The Lives to be Remembered

This page will hopefully be the site of many entries.  I hope that with it, stories, acts of remembrance, and the celebration of lives can gain a voice against the spaces of mourning and loss caused by the ravages of ALS.  It is my dearest wish to help those who have lost someone to this disease to find a voice where one was lost and to post that persons story, as best as it can be told by those that loved them, here on this site.  It is a simple (and indeed painful) act to remember a loved one, it is a tremendous action to brave the loss and celebrate the life. 

 These are the stories. 

These are the lives remembered.


My Mother Christmas 1973
My Mother Christmas 1973

As a Christmas present to my sister, father, and I the year that my mother passed away, my Aunt Thelma gave us a copy of a list of “Favorite Things”, that she and my mother had put together before her ability to write was gone.  Here is some of what she wrote:

Sandy Schulte- My Favorite Things.
1. The first things I remember:
Being in the car asking mom to unwrap Lowel (her younger brother) so I could see his feet.
Living in the apple tree by the back porch, in the woods, on grape vines, or in the creek looking for frogs.
2. Favorite sayings:
“Friendship is necessary, like philosophy, like art…it is one of those things that gives value to survival.”
“On a list of animals that have pink nipples: people, elephants, and pack rats…I am more than one of these.”
3. Special moments:
The wonderful smell of burning leaves and brush in the fall when dad would clear the yard.
4. My favorite season:
The cool of the fall and the gathering of nuts – hickory, walnuts, butternuts and hazelnuts.  The turning of the trees on the hills in the autumn.
5. My favorite trip:
Costa Rica
6. My favorite color:
7. My favorite food:
8. Who influenced me the most?
Peggy, my friend, who was always there for me and gave good advice.
9. Whom do I admire the most?
My husband, John.
10. Things that have made me the unhappiest/angriest:
my present illness.
I’d like to pass this special message on to all of you, remember the special things Sandy stood for and how she passed on all these special traits and memories.  Giver her life special meaning by celebrating it.  I love you all – Thelma.
There are so many memories and yet so few seem to be laid down in words.  Despite my father’s tendency to record everyone constantly in photographs, I realized in trying to find a updated image for the donation page this year, that so many memories are concealed inside those photos, with stories that are hidden within the image, the photographer, and the people who were there in the moment.  It is so important that we share those stories, to keep alive our memories and keep the promise of those lives lush and alive within us.  Please everyone, share the wonder of your lives and the celebrate those lives that you cherish.  Keep them from where the ravages of ALS can reach them.  I know my mother would want that for all of us.
Below is an excerpt from , a wonderful site of devotion of Steve’s love for his wife, Heidi.  Please visit them and read his passionate fight to celebrate his wife and their family’s struggle with ALS.  Their story needs to be told and remembered.
Wednesday, January 20, 2010

It has been a while, I know

Hi Everybody.

I have obviously decided to “privatize” my life recently. For me, most of the journey I feel like I can help with has been already documented. If you have read this blog, you know how I feel about many things. I have put my heart out there for pretty much anyone to see and left it exposed for a long time. I am not pulling any of it back, but I am deciding that it is time to re-focus my energy on the life that is in front of me and my family. If you have read my blog from back to front, then God bless you. You have seen my pain, my passion and many things that I never thought I would ever share with the world. If you read it all, you have probably felt a portion of my pain, and I have to apologize for that because it is the last thing I ever want to cause anyone.

So, this is what I feel the messages of this blog are…at least today…

1) Live your life. You never know when your existence on this planet will change forever. If you are blessed with health then for God’s sake, don’t waste it worrying about small issues or petty problems.

2) Love without fear. Love is a blessing. It is something that you can’t buy, borrow or sell. If it comes your way, you have to accept it and do everything in your humanly power to protect and enjoy it. If you fear losing it, you will kill it. If you don’t love with freedom in your heart, you will only jail yourself. If love goes away, then it wasn’t love and you can’t have lost it because you never had it in the first place. So what is there to fear, really?

3) Love changes. Don’t expect what you feel to be the same always. Just try to feel the truth of it. Whatever it is in your heart is what it IS. Don’t judge Love, just feel it. Give it back. It will take care of you and itself.

4) Be strong. It is simple to say, much harder to do. Nothing you do for yourself will ever be worth a fragment of what you do for someone else. Step up. Give. Don’t Give up.

5) You are amazing. The compassion I have felt from friends, family and even complete strangers has left me speechless and humbled on so many occasions I can’t even begin to describe or document them here. I remain in the debt of so many people that if I tried to even begin to repay it, I would be overwhelmed in seconds. I know you don’t expect it, and all I can do is try to repay the grace that I have felt back into the universe in some small way. The messages contained within this blog are a small token of my gratitude and humility. Love flows out to you, whoever you are, from me every day.

6) ALS Sucks. It sucks worse than any disease I have ever heard of. A diagnosis of ALS is currently a death sentence. There is no treatment, there is no cure. If you have read this blog, you know what it does to those affected by it. You know what it does to their friends and families. I won’t belabor those points here. I will say that we can’t quit looking for a cure. The fact that so few people have it compared to other diseases is no excuse. There are no survivors of the disease to advocate for it only devastated people left trying to move on with their lives. Genetic/Familial ALS only results in about 10% of cases, so the direct threat to people related to those with ALS is even somewhat remote (by comparison.) It is not a pretty scenario. I have had to take a break, but I will not stop advocating and educating people about this horrible devastating disease that NO ONE should ever have to suffer. (Ironically, when I spellcheck my blog, ALS is not recognized as a word) 😦

God Bless You.

2 responses

16 08 2009
Andrea Messer

I grew up with Sandy’s daughter and all I remember is how she was the coolest Mom in the neighborhood. There was a time span of about four or five years where Wendy and I were always together. I think I stayed the night at her house at least once a week during that time frame. Sandy always encouraged our crazy games we came up with and let us be ourselves. She was always there for us when we needed a ride or some sort of adult supervision. Sandy would always come up the pool during family swim time so we could actually swim the entire day! She was always the mom that us Girl Scouts wanted to ride with because she let us listen to our music and ride in the back of the station wagon. I am sorry I was not around for Sandy’s memorial, I would of loved to pay my respects to Wendy, Shawn and John. I can not imagine their pain. Sandy was a wonderful mother and friend.

28 03 2010
Dick Millet

Liz was the mother of my four children, the love of my life and the most compassionate person I’ve ever known. She loved life, respected everyone and devoted her life to: 1: her children and 2: those mentally ill patients that had no one else looking out for them. She passed away from ALS on November 23, 2009.

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