A Beautiful Life

As I thought possible last winter, if not probable, I’ve stayed away from writing about the past year, without question the hardest of my life.  But as Diana transitions to hospice care,  I felt the need to return.  We cannot begin to express how much the love and support from so many of you has meant – this week, this year, and beyond.  Also, this does not necessarily mean she has only days or even weeks left with us – while we don’t know for sure, the doctors expect that with a little good fortune, she may still see the flowers of another spring.

Cancer is responsible for the worst days in my life.  But none yet like the one about to come.

Sometime in the next few days, on the cusp of her seventh Christmas, I’ll tell my daughter that her mother will soon die. I’ll tell her because while Diana will be sitting beside me, for the most part, she can no longer speak.

I’ll tell my daughter because as unimaginably cruel as it all feels, she deserves to know.   Because when she looks back in the years to come, the serrations of her heartache will be softened just a bit by knowing she was a part of saying goodbye. And because somewhere in a remarkable soul that has always seemed far older than its pint-sized body, she already seems to know that goodbye is near.

I’ll have to find a way to tell her that the tumor in her mother’s extraordinary brain cannot be fixed, that some day far too soon she will simply not wake up. And then, perhaps immediately, I will have to reassure her that the tumor in her own still-forming brain, homonymous though the label may be, will not callously strip away her ability to speak and read and run and play and….live.

To find the strength to do the unimaginable, I’ll need to look beside me to forty-one years of a beautiful life. To a woman who has chosen to live the final phase of that life with the same grace and power and utter selflessness that defined every chapter of a story at once too short and yet as rich and lasting as any I know. I will look to this woman I would call singular except for the tinier version of her before us, and I will know it is not truly goodbye.

And that is how I will begin to climb out.

I will talk to our daughter of her mother’s bravery and love, shining as brightly now as ever. I will talk to her of the family and friends behind and beside us, of the fact that there are so many of these extraordinary people because of who her mother is, of how she will live on in every one of them. Of how most of all, she will live on in us.

I will do these things all the while knowing that the coming weeks will bring anguish beyond what either of us have ever known.   Knowing that in January, amidst all this agony, a still tiny six-year-old girl will once again have to climb into an MRI machine, the rest of us beseeching and praying that please this time universe just give us a goddamn break. Knowing that the fractures in our hearts will never fully mend.

But as an old friend said today, scar tissue can be strong. So as the weeks and months and eventually years pass, I will look to that little girl to lead me as much as I her…and I will know that she can.   For she already has.

And as those years pass, I will tell her the stories of the woman she evokes. Stories that at times will make her eyes wide, at times full of tears, at times dance with laughter. Stories of a woman who did not care what you looked like or where you came from but simply who you were. Stories of a woman whose determination and creativity and joy and thirst for pure knowledge were as unmatched as her smile, the whole lot somehow exceeded by her love for others, and for her daughter most of all.

When I hope the time is right, I’ll tell her how her mother was genuinely excited to be awake for a brain surgery certain not to cure her. How she exercised every day of a grueling six-week regimen of radiation and chemotherapy, begun nearly on the heels of that surgery. How she not only entered but won the last two races she ran, handicapped in each by a tumor making her so dizzy she could barely see straight.

And eventually, I’ll tell her that when the doctors walked in the room one fateful Tuesday in December and said the tumor was far worse and there was now little of consequence they could do, the first word she said was “Neva” as her eyes filled just a little with tears. And of how that first word had everything to do with the choice she then made to be home with those she loved instead of attached to yet one more IV.

I will tell her the stories of a beautiful life. I hope you will too.

 

 

 

27 thoughts on “A Beautiful Life

  1. beth holland

    dear alan,diana and neva,
    i am sitting in the Paris airport after negotiating the final steps of the Paris agreement past midnight. as i left the negotiating (and approval) hall my last conversation was about how much i loved and admired Diana.

    there are some days and some people that change our lives forever. Diana was one of those people whose indomitable spirit will live on with all of us because of the joy, love and inspiration she brought to our lives.

    i am not physically with you but please know that i am with you with my whole heart as i was the day you were married to a beautiful woman and soul, as i was when neva smiled for the first time.

    like all of us who love you, Diana and Neva, i wish I could wave a wand and change the world. All i can do is send love knowing that the only way I can really change the world is by offering my wholehearted love to all of you, you, diana the huntress and beautiful neva.

    with love, beth

    ps remembering diana’s joy and delight in visiting and lecturing in the city of love and light

    Reply
  2. B Jang Mi

    I have been praying for a miracle, but now I will just pray for peace. Peace in your heart, Diana’s, and Neva’s. I can’t imagine the pain you are facing, except by multiplying mine by infinity. Even though I do not know you, I already know that you are an exceptional man, husband, and father. Diana chose well, as she always does. I can already see the love for life instilled in Neva through the photos and stories.

    Reply
  3. Bob Melia

    Alan you don’t know me. I was Diana’s high school principal. You truly have captured the essence of who she is. My heart aches for all of you. I can pray, but I wish I could do more. Please let her know how much everyone cares about her. I am so sorry that she has to endure this.

    I can’t begin to imagine what you and your family are going through. I only hope your pain lessens as your love for each other continues to grow.

    God bless all of you.

    Reply
  4. apumilia

    Alan, I’ve never met you or Neva, but I worked with Diana 20 years ago at a coffee shop in Metairie, LA and have followed you guys through Facebook. I can’t imagine what you guys are going through or even what you have been going through for the last few years, but your blog posts have moved me many times.

    Diana is one of the greatest. She sent us a onesie for our 1st child when he was born, despite that I hadn’t seen her since maybe 1999. When she still lived here in New Orleans, she was so nice to me at some times when I really needed it; whether she knew I needed it or not, she was just there being a good friend. The last time you guys passed through here she invited me and the family to try and meet up with your family because she wanted to meet my kids. Haven’t seen her in 20s years and she’s still the type of friend who takes an active interest in my life.

    Besides my sympathy for your family, that she won’t live long enough for everyone on the planet to feel her friendship is something that troubles me. Though it pales in comparison to what Diana, your family, and those fortunate enough to know her are dealing with, it seems “unfair” in away that the rest of world doesn’t know what we know.

    I don’t know the appropriate way to end this other than to say I love you guys.

    Reply
  5. Ben z.

    Beautiful. Love, peace and universal strength, your grace is an example to a mixed-up world. You, Diana and Neva have been in my meditation daily. We can…

    Reply
  6. Gary F. Kelly

    Alan: I was headmaster of The Clarkson School when Diana spent the year with us. Even then, she was full of life, determination, brilliance, and future plans. She was much loved by her friends. The world is a better place in so many ways for all that she has given us. My family has lost a loved one to a brain tumor as well, and know how cruel the illness can be to everyone. Your courage and honesty will serve Diana, Neva, and everyone around you well as you face the next few weeks and Neva’s future. The only way to face the horrors and trials that the universe brings our way is to go straight to the heart of them with mindfulness and a heart open to all of the emotions they evoke. You seem to be doing exactly that with unflinching care, although it must feel as though you flinch from time to time.

    Reply
  7. Jenny Ramp Neale

    Alan,
    I am so sorry to hear that this is the place in which you have arrived. I have thought of you and your family often over the last few years. May you have strength and peace as you face what lies ahead. Diana always made me smile and inspired me to be a better scientist.

    Reply
  8. Stephanie Guay Martinek

    Alan,
    Although we’ve worked together for over a year, we’ve had little chance to interact personally so there is much we don’t know about each other. But as I’ve heard of the terrible demons your family has had to face I’ve ached for you all and the road ahead. Reading your words above, however, I know you will be the anchor your beautiful daughter needs to help her through the storm — and she will be the same for you. Do not be afraid to lean on her, she’s stronger than you think. And, please, never stop telling her about her mother, little things, big things, funny things, sad things — remember your wife through the memories and relive them with your daughter. I lost my mother when I was young — older than Neva, but still too young — and I lived, and sometimes ached for those stories. She’s still alive for me in the memories of others and they are some of my most valuable possessions. Love and peace to all of you.

    Reply
  9. Becky Ostertag

    Alan,
    I have been thinking about the three of you. Know that there are many of us doing so. I feel for what you are going through; my mom had the same kind of tumor. The universe and all of your ‘ohana knows what that you are all such strong, amazing, and giving people.

    Reply
  10. Niles Barnes

    Such great courage, dignity, and grace. Sending all my love and thoughts during this incredibly difficult time.

    Reply
  11. The WheatandTares

    Hi there, you don’t know me, but we have a mutual friend. Her name is Shannon, and she has shared your story and asked us to pray; so, this is what I will do. My heart breaks for you and your family as I read all of your entries tonight. I cannot imagine your pain nor the journey which you must take, but I believe Hope can find you and carry you through, no matter the outcome. I will praying for you all, for peace to abide, for Hope to arise and for grace to abound.

    Reply
  12. Guila Ouaknine Sabbah

    We send you all the courage for you and Neva. Hoping that Diana Will find the strength to be there with you and celebrate with joy the holidays! It is inspiring to see you taking the time and finding words to post us. God bless you!
    Guila and Ariel Sabbah

    Reply
  13. Jill

    On this very snowy day in Colorado, my heart is so heavy. I am so saddened to learn of Diana’s declining condition. I’m thinking about you Diana — your brilliant smile, your thirst for knowledge and discovery, your openness, your friendship, your love of life. I am so glad we had a chance to work together in the Environmental Studies program. Sending love and strength your way.

    Reply
  14. jpschimel

    Dear Diana, Alan, and Neva:
    It’s rare that I’m at a loss for words, but only one comes to mind: Shit. Well, even ruder ones might too. Diana has illuminated the rooms we’ve been in together with both her intellect and her joy. You have enriched all our lives.

    And Allen and Neva: as we come upon Winter Solstice, remember that it is also known as “Sunreturn” the reminder that though the worst part of the year is to come–cold, dark, harsh, painful and scary–yet you will survive winter and the sun will return, dimmed by your loss but you each have a spirit and light within that will not be dimmed forever.

    My thoughts and love to you all.

    Josh

    Reply
  15. Dalia Patino-Echeverri

    Dear Alan,
    Diana, Neva, and the three of you as a family inspire love at first sight… When the time is right I will tell Neva of the first impression I had of her mom; “adorable”. That is all I could think of an adjective to describe her; a true angel among us, who exudes kindness, selflessness, and courage.
    I do not have any words in English or Spanish to express my admiration for all of you. Your selflessness, your ability to make the best out of a difficult situation; and your unparalleled ability to put emotions into words, help all of us take a different perspective and celebrate life above all. Thanks so much for the sweet and generous advice you gave us when you shared the difficult news in the faculty email.
    We are praying for all of you, so that the gift of time is of great quantity and quality. We know it will be.
    Dalia

    Reply
  16. Kate Lajtha

    Alan,
    So much has been written of Diana, and truly she was extraordinary. How lucky you were to find her, and how lucky you two were to have the life you had together. How lucky Neva is to have come from such an extraordinary mother. As these dark days finally end, and the light returns, as it always does, I know that you and Neva will be able to look at each other and see Diana’s grace that was given to you both. I wish you peace during these unimaginably cruel days ahead of you, and know that love and prayers are drifting through the air to you both from all corners of the world.

    Kate

    Reply
  17. Nancy Grimm

    Alan, Diana, Neva – I’ve lost touch and only now have learned that the battle is over and the transition begins. I’m sorry you had to reach this point when hope was lost for Diana’s recovery; I remember that point near the end of my sister’s life, also cut too short by cancer, still with such sadness. Diana, you continue to be an amazing brave soul and you have done just the right thing to choose to go in peace with your family beside you. Alan, your words are heartfelt and true, and I hope they provide some of the outlet you need. Take these last days or weeks as you both need to, not for anyone else but for yourselves and for Neva. Neva, you will always have your beautiful mother as part of who you are, even as you become an adult and the memories fade, but the love and strength remain in you. Sending love to you family and wishing you courage and peace.

    Reply
  18. Nancy Grimm

    Alan, Diana, Neva – I’ve lost touch and only now have learned that the battle is over and the transition begins. I’m sorry you had to reach this point when hope was lost for Diana’s recovery; I remember that point near the end of my sister’s life, also cut too short by cancer, still with such sadness. Diana, you continue to be an amazing brave soul and you have done just the right thing to choose to go in peace with your family beside you. Alan, your words are heartfelt and true, and I hope they provide some of the outlet you need. Take these last days or weeks as you both need to, not for anyone else but for yourselves and for Neva. Neva, you will always have your beautiful mother as part of who you are, even as you become an adult and the memories fade, but the love and strength remain in you. Sending love to your family and wishing you courage and peace.

    Reply
  19. Amanda Labrado

    I wish you nothing but love and peace. Although my time working at CU Boulder with Diana was short, she was such an inspiration to me! I remember having lunch with Emily Graham, Neva and Diana and thinking, “Goodness, these women are amazing!” Neva spoke like an adult and the love between her and Diana were so heartwarming. I thank you for granting me that memory, and I thank you, Alan, for sharing such a beautiful story.

    Reply
  20. Alex Washburne

    You & Diana have helped us more than we can ever know. I’m so sorry to hear this news, and tearfully, overwhelmingly grateful to have gotten to know Diana. At a time when discontent with Ivy Leagues polluted my feelings of science, talking with Diana cleared the sky and helped me live & breathe the air of knowledge all around us. She is a hero who leaves one of the most inspiring legacies I have ever seen.

    Words can’t express this gratitude for all that you have done. Hang in there, Alan. You will always have a friend in me & my family, and we will be here to help you & Neva any way we can.

    Reply
    1. Maggie Werner-Washburne

      Alan, Alex is absolutely right. If you and Neva want to come to New Mexico, you are welcome anytime – in Albuquerque or at our place in the mountains. You have constellations of people around you and Neva – people you’ve never met and people you know well – who would give anything for you, Diana, and Neva not to have gone through this and are at the ready to do whatever is necessary. As time passes, it would be a gift for you ask. Thank you and Diana for giving Alex such a great welcome and for caring about him. You, Diana, and Neva are in our hearts and prayers.

      Reply
  21. robin

    I read this again to remind myself of the strength in all of you, Neva, Alan and Diana. Two nights ago, I was talking with Antie Jenny in Hawaii. She is 84, and still has the wonderment of a little kid. She told me recently she asked her brother, Uncle Ikika, a Hawaiian Kahuna (shaman), “what will happen when I die? Will I go to heaven, hell or purgatory as my Catholic religion tells me?”. Uncle replied, “well, you have choices. One you can go to the stars and look out upon the universe. A second choice is you can stay in Earth’s skies and watch over a loved one.” That is where I stopped listening to the other choices because I was thinking about Diana. I know she took the second choice, but not only to look out for Neva and Alan, but all the rest of us. I know she kicks my butt every time I start to feel lazy or lacking in confidence about anything I am doing. As I waver, I simply think about how Diana always attacked life at full strength, but with the grace and love that is hard to find in any person. Her voice, helps me take the next step into whatever is there. As this year comes towards its end, I read, reflect and live in this moment, knowing those close to me are larger than life as we understand it. Love always, Robin

    Reply

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