Meredith's Voice

Last week we got the cutest cocodot invite for a 3 year old Milk + Bookies birthday party.  What a cute name and great idea... I had to learn more!  I immediately headed to the Milk + Bookies website.  Meredith Alexander and her partners are not only inspiring parents, but they're teaching young "future philanthropists" the importance of giving. 

Read!  Give!  Grow!

By Meredith Alexander

As a new mom, I didn't want to spend EVERY weekend going to birthday parties and soccer games with my kids.  I was hungry for meaningful experiences with my small children, experiences that would reinforce the values that our family feels strongly about (like giving back and reading).

In 2004, I decided it would be fun to throw a party, which I named "Milk + Bookies", at the local children's bookstore, Storyopolis, and invite all our friends with kids.  Once there, we asked the kids to choose a book that they would want to give to a local child without any bedtime stories.  We then asked the young guests to inscribe a bookplate (most of the kids could only scribble with a crayon), stick it in the book and then drop that book into a box for a local recipient group.  

We had milk and cookies and story readings - it was fantastic!  When the check out line had a 30 minute wait to buy books, I knew I was on to something and that other families were looking for theses kinds of experiences as well.

Zoom ahead four years.  After hosting Milk + Bookies parties biannually, I knew it was time to grow.  I brought on two of my smartest friends, Laura Zimmerman and Heidi Lindelof.  Luckily for me, they had no idea what we were getting in to so they said yes to sitting on the Board of Directors.  We applied for a 501 (c) 3 tax exempt statues, built a website, created models for birthday parties, class projects and book fairs.  Then, we went national!

The Milk + Bookies mission is to recreate the experience (choosing, inscribing and giving) as much as possible so that kids get switched on the amazing power of giving and how great it makes them feel.  We hope that it will set them on a path to a life of giving/ helping/ sharing in ALL ways.  The exciting by-product of our movement is getting thousands of books into the hands of kids who really want (and need) them.  

To date, we have raised over 20,000 books and inspired over 4,000 young "future philanthropists".

Read!  Give!  Grow!

Toby's Voice

One of my best friends Gina is the sweetest woman in the world.  She connected me with her mother in law, Toby Katz, who writes a column for the Parkinson's Disease Research Society.  Toby was diagnosed with Parkinson's about four years ago.  Her voice inspires patients throughout the country!  She wants to be a sounding board for patients to share their feelings, concerns, experiences and fears.  Her voice is so strong that it relates to everyone undergoing a difficult time.  Enjoy Toby's voice!

Tell Me How You Really Feel

By Toby Katz

Hi, my name is Toby Katz and I am a Parkinson's patient...  I am very lucky.  my symptoms are very mild, just a tremor in my right arm and leg and muscle spasms in my shoulders.  On a good day you probably wouldn't know that I suffer from Parkinson's, but as Parkinson's patients, we all know that a "good day" for us is not the same as a "good day" for someone else.  

Like many of you, I do not feel ready to attend a support group, but I would like to have a positive forum for those of us who just don't want to burden our friends and families with the problems with the problems we experience daily.

As you see from above, the title of my column will be "Tell Me How You Really Feel."  I hope to become a sounding board for patients to share their feelings, concerns, experiences and fears, and to become a connection between the medical community and the patients.  I do not hold myself out as a medical professional, nor will I give out any medical advice other than to refer a patient to a specific doctor or support group.

OK, here we go!!

The acronym for my column will be the word "HOPE."

H - HONESTY

Be honest with yourself and those around you concerning the implications and manifestations of Parkinson's.  Be honest with yourself when it comes to recognizing your attributes and limitations.

O - OPTIMISTIC

Try to be positive, it can be contagious.  Focus on all of the things that you can do and not just on the skills that seem to be fading.  Pinpoint the everyday tasks that you can improve on and strengthen.

P - PREPARE

Work on maintaining and even improving your health with exercise, meditation, and spiritual regimes.  Plan your day to be able to get the most positive experience possible.  Do not give up until you can find a doctor that you can relate to and be comfortable with, someone who allows you to be a partner in your treatment and who truly listens to you.

E - EDUCATE

Educate yourself and others.  No one can understand your experience if you do not share it with them.  Research the research.  Stay abreast of all the new advances in research and medical trials.  Every patient has a different perspective based on the path of the progression of their disease.  Be empathetic.  Nothing feels better then to put yourself in someone else's shoes and to stop focusing on yourself for a while.

Finally, from my experience, one of the most positive things that has come with my diagnosis is the art of communication.  Not just talking but listening.  Taking ownership of your own behavior and the power you have to alter your life!  Making decisions based on strength instead of weakness and most importantly, putting yourself in a position to feel support, the ability to accept being educated and the gift of empathy.  Don't be afraid to take that next step, put yourself out there, and risk failing, or you will never know what it feels like to succeed!!!

Let's Get Started

tellmehowyoureallyfeel14@gmail.com

Caroline's Voice

Every year my friend hosts the most amazing "girlfriends luncheon".  It always comes at the perfect time, when I'm craving an afternoon of good food and fun conversations!  I met Caroline four years ago at the first luncheon.  She co-founded the LA Diaper Drive, and epitomizes cool charity mom!

Making a Difference

By Caroline Kunitz

A 53' semi pulls up in front of my house in Santa Monica to drop off the equivalent of 20 elephants worth of diapers.  Drivers crane their necks to watch.  People walking their dogs ask if I run a day care, which I do not.

How did we get here?  Rewind six years.  I'm in my living room watching Jessica Seinfeld on The Today Show discussing the million diaper drive her New York City charity, Baby Buggy, was hosting.  She mentioned that low-income mothers have to decided between buying diapers and buying food on a daily basis.  My heart broke.  I mentioned it to a friend, Melissa Ratcliff, who asked, "How hard is it to raise a million diapers?"  LA Diaper Drive was born.

LA Diaper Drive is a volunteer-based charity that gives diapers to low-income families in Los Angeles.  We partner with other charities and community based organizations that use the diapers as an incentive for these low-income families to attend important classes.  Some examples include LAUSD's Homeless Program, Friends of the Families' Young Moms/ Young Dads programs for parents ages 13-21, and The Children's Institute, which specializes in the treatment and prevention of child abuse and neglect.

We discovered that it is actually very hard to raise a million diapers.  It took five years for LA Diaper Drive to reach that goal.  Then, in 20110 we gave away another million.  1.3 million to be exact.  We give away diapers donated by families or diapers purchased in bulk at an extreme discount.

The current economic times mean more families than ever are below the low-income guideline.  You can make a difference without spending money.  Donate diapers your child has outgrown to LA Diaper Drive, or host your own diaper drive.  Ask friends or colleagues to bring diapers to work or school, or ask them to bring diapers in lieu of gifts to a party.  LA Diaper Drive can help you with flyers and more.  You can also hold a garage sale and donate the money to LA Diaper Drive or another charity so we can purchase diapers at a discount.  Or donate your time.  Every charity needs warm bodies to do things like count diapers, sort or distribute items and more.

To find out more about LA Diaper Drive check out our website.

Happy Volunteering!

Ginger's Voice

The minute I met Ginger I was intrigued.  She has such a zest for life, and I'm always excited to hear about her latest adventure.  She recently returned from a trip to Cambodia where she met children infected with HIV and AIDS.  I'm honored to share Ginger's voice.

Cambodia Gives New Perspective on Taking Risks

By Ginger B.

My husband and I purchased a trip at a charity auction to raise money for Friends Without a Border, the funding and program supporter for the Angkor Hospital for Children (AHC) in Siem Reap, the second-largest city and tourist center of Cambodia.  We didn’t think too much about what we were getting into, both of us being a bit spontaneous and even more so after finding the open bar.  All we knew was we were going on an adventure, but little did we know it would change us forever.

There is an HIV problem in Cambodia that continues to rise in rural areas.  When farmers find themselves in the close company of the city’s prostitutes -- with little education on HIV and a cultural stigma against condoms -- the men contract the disease.  Returning back to the farm months later, they bring home the disease to their wives.  As their family grows, they unknowingly pass the disease to their newborn babies.

As the doctor told us these stories on our drive towards the outskirts of town, it became clear that these children had seen the darkest moments of the world:  loss, physical pain, and shattered dreams.  They had lost parents, felt the painful repercussions of HIV-related illnesses, and had an uncertain future dependent on medical advances and their access to them.  On top of this, they lived in poverty.  I expected a very glum situation.

We arrived at the first home.  The children were playing hide-and-go-seek, laughing, smiling, with joy in their faces.  When they saw the doctor, one child came forward, no less content than the others.  The doctor sat with him, checking his supply of pills and giving him a short physical, joking with him and tickling his feet.  Although small for his age, nothing about the child would have indicated his illness.  And in his eyes there was not a speck of that glumness I anticipated.  He was surrounded by his extended family, cared for by this doctor, and in one of the most beautiful places in the world.  He didn’t have much in the way of anything material, but what he did have was enough.

As we drove back down the little dirt road, I felt privileged to be able to peek into this world.  To see joy in people’s eyes firsthand, due to nothing except that for today, things were okay.  Today they had some food, today they had health under control, and today they were surrounded by loved ones.  That was all that was needed. What I realized is it takes very little to live, and the chance to be happy does not suffer as long a person has food, good health, and have a community to feel connected to.

So what does this have to do with risk?  Many people, including myself, hold back from doing things because of the fear of losing something.  Fear of losing time, money, or face to others and even yourself.  What if this doesn’t work?  What if it’s a waste of time? What will they think if it’s a total failure?  Who am I to think I can do this?  It can be paralyzing. 

But, to look into a world and see somebody who has lost everything, and still see joy, the world still turning, hope and love still swirling around, then why NOT take a risk?  There is nothing to fear, the best humanity has to offer is still there even at what most westerners would consider the “bottom.”  The only difference is lack of material things, but this rare experience showed that our stuff isn’t the stuff that joy is made of.

T.S. Eliot wrote, “…And the end of all our exploring will be to arrive where we started and know the place for the first time.”  Those children in Cambodia gave me something to walk away with that would change me forever, by showing me my own world in a new way.

This year, I will take more risks.

To make a donation to Friends Without a Border, providing funding and program support to the Angkor Hospital for Children in Siem Reap, Cambodia, please visit http://www.fwab.org/.

Debbie's Voice

A friend sent me one of Debbie's Lymphoma updates.  She was so straightforward; I knew readers would connect with her story.  Right before writing this story, not only was she finishing her last round of chemo, but she was rushed back to the hospital for a terrible blood clot.  The next week she was rear ended while driving home from a lecture on Lymphoma.  Despite all her hardships, we spoke about turning her day around through finding some positive inspiration.  It's so easy to give up and succumb to a disease, especially when everything seems to be going wrong.  It takes courage and fortitude to fight towards healing.  I'm honored to share Debbie's story.


My Lymphoma Life

By Debbie K.

Starting with today, my last day at the oncologists', this is my chance to tell my onco-tale. I never knew I was sick; this all started innocently last spring.  My work as a real estate broker had me at the computer.  That led me to carpal tunnel syndrome.  From a sore hand to a nerve test, to an internist, to a gastroenterologist, a diagnosis.  Next step on the hit parade (as in what can they hit me with next?) was a trip to the thoracic surgeon.  A biopsy led to a diagnosis: nodular sclerosis Hodgkin's lymphoma.  I was referred to a wonderful oncologist who specializes in lymphoma. 

I started chemo at the beginning of September.  Chemo was every two weeks, and followed the next day by hydration and a shot of a white cell-building drug, Nulastin.  My chemo mixture was ABVD. That's Adriamycin, Bleomycin, Vinblastine and Dacarbazine. The A is responsible for hair loss, and makes your pee-pee pink! What a combination!

I was very lucky, no egregious side effects. I could drive to the appointment, and after the 2.5 hours of chemo, drive home with stops at the bakery for my favorite cookies, or the market. I felt fine. I attribute this to my years of exercise and good eating.  After two months of treatment and some tests, my site had shrunk from 20 cc to 7.  I felt like I was the poster child for Lymphoma.  I was still holding off on shaving my hair off. At the chemo center, a volunteer brought a cart by with goodies to snack on.  They were on the top shelf, and wigs on the bottom, all donated. I have 3 very beautiful wigs, one even in my hair style, two more adventurous! I have only worn them twice. I prefer ski hats, scarves or stylish (albeit old) hats. I have an antique hat rack with 10 hats on it, and now I am wearing them.  Here I am, having finished chemo just yesterday, with a little hair left. It's enough to peek out from under my hat.

My doctor gave me next month off, and then in February, I will start radiation.  I can certainly use the time off; my 60^th birthday is in January, and I plan on celebrating big time!

Through all, I have met the most wonderful people. The oncology group had the kindest nurses, the best lab techs, great receptionists, and free valet parking.  Most chemo times, I had a friend with whom I played Scrabble or who took me to lunch after chemo.  My friends have been super-supportive and they have helped me keep my chin up throughout these past months.  I have a new friend who was introduced to me just a few weeks ago.  She was recently diagnosed with Non-Hodgkin’s Lymphoma and will start chemo soon.  I am glad I met her, she's so upbeat.  I hope I can be of some help to her. 

My mother had metastatic breast cancer 30 years ago. Her doctor is in one of the oncologists in the group I go to.  Small world…  I always feared going for my mammogram. My mother had been diagnosed when she was 55.  I thought that was my destiny. I never expected Lymphoma. Apparently, this disease is on the rise. The doctor said it is tied to stress.  I can understand.

My advice would be to get regular checkups, get a blood test, eat healthy, be active, and have friends.  Friends to have lunch with, to go on trips with, to go to medical appointments with, to plan parties with.  Friends to support you through thick and thin.

Candice's Voice

When I first started my blog I wasn't sure what to expect.  I had my doubts, wondering if anyone would really care about what I had to say.  Then I met a reader who has now become a friend.  Candice is an inspiration.  She quit her job and became a volunteer at Casa Emanuel orphanage in Guinea Bissau.  I am honored to share Candice's voice.

The Gift of Love

By Candice Scott

It was exactly a year ago when I set out for a small country in West Africa called Guinea Bissau.  After years of wanting to volunteer in Africa, I had the good fortune (or maybe it was fate) to move in upstairs from a wonderful couple that had just moved from Guinea-Bissau. Mika and Kjetil were those kind of fully-realized, fascinating people, with distinguished careers with the UN, the World Bank, busy raising a newborn and developing documentaries, setting up charities...the kind of people that make you wonder, "how do they do it all?"  Through their contacts, they put me in touch with an orphanage called Casa Emanuel run by two Costa Rican nuns and missionaries.  In a whirlwind 6 weeks, I confirmed my stay, arranged my flight, and decided to set a BHAG of $10,000 in donations.  What is a BHAG?  It is something I learned while working at Nike, a phrase coined by Jack Welch (former CEO of General Electric).  It is short for "BIG HAIRY AUDACIOUS GOAL"....it is a goal that is way outside your comfort zone, so far out that it seems impossible but that stretches to you achieve something greater than what you ever imagined.  Emails went out to friends and family, and tears would come to my eyes every time I received a donation.  Each one resonated with me - an unemployed friend struggling financially sent a donation, a distant acquaintance sent a check with an extra zero that made look twice to see if it was a mistake, clothes and medicines were dropped off, strangers would hear and send contributions, and my company generously matched donations.  And, guess what?  We not only amassed over $10,000, my friend Erika and I set out with 7 duffel bags filled with clothes, medicine, toys and shoes.

Arriving at the orphanage, we were greeted by smiling faces and overjoyed nuns, who whooped with excitement over small things like Neosporin and baby aspirin.  What I did not know is that the orphanage is solely dependent on donations andwas running very low on shoes for the children.  So the nuns began praying for shoes for the children, and then we show up with over 150 pairs - 1 for each child.  I was stunned to learn this, as the way I had come by the shoes was very random - I had received an email from a stranger who worked for Crocs.  He received my email from a friend.  It seemed like happenstance at the time, but when I heard the story from the nuns I realized my life was part of something much bigger than I could fathom.

Before I left for Africa, I worried that I might not have the skills to be an effective volunteer - I am not the best with a hammer and don't know any rare plant concoctions for burns - but I quickly realized that I was really skilled in holding hands, cradling babies, and dispensing hugs.  With maybe a 20 to 1 ratio of children to volunteers, the children yearned and were starved for affection and physical touch - one particularly eager group of three year olds I nicknamed the hugging bandits due to their race to rush into my arms every day.

I left the orphanage with 6 new godsons that I now sponsor for $20 a month, which pays for their education and living needs.  I told the children that not only did they have 1 godparent they had more than 200 back in the US - every single person that donated funds or items.  Their mouths dropped in amazement and they still brag about it!  Can you believe that just a simple thought or concept that someone loved them was enough?  I don't have children yet, but each one of those children made me understand the selflessness and love that goes into being a parent.  To say the experience was transformational is expected, but the love I felt for children I had just met was not.  Like many other volunteers have observed what I ultimately learned about myself and what I received was much greater than and far surpassed what I gave.

Donations for Casa Emanuel may be made via Life Link Rescuing Children.

Maya's Voice

I met Maya a few years ago, right after her husband died.  I had just delivered my first child and was told the function of my heart was dangerously low again.  I didn't know how much more devastating news I could handle.  Then I met Maya, a vision of courage, hope and a true testament to living life without regret.  She was smiling as she spoke about her husband and told me their story.  When I saw her again earlier this year she was so excited, Glamour featured her story.  She was willing to write a separate entry for my blog, but I thought her voice in the published article was so powerful I had to share it with you.  Thanks to Maya I stopped feeling sorry for myself, and started to live again.  I am honored to share Maya's voice.

6 Love Talks that Make You Closer

January 4, 2010

By Maya Fulcher

At first it sounds like a movie cliché: Jack and I met at a wedding where I caught the bouquet. I'd noticed him the minute he walked in, so when he asked me to dance, I was giddy. After one song, I felt like I'd known him my whole life.

But on our second date, Jack pulled some pills out of a vial on his key chain and said that he had a liver disease. At 15 he had been told he'd live a year, but at 27, after lots of medicine and procedures, he was healthy, playing racquetball, mountain climbing … and having dinner with me. I thought I could handle it. I was just 19 and didn't grasp how serious his condition was. I did know pretty fast, though, that we were serious. As we dated and got close, I could imagine being with him forever.

Eventually the liver infections came back, and within five years we got news from his doctors: Jack would need a transplant to live — and, said Jack, to get married. He didn't want to propose with a bad liver. He couldn't bear leaving me behind.

Finally, on July 2, 2005, Jack had his transplant. But the surgery didn't have the happy outcome we'd hoped for. The doctors found gallbladder cancer. Still, seven months later, at sunrise on a beach near the hospital, Jack got down on one knee and proposed. He was so bloated from chemo-induced kidney failure that I had to help him get back up. But I had no doubts. However long I could, I wanted to be his wife. A few weeks later, after a session of dialysis (to celebrate, the clinic staff sang the wedding march: "Dah dum dah dum …"), we eloped.

Our hope for a full future lasted not quite three years. Then things went bad. Every medical complication you could get, Jack got. Finally, together we made the decision to stop chemo and begin hospice care at home in August 2008. One night in his last couple of weeks, I said to Jack, "What do you want to talk about? What do you want to say to me?" That's when our amazing nightly talks started. We shared it all, things we'd never brought up in our 10 years together. Jack died on September 21, 2008, but I can say I have no regrets. Well, that's not entirely true. I wish we'd talked about all these things sooner. So I beg of you, talk about the tough subjects. In honor of my Jack, when you're with someone you love, ask each other these questions:

1. What did you really think when you first met me?
After we danced at that wedding, we were walking in an alley by the restaurant, and Jack said, "Oh, look — a shooting star!" We stopped and gazed at it silently. All those years later, Jack said, "I never told you what I wished for. What I wished was, 'I wish she were mine'." He'd never told me that. Life's too short — why not say what's in your heart?

2. Do you believe in God? We'd never really talked about religion. Jack's parents are Jewish and Catholic, but he wasn't raised as either. I'm Catholic but didn't want to push that on him. In our last weeks together, we asked each other: Where am I going? What is my life about? What about my soul? At Jack's request, a priest even came to do a blessing and, eventually, last rites. I think it was a real comfort for him.  Just as Jack found faith, I now believe that energy is all around us. While Jack was sick, for instance, we would talk by walkie-talkie when he was in bed and I was in the kitchen. He died at 10:00 A.M. on a Sunday, and from noon on, that walkie-talkie made static noises, like it did when he would talk to me. I still get chills. I know it sounds a little crazy, but I absolutely think Jack was letting me know he was there.

3. What little things do you love about each other? In his last weeks, Jack kept a journal. He wrote, "When we played Rock Band, I loved how something so simple could make you so happy." I had no idea! My "little thing" was a baby photo I'd seen of Jack in his playpen, laughing. Whenever he'd laugh a really deep belly laugh, he looked just like that. It warmed my heart, and I told him so. Let each other in on the secret moments you cherish.

4. What was missing when you were growing up? We'd talked about our families before, of course, but in the end, we spoke a lot about what we didn't get growing up, and what we hoped we had provided each other. Jack, for example, wished he'd gotten more spoken "I love yous," so I gave that to him. Through the years, my mother and I faced economic struggles, so Jack did everything he could to make me feel safe financially.

5. What would you change about each other? Jack knew that I'd always had a type-A personality, so he had to teach me it's OK to relax and enjoy life. Over the years, he got me to try skiing, kayaking, even snorkeling in Hawaii! But in those last two weeks, I think Jack worried that, without him, I wouldn't keep trying new things. Jack said to me, "I want you to be more adventurous. I want even more for you." As a tribute to him, I've parasailed and am about to go to Tuscany with a girlfriend. And a few months after Jack's death, I went to the Bahamas with another girlfriend — a trip he had actually planned for me, saying, "I think it's something you'll need to do."

6. What are your greatest fears? I don't mean if you're scared of bugs or heights; I mean the real things. Jack, for instance, wasn't afraid of dying. He was more scared of what would happen to me afterward — that I'd fall into a bad relationship or drink too much or maybe even want to end my life. Most of all, though, he said, "I'm afraid of leaving you."

I then shared my biggest fear, which was having to move forward and have a life after him. I was very candid with Jack about this, about not wanting to marry again. My mom said, "You're too honest. You have to stop upsetting him." But I had to tell him the truth. And Jack gave me the greatest gift. He said, "I want you to meet someone and have the family we couldn't." And as painful as it was for me to hear those things, I'm now so glad he told me that. I know that when I'm ready, I'll just say, "Jack, send me someone to love."

On the first anniversary of Jack's death, I visited the cemetery rose garden where I'd scattered some of his ashes. I brought some flowers, sat down and talked to him for a while. The hardest part, still, is when I want to tell him something and he's not there. So please, for me — for Jack — if you feel it, say it. Don't ever waste that chance.