Of course, as I’d learned long ago, this kind of imagining doesn’t really help. It just causes anxiety now, and I’m sure won’t make things any easier when the time really does come. I know for a fact that what makes things easier, or at least better, is to live fully in the moment and do what you can Today. I learned this lesson when my grandparents died, and somehow more deeply two years ago when the nanny job I’d been doing for six years was to end because the youngest was starting school. They told me at the end of the summer that he would start school in January, and I was devastated. I had bonded with those two boys in a way that I hadn’t with other children I’d cared for, and the time I spent with the little one was the most stabilizing, peaceful thing in my life at the time. I felt as if I’d been told my own children were being taken away from me.
But I knew enough by then to know that it was going to be okay. And so I did the only thing I could, and tried to be as present as possible for every moment I had left with them. I looked at them, listened to them, touched their hair and their hands, and told myself: “You are here right now. This is not a memory or a fantasy, the past or the future. This is all there is. Pay attention.” I noticed the sky and the trees and the birds. I looked around, 360 degrees and up and down, every time we went outside. I breathed deeply. And then, when the little one started school in January, I let go. And I could say, “I couldn’t have done more, or been there more.” I only had what I was given, and I took it with open arms.
Of course, with my parents, that was harder. They only live an hour and fifteen minutes away, but they are busy and I am busy, and my energy levels are not that high. It hasn’t been as pure an experience as it was with the boys. It’s not as easy to know which weekends to go up. And it’s not as easy to just take them outside and watch them play with wildflowers. Parents don’t do that, usually. At least, not as often as two year olds. They also don’t seem to get as genuinely happy and excited every time a helicopter goes by, even though I always point it out. In all fairness, the little boy who is four now is not a excited about them as he used to be when he was two. As for me, I don’t think I will ever take the appearance of a helicopter lightly again.
I am telling you all this now because I just came across another Facebook post by someone’s loved one who is dying. Her name is Kara Thewlies Tippetts. And I read it. For the first time in two years I didn’t look away, but I looked into her eyes (in her picture) and read her story. And, oh. I didn’t need to read that article my spiritual director gave me. I didn’t need to google Parkinson’s, or read about Madeleine L’Engle’s grandmother dying of Alzheimer’s or her husband’s illness and death. But I needed to read this. And perhaps you do, too. So here it is. The link has crashed because it is getting too much traffic, (here it is, anyway) but some kind person copied and pasted it onto Momastery’s Facebook page. You can read it below.
Look around. Look at what is in front of you and all around you. This is not a memory or fantasy. You are here right now. Pay attention.
And I have to tell you something else. I didn’t see those boys much for almost two years. I babysat for them once or twice, but their parents didn’t really need a sitter. I went to their soccer games here and there, but I wasn’t really a part of their lives. And I missed them. But it was okay. But just this fall their parents asked if I would be available to pick them up from school one day a week. And I was. So now I see them every week again.
And my dad saw a Parkinson’s specialist this month who said that it’s not actually Parkinson’s, but something else that they are still trying to figure out. It’s good news, probably, we think, but we still don’t know. Sometimes things are taken away, and sometimes they are given back. I wonder how much the taking away is part of the gift. Could it even be that the losing is the greater gift? I think this is something that will be clear only later. Except that I think Kara understands it, now, already. Here are her words:
“I woke slowly this morning. From my vantage point in bed, I was able to see the sunrise. My baby was curled in the stretch of my back and I could hear the crackle the fire my guy had built downstairs. I didn’t have the strength to travel to his side, but I loved the comfort of hearing him- knowing he was using the quiet to speak with Jesus about our now, our story, our hearts, and our children. Their is a constant pulse of an IV the doctor sent me home with Friday. The horizon outside my window was mostly gray, soft- a snow promised in the days forecast. Then for a moment, a beautiful pink filled the horizon- then it suddenly faded back to gray. It felt like a gift to watch and see this simple moment. No fanfare simple beauty- then the return of ordinary gray. As I grieved the passing beauty, I realized there is something astounding of the soft tones that aren’t showy as well.
“I am thinking a lot about the living we do lately. We live by degrees and now I’m learning how we also die by degrees, and in it all their is beauty. I have spent so much time thinking on big love and wondering how we press past our own limitations we place on ourselves and love beyond our limits. How do we move beyond our comfort and into a realm greater than our understanding. We find a comfort near to Jesus, knowing His love, and begin to overflow from the bounty he has provided in our lives. It takes courage. It causes heartache at times, but there is always a return. Loving big in new corners always grows a spirit in strength- perhaps not tangible strength, but a strength that would cause the spirit to continue to try. Continue to wonder over love, wonder over extending boundaries.
“And now, now I’m learning what it is to die by degrees. Parts of my body failing, parts of my abilities vanishing, and what then? Yesterday, I kept thinking- I drove for the last time and didn’t realize it was the last time. I don’t remember the last time in the drivers seat or the music we played. I just realized I will likely never again drive. It’s this weird event that marks the fading of a life, and I have no feeling other than wonder over the fact that it’s over. That chapter. All the driving my body can no longer do will now be captured by my community, my loves, my people. And there will be other strengths that will languish, and my people will press into love and provide us the needed strength and support to manage that new edge.
“I listened to my husband make the impossible phone call this morning. He called hospice. He told him that his young wife was dying, but they already knew. My kind-faced oncologist had called and told them. They were gentle and gave us a time they would be here to meet with us. The call you never expect when you are still getting your footing on living and loving and confidence in faith and who you are. But our hands have been pulled wide of our story, and peace enters. Jason walks into the room and said- I did one thing I needed to today. Needed to but never wanted to- he called Hospice because I am dying.
“So, there it is. My little body has grown tired of battle and treatment is no longer helping. But what I see, what I know, what I have is Jesus. He has still given me breath, and with it I pray I would live well and fade well. By degrees doing both, living and dying, as I have moments left to live. I get to draw my people close, kiss them and tenderly speak love over their lives. I get to pray into eternity my hopes and fears for the moments of my loves. I get to laugh and cry and wonder over heaven. I do not feel like I have the courage for this journey, but I have Jesus- and He will provide it. He has given me so much to be grateful for, and that gratitude, that wondering over His love will cover us all. And it will carry us- carry us in ways we cannot comprehend. It will be a new living and trusting for many in my community. Loving with a great big open hand to my story being the good story- even when it feels so broken.
“Will you trust Jesus with us? Love us today by imagining how you can press deeper into love in the place you live. Give away what was never yours to keep. Love us by extending yourself in the corners of your world in a way that shines bright the light on the strength of Jesus and His unwavering love and grace. Love us by not meeting our story in pity, but pray that Jesus would tenderly meet us as we walk these new hard steps together as a community. Will you walk in grace with us to my last breath? Will you commit us to prayer? Will you trust Jesus that He knows the moments, He holds the moments, and He will take me away to the land of no more tears at exactly the right moment- and He will also shepherd and love my people after that last breath.”
Thank you so much, Kara.