Saturday, March 28, 2009

My Wife

I have had a lot of trouble over the last few days framing my response to my beautiful wife’s death. Obviously it’s something that is hard to comprehend, but it’s something that has been a long time coming. Amanda and I had no real delusions that she would find a cure in Texas, but what we did hope for was more time. We hoped that she could find treatments that could potentially prolong her relative wellness long enough for science and medicine to overcome her sub-type. Her only fear was of dying in Texas, away from Alastair, her parents, and from me. It sickens me that her worst fear was realized, but I have taken some comfort from the fact that she held her father’s hand as she lost consciousness for the last time.

I have cried. Boy have I ever cried. Seeing her so lifeless in the ICU—hooked to a ventilator but long since gone–was the single most horrible thing I had ever seen in my life, and during the interminable wait for the “comfort care” orders (those that would end her physical life), I was a train-wreck. I couldn’t even take comfort in the presence of her parents. I sat in the hall and watched for the nurse and just sobbed. Two strangers stopped and offered their support, along with Amanda’s nurse. When they told us to come in, that the removal of life-support was complete, I rushed to her side and whispered over and over for her to just rest. I held her hand, I watched her pulse slow from 130 to 30, and I loved her furiously.

I cried for the next hour, left in the room with her body and waiting for the off-shift administrator to come tell us what steps needed to be taken next, and felt completely empty walking back to the room. I cried off and on all the next day, and when I tried to explain to Alastair what it meant that Mommy had died.

I cry a little bit every time he asks me when she’s coming back, and every time I realize some minute aspect of our life-rituals has to change. In the weeks before her death, we finally got Skype working between the house and her hotel in Texas. Every night before bed we would call Mommy on the “computer phone” and pray with her. Tonight he asked if she has her computer phone.

But I’ve been deeply inspired, too. The outpouring of love, both virtual and physical, has been enough to offset a great deal of that pain. Cards have begun to arrive, as well as food, but what has really moved me is reading the online dedications from the Pajiba community. I have read them all, and while I have not been a frequent visitor to the site, I feel like a part of the family. Amanda exposed herself on Pajiba and her blog in ways that most don’t. In fact, she exposed herself in ways that would mortify privacy experts. But we decided from the start that her journey could help others find courage, strength, and healing. We also decided not to pull any punches, as our blogs would stand as a future history, undiluted, of what horrors she would go through. What amazed us both is that so many people actually read those posts. All of them. Her story became a lightning rod of hope and healing energy, and she was soon added to prayer lists the world over. People we’d never met were sending flowers (the first of which, received only 4 days after her initial admission, brought buckets o’ tears), books, movies, music, cards, apple-cakes, clothing, and *ahem* electronic devices. She cherished every single thing she received, and kept a very carefully organized folder of Amazon packing lists to write thank you notes.

I thought at first that I would not be able to read Pajiba’s dedication to Amanda, but the farther I read, the more the tears turned to laughs.

We never dwelt long on the subject of her “final wishes”, but she did outline a few:
1. Cremation. She frequently told me that if I didn’t cremate her, she’d come back to haunt me.
2. A New Orleans style funeral. Ultimately never serious about this one, what she wanted was a dignified sobriety to start off the mourning, but then a party to celebrate her life. Gotcha covered, babe.
3. Alastair to remember his mommy. And we’re going to work awfully hard to make sure that gets handled correctly.

My wife never thought she mattered. She always felt that her lack of an individually exceptional skill meant that she was destined to be forgotten, passed by, and generally ignored. It was an insecurity that she battled right up until those first flowers arrived at St. Mary’s. For your kind words, I thank you. For your love, I am indebted to you. For 15 years with my soul-mate, I am coming to realize there is no response. I feel like my soul has been attacked with a melon-baller, and I imagine that will continue for a long time. And for Alastair, just keep praying. He’s too young to really understand, and fortunately Amanda had already been away for the last month, so there’s no huge and immediate lifestyle change to cause him panic.

I miss her tremendously. She was so smart, witty, and sassy. She was also pigheaded and refused to accept new elements of her disease were actually symptoms. We argued endlessly over whether or not she should tell her doctors about her ear-pains, persistent indigestion, never-ending menstruation, avocado-sized (and shaped) bruises, and finally her leg pain. She refused to be hospitalized more than once when running dangerously high fevers. Hell, I almost had to drag her to the hospital last spring to get this all started, even though she was losing her vision and had nearly collapsed in the shower.

Yet for all of it I was fortunate to have that year with her. Undiagnosed, leukemia can kill within 3 months. She had already been experiencing symptoms for 7!

People have already placed blame for her death on her decision to go to Texas. Please don’t make the mistake of thinking that way. Amanda was fiercely determined to be in control of her destiny, and staying in Richmond meant palliative care. Houston offered hope and possibility. She knew the risks, but she also knew the potential rewards.

And if she had not died Wednesday, her condition would only have gotten worse. The pain and swelling in her feet were from hemostasis, which meant the blood was pooling and no longer flowing properly. We both realized the ultimate outcome of that would be gangrene and amputation, and the doctors later told us that her internal organs would have soon begun shutting down, leaving her without any sense of dignity and trapped in an ever-worsening body. She was, quite simply, very lucky to have gone the way she did.

And we were all blessed to have her for as long as we did. So say we all.

34 comments:

dsbs said...

I've felt so horrible these last few days, all I've wanted to do was come up with something, anything, to make it better. I've donated to the Leukemia and Lymphoma Society as linked on pajiba, and I've decided to write to let you know that your wife was wonderful. She meant so much to people she hadn't even met. If little A ever needs help remembering his mom, she's got a whole corner of the internet dedicated to her name.

There are no words in a situation like this, and no easy path through the pain and emptiness you must be feeling, but for what it's worth, I don't think it's too forward of me to say: we're here for you. Thank you for having the courage to share the story, the pain, but mostly the hope and the inspiration.

God bless and take care.

Josh said...

I've read Amanda's blog about her fight and always been deeply impressed with the strength, humor, and obvious love for you and your son though this all.

I watched my father finally succumb to COPD on Friday. While our situations are certainly different, know that at least one stranger who also has a fresh wound is thinking of you both. I wish you all the peace you can find.

Stephanie Stanley said...

My heart is broken for you and Alastair and all who love Amanda. She definitely mattered. She has left a lasting impression on my life. She was certainly ONE OF A KIND! I cherish the friendship we had and wish I had been closer to you all these last few years, esp. since our move to NC.

Know that we love you and Alastair and you are constantly in our prayers.

Marissa said...

Your perspective is amazing. I'm sending all my love to you and Alastair. It has been really hard for me to be so far away from you and the gang today, so forgive my cyberstalking, and thanks for updating.

Girl With Curious Hair said...

Adrian, I can't begin to imagine how you feel--but you and Alistair have our prayers and love. I hope she knew how exceptional and loved she was for her heart, strength and grace. We were all blessed to have known her.

Thank you for so generously sharing with us.

Maureen said...

please let me know the arrangments...first initial, last name @screamandfly.com

thanks

Tiger said...

Hi Adrian,

I am very sad and I can imagine how difficult is for both of you. The only thing that gives me strength is that Amanda is not suffering anymore and she is in peace. Thanks for posting about her, your son and yourself.

Nicole said...

Adrian, I can't really add anything to what Parissa wrote. I consider myself so lucky to have "known" Manda, even if we were just Pajiba/Facebook buddies. You and Alastair have been in my thoughts and prayers for the last few days, and will continue to be so for a long time. She was an amazing, classy and extraordinary broad, and she'll be remembered with a lot of love and laughter.

Jay said...

Believe it or not, I found "Harry Potter and the Prisoner of Azkaban" to contain one of the best meditations on dealing with loved ones gone, and it pointed something out to me. "I can't do this by myself, I've never been able to do this by myself". I've felt that. The answer, of course, is that you don't have to. They live within you and you carry them forward with you. Harry saves himself, but it's because he's James and Lily's son that he can. He's later able to summon the most courage he's ever needed because of the strength and wisdom those who have touched his life gave him. Fantasy example, but true. Easy for me to say at a distance, but true. Spirituality, biology, memory, whatever you call it. Lives go on with the living. She's in you both.

Nicole said...

What a beautiful and fitting tribute to your wife. May she rest in peace.

patchfire said...

my thoughts and prayers are with you, from one human to another. Im a misanthrope, and she was one who gave me hope. clench the fist around your heart and try to move forward. So Sorry.

Dawn said...

I began reading Manda's blog last spring when Chez Pazienza talked about it in his blog, and have been following it and praying for all of you since then.

Manda inspired me with her faith and with the way she didn't sink into herself and just give up.

Much love to you and Little A, with prayers for your healing.

apadams said...

Thank you for such a beautiful tribute. I've read Amanda's blog and yours since she was diagnosed (Pajiba, again), checking daily for updates. I was awed by her strength and dignity, as I am awed by yours. Thank you for continuing to post, and for helping everyone, even those who never met her, continue to see her beauty. My sincere condolences to you and Little A, and all who knew her.

Che Grovera said...

Adrian --

I knew Amanda through Pajiba only -- but, oh, what a voice she had there! You are tremendous writers, both of you. Thank you for sharing yourselves over the internet; your decision to do that, and your determination to follow through, are more significant than you may be able to realize now.

Gilbert said...

i have never met her and i am sad i never will . My son has been dealing with ALL for 3 years and her posts and kind words always made me feel great . I truley feel like i have lost a great voice in my life to feel strong for my son. She will be missed by me as well as many others . God bless you all .

Susan said...

I have always been so impressed with the manner in which you and Amanda have spoken of your experience. Your words have let us all into Amanda's last moments with such clarity that my heart is breaking all over again. As for Manda making a difference- my life has been forever improved by having known her. She was unique and in this day of copy-cats and going with the flow- that is priceless. I loved her and I have so much love for you and Alastair- thank you for your words. And know that I am carrying you all in my heart- SK

TK said...

So say we all, indeed. Again, my thoughts are with you and your precious little boy. Amanda's strength is something we all learned to admire, but I confess - your own strength is something to admire as well. I wish you nothing but the very best, and if there is anything at all we at Pajiba can do, please, please please let us know.

We will miss her always.

Spruce Hill said...

I am so sorry. I will keep you and your family in my prayers.

http://sprucehill.typepad.com/
http://motherswithcancer.wordpress.com/

Amanda said...

I am here from Susan. I am so deeply sorry for your grief. Your Manda was amazing. Wishing you strength and, one day, laughter.

sarah said...

I am so sorry to hear about your loss. Having been through cancer myself and watching my own mom pass,
I also share in your inevitable thankfulness that, for her at least, she does not to suffer anymore of course. Still hurts though, I know. I found you through Imstell, and I will keep you and your family - where ever they are - in my thoughts.

dammitjanet said...

Amanda was, and is, a beautiful spirit. She will live on in your heart, the hearts of all she spoke to on-line, and most importantly, in Alistair. God bless you all.

Doran (admin) said...

Thank you again Adrian. It's funny that sometimes the people we don't "know" can affect us more than those we do. Amanda is an excellent example of this for me.

Another Jen said...

Adrian, this is a beautiful tribute. Thanks so much for sharing such a personal journey with us.

cindy said...

This weekend was a meditation for me, inspired by your wife. I'm sad to hear that Amanda felt that way about herself, and yet in a way comforted for having the same feelings. Thanks to her openness, wit and personality, your family is wrapped in the blanket of the warmth of good thoughts and prayers.

Treena said...

I am a survivor (so far) of metastatic breast cancer, and I was hoping that your wife would join me in beating the odds (I am also the mommy of a toddler). It crushes me that she didn't, because she was a vital, hilarious and honest voice about living with cancer - the fear, and hope of getting through it with dignity and class, whether you survive or not. I hope to hell that if it comes back to get me, I'll be able to use your wife as inspiration to handle it with an ounce of the strength she did. She was (and is) a miracle of nature.

Tae said...

God bless, heal and keep you. You are both in my heart.

blackbird said...

Thank you so much for your honest, raw and unsentimental writing about what has got to be the most devastating thing for one to deal with.

Thank you.

Amanda's spirit is too strong to ever fade...she will be missed and remembered.

Chez said...

There are no words -- none at all -- other than to say "thank you," and that I'm so, so sorry.

I'm utterly humbled by your love for Amanda and her love for you and Alistair. You're so lucky to have had each other for as long as you did, and her memory isn't going anywhere. Not ever.

a.j.g. said...

Adrian, thank you for sharing this. Not everyone would take time out of their own grieving period to write something for all of us out here to read. I started reading Amanda's blog two weeks before she got the diagnosis and have continued to check in every day, actually worrying when she'd go a long stretch without writing. Though I never met her, I feel like I know her better than many of the people I see on a daily basis. Amanda affected a lot of lives and her words will continue to touch lives. Amanda is one of my heroes. Please know I will keep praying for you and Alastair. God bless.

lordhelmet said...

So say we all indeed. I'm another Pajiban touched by Amanda's journey and writing, her personality and her courage. She has been quite an inspiration, and will never be forgotten. My deepest condolences and best wishes for you and Little A.

tinksgirl said...

I am just one more person from pajiba who has been touched deeply by Amanda's journey. Thank you so much for sharing this, it means so much to so many that just weren't ready to let go. Amanda did matter very much and to very many people-most who had never even met her in "real life"-to have that kind of impact is a powerful legacy. I am sending you and Little A prayers and best wishes and wish there was more I could do.

blackbird said...

My sister died when we were both teenagers, and through the years the following quote by Keats has provided me with the smallest bit of comfort.

"A thing of beauty is a joy forever.
It's loveliness increases;
It will never pass into nothingness."

Amanda's beauty was apparent to all - even those of us who only encountered her beautiful spirit through Pajiba or on her blog. It's what drew us to her. And it will never pass into nothingness.

Take care, Adrian.

Anonymous said...

God bless you.

MelodyLane said...

I've read this post a few times trying to think of something coherent to say. I just want to say that Amanda mattered to a lot of people, me included. She was a wickedly smart, funny, and hilarious lady who will never be forgotten.

Thank you. My thoughts and prayers are with you and your family. I'm so very sorry.