One of the BEST daily emails I subscribe to is called Peaceful Daily.  Thank you Sandy for your daily wisdom, and especially for this story....a reminder to me of all the "shit" that's been shoveled my way.... it doesn't have to bury me, it can be a way up and out.  How are you shaking off the dirt and stepping into your freedom.  It's always a choice!

Peace


One day a farmer's donkey fell down into a well. The animal cried piteously for hours as the farmer tried to figure out what to do. Finally, he decided the animal was old, and the well needed to be covered up anyway; it just wasn't worth it to retrieve the donkey.



He invited all his neighbors to come over and help him. They all grabbed a shovel and began to shovel dirt into the well. At first, the donkey realized what was happening and cried horribly. Then, to everyone's amazement he quieted down. A few shovel loads later, the farmer finally looked down the well. He was astonished at what he saw.

With each shovel of dirt that hit his back, the donkey was doing something amazing. He would shake it off and take a step up. As the farmer's neighbors continued to shovel dirt on top of the animal, he would shake it off and take a step up. Pretty soon, everyone was amazed as the donkey stepped up over the edge of the well and happily trotted off!

MORAL: Life is going to shovel dirt on you, all kinds of dirt. The trick to getting out of the well is to shake it off and take a step up. Each of our troubles is a steppingstone. We can get out of the deepest wells just by not stopping, never giving up! Shake it off and take a step up.

Grieving is funny business



Dec 1981.  L-R Back: Dad, Auntie Shirl, Mom
Middle:  Nam & Mac
Front:  Grampy & Grammy

Over the years, I've worked through the loss of people I dearly love; my dad, 25+ years ago; all of my grandparents; a couple of friends from my youth; and Bill, a little over 7 years ago.  I know definitively that I am resliant.  I don't stay sad for too long.  I always bounce back from loss.  

I've also learned over the years that for me, grief has funny, often peculiar, triggers.  The 1st year after I lost my dad was tough, but I was pretty numb, so milestone days (his birthday, Father's Day, Christmas, and the like) passed with little notice.  I was sad, but not grief stricken.  That came in the 2nd year, and in a big way!  My heart had healed just enough to form an emotional scab.  It didn't take much (a song, a piece of paper, a random comment, really anything!) to rip that baby off and expose the tenderness, unleashing a tsunami of tears. There were times when I was sure that I would never stop crying and that my heart would never, ever mend.  And so it has gone with the other losses in my life.  1st year - numb sadness.  2nd year - horrid, unrelenting grief and tears.  3rd & subesquent years - better, a little at a time.
 
This past summer, I finally completed a search for a primary care physician and had my first appointment with Dr. Alphaeus Wise.  Long story!  As part of the new patient process, I had to list, in one place, my family history.  I'm sure the last time I had to do this was some 30+ years ago, when everyone was still alive!  Good Lord!!!  As I completed the form, I found myself alternating between tears of sadness and joy.  Quite surreal I promise.
 
It was the first time, in a VERY long time that I found myself alone with my personal history; thinking about my family and how much they meant to me, how much of their history I carry, and what characteristics each one gifted me.  My Grammy Jean was "uber" creative and ran a very organized household.  My Grampy was strong, charismatic and stubborn. My grandma Nam was social and demanded good manners.  My grandpa Mac was "chill", quick with a smile and fiercely loyal.  My dad believed the best in everyone and pushed me to be authentic (walk your talk!) way before 'authentic' found its way into our vocabulary.  These qualities and so many more are who I am.
 
So the reflection time in the waiting room brought a torrent of inexplicable tears.  Thank goodness for Kleenex pocket packs! I finished the forms and mopped up most of the sadness. So, imagine my surprise as I start crying, yet again, when my new doc's opening line, after introductions, is "so...you've been through a quite a bit in your life!"  Not the suave first impression I would have hoped for! 

And so it went; sniffles, tears and laughter as we went thorugh my personal and family history.  Lucky me...Dr. Wise is just that, and found a way to turn the conversation around so I could find my way back to my sunny self. 

I share this in the hope that you will be gentle with yourself as you walk your path of grief.  Don't be surprised by anything, just "be" with it and know that all is in order. 
Grieving is a funny business.  Just when you think you have it all figured out - you don't.  And it's all good!

How about you...how has grief played with you?  Please share.

 

Anniversary #2

June 18th of 2012 marked the 2nd anniversary of my mastectomy surgery.  The day passed by pretty quietly!  It seems so long ago and yet almost like yesterday.  Time is funny!!

Daily, I'm reminded of my surgery as I inspect my surgical scars.  As scars go, I think they're quite beautiful!?  Vivian Ting is truly an artist!  Thanks to my oncologist, Dr. Garrett Smith, I take a 25mg dose of Aromasin daily to block the estrogen my body naturally produces. Daily, I try to get in some exercise to minimize the fat cells on my backside, which, by the way and thank you very much, is my body's main sources of estrogen in my post-menopausal status, !!  The irony!

And daily, I try to end each day with at least 5 things that I am grateful for.  "Vibrant and perfect health" is nearly always at the top of the list.  2 down, 3 to go...happy anniversary to me! 

 

Off the Bench…Back in the Lineup Again!

I am a huge baseball fan! And…even though they regularly break my heart, I remain true (29 years and counting) to the orange and black jerseys worn by the San Francisco Giants. My brother, an equally devoted Oakland A’s fan, and a few other friends have offered to pay for therapy! Hopefully, this bit of insight into my psyche sets a context for this post.

I’ve missed writing. I’ve been on the bench for 6 months after taking an “I found a lump” curve ball to my left breast on January 21st. Four little words that have significantly changed my strategy to playing this game called life. Turns out, I was lucky to get a “brush back” which allowed me to assess my life and make some changes, so that I have the stamina to stay in the game.  Here are just a few of the life lessons I’ve learned from baseball and my time on the bench:

• In January, when it’s still gray and icky, my heart leaps hopefully when I can start counting the days to spring training, along with all of the sports pundits. Hope springs eternal in January – it’s a new season and this could be the year we go all the way!  Every 365 days, I get to be hopeful - to start over to reach my personal dreams.
• There’s a lot of strategy to baseball. Pitching rotations and match-ups; hitting lineups; officiating; home or away; number of days on the road, and so much more. Same as life. Lots of things to consider when making changes, but it helps to know my team, how rested I am, am I on my home turf or on the road, what/who can I always count on?
• It’s a team game that takes 9 players, plus a cast of back-ups. And…any one player can be the hero or the (scape)goat for any given game. I’m only as good as the people I surround myself with.
• One game does not a season make. One has to shrug off a bad break or performance and mentally get into the next game fast. There’s never a lot of time for boo hoo-ing or second guesses. Equally important, a good performance today, does not guarantee a good performance tomorrow!
• Each player is a specialist, but there are times when opportunity knocks and one needs to abandon specialty to get the job done.
• 168 games makes for a long season, so players must have endurance and be resilient to make it through a full season. Health, training/preparation, attitude, support and flexibility, all play into one’s ability to make it through a long season.
• The game is on the field! Fans and coaching makes a difference, but in the end, the coach and fans are not on the field, the players are. If it is to be….it’s up to me!
• For a variety of reasons, players can spend a lot of time on the bench and not on the field. No one wants to be on the bench any longer than they have to! Time off is good. Too much time off is not good – at least for me!
• From a purely biased perspective, San Francisco has the cutest little ballpark in the league, and where else but a ballpark, can you enjoy beer, friends, and the smart crack of a line drive? It’s good to remember to stop and smell the roasted peanuts!

Six months has brought many changes and insights which are great topics for a blog about meaningful giving. For now, I am ready to play ball, so I’ll see you on the field - or in this case - on this blog!!!  For all the baseball fans, what are your favorite ballpark memories? What life lessons has baseball taught you? Please comment and share your stories!!

If you are interested, my CaringBridge online journal chronicles much of my personal journey with my breast cancer diagnosis.

Photo by Backpacker.

Rock on Carla Z!

If you've not discovered and/or taken the time to read the blog Carla Muses, you are seriously missing out.  Just my opinion.  Carla Zilbersmith is sassy, smart, and wicked funny.  Oh...and she just happens to have ALS.  I didn't know her bALS (before ALS) - my loss I assure you - but I suspect the disease has only served to sharpen an already razor-sharp perspective on everything...from the world, politics, dating, self care and quite literally, EVERYTHING in between.  She is a gifted writer, gamely sharing her ALS journey in full, out loud, living & breathing, color.  Late to the game, but yes....I am a fan!!

With that in mind, you should not be surprised to hear that she's written an informative and (it wouldn't be Carla's if it wasn't!) irreverant guide to living (with a capital "L") with ALS instead of waiting around to die from it.  While the Vain Girl's Guide to Living with ALS is clearly targeted to women living with the disease, never fear.  With and open heart and an open mind, there is something for everyone.  There are quite a few take-aways for me!!!

Once your laugh muscles are warmed up, the next step is to check out the film "Leave Them Laughing - a Musical Comedy about Dying".  Treat yourself to a full, "Carlaful" experience.

Enjoy!!

Developing YOUR Story - a few tips/tricks

My best friend got married this past Sunday and as her coordinator, I have been consumed with ALL things wedding related.  It was a GORGEOUS wedding, perfect in every way.  So....now I'm back to the real world and realize that a month has passed without a new entry to Defeat ALS.  My how time flies!

In the past, on a number of different occasions, I've mentioned "telling your story".  Generally it's been in the context of advocacy and involvement with changing public policy.  I believe you need to be able to tell your story, in a concise and compelling way so that you can inform and educate, whenever the opportunity presents itself.  With ALS, this is particularly difficult, but critical, since few people know much beyond how to spell ALS.  Each time I talk about developing a story, I get a blank look or the question "how do I do that?"  It's hard to tell someone else how to write their story....I don't have the same perspective, experience or voice.  And besides....it's not my story to tell!

A few months ago, a childhood friend referred on of her friends to me for support, following the loss of her father to ALS.  Today's post is my response, which includes my thoughts on how to develop and tell your story.  I hope you find it helpful as you document YOUR story.

Dear Denise...

It's taken me a couple of days to think about your question and to (hopefully! answer in a thoughtful way.  I'm thinking that the true goodness of Facebook is that we don't actually need to know each other - we can be brought together by a mutual friend.  Because we share a very special bond - I'm pleased to "meet" you!  First I'm so very sad that you lost your father to this s^%&ty disease.  While there is never a "good" time to lose someone you love, I'm sure that losing him just before you delivered your daughter was especially difficult.  I can't imagine that pregnancy hormones and the joy of a new baby mix very well with grief.  Thank you for your kind words regarding my husband.  This is an especially difficult time of the year for me, so I truly appreciate your thoughtfulness.

Congratulations on making the decision to participate in the Idaho Walk to Defeat ALS.  I found the walks a good way to channel my grief - I had something to focus on besides a broken heart.  The walks are also a good way to organize friends who want to help you.  Unfortunately I'm going to agree with your friends and tell you that telling your story is the best way to educate people about the disease and to work through your own grief.  You don't really have to go into anything long or drawn out.  the good news is that the story will get better and your delivery will get easier over time.  Interestingly, this was one of the Twitter messages in my inbox this very morning!

"@schwerdtfeger:  Speaking: Don't look for grandiose stories.  Tell stories about YOUR life.  The audience will connect with the emotions you describe."

Your ultimate goal is to educate people about the disease, share your experience, talk about what the ALS Association does to help people with the disease and then ask them to help you honor your father by supporting the good work done by the association.  I believe your focus on raising money to find a cure will ultimately help you speak.  Here are a couple of points to consider as you craft your own story.

When I share my story, I will generally start by asking someone if they are familiar with ALS.  Depending on the answer, I might add, "You may have heard it called Lou Gehrig's disease."  90% of people will recognize it then.  Lately I've added that we just celebrated the 70th (yes 70 years!) anniversary of the famous speech give by Lou when he retired from the Yankees in 1939 because he was too weak to play ball.  You may have heard the speech.  I call it the "luckiest man speech" and there are lots of versions out on YouTube or the Lou Gehrig Wikipedia page.  Major League Baseball did a pretty big push earlier this month, so folks may have seen some of the stories and advertising.

I talk briefly about the statistics.  In the US, 16 people will get an ALS diagnosis today and 16 others will die from ALS.  One person every 90 minutes.  Less than 10% of the cases are geneticly transmitted and veterans returning home from mid-East conflict duty are twice as likely as the general population to receive an ALS diagnosos.  ALS is truly non-discriminatory.  It strikes young (17), old (83) and everyone in between.  My husband was 49 years old when he was diagnosed.  Whenever somebody asks me "why?" to any of these questions, I am hones and say I don't know.  Scientists are working on it, but there's been little, significant progress.  And I'm getting pretty impatient!

Then I move into helping people understand the disease.  I recently came across a wonderful analogy that people "get" right away.  Talk about "...being on the beach with sand for miles around.  We've all seen the dads who allow their children to use their plastic pails and shovels to bury them in the sand.  When the children finish the project they are generally happy with their work and the dad looks indulgent.  You see the dad's head sticking out of the sand, he's fully aware of what has happened/is happening, but cannot move anything.  He cannot even get out of the sand by himself".  Then you can say...."imagine what that might feel like."  And then let that sit in the air for a couple of seconds.  Then you can quietly say, "that's what it was like for my dad."  I promise you, people will have a new understanding of ALS!

You can then share a quick story of what it was like for you as a caregiver and how hard it is for you that you lost your dad before he could even hold his first grandchild.  Your daughter will grow up with stories about her grandfather, but won't have his knee to climb up onto to share a story.  Carry tissues for a while, this part will be hard, but it really helps people connect with you and your loss.  Take a deep breath and settle yourself.

I would then talk about the walk and why you are asking for money, especially in these tough financial times.  I find that talking about honoring my husband's memory works pretty well.  I also talk about the support groups and regional care managers funded by the association.  If your dad benefited directly from the services offered by the chapter, PLEASE SHARE this information.  Talking about the good work done and how you/your family personally benefited, makes it real!  I will sometimes talk about how expensive the disease is, especially in the late stages, often running $225K annually for equipment and full-time skilled care.

Finally, I come back to Lou Gehrig.  I ask people to think about the diseases that have discovered, in the past 70 year...like AIDS, Breast and many other types of Cancer, Parkinson's, MS, Swine Flu and more.  In our lifetime, researchers and scientists have been able to find what causes these diseases, created tests for early detection, have found therapies to help patients manage symptoms and to extend life and/or live relatively normal lives.  None of this has happened for ALS.

I then ask them to walk with me or to go to the website and sponsor me.  I talk about the walk and joining Bill's Brigade.  If they can't walk, I ask for sponsorship.  I've taken checks for $25, $50 (and more!), but lately I am asking people to think about a regular monthly pledge of $10.  It's only $2.50 per week, less than a fancy coffee drink at Starbucks, but it really means a lot to the chapter to support their work.  Most people can find $10 a month in their budget and not miss anything important in their household.  But $120 annually to the chapter is significant!

I can also tell you that this is a very effective way to craft an email campaign.  Go to the Walk website, register a team to honor your dad, and then us the email tools provided by the chapter to send "your story" out to all of your friends/family via email.  When I use this method, I thank them for their support and ask them to pass the email on to their friends and family. SOMEONE else has been impacted by the disease and will want to help you out!

I sure hope this helps!!  You are in my thoughts and prayers and I appreciate your trust in reaching out to me.  Please give my best to Brenda.

Kathie