Karen's Voice

I met Karen in high school.  She was always fun, outgoing and sweet.  A few months ago when I was gathering toys and clothes for children in Peru undergoing open heart surgeries, she was one of the first people to contact me with a trunk full of goodies.  I'm honored to share Karen's voice.

Here's a photo of Karen and her family in October 2011.

Karen's dad and daughter in New Zealand February 2012.

Transformation

By Karen Moran Faullhaber

Two thousand and three was set to be the best year of my life. I had met the guy of my dreams (Scott, who is now my husband) and -- despite having known him for only 3 months – had decided to join him on a six month work assignment he had in Burlington, Vermont.  Since our time in Burlington was going to be brief, my plan was to train for a marathon, discover New England, and enjoy my life rather than work. 

I was so excited when my parents came to visit us.  Scott and I planned to take my parents to Montreal for a long weekend, followed by some time in Vermont, where my parents could get to know Scott.   As we explored Vermont that weekend, we visited the Trapp Family Lodge in Stowe.  It was there that the “best year of my life” transformed into something much different. 

My mom and Scott were walking ahead of my dad and I.  I distinctly remember him telling me “hold one for one second before we go in because I want to tell you something.” My dad is very sentimental and expressive so I knew what was coming next: a sappy speech about how he couldn’t believe how grown up I was and how much he liked Scott.  Ugghh, I don’t know why we always had to have these awkward sentimental moments together in public. I was thinking about how I wished he could just tell me these things over the phone or, better yet, leave them to my mom. 

Anyway, we stopped and I steeled myself for the awkward sentimentality.  My dad then said “Karen, I was diagnosed with Stage 4 Mantle Cell Lymphoma a few months ago and have been told I have 18 months to live.”  I was stunned.  Was my dad really telling me he had 18 months to live while a tourist group walks by me in front of the Trapp Family Lodge? It took a minute to register and then I just cried uncontrollably. My dad hugged me and took me for a walk. It was so surreal, I couldn’t think and when I saw my mom I just cried like a baby.  Poor Scott just looked on not knowing what to say. The rest of the day is a blur. I called my brother and cried some more.  The rest of their visit is a blur, all I remember is standing in front of the Trapp Family Lodge listening to those words coming out of my dad’s mouth. 

Months passed in Vermont.  I wished I had a job to keep me occupied.  I wished I were home to help out (my parents forbid it).  Most of all, I wished I knew more about what my dad was up against.  The Leukemia and Lymphoma Society (LLS) was an invaluable resource, providing me with a wealth of information and support. Doctors told my dad that his only hope was to harvest enough stem cells to enable him to get a stem cell transplant. He tried and tried but was never well enough to harvest the cells.  Again, the Leukemia and Lymphoma Society came to the rescue.  My dad was able to participate in a clinical trial for a drug LLS funded called Rituxan.   That drug ultimately saved my dad’s life.  

My dad is now in remission, which has given him the extra time to walk me down the aisle at my wedding, witness the birth of my two children, and share in their childhood.
LLS is truly remarkable, it literally changed my life and it changes other peoples’ lives everyday.  I am honored to give back to LLS now as part of a team led by my brother competing in the LLS Man and Woman of the Year campaign, which is a 10-week competition among teams across the U.S. competing to raise the most money for LLS.    All support is welcomed and deeply appreciated.  I am passionate about LLS because I have seen first hand the comfort and benefits it provides.  To donate or learn more about LLS or the competition please click HERE and visit my WEBSITE.

Emily's Voice

I met Emily several years ago.  We were both pregnant with our now 4 year olds, volunteering for a wonderful organization called Harmony with No Limits.  No Limits is an after school program created for low income children with hearing deficiencies.  Like so many of my stories, Emily and I reconnected on Facebook.  She shared a quote about Bodhichitta, and I was immediately intrigued.  The quote is powerfully beautiful, and you can read it at the end of Emily’s story.  Through Emily’s pain and darkness, she awakened her own heart.  I am honored to share Emily’s Voice.  

Photo of Emily and Dad in 2006.

My Heart Opened in My Darkest Time

By Emily McGill

Growing up my Father was a friend to all – a stray animal, anyone who needed guidance. He put others first because he cared, and I think looking back he wanted to control his environment. If he took care of others he somehow believed he would be okay, too. He seemed so strong. He could almost will things to happen.

My Stepmom was diagnosed with breast cancer 10 years ago. With her perseverance, treatment and the selfless care from my Dad, she lived well after the diagnosis. However, the tighter he held on to things and managed her care, the more insecure I watched him become over the years.  Every test, every appointment no matter how routine threw him off course for weeks.  Love and hugs did not comfort him.  He wanted answers. Absolutes. A guarantee she would not have cancer again.

My Stepmom was diagnosed with a secondary cancer the beginning of 2010.  She passed in the summer of 2010 after a very short 6-month fight with liver cancer. My Father’s will and spirit passed away the night she died. I felt it as I drove away from the hospital. My husband stayed with him.

He spent many nights with my two young boys and me for the 11 months that followed, and then returned to his home during the day. There he searched for answers.  He read about the afterlife and spirituality.  He flew across the country to meet with an author and doctor who wrote about the afterlife. He met with religious leaders in his community searching for answers.  He was angry at the world.  He was angry with himself.  He had no compassion for anything but perhaps my two young boys.

I knew the answers were within him.  I couldn’t give them to him. Why couldn’t he know that? I listened to him for hours at night. Repeating to him "for now" you feel this way. "For now" you can't see a path ahead of you, “But it's just for now, Dad”. 

My Father committed suicide three months ago.  He always woke up bitter and sad at my house.  When the sun came up day after day, he couldn’t bear his reality without my Stepmom.  He left my house that morning and went home. Normally, we spoke every few hours.  When I did not hear from him, I knew in my heart something was wrong.  He went home to his house, and took his own life. 

My world forever changed in that moment I found out.  It changed and there is a sorrow that I have deep in my soul.  Yet, it was then that I found an (my) open heart for me and it demanded grace and compassion from me, not from others – but from me.  

It's not been a subtle transition.  He was one of my best friends in addition to being my Dad. I felt anger and wrote my Father a letter one night several weeks after.  I spent a miserable time in anger and loathing his decision, and after my letter to him my anger was released.  And in walked more sadness and sorrow.  Yet, when I found the passage about bodhichitta I also found compassion, understanding and grace.

I think I've been on a journey of self-discovery since I was a child; I had always liked the idea of yoga and Eastern thinking. Been drawn to it since I was young. However wanting yoga and more Eastern thinking to be in my world seemed a struggle. It's as if I thought just thru my yoga practice I would find enlightenment. If I just could master wheel or headstand all would come to me. It wasn't until my Father’s death that I realized all those beliefs where within and not a struggle at all. They were inherent. I’ve always had an open heart for the world and finally I had an open heart for me.  I have to heal me, look for the deep soft place in my heart I see so easily in others and saw so easily in my Dad.

I'm actually at peace in one of the darkest times in my life. My journey may never be over in regards to healing from my Father’s suicide, but I have compassion for him and for me. Something my Father wouldn't allow himself to do if ever. I realize now that he was searching all along for what was right inside of him, inside of all of us: the most tenderness of love and hearts, he just never turned it onto himself to give himself the compassion he needed.

A good friend introduced me to the writings of Pema Chodron earlier this year as I was struggling to take care of my heartbroken Father.  I bought him a book of hers, which remains untouched.  I found one of her books “Comfortablewith Uncertainty – 108 Teachings on Cultivation Fearlessness and Compassion” just a few weeks ago that had a passage on Bodhichitta.

Bodhichitta is a Sanskrit word that means "noble or awakened heart." Just as butter is inherent in milk and oil is inherent in sesame seed, the soft spot of Bodhichitta is inherent in you and me. It is equated, in part, with our ability to love. No matter how committed we are to unkindness, selfishness or greed, the genuine heart of Bodhichitta cannot be lost. It is here in all that lives, never marred and completely whole.  

It is said that in difficult times, it is only Bodhichitta that heals. When inspiration has become hidden, when we feel ready to give up, this is the time when healing can be found in the tenderness of pain itself. Bodhichitta is also equated, in part, with compassion - our ability to feel the pain that we share with others. Without realizing it we continually shield ourselves from this pain because it scares us. Based on a deep fear of being hurt, we erect protective walls made out of strategies, opinions, prejudices, and emotions. Yet just as a jewel that has been buried in the earth for a million years is not discolored or harmed, in the same way this noble heart is not affected by all the ways we try and protect ourselves from it. The jewel can be brought out into the light at any time, and it will glow as brilliantly as if nothing had ever happened. 

This tenderness for life, Bodhichitta, awakens when we no longer shield ourselves from vulnerability of our condition, from the basic fragility of existence. It awakens through kinship with the suffering of others. We train our Bodhichitta practices in order to become so open that we can take the pain of the world in, let it touch our hearts, and turn it into compassion.

Amber's Voice

You can find inspiration everywhere, even at a topless show!  I first met Amber when I went to the opening of Fantasy.  It's a topless review in Las Vegas where beautiful women get on stage and perform different fantasies, in a tasteful, sexy and fun way.  These women can dance, and they have amazing bodies so yes I'll admit it, I'm a little jealous!  I met Amber again in a television hosting class we were both taking with Marki Costello.  We were talking one day and she opened up about how she constantly felt judged for following her heart and pursuing her passion for dance.  Thanks for inspiring us Amber!

Follow Your Heart and You Can Never Go Wrong

By Amber Strauser

What frustrates me, is society encourages children to play sports or participate in the arts all the way from childhood to high school, but when senior year is over, society only supports the student to go to college so "you can get a real job."  First of all, in the dictionary job reads "a specific task done as part of the routine of one's occupation or for an agreed price."  Whether it is filing in an office, searing fish at the five star restaurant or dancing in a topless show...  It's a job!  I dance in a choreographed topless show in Vegas and I love it!  Sure people judge me, but really they are judging me because they are inflicted and frustrated at themselves for suppressing their own reflection that they see in me.  I am a woman.  I am a sensual being.  And I embrace this truth, and hopefully inspire others or at the very least entertain them.  When I am performing onstage in Vegas, it's as if I am living one of the many characters within me; I really like this character.  It is tough performing the same show night after night so you have to keep it alive within yourself otherwise you will look dead even though you are marking movement.   I love the freedom of expression that dance and acting allow.  I like that I get to share my gift with the world.  I love that in my line of work, I take others out of his/her everyday lifestyle and bring them into my artistic world.  I am proud of myself for believing that I could and have made my dreams my reality! Follow your heart and you can never go wrong.  As long as you are living truthfully from within, you will be rich in happiness.  Remember, you have to do something in life, so it might as well be something you love; it is a choice!

In Memory of Joe...

Thanks to Jodi for emailing me this photo of her and Joe!  It's exactly how I remember him senior year.

I couldn't sleep last night.  I figured after a fun dinner out with another couple, my high school newsletter would do the trick...  Instead, half way through I sat up in bed and gasped!  Every thought went through my mind.  Are you sure this is for real?  Hadn't I searched his name on Facebook when I was checking up on all those past loves (yeah I'll admit it, and I'm sure my husband will too!!)?  How could this be possible?  Joe Terrasi, my hot carpool driver that became my love interest for a brief period in high school was dead!  I spent an entire year dreaming about that guy.  While I have a feeling he was more interested in his BMW than in me, there was just something about Joe that took my breath away.  He was older, cute and he wore black gloves while driving.  All things that are very important when you're in high school!  Even though he drove like we were on a race course, I was never scared.  Joe always made me feel safe. 

Last year when eliminating clutter from my life, I came across an ethereal rectangular glass jewelry box with a painting of an angel.   Over the years, the silver butterfly broke off and there was a small chip in te glass.  I remember looking at that box and thinking of the moment Joe gave it to me, and how my heart dropped.  Last night I envisioned that box and thought about the fun and crazy memories I shared with Joe.  Then I thought about how grateful I am.  In this amazing game of life, I was given a second and third chance.  The doctors didn't know if my heart failure would improve when I was initially diagnosed.  Then I was dealt another blow after my first daughter was born.  But I survived.   Joe, on the other hand, wasn't so lucky.  He died of thymic cancer at 34 years old.

If you need a wake up call, there it is right in front of you.  You never know what life has in store for you.  So stop living just to pass time.  I challenge you to try something you always wanted.  Be adventurous and leave work on time, start writing that children's book you've been talking about for years, call up a past love and say hi.  I've always wanted to drive a race car... Without getting a speeding ticket!  It's the perfect tribute to Joe.  Anyone know of a good race track or where I can find a pair of racing gloves?  Thanks for the memories Joe!!

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

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.

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.

Elissa's Voice

Elissa, a reader from St. Paul, MN, found out about my blog from the American Heart Association Go Red for Women campaign. She's the reason all my hard work is worth it!  At 28 years old, Elissa was diagnosed with heart failure for the second time.  Today she's searching for strength.  Please open your hearts and send her all your healing energy and strength.  Below is Elissa's voice.

Gratitude

If you Google the word gratitude, you find an endless explanation of its meaning. 

It's a powerful word.

One that I've learned to love.

Ten years ago, when I was 18 years old, I was the typical girl.  Fresh out of high school, engaged to be married to my high school boyfriend.  Life was good.  It was all I had imagined it to be.

Until the eve of my best friends wedding, when chest pain and shortness of breath sent me to the hospital.  From that moment on, my life was never the same.

I was diagnosed with Viral Cardiomyopathy.

The following years were filled with fear, sadness, and loss. 

I lost more than I could ever describe.  My love, my security, my innocence. 

My gratitude for life.

Gone. 

I was jaded, and angry.  I couldn't make sense of why this happened to me.  Why did I have to be different, why did I have to be sick?

The years went by, and I started to regain some footing.  Outwardly at least.  I tried to live as normally as possible. 

My physical health went up and down.  It was a struggle. 

That brings me to this last Christmas. 

I knew.  I just knew.  Something was wrong.

I went to the doctor after the holidays, and was diagnosed with Heart Failure. 

My heart.  My one and only heart, failing again. 

The heart that for ten years, I forced myself to love, to accept for being "different"....for being weak.

I have always thought of myself as a positive person, someone who knows the power of grace and dignity. 

But in the face of illness, I tend to forget all of those things. 

I started to ignore, to refuse to accept that this was happening again. 

I didn't want to be sick anymore, I wanted to be a normal 28 year old woman.  I wanted to play, and date, and run, and work, stay up late, drink too much red wine....the whole thing. 

I wanted it all.

To make a long story short, (okay, shorter...) I tried to live like that "normal" girl for awhile.  Only taking a break to slip away to my doctor appointments, hoping nobody would ask me where I was going that day.  I wanted to hide the fact that I wasn't just like them. 

Nine months went by, until I found myself laying on my couch in the house I was renting at the time, sobbing with grief.  I finally let it all sink in.  How long I had run from my reality, how long I had deprived my body of much needed rest and tenderness.  

I made three phone calls.  My dad.  My mom.  My brother Ryan.

I barely had to say a word.  They knew. 

Within a week, with the help of my family, I moved to Saint Paul.  The city where my doctors are.  My wonderful, caring, amazing doctors. 

I knew in my heart that it was time to take control of my life.  To accept that my number one priority is me, my heart.  My beautiful, strong and sometimes weak heart, that has tried so hard to get me through this journey.  It is my turn to give back, to give it everything it needs to fight, to stay as strong as possible.

So here I am, in my tiny studio apartment. I've been here three weeks.  My dog Bennett is sleeping on my feet.  She and I are two country girls living in a new city.  I am within minutes of my doctors, which is amazing.  I am creating a life that is all about health, and healing.  One step at a time.  I call myself a full time Healing Junkie!

I have good days and bad, but one thing that remains a constant is this...

Gratitude.

I am grateful for my journey.  All of the things I've lived through had a purpose, they brought me to today.  I am grateful that my heart is beating in my chest.  I am grateful that I finally put my health and well being first.  I am grateful for my amazing family, for holding my hand every step of the way.  I am grateful for my doctors.  I can actually say, I am grateful that I am living with Heart Disease.  I truly am.  It has created a depth in me, something I might never have had.  A wisdom.  A sense of purpose.  I am grateful that I'm living with this, that I'm surviving.  One day at a time.

I will continue to dust myself off, and walk on. 

I still get scared, and have days where it takes everything in my power to get out of bed.  I get angry and frustrated, and sad about the things I have lost. 

 I allow myself that.

I figure that I deserve that much.  Being sick is a challenge, one that you can't really describe.  It is ugly and defeating.  But at the same time, there is so much beauty as well.  There is magic underneath.  I can promise you that.  Even if you have to peel away the layers of yuck, it's under there somewhere.

If I had to leave you with one piece of advice, I would say this...

Remain grateful.

Even when it hurts.

I am so honored to have been asked to share my story with you. 

I wish I could say, happily ever after....but at this point my story is still unfolding. 

It is still being written.

So for now, I will say this... I am on to a new chapter of my life.  One that I hope is filled with a new understanding of my body, a new acceptance for its loving ability to keep me going.  Every day I will take time to be grateful.  I will place my hand over my heart, feel the constant thump of its beat.  And I will say, thank you, thank you, thank you.

All my love,

Elissa

Meredith's Voice

When I brought my first daughter home from the hospital, I was overwhelmed by every emotion.  First, I couldn't believe the doctors trusted me to care for this little, beautiful being.  She felt so fragile, and I'm the world's biggest klutz.  I was certain I'd drop her or do something that would permanently scar her for life.  It's scary enough bringing a child home for the first time, so what happens when you get a phone call that tests came back and something's wrong with your newborn?

Meredith is a new mommy friend.  When her first son was 3 days old she was told he had a translocation on his 16th chromosome.  She writes:

What did that diagnosis mean? Nothing? Death? Something horrible in the middle...  I have a hard time remembering what I felt that night except for being completely numb. When the shock began to wear off, I began to lock every window to my heart. I needed to save my baby, and I could not risk falling apart. 

Many describe receiving a traumatic diagnosis as being punched in the gut or kicked in the head. I felt my pain in my heart. It was broken. The days and nights that followed were filled with panic, dread and guilt. Why did I take Zofran for my nausea during my pregnancy? Why could I not nurse this baby who might be sick? What kind of mother was I? Guilt and fear washed over me, day in and day out...

Once I gave in, the despair struck me like a hurricane -- and then quieted into a soft, gentle rain that soaked me to the bone but was a relief nonetheless. I crawled into bed next to my son and allowed the anguish to take me over. I couldn't stop crying as I stared at my perfect, sleeping baby boy. Afterwards, for the first time in weeks, I slept.

After I awoke, I looked at my son differently than before. He was no longer someone who was breaking my heart, but someone who would strengthen and mend it. Little by little, minute by minute, my heart began to heal. I began to cry regularly and freely. While I looked weaker on the outside, each tear was a release. There was time to cry and time to feel. Each tear was a reminder to slow down and realize that my son was still alive, and I loved him.

Meredith's son is not only alive today but he's almost 5 years old and thriving!

You can read the entire story at Momlogic.  Please keep sending me your stories so, like Meredith, you can help inspire people.  Thanks for reading Voices to Share, healing hearts one voice at a time.

Sharing our voices...

Maya Angelou once said, "Words mean more than what is set down on paper.  It takes the human voice to infuse them with deeper meaning."  Thanks for joining me on this journey towards discovering my voice as a survivor, mother, wife and friend.  I've always been fearful of my own voice; scared that I wouldn't sound smart or that I would come across as being self indulgent.  After all, who really cares about what I have to say?  But the more I spoke to my girlfriends, the more I realized the importance of sharing our stories.  We all have a story to share about an experience that has affected us or shaped our lives, and no one story is more important than another.  Often times, it's these stories that we hide from the world for fear of judgment.  Every single day I meet a woman who inspires me.  From a grieving mother who is terrified of loosing another child to a woman who struggled for years to get pregnant and just had twins, we need to support one another.  Email me your stories to voicestoshareblog@gmail.com and thanks for inspiring me!