As My ALS Journey and Family Expands!

45331_497041290316553_1447516597_nALS entered my life in 1995 when my young husband, Kevin O’Donnell, received his diagnosis.  He was only 30 years old and it would be difficult to put into words how that day and diagnosis impacted us for six years, and me for nearly two decades now. I have written extensively about my years with Kevin, as they have shaped my entire life. For his love and companionship, I am truly inspired and grateful.

Since that day of Kevin’s diagnosis in May of 1995, I have been on an ALS (Amyotrophic Lateral Sclerosis) journey.

My journey started as I embraced Kevin while we received the devastating news which was incompressible; I heard every other word.  Neurological.  Terminal.  Live.  Percentage. Hope.

When Kevin lost his battle with ALS in 2001, I lost a huge part of me.  It took me YEARS to accept that he was gone and to understand that having him as my husband for only nine years was better than NEVER having him at all.   He was brave, funny, loving and kind.  I find myself now, after some of that pain has subsided, understanding that I would not have changed my role as wife, caregiver and advocate, even had I known what would ensue, for anything.  It was the greatest role of my life and one for which I am proud.

Today, I live each day in Kevin’s memory – charged with continuing his battle in the fight against ALS and in the hopes of helping new families currently faced with this horrific disease and the enormity of that challenge.

In October 2011, my daughter Alina and I met with the ALS Hope Foundation in Philadelphia to share my non-profit, Hope Loves Company, with them.  HLC was formed to provide emotional and educational support to children of ALS patients.  We had a great meeting which ended in this suggestion: “You should go to the International MND/ALS meeting in Chicago in December, 2012.  Share HLC with others.”

Food for thought. I filed that information mentally.

Since then, with the help of my HLC Board, we have reached out to ALS families all over the United States- offering them our love and support. We have sent free copies of the children’s book, What Did You Learn Today?  to families in Connecticut, Pennsylvania, Texas, Washington, Alabama, Tennessee and more.

To read about how the children’s book WDYLT? as well as Nora, Adam and Warren Ames came to bless my life, go to the HLC website and read about yet another incredible journey.

HLC had its first Kid’s Day in June 2012 for ALS children and their families. I was overjoyed to see the positive response from families, volunteers and Waterloo Gardens, all of whom generously embraced the day and HLC.  Waterloo Gardens in Exton, PA even donated their grounds for Kid’s Day!

Over the summer, HLC received its first large donation from Steve and Michel Gleason, of Team Gleason- a generous welcome and congrats that officially tagged us as a non-profit organization with big shoes to fill.  Steve reminds me of Kevin, living bravely with ALS and making an impact every day from his wheelchair; accomplishing much more than most of us who are not challenged by a neurological disease.

In October, I was reminded that the National Alliance meeting in Chicago was just around the corner.  I called in my troops.  My dedicated sister-in-law Keiren updated the website and brochure.  My dear friend Linda helped with contacts and preparations.

My friend Margaret picked out just the right clothes from my wardrobe.

Riverton Health and Fitness Center and their monthly donations to HLC gave me hope for the camp that I was about to reveal to a very large audience.

My incredible intern Emily created my presentation, one that took us a few visits to perfect.

I lived for weeks, at my computer, in my pajamas, with one goal:  share HLC with the ALS community and share it well! There were days when I began my work at 6 am and realized by 3 pm, that I had not had breakfast!

On December 1st, in the midst of Christmas gifts and decoration, I parked my suitcase. My husband Warren loaded our car and drove me to the airport. Best of all, our three amazing children wished me luck and said I would do great.  Wow.

The ALS Hope Foundation generously sponsored my trip to the conference and gave me the opportunity to present HLC.

Without my generous team, I would have been back in New Jersey still working, when my plane left for Chicago.

Alone, with the spirit of my team in my heart, I headed to Chicago, slightly apprehensive yet passionate about sharing HLC with the world.

Day 1- I sat in a room of 80 attendees- a menagerie of patients, caregivers, advocates, scientists, doctors, etc… and felt smaller than my already small stature.

My mind wandered.

Will HLC be embraced?

Will others rally behind my cause?

Will my presentation go smoothly?

Will this experience move me forward in my work as an ALS advocate, for ALS families in any way or in many ways?  I had no sleep the night before, due to these concerns.

As I looked around the conference room, I sat in awe.  Diverse cultures.  Diverse appearances.  Diverse languages.  Conversations were taking place in many languages foreign to me.

How can we unite our efforts when we don’t share a common language?

The first few speakers presented.  Ten powerful minutes each.  Stem cell hope from Israel.  Raising funds suggestions from Australia.  ALS forums and their place in the U.S.

I sat stunned.  Quiet.  Attentive.  I nodded in agreement with everything that was being said. Wanted to shout a huge, “Amen!” but avoided the temptation and the opportunity to embarrass myself.

It quickly became clear to me that we did all share a common language at the International MND/ALS Alliance- ALS. We united in the face of ALS and our determination to help make a difference to patients and their families.

Day 2 – It was my chance to present Hope Loves Company.  My leg was wiggling back and forth.  I began to shiver, yet, I stood and presented HLC and my journey to a room full of reflective strangers.  When the HLC  video ended , I could hear the shuffling of purses, in search of tissues.  As I left the stage, I was greeted by smiles of approval.

For most of my life as an ALS advocate, I have been alone.  Kevin’s picture was the impetus for motivating my work.  Then I met my husband Warren, his children Nora and Adam and placed a picture of their mother, Tina, next to Kevin’s. Over the last eleven years, I have added hundreds of pictures (in my heart) to that line of heroes gone too soon.  But most of my work is done in isolation, just me and the computer and an email address of someone who needs more information, a place to vent, a reason for hope.

Following my presentation, several people came up to me for bear hugs.  One man who spoke no English kissed my hand again and again.  I have never felt less alone in my ALS journey.

The culmination of Day 2 of the conference ended with a Warm and Fuzzy dinner, as it was aptly named ten years ago.

After a chocolate themed dessert, each of us had the chance to stand and say something.  I couldn’t resist.

“This day reminds me of John Heywood’s quote, ‘Nothing is impossible to a willing heart’.”

There, I had learned that in Latvia, Russia people wait six years for wheelchairs.

I had cried with a woman from Taiwan whose young husband lives with ALS.

I had exchanged ideas with a woman from France who helps ALS families.

My willing heart will bring me back to the National MND/ALS Alliance conference next year and I will feel right at home as my ALS journey and family expands.