I’ve been reading a book recently, titled “Last Acts: Discovering Possibility and Opportunity at the End of Life,” and written by David J. Casarett, M.D.
Per goodreads, a summary is: “What would you do if you had only a few days to live? Or a few weeks or months? What if a loved one were in this situation — how could you help that person decide how to spend the time that remained? Perhaps you lost a family member or dear friend to a terminal illness and were baffled by that person’s choices. How do you make sense of his or her last acts? Dr. David Casarett, a palliative care physician and researcher, specializes in the care of patients near the end of life. Drawing on his years of experience and the stories of patients he has treated, as well as his own research, he explores the wide variety of ways in which people spend their last days. ”
I’ve very much enjoyed reading this. As the subtitle mentions, it explores the ends of people’s lives and the choice of how to spend that time; the many differing motivations and challenges an individual can have to spending the time the way they want, or even need, to. It introduces us to several people the author worked with, and tells us what they talk about, what they focus on, what they put aside, and/or what they feel compelled to do, as they face their impending end of life.
It’s an insightful read, and it helped me see how actions and choices can often have a driver that isn’t immediately apparent; everything is not always as easily explained as it seems at first glance. The topic inspired me to dig deep to see and help others understand the meaning they seek. The book even made me think about how even those of us not facing death directly can still better prioritize where we spend our time (and with whom), and make it so loose ends are mended and addressed with the added benefit of health and time on our side.
Thinking about this book, and this topic, in the context of Vanessa… I was just, at first, simply sad while reading. I first got the book a while ago, and I had visions of Vanessa and us talking through ideas and projects and topics and gestures and memorials. But that didn’t quite happen as I imagined.
As the cancer takes over her brain, impairing her mental functioning, and takes over her body inflicting pain and suffering, she’s moving swiftly (and simultaneously slowly) to places and spaces where conscious deliberation isn’t a reality or an option. Vanessa has lost the gift of choice as options drop away, and daily she loses memories and passion, those precious things that then give our choices meaning. Her focus is, out of necessity, on moment-to-moment survival, not deciding how to most optimize her remaining time. Vanessa is certainly still making choices as best she can, and as she can still care, but as systems and thoughts take their leave, she isn’t able to reflect on and act upon the life lessons and moments of her past that could lend themselves to rich interactions and obvious moments of meaning.
I was sad thinking about how the brain mets and pain and long term treatment and medication side effects have made it so Vanessa can’t really purposefully craft the end of her life to include all that she would want to do. I thought about how here we are, staring at “the end…” and we’re starting to shiver at the creeping unwelcome struggles and brace ourselves for some desperately difficult times, NOT crafting tender goodbyes and rituals that will carry us through to the other side. I was sad thinking of lost conversations and lost stories and lost opportunities for “last acts” and deliberate, meaningful moments.
It’s a fact: Vanessa’s last days will not be filled with grandiose “last acts” that she meticulously plans with drive and delivers with swirling, complex layers of meaning.
THEN, it hit me, and I literally laughed out loud: Vanessa didn’t miss out doing these things, you guys. SHE ALREADY DID THEM.
Vanessa, my Vanessa, our Vanessa, at her most whole and alive and herself, was fierce. She was impatient, to a fault, but often for good. (At one point she declared her Native-American name to be “Vanessa No Patience…” and we would all pull that name out, in jest, when she was in particularly rare form!) But really, this impatience served her well. Vaness didn’t think you should wait to make yourself a better person, and she would tell you that. If she thought something needed to be done, or she could do something that would help you do what you needed to do, she just did it. She’s always, always, been a realist, calling us on our bull and running ahead of us with conviction when we’re dragging or unsure, saying, Come on guys, you/I/we got this, keep up! She didn’t often hesitate, and she could be quite fearless. Her real self was quieter and shyer than her now self, but she has always been sincere and driven. Impatiently sincere.
Back when we first learned of Vanessa’s stage 4 diagnosis, we knew full well what it meant. I wouldn’t have known 8 years ago, but we had lived in this world of breast cancer for a while now, with everything that could possibly go wrong doing so, and with Vanessa often being on the wrong side of a statistic. We’d watched helplessly as friends and friends of friends and online inspirations were knocked down by this disease. Our whole family cried together after hearing the news, because we knew that stage 4 means, presently, NO CURE. This was the line-crossing, the jumping in, the never-going-back, the never-seeing-anything-in-the-world-the-same, defining moment. We jumped in with eyes wide open, knowing.
If you were to suggest that this awareness and acknowledgement and attitude on our part was us throwing our hands up in defeat, I’d whole-heartedly disagree. We saw this for what it was…. and embraced the heck out of the reality that we saw. We turned up the dial on every interaction and discussion. We said, ok, so there is that, but THERE IS ALSO. Love. Compassion. Friendship. Meaning. Fun. Hope. Vanessa never stopped hoping for the best, believing anything could happen. She didn’t stop getting treatments and trying things suggested by her team of doctors. But she also didn’t stop LIVING, bucking as she always had any notion of this breast cancer thing becoming her only focus or reason or meaning.
What my amazing, brave, bold, WISE sister did, while feeling basically healthy still (and yes, feeling sad, but also feeling strong), was this: Vanessa, upon getting her stage 4 diagnosis, immediately set about doing her “last acts” – despite “the end” being off on the horizon still.
I didn’t quite see its big picture then, but I see it now. The book talked of those last months, weeks, days. It talked of hearing your death’s footsteps getting nearer, and using that remaining, limited time you had to make sure you do the absolute base-level things you want to do, and spend time with the absolutely most important people to you. Vanessa has already done this, naturally and instinctively. And one could even say that in typical Vanessa fashion, she did it impatiently! I see now that she started on her last acts right then, right away, seeing no value or benefit to waiting. I can hear her voice, “Why not now? Let’s go! Let’s do it!” as she runs off planning and making things happen.
Case in point: Mexico. In 2011 soon after stage 4 showed up, Vanessa dreamed up a “sibling & spouses” trip to Mexico, a full week of all-inclusive and relaxing and fun. And just like that, she made it so. We’re not ones to take frequent trips, and our style/size is usually of the camping variety a few hours from home, so this was not some common thing for us. Vanessa took off, however, researching flights and finding the perfect resort and scheduling just the right number of excursions. The stars aligned. A million people graciously jumped in to help with watching my kids for the week while we’d be gone. Vanessa even offered to pay for the trip all herself if that would be any barrier to any of us going. Those of us who needed passports got them. Then then – WE WENT. And had an absolutely amazing time with wonderful, heart-happy memories made. On the trip is where Vanessa gave Christina and me the 3-peony rings she had gotten custom made, engraved with “live sincerely” on the inside. Fabulous, magical, real, honest moments.
Here are some pictures, from that trip I will never forget. I urge you to remember that we were WILDLY and LOVINGLY embracing mortality the whole while- that of Vanessa and ourselves and all those we love. This is life LIVED, while recognizing we will die. I dare you to call this morbid or depressing or defeated. Behold one of Vanessa’s “last acts”:
There are many many many other smaller, less grand examples, but they all show the same thing. Yes, my sister is being robbed of so much by cancer – kids, health, years, functions, dreams. Yes, I wish these “the end” days were different, and that we could help her get in more “last acts.” There is so much I wish were different. But THERE IS ALSO. What a wonderful, amazing, beautiful example set by my sister. Seizing that which she could control, with conviction and purpose and drive, Vanessa wasted no time in making sure that the things she really wanted to do, happened. Even as now things are muddled and squishy and confusing, her past actions say: “Look, guys, I already showed you what mattered to me, when I could most clearly communicate it. It’s YOU and has already, always, been YOU. I made sure to make that clear right away, back then, and don’t go forgetting it now. I DID get to show you what I wanted you to know; it’s ok!”
With tears in my eyes, I remember a really really hard moment recently. Vanessa was in pain, she was scared, she was upset, she was confused, she was frantic. Those words of explanation don’t even do the moment justice, but there was a point when I had no words, felt so helpless, and didn’t know what to do, except hug her. And when I did, she said between sobs, “You’re helping me now, just being here. Thank you. You’re doing it and you don’t even know it.”
I have faith that my sister is telling me to stop worrying about making these “last” days anything particular. To not worry that she isn’t getting something grand done. To remember her AS SHE TRULY IS and remember all that she has done for us. Now, she just needs us there, present. That’s all she’s ever needed, and that’s enough. (And that’s all any of us need, is it not?)
Thanks to her tenaciousness and foresight and total awesomeness, we don’t have to spend these days pining over what could have been. Because it already was. She made sure of that. She DID THAT. Thank you, darling Vanessa, from the bottom of my heart, for that gift.
I’ve been looking at Vanessa’s life as this linear progression on a chart, the typical clip art thing with the arrow just going diagonally upwards. I’ve expected her story to have this final act that holds extra weight and significance in resolving the big-picture plot. I’ve felt like we were failing her, with her fate robbing her and us all of a successful denouement in these current days of struggle and worry and depletion.
Before, I saw life as the performance of a play; a sequence of events where you have obstacles to face, and challenges you overcome in later acts, and good times, and bad times, and the curtain closes on this last symbolic act that wraps it all up with counsel and clarity and clapping. If you are able to get to the end of your play/life and pull all that off, what a wonderful way to go!
But I see, now, that we have an additional option, that is just as beautiful: to shuffle the order of our play, ripping that last page of the playbill out and moving it up to be NOW. Removing the “last” from it’s chronology. “Discovering Possibility and Opportunity at the End of Life” –> “Discovering Possibility and Opportunity any time in your Life”
This gives us the opportunity to do many “last” acts, to incorporate even more meaning into our lives, to try more approaches, to include more people. Then if our actual final act in our individual play is one in which we’re not in full control of our mind or body or circumstance, and we’re old or feeble, or our memory goes, or our ability to move goes, or our comprehension goes… like Vanessa, we’ve already performed our “last act(s)” and not missed the chance at all.
I believe that the richest life possible necessitates an understanding that we will ALL have a last act. Whether it’s a tragic accident where we have no awareness it’s coming, or a known approaching end following a long life or a long disease… one thing is certain: we will all have a final act before the curtain comes down. It’s easy to minimize it, deny it, ignore it, refuse to face it, or laugh it off as too morbid. But truly, if rather than deny or fear our death, we live with awareness and embracing of it, we get the amazing opportunity to CHOOSE to do all our most precious things, again and again and again.
In the end, it occurs to me that all of our lives are part of the same big play. We are all players in each other’s story. We must make sure we are fully participating and present in both our own story and those of others. Do we recognize the role we play in other people’s lives, and how our interactions with them matter and maybe even make a big impact on how their life unfolds? Do we see how our own story will have a beginning of just a brief moment, and an end of the same short length, and a long, glorious, choice- and wonder-filled middle?
I aspire to be more like Vanessa, myself. To not save up what I really want to do for a bucket list I never get to, or a theoretical later date when I see the end on the horizon. I want to live as my sister always has, with whatever THIS current act is always being the one I squeeze every last delicious drop out of. I too want to say, Why wait?! I want anyone who looks back on my actions and choices to see that I made my stand and made it clear, who and what was important to me. I want to seize my current fortune of health and hope and love and possibility, to make big, “last act” things happen, NOW.
I want to be the best supporting actress I can be in the lives of those I love. I want to remember that everyone is way more like me than not, so no need to focus on the differences. I want to be sure I leave a trail of kindness behind me. I want to remember that usually, the right thing is actually the EASY thing, once arrogance and selfishness and doubt are dropped like the baggage they are. If I see a way to help myself or someone else, I want to just do it.
In this way, I hope to grow ever more like Vanessa, and keep her alive in my heart forever as I carry on her beautiful approach: living and loving impatiently sincere. My last act starts now. When will you live yours?
I’ve been reading and re-reading Vanessa’s (and your) story for the past week or so and can safely say that you all have broken my heart and filled me up and blown my mind all at the same time, over and over again.
Thank you for sharing – all of it – and thank you for this post. Thanks for being so brilliant and for being willing to share your vulnerability and your honesty.
jessica…LOVE, LOVE, LOVE this blog post. You are such an inspiring writer and thank you for sharing Vanessa’s day to day story so we are still a part of the days that we can’t physically be there to help her and visit her. I love hearing your reflections and thoughts, and from them always come such positive and aspiring thoughts to live by and remind us about.
And loved the pictures to help tell the story!
Beautiful pictures!! Very well written as usual Jessica. Much LOVE to Vanessa, you, and your family.
No words. Just all my love.
So beautifully written. Sending love!
Just beautiful. Thanks so much for sharing and give V a BIG hug and kiss from me!
You too are a “HERO” because you give good and love. I admire you very much. I loved your realization that Vanessa has already lived and shared her “last acts”. We are all living these but we do not have the urgency and need (unfortunately) to know that we are. I am more conscious of this since my mother’s death from cancer. I live more for my family and more literally. I call the care and time that I spent with my Mom the dessert. She was the sweetest of Mama’s then. I got to get dessert.
Your writing is very wonderful and good. I certainly hope at some point you consider writing a book. You are very inspiring. I love that you give the reader a rich feel for who, and how Vanessa and all of your family live with cancer. I am not for cancer either. I demand a cure in my lifetime. Thank you for pointing the way to find the correctness for a cure as far as what to support and consider not supporting. I pray for all of you often.
Best wishes and God bless, Melissa Grove a friend of Sue and Dick.
Another beautifully written account of what you are feeling and experiencing. You truly have a way with words. As always, you and Vanessa are in my thoughts and prayers. Live Sincerely!!
You have all been on my mind so much. I haven’t seen an update, so hesitate in what to say, other than that I wish peace, comfort, and joy for all of you in 2014. God bless all of you…