Monday, September 22, 2008

"The reports of my death ..."

Mark Twain was once quoted as saying, "The reports of my death have been greatly exaggerated." I could empathize with the old chap this weekend when I opened up a card to Bill from a publishing company, assuming that it was junk mail. As it turns out it was from the publishing house with whom Bill is publishing a textbook this December. It was a condolence card filled with several hand written messages expressing sympathy over my passing. It turns out that Bill's co-author, a Frenchman, was not able to get his point across precisely. We had a good laugh over it.

Bill's parents and sister, Ann, were here all weekend. Bill's immediate family includes some of the most productive, hard working people I have ever met. No one ever sits down unless it is mealtime. The weekend was a whirlwind of shopping expeditions, pantry organizing, kitchen cleaning, picture framing and hanging (at my request), and many, many other tasks. When they left this morning the house was pristine and the photo collage I had been plotting for month was finally a reality in our family room. I was so happy.

I had to be honest with myself about the photo collage. I wanted it because I wanted Bill and the children to see what moments I had singled out to display from this wonderful life of ours. But, secretly, I think I was also marking my territory. The time will come when I am gone and Bill and the kids will need to move on. And I want them to do that, truly. But I want the person who fills my shoes to know that I was here first: I loved this man, I bore these children, I nursed, and rocked and reared and loved them. I don't want her to replace me; I want her to complement me. I want for her to allow me to exist in the memories and hearts of my children. Somehow hanging those pictures on the wall made me feel like I was staking my claim, though I know they can come done just as easily as they went up.

While the Steinbach's were busy in their usual way, I was busy as well. I lay in bed and prepared the slideshow that I want shown at my funeral. Marie had scanned in many photos for me from the pre-digital era and I added photos from recent years. I tried to put the photos in chronological order but it is not always easy to tell the two year old from the two and one-half year old. No matter. I set the slide show to music: Louis Armstrong's What a Wonderful World and Edwin McCain's I Could Not Ask for More. I suppose the latter seems like a strange choice for someone in my situation, but it reflects my true feelings. I have had a wonderful life, filled with a loving family, terrific friendships, an adoring husband, and two blessed children. I have enjoyed my time on this planet immensely. Even this weekend, as sick as I felt, I still made it to three soccer games and cheered the kids on sitting in my wheelchair and breathing through an oxygen cannula. Maybe the lines "every prayer has been answered" and "every dream I've had's come true" aren't exactly valid. But they are close enough. For whatever reason, I don't think I was destined for a long life.

Making the slideshow was bittersweet. I enjoyed reminiscing about the sweet moments of my life, but I wept over having to let it go when I feel like I could have done and enjoyed so much more.

I begin Hospice Care today. I will be admitted to the inpatient facility today or tomorrow so they can try to figure out my coughing, nausea/vomiting, and edema. Hopefully within two days we will be able to come up with a medication regimen that keeps me comfortable and I can return home. I don't know if I will have Internet access there but if I can post, I will.


Chip said...

Michelle, my thoughts are with you.

Ana's World said...

Michele: Sounds as if you got all your ducks in a row. You truly are a loving inspiration to all of us who read your post. God bless you and your family and I pray for you everyday. Love, Ana

Jeanne said...

You are an amazing woman. Completely amazing.


Lori said...

You and your family remain in my thoughts and prayers. I am so glad that you had a good weekend with your family and that you got the collage done. I know that it will mean the world to your children!


Deborah said...

Hello Michele,

As I read the last paragraph of your blog entry, the word hospice keeping repeating in my mind. It is such a final word.

I read a NY Times article prior to reading your blog and thought about the new things they are finding for diseases like scleroderma -- and hoped some of them might help you but it sounds like comfort is the primary goal for you now.

I have fibromyalgia which, so far, hasn't been incapacitating -- just a fair amount of pain and fatigue and other things that fibro brings. I have been feeling sorry for myself lately as I am not doing well at keeping up with the house, friends, etc. But somehow, reading your blog gives me the incentive to try to do what I can and not to grieve over what's not done.

Sorry for rattling on. You are in my thoughts.


Jen said...

I don't think I have ever "known" someone was as strong as you.
You and your family are in my prayers.

Persnickety Ticker said...

Just...keeping you in my thoughts...

Anonymous said...

Hoping the hospice folks have gotten you stabilized and you're home soon.

Sue R said...

I am glad you'll be having the hospice help you. One thing I've found from working in hospice is that sometimes, the extra care helps people stabilize or even improve. It's not an irreversible decision, although it is a hard one.

If you remember Art Buchwald, he stopped dialysis, was on hospice a while, had time to make new memories with many people who visited him, wrote another book, and then, yes, he did die, but more than a year after he thought he would, if I remember correctly.

I wish you great comfort at this time. You have done a wonderful job preparing your family. You will not be forgotten.

Anonymous said...

Michelle, For those of us who have never met you in person, you have left us a collage of memories through your words. I look forward to reading your insightful thoughts each day. I wish you peace and comfort on your journey.


Marie Coppola said...

As someone who's lucky enough to know Michelle in person, I thank you all for taking the time to let her know how much she and her words mean to all of us.

Exceptional post! Thinking of you, always,

esands said...

Dear Michelle,
In April 2007 my daughter, Jillian, died from wegeners a rare auto immune disease. She left for me to raise a beautiful 4 yr old little man.
On the way home from kindergarten the other day he said Grandma I love you so much. And I told him I loved him too. Then he added, But I love my Mom the most. She is still my Mom. Is that ok? I told him that makes me and Momma very happy. So don't you worry they will remember and love you even if its from a distance.
Your posts have helped me as to knowing that we, none of us, are alone in life or death.
I hope to hear from you again. I wish you and your family peace and love. You and your family will be in my thoughts. Gramma E

Annie said...

ohh michelle. i wish i was there to read to you, to write for you and to help you with anything you'd need.

you're in my thoughts. my prayers and i miss you already.


Bird Spot said...

My husband just copied the Alison Krauss/Robert Plant CD and this weekend when I listened to track #13, I thought of you and Bill. It's a beautiful duo sung by both Krauss and Plant (so you really don't know if it's the woman or man dying, because they're both singing the same thing together) Anyway, I wish you could hear the song b/c the lyrics are much better put to music. If you do have access to the internet, you might google it on YouTube and have a listen. Anyway, here are the lyrics:

Your Long Journey
(A.D. Watson and Rosa Lee Watson)

God's given us years of happiness here
Now we must part
And as the angels come and call for you
The pains of grief tug at my heart

Oh my darling
My darling
My heart breaks as you take your long journey

Oh the days will be empty
The nights so long without you my love
And when god calls for you I'm left alone
But we will meet in heaven above

Oh my darling
My darling
My heart breaks as you take your long journey

Fond memories I'll keep of happy ways
That on earth we trod
And when I come we will walk hand in hand
As one in heaven in the family of god

Oh my darling
My darling
My heart breaks as you take your long journey

Julieann said...

Oh,Michelle---Tears just fell as I was reading this--how you have touched so many people with your words--Thank you!!

(((Prayers and Gentle Hugs)))


desert dirt diva said...

michele, did i ever tell you my daughter's name was michelle??? anyways, a few years ago, my friend passed from lung cacer, and he went around the house hanging up pictures of hime and there family.. the pictures are still there...your such a strong person....i do pray for you....I will so miss reading your post, and wishing that this reality was not so and that u would be well...hope hospice, will get you on the right track...even if for only a little while....

Anonymous said...

michelle, you do not know me but i feel as though i know you.

there is no possible way on earht i can know what you go through, i am neither a mother nor a wife but you have given me inspiration to share my love with my family and friends each day.

no matter what happens your children will always remember you, you will be their mom, their life, their love, their soul, the reason why they are alive.

from what you have written it seems as though the will be many people to share who you were with them and what they meant to you.

I hope they find the right meds for you in the hospice.

my thoughts and prayers are with you and those you love.


Tolman said...

For those of you who are so inclined, I have created a Web-based prayer calendar for Michelle. To sign your name to it, just click on the number of the date you wish to choose. Then add a message (doesn't need to be anything more than your name). The URL is:;Op=ShowIt

Cha Cha said...

I am constantly in awe of your grace.

Thank you again for sharing your experiences. You are making a difference in my life.

Thinking of you and hoping for good things with your hospice experience ...

Laurie said...

Michele- You are an incredible inspiration. You are so strong, thoughtful, a generous. Our thoughts are with you, Bill and your family.
Laurie (Gandrud) Pickett

KK said...

Dear Michelle,

I can't go to sleep reading all of your thoughtful words, starting with "The reports of my death" that Ryn emailed me today. Your writing is so genuine and is wonderful to read. We are saddened to hear about your declining lung function and worsening pain, nausea and vomiting, but your words and outlook are so impressive to hear. I think back to the time that I babysat Amelia when she was about a year old, and how she liked to have the radio on when she went to sleep. Now she is 10 and sounds like a strong and smart little girl.

Thanks for sharing your struggles and thoughts with us, and helping us appreciate even the unfairness that life can bring.

We hope that hospice can keep you comfortable and able to enjoy these times with Aidan, Amelia and Bill even more.

Max, Luke, Ryn and Ken Kreidl