The Ride of a Lifetime

My most sacred childhood memories include my Huffy bike. When I was only ten years old, my coveted five-speed granted me enormous freedom. It was the 70s and my bike was my vehicle to exploration. I rode miles in the summer sun, meandering the hills and neighboring towns, a curious and excited traveller. My little brother Jamie and I coined one of the “foreign” neighborhoods, the Land of the Lost. It was ours to discover and we pinky-promised not to bring friends to our secret treasure.

When riding alone, I was a contender in the rally of my fantasies, passing cars, hugging curves and jumping sidewalks. I relished every summer fragrance, each newly discovered street and kind neighbor who offered ice cold water or a refreshing popsicle.

All these years later and a honeysuckle breeze brings me right back to my favorite adventures in my childhood town.

(The year I learned how to ride a bike).

For as long as I remember, I have always made it a priority to challenge myself both physically and mentally. When Hope Loves Company (HLC) turned ten years old this past October, I wanted to raise 10k in a unique and challenging way. My husband Benton and I wanted to remember the lives of those we lost, including our late spouses Kevin and Tina, and countless friends. We wanted to honor those who live with ALS and the families we serve at HLC. We wanted to personally spread awareness of ALS, HLC and the programs we provide.

In August, 2022, our friends Don and Elizabeth Crouse had just come back from a three month long TransAmerica bike ride from Washington, D.C. to Oregon and that’s when it hit me- what if we did something similar as a tool to raise awareness and funds for HLC?

Then my husband Benton had a thought, what if we incorporated the words hope, love and company in our event? Brilliant.

Hope has always been a huge part of my life and has fueled every dream from going to college to starting a non profit, so we needed a hopeful name. We Hope (We Make it) Bike Ride for HLC it was!

We decided that we would ride from Hope, New Hope, PA that is, to Love, Love, Virginia to be exact. The distance between the two was calculated at 350 miles. That was a huge undertaking for me. I haven’t ridden more than 20 miles at a time in nearly thirty years. The rest of the crew however, are avid cyclists who promised to teach me the ropes.

And with that, my husband Benton and I began the process of creating an epic adventure and started training by riding our bikes inside over the winter months (on trainers) one hour a day, for seven months. When the weather allowed, we also took short rides of 20 miles or less around the flat terrain of Mercer County, NJ. With the help of our friends Don and Elizabeth, we made a list of supplies, a clear route and a thorough plan and the idea quickly became reality. We bought lights, seat covers, panniers, padded clothing, snacks and socks. We ordered custom HLC 10th Anniversary jerseys in bright yellow.

We marked our calendars and the monumental event was graved in stone.

On Wednesday, May 24, at 10 am, we received a surprise visit from four excited friends. They brought goodies, played music and waved us goodbye as we set out for the D&R Canal trail which brought us to New Hope, PA in nine miles.

Within the first two hours on the trail, we met another biker. He was traveling by himself from Maine to Maimi- the East Coast Greenway. The writer in me wanted to stop and exchange stories and contact information, but we were on a schedule.

Over the next eight days, we rode on trails- including the Chester Valley, Enola and the Pennsylvania Green Way.

Don and Elizabeth Crouse, resting at a church in West Virginia (and my Hokas)

We tackled concrete highways in the hot sun and avoided daunting 18 wheelers. We rode when we were tired, when our bike chains weren’t cooperating and when we ran out of water.

Help arrived when we needed a clean bathroom, when our bike lock was stuck and when we desperately needed a cozy ride home.

We rode through Amish country and ate stawberries freshly picked that tasted like heaven. We met strangers and left as friends. We received questions and hugs about why we were tackling this mission and we cried to hear of other ALS stories.

Our route.

My husband Benton rode behind me the entire way. He coached me through the toughest hills and enouraged me to enjoy the reward and to coast down the hills at 30 miles an hour. He fixed my bike chain twice and adjusted my seat when my hamstrings were screaming.

You don’t do something huge without learning something big.

Enola Trail, PA

Here are five things that I learned from accomplishing this incredible undertaking of 401.19 miles on a bike. Although the route was estimated to be 350 miles, detours, hotels and side trips brought the total to more than 401 miles. Whether you are starting a non profit, are thinking about running a marathon, or hope to go back to school, these five lessons apply!

Our celebration!

1. Dream Big and visualize the outcome. When starting Hope Loves Company, and while planning our bike ride, I visionalized success from the very start. I saw my self creating and doing the exact thing I was planning. In my mind’s eye, I saw the events unfold and ways to adjust as growth happened and challenges arose. Dreaming is a necessary part of growing, evolving and succeeding. Thinking of all the things that can go right and wrong help to flesh out a plan. Preparation and strategy are key.
2. Enlist a team. No one succeeds alone. Whether you are building a business or climbing the hills of West Virginia on a bike, it takes a team of varied skills and talents to accomplish something new and challenging. Canvass your list of friends and colleagues and talk to them. Do the research. Gain knowlededge and proceed with strategy and inspiration. Independently, you won’t have all of the answers but as a team, you will.
3. Engage your mindset. I know how fortunate I am to spend 8 days doing something that brought me joy. This was an active vacation, the only one I planned this summer. Vacations typically mean down time, but for this particular experiene, it meant these things only, getting in the miles, staying safe and inspiring both awareness and contributions. Every morning, although tired, my mindset was dedicated to accomplishing those goals only. I focused on the tasks at hand and understood that for the time being, everything else was secondary.
4. Give gratitude. Life is a journey peppered with both difficult and wonderful experiences. Due to extensive grief, it took me years to focus less on my challenges and more on my blessings. When I read this quote and began to live by it, happiness ensued. “Acknowledging the good that you already have in your life is the foundation for all abundance.” Eckhart Tolle
5. Learn from every experience. Every challenged offers teachable moments. Every gift does as well. One of the greatest highlights from our ride was being met at Love Ridge Mountain Lodge by our friends Allison and John. Not only did they bring our car, which they cleaned, they met us with ice cream, sorbet and hugs. Their enormous dedication to our journey reminds us that giving is our greatest gift and that we can always give more. Give of our time. Give of our hearts. Give of our resources. When you ride 47 milies uphill to your final destination and are welcomed by friends, hugs and mango sorbet, you have a memory of a lifetime.

We made it!

Honestly, the bike ride was not the highlight of this journey, it was the people who made it special. Connie Pennock offered to bring down our bike carriers. David Brown, who lives with ALS in Texas, was our car chase sponsor. The HLC Board of Directors and Team rallied around us. Family and friends shared our story and their resources. Reporters followed our progress and aired our success. And somehow, our Hope (We Make It) Bike Ride for HLC resulted in more than $11,000 for Hope Loves Company and the children we serve.

Hope abides. Our bodies are sore, but our hearts are full.

To learn more about Hope Loves Company, visit http://www.hopelovescompany.org

Grief Has Many Faces

Today, I am grieving. My guess is that you are grieving too. In many ways, we have been grieving for several years now. Covid. Isolation. Loss. Uncertainty.  If you know love, then you also know grief.  Grief is defined as intense emotional suffering caused by loss, disaster, misfortune, etc.; acute sorrow; deep sadness.. I have appreciated reading other people’s perspective on grief.  I like what Keanu Reeves has said.In the last few months I have been working on my third book. It begins with a tragedy that occurred in 1979. On May 23, 1979, my 12-year-old self was first introduced to grief. On that sunny spring day, I witnessed my first crush, Billy Carr, get struck and killed by lightning only yards from where I stood.  We were on the school field, playing soccer and having fun.   The Region – The New York Timeshttps://www.nytimes.com › 1979/05/24 › archives › the-r… May 24, 1979 — 14-yr-old William Carr Jr is killed when struck by lightning, Palmyra, NJ; his companion, Tim Beck, is in stable condition. In that brief moment, many lives were forever changed- including mine. I remember thinking, “How and why did this happen?” There were no clouds in the sky. He was so young. How could he be gone forever? The local and national news described this horrific event as “a freak accident.”  For months I searched for understanding. I talked to school counselors, clergy, teachers, family, etc… but no one had an answer that brought me comfort. Then one of our middle school classmates did something powerful.  Billy’s best friend, Joe, age 13, made a plan. He wanted to raise money to start the Billy Carr Memorial Scholarship.  Action was initiated. There were cupcake sales, car washes, and raffles and the money was raised to create the Billy Carr Memorial Scholarship.  Billy Carr Memorial Scholarship AwardEach year the club grants up to 4 Scholarships to Palmyra High School students 1 Boy and 1 girl from Palmyra & 1 boy and 1 girl from Riverton Putting grief into action is a start to the healing process. It’s why planning a funeral is so important. In the first days and weeks after enormous loss, planning provides a focus. It’s only after the meals have been delivered, the flowers have faded and shock has diminished, that we have time to navigate a new normal, one that we did not choose and one that will pose the question, “How can I possibly go on without you?” On memorial day weekend, 1995, when my late husband Kevin was diagnosed with ALS, a terminal illness, I faced enormous grief once again. That day, anticipatory grief stepped in. At 29 years old, I knew that I would be a widow and that our daughter would lose her daddy. While I have always recognized that grief is a personal journey, I recently learned that there are actually many forms of grief.  Grief does not always appear as tears. It has many faces. It can appear as anger, isolation and confusion. There is complicated grief. Delayed grief. Anticipatory grief and many other variations. You can read about those here:  https://www.betterup.com/blog/types-of-grief  If you are also grieving right now, you are not alone. Talk to someone about your feelings. Take positive action (make a donation, rally for change) recognize your grief for what it is and know that we all feel the weight of trauma and loss. I am a wellness empowerment coach and wanted to share two things with you for your information and comfort. A quote: Grief, I have learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go. Jamie Anderson I also recommend the book which I use with my clients, Bearing the Unbearable by Joanne Cacciatore. A big part of my life is helping those who are grieving. I speak professionally about it, I talk personally about it, and I’m here if I can be of help.

Finding My Mentors at BYLR!

I have been meaning to write this piece for some time and as we close one year and embrace another, I was moved to pen the thoughts that I have carried with me since meeting Jesse Itzler in North Carolina in 2018 at Lenoir-Rhyne where we both gave our TEDx talks.

This is how it started and how it’s going- with your love, guidance and inspiration. This is a personal thank you to every single one of you! It’s also the very first time that I have shared a moment in my life when I was completely vulnerable. It’s both freeing and frightening to write about my childhood but it’s also the first step in writing my memoir.

I was born on Christmas Day in 1965 to parents who did not love each other.  It’s hard growing up a dreamer in a home where hate and dissonance is a common theme.  By the time I was twelve, I wanted my life to end.  I remember going into the medicine cabinet (which I now know had far more potent contents than aspirin) and while hearing my mother’s rants downstairs, took a handful of pills and proceeded to sit on the cold bathroom floor while waiting for the noise to end. 

It was not death I was seeking, but instead, quiet. My mother, who was hospitalized twice for mental health reasons, has battled bipolar episodes all of her life. She vacillates between depression and anger and somewhere in between she was doing her best to raise five children. The first two ran away before the age of 18, the third, five years my senior, was rebellious and never home.  That left me and my younger brother Jamie. We are 22 months apart and by the time I was eight years old, I became his mother. Did he do his homework? Was he late for school? Was his football uniform clean? Why did he fail that test?

Today, Jamie is a proud husband, father and entreprenuer and I am his biggest fan.

My nurturing started as a way to focus on something positive as well as to attempt to bring peace into our home.  My parents both worked several jobs to pay the bills and to provide for us. My mother was a restaurant hostess and came home late each night. She would run circles around the young women with whom she worked. My father was a foreman who proudly paved the roads across New Jersey and taught me to do every job with dignity and integrity. It was my father who bathed us and got us ready for bed and he did so after long days in the hot sun on the blistering pavement. Both parents never went a day without encouraging hard work, good manners and grit.

When I inquired about college, my parents said that they had no money and to figure it out. My mother suggested beauty school. Yet, everything about me said that I wanted to make an impact in the world. My empathy, patience, work ethic and dreams were all screaming for intentional opportunities to make a difference.  I vowed that I would find a way to achieve the future that I had envisioned for myself. 

In high school. I had two mentors who guided me through the college process.  My boyfriend’s mother- a graduate herself (now 95) and the mother of seven, helped me to complete the paperwork and purchased my first dictionary.  When I graduated college, she took me to the mall and bought me my very first suit which I wore for years, until my body diminished in size.

Another mentor was my student council advisor.  She brought out the best in me, encouraging me to run for many school positions and to apply to college.  With her guidance, I became a student council President, school secretary, yearbook editor, a performer in plays and so much more.

I am still in touch with both ladies today and at least once a year, write cards of gratitude to them for believing in me so many years ago.

I graduated from the College of NJ in 1988, the first in my family to do so; I worked three jobs to finance my education, with a dual major- Early Childhood Education and English. I got the first job I ever interviewed for and welcomed teaching and my students with enormous enthusiasm and creativity. I loved being a mentor to young minds seeking inspiration and hope for their futures- as my teachers had done for me. Teaching felt like I was utilizing many of my skills, but not all of them.  I wanted to be mentored too.  I wanted to learn and grow with others. I wanted to teach writing, but to also write my first novel. 

From that point on, life was so busy and I had little time to obtain mentors.

While teaching language arts to one hundred and thirty middle school students, I met Kevin O’Donnell (his mother was the Reading Specialist where I worked) who would later become my husband and the father of our child Alina.  We married in our late twenties and a few years later, had a little girl and shortly thereafter, an ALS diagnosis; Kevin was terminally ill at the age of thirty.

When you are someone’s arms, hands, voice, advocate, there is little time for yourself.

When you are raising a small child while being a caregiver, there is little time for yourself.

It’s hard to find a mentor when you are concentrating on being one.

As I was nuturing our daughter’s growth, I was assisting my husband who became increasingly dependent because of his disease.

When we lost Kevin in 2001, he was speechless, paralyzed, feeding tube and ventilator dependent. He was also brave, kind and funny. His last words to a room full of family and friends were, “Please take care of my girls.”

In the six years that I provided care to my husband, we advocated for an ALS cure, funding and awareness. This included, among many things, speaking on Capitol Hill, appearing on television, addressing Congress and speaking at an FDA hearing. We even spoke to the Philadelphia Phillies, for six years, about our life with ALS.  I will always remember the day when Darren Dalton changed into his uniform in front of us while I was sharing our personal journey and the toll it was taking on my husband. Kevin was by my side, in his power wheelchair.

Everywhere I went, I was hoping to find a mentor.  Instead, people were seeking me. They saw a strong, brave and educated woman who seemed to being doing the impossible.  The truth was that I felt scared, lonely, exhausted and defeated. While friends were having more children and getting their second home and launching careers, we were formulating how to safely transfer Kevin into bed or if the letter his lips desperately tried to produce was an A or an O.

Life continues to happen and blessings can occur after enormous loss. Three years after losing Kevin I married Warren Benton Ames (who also lost his wife to ALS) and became the proud bonus mom of his two children, Nora and Adam. Those days were busy nurturing the wellbeing of my family and making sure that all three of our children were mentally and physically healthy, independent, compassionate and confident. As they began to find their place in this world, I began to find time for me.

In 2012, in honor of our children, I founded Hope Loves Company– the only non profit in the U.S. with the mission of providing both educational and emotional support to children and young adults who had or have had a parent living with ALS.  My extensive work and dedication were the result of my upbringing, and numerous hours of research and cold calls to executive directors who knew more than me. It would have been so helpful to pursue my goals  with the assistance of a mentor and confidant. Today, HLC runs six free camps across the country for families affected by ALS, offers scholarships, Hugs of Hope care packages and so much more.

My journey and purpose carried me into my fifties and I did my best with the limited resources I had until the moment when I met Jesse Itzler on the TEDx stage in North Carolina. 

Jesse is the first person I have met who is humbly successful.  He was dressed in blue jeans and a t-shirt, and was quiet and unassuming.  He presented a fun and engaging Happiness Meter talk that had us all smiling, laughing and nodding with the power of his words. I felt an immediate connection and knew that he could be the mentor I had been seeking my entire adult life.

When I got back from North Carolina, I immediately signed up for BYLR and then soon after, BACC. That brought me to 30DOE which introduced me to the incredible community that is Build Your Life Resume.

All of these years I have felt hungry for information, for guidance and for practical examples of what my life could be.  This community has fulfilled that search. I have gained insight from every meeting and presentation shared. I now complete my calendar with far more experiences than meetings, I have tried new things and met new people.  I have found my place, my tribe and my mentors. We are the outliers.

Over the last three years as the result of meeting Jesse, I proudly had the courage to step away from running Hope Loves Company to do what I love doing, volunteering with our families.  I launched my podcast, Gratitude to Latitude and have shared 19 interviews so far. I launched my career as a paid coach and speaker and felt empowered with each decision. I learned how to fast properly, bathe in ice water (still not a fan!), increase muscle and decrease negativity.

I have shared lunches, coffees, phone calls, texts, cards, hugs, podcasts and resources with the extraordinary members of this community. I have paid attention to every person who, like me, had to find their way after loss, pain, challenges and hard knocks. You inspire me.

I am forever changed because of all of you.

I am forever grateful to Jesse for providing an answer to my search.

Happy Holidays to all of you! Thank you for being a part of my journey and for allowing me to admire yours. Here’s to welcoming 2022 with vigor, passion, love and success!

In gratitude,

Jodi

Jesse’s TEDx: https://www.ted.com/talks/jesse_itzler_the_happiness_meter

Jodi’s TEDx: https://www.youtube.com/watch?v=P5o_Fn39tsk

Every Journey Begins With One Step and HOPE…

Kevin, Alina and me circa 1996- one year into ALS diagnosis.

Life is a journey, and hopefully, one that is filled most of all with love, joy and wonderful memories. That’s what we all hope for ourselves and for our children. But the human experience does not come without pain and loss. While we can’t escape the days that bring challenges, we can learn how to grow from the days that feel like we and our world are broken.

I first learned about ALS in 1995, when my thirty year old husband Kevin was diagnosed with the terminal illness on a Friday, at the start of Memorial Day weekend. Kevin’s daunting news arrived on the same weekend that Christopher Reeve had his life changing accident and became paralyzed.

Kevin and I knew very little about the disease, but with research were aware of the changes and challenges that were before us. We were at a loss about explaining ALS to our young daughter Alina. How can we share something with her that we barely understood or accept ourselves?

Many people have said, and it’s true for me, that when your life has been affected by ALS, you will continue the fight for years, even decades to come. Kevin lived so bravely with ALS; he never complained or asked why him. He continued to smile and he inspired every person who had the chance to know and spend time with him. His sense of humor and his sense of wonder never faded with the progression of ALS. But ALS is brutal and Kevin sadly lost his battle with the disease in 2001. He was paralyzed, speechless and ventilator dependent when he passed.

I was 35 years old when I had to say goodbye to Kevin; Alina was 8. It took me a decade before I could speak of Kevin or look at a picture of him without crying.

I met my current husband, Warren Benton Ames (I call him Benton) through a book that I ordered, What Did you Learn Today? by Tina Singer Ames. Tina battled ALS for only six months and wrote the book as a legacy for her husband Warren and their children Nora and Adam.

(left to right) Warren, me, Rachel, Adam, Alina and Nora

Warren and I went on a date, then a few more and eventually, our two families united in love, hope and healing. Hope Loves Company continues to send out copies of What Did You Learn Today? to children around the nation. The popular book is an excellent resource for gently explaining ALS to young children and I am in awe of Tina for expressing the experience in a way that is both educational and compassionate- especially for doing so while she faced ALS as a mother, wife, sister, friend and guidance counselor.

While raising three children who had experienced the loss of a parent to ALS, I recognized the need for a non profit like Hope Loves Company (HLC).

Camp HLC children and me, Fairview Lake YMCA, New Jersey

Once my husband and I saw our three children off to college (nearly ten years ago) and knew that they were going to be ok, the idea of Hope Loves Company was formed.  I never would have imagined where that thought or this journey would have brought us to today.  The last decade has been one of long hours, big dreams and many blessings and I can truly say that my life is better because of HLC.

People have generously come together for HLC- and for me, beyond my expectations. Organizations have kindly joined our efforts repeatedly, without fail, and while I began this path to help others in the ALS community, my personal pain and grief were healed in the process. It is an honest observation that HLC saved me and gave me hope for the future after such an enormous loss, the loss of my husband Kevin to ALS in 2001 at the age of 36.  A widow at the age of 35, and the mommy to my 8-year-old daughter Alina and my 3-year-old great niece Raquel, my life felt hopeless. I needed to create HOPE for myself and for others and for that, I will always be committed to HLC’s children and families, its mission and its incredible team.

I founded Hope Loves Company with a big heart and little experience.  With a big vision and no idea how to make that dream come true. That combination got us started and now we need the experts to join our team.

On December 25, I will celebrate my 55th birthday (of course I will be celebrating with a FB fundraiser for HLC!), I now have a granddaughter and two engaged daughters with weddings in 2021-22.  My husband Warren Benton is retired and hopes that my new role can be mobile. With all of these milestones in mind, I will be stepping away on January 1, 2021 as a staff member at HLC, and will remain on our Board of Directors and as a loyal and active volunteer. I am still going to be a presence at HLC in many ways. I am simply going back to where I began; in my home, making calls and connecting with families affected by ALS as a source of support and a voice of hope.

It is my belief that my new role at HLC and my new profession as speaker and coach will continue to support our mission by spreading awareness, inspiration and support. No one will ever meet me without learning about HLC; after all, our logo is tattooed on my arm.

At the direction of our BOD, with the leadership of Executive Director Cara Haggerty and the addition of our new Program Director Nicole Russano and the assistance of Ryan Matthews, HLC is ready to bring our mission to more families across the nation.

Thank you all for coming to this mission with big hearts, for believing in something that truly makes an impact and for dedicating your time and energy to support our children and families.  I am forever grateful to you.  I  am sure that this is only the beginning for HLC and that the best years for its progress and success are yet to come! #untilthereisacureweneedhlc

You can follow my continuing journey as a speaker, coach and upstander on Twitter, LinkedIn, Instagram and FB. Go to joaspeakson.com to learn more.

With all of the love in my heart,

Jodi

At my Alma Mater, The College of New Jersey.

Fifty Gifts-#12 The FIVE

Five Notes of Gratitude

At 45 years old, in 2010, when our third child was preparing for college and my daughters were in the midst of their college educations, I had time to reflect once again about the direction my life was heading.  I had spent the last seven years focusing on three very important people: my children. They were, in my opinion, now three young adults who needed me less.  It was time to stop hovering and start letting them fly. It was no newsflash how lucky I was to have the freedom to consider where my life was going. I was in good health, had wonderful friends and an incredible thirst for learning and growing.  I was blessed with a husband who encouraged my free spirit, tree hugging, dreamer thinking.  I was a massage therapist by trade, a mother, wife and nurturer in many other realms too.  Now that my son was also on his way, my time as a daily hands-on mom was fading and I knew that I had the opportunity to not only dream, but to commit to a dream and make it a reality.  I knew also that the nurturer in me would always be seeking new opportunities and this time in my life, although uncertain, would welcome new gifts and new adventures.

One winter afternoon, I was canvassing the paper or internet (can’t remember) and learned about B.I.G. (Believe, Inspire, Grow). From its website: B.I.G. is a gateway for women entrepreneurs. We offer support, education and relationship building opportunities for our organization comprised of amazing and diverse women. We aim to provide relevant business information, peer support and motivation to educated women who desire personal and professional fulfillment. When women empower women, magic happens.

As the story goes, I drove one hour north, in a February winter storm, to attend my very first B.I.G. meeting in Bernandsville, NJ.  Each year since, the storm gets stronger and I recall myself walking against the wind to seek shelter inside the church. I arrived to a beautiful open church and the snow was falling down around us, visible through the many cathedral windows. The women there were excited entrepreneurs.  I stood and declared my idea. I was hugged.  I was cheered.  I was home. It was there I decided, after one month of refection, that I would start Hope Loves Company, the only non profit in the U.S. with the mission of supporting the children and grandchildren of PALS (people living with ALS).  I had chosen the name in 2007  and one year later or so, my  sister-in law, Keiren, created the perfect beautiful logo which captures our mission. While raising three children who had lost parents to ALS, the name Hope Loves Company came to me.  Our children had all lost a parent.  Our children had struggled with that loss as we had.  More children needed support too. It was the beginning of what is now a fully-functioning and rapidly growing non profit.

I was congratulated and uplifted in my declaration there among the women and the falling snow. At that time, there were only B.I.G. meetings taking place in North Jersey, so I immediately reached out and contacted its founder, Tara Gilvar and offered to run a meeting in Central Jersey which I continued to run until just last month.

During one of our recent B.I.G. teleconferences, it was suggested, as a feel-good act and new year practice, to reach out to five members with a good old-fashioned phone call or letter.  I love me some good old-fashioned and chose the letter option of the recommendation.

I sat and pondered.  Who do I admire? Who has inspired me to be a better person? Who is always positive, uplifting and supportive?

I chose five thank you notes and purchased five small trinkets.  I inscribed the cards with gratitude to my mentoring recipient.  I sat smiling as I wrote and thought of  each person, her gifts and her reaction when the card was opened.  They would be receiving real mail.  They would enjoy opening my card. This might be a ray of sunshine on a cold winter day.

With each note, I received a phone call.  On the other end of the line was an elated voice, filled with surprise and joy.  Each phone call was sincere and meaningful and each made me smile. The 5 notes were a hit and the gift continued to give to me as well.

When I was little, around twelve or so, I did something very unusual for my age.  At Christmas and on New Year’s Eve, I would pick up the big yellow phone book, open it, close my eyes, point somewhere, and call the number before me.  I would then say either, Merry Christmas or Happy New Year to whomever answered the phone.  “Well thank you!” a cheery voice would say.  We’d have a conversation and finally, soon into it, I’d get asked, “Who is this?” My answer was always the same: “A stranger who wants to spread holiday cheer.”  It was a silly kid thing but it brought me great joy.  I remember speaking to a few people who lived alone and simply enjoyed talking to someone, to me, a twelve year-old (strange) kid on a holiday that might have otherwise occurred without “company”.

It took me a long time to narrow down five people to send notes to.  This has me thinking. Why do I need to stop here?  Why not extend the practice and the hopes of my twelve year old self to bring cheer? Why not send five more notes in February on Valentine’s Day?

There are few things I need in this life.  I know I need love and thrive on it.  I need my family and my friends, my health and my work.  I need my faith and my prayers. The selfish part of me needs to add something to that list, the need to make a difference.  For this reason I can’t wait to write, send and share five more notes of love and appreciation in February and hopefully, inspire others to celebrate my Fifty Gifts, #12  by following my lead.

 

 

 

A Unicycle for One-More.

FIFTY GIFTS IN THE YEAR OF  MY 50TH- 1st entry Dec. 25th, 2015

In October, I attended a Women in Development meeting at 8 am in Lawrenceville, NJ.  At a table cluttered with scones and coffee, I was surrounded by smart and educated women, who, for the most part, are executive directors and presidents of non-profits.  The topic was appropriate gifts for your organization.  New to the scene and thinking, aren’t all gifts needed? I blurted, “Please tell me about a gift that would not be best for your organization.”  Having run Hope Loves Company for five years on a very tight budget, I assumed all gifts are appropriate.  We need gifts! The woman beside me politely answered my question with this scenario:

She began,”I have founded Trenton Circus Squad. If someone wanted to donate a couch, we would have to consider if we needed one or if there’s room for that particular couch.  But if someone wanted to donate a unicycle, we’d say, YES! OF COURSE! We give them to our children when they graduate from our program.”

She was seated beside me.  I had held the door open for her when she walked in and she needed something that I had.

“Got it,” I began.  “And it just so happens that I have a unicycle to donate and can’t wait to give it to a performer and would love to do so for Christmas!”

The women all turned and looked at me.  They  wanted to know the answer to the same question: WHY do you have a unicycle?

My husband and I are blessed to have a son, Adam.  He’s in the Army,  in another country far from his mother, and I miss him.  The unicycle hangs in the garage- waiting for a courageous soul to ride it again.  I thought of Adam’s teen years and how we came to own a unicycle. Adam was  not just an  active boy – he was ALL BOY.  When he was born, he weighed 10 lbs. 10 ounces and the congratulations sign out front declared, “It’s a TRUCK!”

I have always enjoyed sports and a good challenge but Adam and I were not necessarily on the same page when it came to certain challenges.  I did not want to dress in camouflage and go swamp trekking.  I did not want to shoot a bow and arrow at a living thing. I did, however,want to bond with my son.  I started by wrestling with him.  It was a great workout for both of us until he soon outgrew me and my skills and joined the wrestling team- thank God! Then I invited him and his friends to a challenge of jump rope.  “Here’s a twenty for the person who can do the most jumps without missing.”

I believe I won.

We upped the ante by running in between (once around the  yard) five sets of 100 jumps.  He soon bored of this “fun” way to pass the time with his crazy mom.

The task to keep him entertained and out of young boy mischief (lighting matches, bee bee gun mishaps, accidentally strangling the dog by securing a Walkie Talkie around his neck) got trickier. So we bought him an 80 lb. heavy bag and boxing gloves and Adam and I began working out together.  We got him weights,  a  flex machine, and a dear friend bought him a pull- up bar.  All that stuff  occupied a corner  of our basement. Adam finalized the decor with a full size poster of Taylor Swift and  various video games (which we limited).

But as Adam grew, he, like most teens, outgrew his mom time.  We were planning a family party and I thought, let’s get a unicycle. The unicycle was a big hit that day, but only one person in our family took real interest in riding it – Adam.  He spent hours and hours practicing.  Months later, he could successfully ride the unicycle up and down our driveway without falling.  It was so wonderful to witness him master that skill and the smile on his face was priceless! It was a unicycle for one -amazing son.

Soon it will be a unicycle for one more amazing child.  I can’t wait to attend a session at Trenton Circus Squad and bequeath this gift to another curious child-one who is learning new  talents and who will receive the unicycle as a gift for his or her accomplishments at the end of a performance. Learning to master a unicycle is much like finding your way as a teen.  It’s overwhelming, scary, and challenging. You can be supported and cheered on, but in the end, it’s you and the journey and you do the riding. Adam gained strength, confidence, and balance from the unicycle.  I hope it brings those gifts and many more to its new owner in 2016

s

From the Trenton Circus Squad:

TEENAGERS, KIDS, TRY THIS!

Do you live in or around Trenton? You can join Trenton Circus Squad. There is no charge. And it doesn’t matter whether you already have circus skills or not.

You will learn incredible feats, make new friends, and work with a team of others. You will perform for your community and teach skills to younger kids. Be warned: there will be a lot of fun and laughter involved!

For more information about Trenton Circus, go to http://www.trentoncircussquad.org/

 

 

 

Angels Exist Here on EARTH!

I have always believed in angels; especially the heavenly ones.

But angels come in all shapes and sizes, and can fly into our lives, right here on EARTH, just when we need them most.  I have been blessed by many angels in my lifetime, but have to share one moment that occurred more than a decade ago; however that memory is still so powerful that it can’t happen without the inclusion of an enormous smile and a shiver.

It was a few days after Labor Day, September, 2000.  I awoke at six, as I did every morning- quietly rolled out of the twin bed in which I slept.  My bed was adjacent to my husband’s bed, a hospital bed.  The hum of his ventilator could have easily rocked me back to sleep but I had work to do.  So, I shuffled out of my slippers and night clothes and into my day clothes and clogs.  My husband Kevin was asleep and so was our daughter, Alina then age 8.  Alina would need to go to school in a couple of hours and I would need to help Kevin out of bed, and ready him for a new day.  But at this very moment, I had some quiet time to myself.  I walked into our kitchen where Kevin’s nurse sat, drinking coffee.  I gave her a hug and put on my light jacket.  I drove two blocks to the nearest WaWa and got my regular fix, a hazelnut latte, bagel and newspaper.  Then I sat in my car, radio humming softly and took sips of the hot, creamy caffeine. The bagel and paper remained untouched.  It was too early to be hungry – it was too early to read what was happening in the world.  Instead, I cherished the coffee and enjoyed my solitude.

For those ten minutes, my life was normal.  I was a mother, a wife and worker prepping for my day.  My life, my work, however was anything but normal.

That sacred space, where I could sit and sip and cry -was what I needed at the hour to prep for challenges the day would bring.  Soon, I would be back at home, waking Alina and getting her breakfast.  Then, I would gently wake my husband, who was, for the fourth year, bravely battling ALS or Lou Gehrig’s Disease.  Kevin was now paralyzed, he was unable to speak and he relied on a feeding tube for nourishment and a ventilator to breathe.  The physical Kevin, the one who went skiing, who played touch football, who mowed the lawn and hugged me tight- no longer existed.  Yet, he was my love, my hero and my world and I would gratefully spend the day taking care of him in every possible way.  I would help him to get out of bed.  I would wash his face and his body.  I would raise him with the help of a Hoyer lift and help him onto the toilet.  I would brush his teeth and give him his morning feeding through a tube.  Afterwards, his nurse would provide his medications and then I would start range of motion on his stiff joints.

Before my coffee was gone, when there were no more tears streaming down my face, I gathered my strength and drove towards home.

I looked at Kevin’s nurse, “Is he still sleeping?”

“Like a baby,” she whispered.

So I headed upstairs to wake Alina.

I began my maternal role- with snuggles and kisses and then said, “Good morning sunshine! What do you want to wear today?”

Alina was consistent. She hopped out of bed and smiled.

She looked into her closet and canvassed her drawers.

“This dress and these purple leotards,” said Alina proudly.

She dressed herself.  She didn’t want me to brush her hair and did her best at grooming.  She had a big bowl of cereal and had all of her homework done like the good girl she was and we packed up her peanut butter sandwich and snack and headed to the bus stop.

I encouraged cheerful talk on our walk, but inside my heart was aching.  The calendar said September and that meant Fall, soon to follow- Winter and if getting out as a family was tough in September, it was nearly impossible in February.  I may have been crying for many reasons on that walk, sheltered by my shades, but at that moment I was mourning our many losses as a family, and the enormous loss to come.

“Mommy, answer my question!” yelled Alina.

I had drifted…

“Sorry honey, what did you ask?”

“Do I have piano lessons today?”

“No sweetie, not today.”

I gave Alina a hug, watched her board the bus and waved until she was out of sight.

Alone again, my thoughts returned to just one loss – that summer was behind us and my family had never made it to the beach.

While a day at the beach sounded blissful, it was too much to ask for Kevin. A day at the beach was like running a marathon- an extraordinary event. It would mean having help with us, having medical equipment, keeping the wheelchair and medical equipment free of water and sand, it would mean keeping Kevin cool and comfortable, and it would mean a tough day for everyone involved.

I hated crying in public, but that didn’t stop the tears from flowing.  I was happy to have been wearing my sunglasses as I passed and said hello to the other parents. When I got to our home, I saw my brother’s car.

“Wow, it’s early, what’s he doing here?”  I thought.

I loved when my brother visited.  He gave me big hugs, he offered support both physically and emotionally to both Kevin and me.  He was a loving uncle to Alina and he was very generous with the little time he possessed.

My brother met me at the door.  “Don’t come in yet,” he said with a grin.

“Why?” I asked. “What’s going on?”

“Everything’s fine, just give me a sec,” he suggested.

The burning bush, the one that Kevin had proudly planted was beginning to turn.  I stood admiring its bursting hues and wondered what was taking place inside the house.

Moments later, my brother joined me out front.

“Ok, just trust me, “he said. Then he covered my eyes with a scarf and took my hand.

I would have then and still would trust him with my life, so holding his hand as I walked blindfolded into my home was easy.

Once inside, he asked me to sit down.

He then took off my shoes and socks.

“Jamie, what are you doing?”  I asked again.

“Don’t worry,” he said in his gentle voice. “You will soon find out.”

I felt the carpet under my toes.

I heard the dishwasher running.

I heard the humming of Kevin’s ventilator.

I heard the door to our patio open and took a guided step.

My foot did not land on a brick patio as expected, but rather, something cool and scratchy. I soon realized that my toes were sinking into sand.

It was a beautiful morning and the sand felt cool and welcoming under my feet.  Still blindfolded, Jamie then guided me to sit down on a towel.

He sat behind me and held me in his arms.

Seagulls screeched in front of me.

Mists of water speckled my face.

“Here you go,” said my brother, handing me a hot latte and biscotti.

We sat there, not needing to say anything.  He embraced me while I sipped my coffee and nibbled my biscotti.

I was in awe.  What a miracle of love! I had never made it to the beach that summer but my brother had brought the beach to me!

It was the nicest thing that anyone had ever done for me.  It was perfect. For fifteen minutes, until Kevin woke and needed care, I was at the beach.

When Kevin woke, my brother gently removed my blindfold.

Now I could see where I really was.

The patio was covered in sand.  A CD player sat on the brick wall, inside were sounds of the ocean. He had supported the hose on a bucket and the water was set to sporadically mist.

With my eyes open, the beach was gone.

But that memory, that sincere gesture of love and hope, kept me basking in happiness for a long time.

I will always be grateful for the day my brother Jamie brought the beach to me and to this day, his “beach” was the greatest gift of hope I have ever received.

May an angel, heavenly or EARTHLY, enter your life when you need one most!  Jamie (see picture) is still always there for me when I need an angel!

As My ALS Journey and Family Expands!

ALS 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. www.hopelovescompany.com

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. 

An Old Soul Christmas

My children (young adults at present) may see me as old -fashioned for many reasons.  I believe in strong core values, the act of saying please and thank you and the relevance of sharing dinner and prayer together. But, I’d rather think of myself as an old soul.   I’ve been comfortable with that persona since my early twenties, but now that I am 50, perhaps I’m just old!

According to Urban Dictionary, an old soul is a “spiritual person whom is wise beyond their years: people of strong emotional stability”.  Basically, someone who has more understanding of the world around them.

While I want to believe that Urban Dictionary has me pegged, I am not everything described, but I do feel as though I am always observing and trying to make sense of the world around me.  Usually, I am trying to make sense of why I don’t always fit in.

During the holidays, having an old soul for a parent can be a drag.  I’m hoping that you’re intrigued and are ready to take the old soul Christmas questionnaire, so if you read the characteristic below and find yourself nodding incessantly, you too are guilty my friend. And your children are probably calling you Scrooge.

Old Soul Christmas approach:

You decorate just enough to show you are celebrating the season, but not enough to be the recipient of oos and ahhhs.

You use recycled paper from last year’s holiday and value your resourcefulness more than your ability to dazzle.

You relish the taste of one amazing out of the oven snicker doodle- warm and melting in your mouth with delight.

You only send cards to those you miss, and you WRITE in your card, not simply sign your name.

You take mental notes year long and have gifts in mind by Halloween.

You make your own cards.

You know the real meaning of the season and let that guide your actions.

So, I’ve heard a few complaints and observations over the years:

“I’m not kidding when I say the Smiths have gone all out!  They have more lights on their house then we have on our street!”

Or:

“Can we all go away to St. Michael’s for Christmas like the Robinsons?”

And

“We give the worse gifts ever!  Practical ones!”

Sorry my children, but your mother’s an old soul.  If I had my druthers, I’d be Beth in Little Women and on Christmas Day, I’d feed a family in need and that would be ideal.

From Little Women by Louisa May Alcott-

“Christmas won’t be Christmas without any presents,” grumbled Jo.

“It’s so dreadful to be poor,” sighed Meg.

“Some girls have all the pretty things, while others have nothing,” sniffed Amy.

“But we’ve got Mother and Father and each other,” said Beth from the corner.

So my children, there’s always Valentine’s Day to look forward to!

My Hands With Heart

For years, I hated my hands for many reasons.  They have always been small, like the rest of me.  They are neither feminine nor beautiful. These days they are wrinkled and striped with veins, blue and bulging.  A few of my fingers are arthritic, wide and misshapen.  My fingers end with stubs for nails, nails which have rarely worn hues of red or pink.  Some days, I wish for different hands, hands that are delicate and pretty- with nails that can be dipped in dusty rose, chartreuse or coral without looking odd.

But my hands are powerful.

As a child, I used them to wrestle the aggressive middle school boys who thought girls were weak.  One grasp of my hands so strong left them speechless and me with the nickname, Meatballs.  My family is Italian so I received the nickname from embarrassed boys who caved in my vice.  I hated the nickname but loved the power it demanded.  Boys lined up to arm wrestle me, determined to beat “Meatballs” this time around.

That same strength gained me the girl’s arm hang record in the 8^th grade.  The challenge was the Presidential Fitness Award and the competitors among us loved the fitness it demanded.  While the boys did pull-ups, the girls had to complete the dreaded arm hang.  Once in a pull-up position, the clock started to tick.  My face flushed, my arms shook but I concentrated on the task at hand.

“Please don’t let go!” I thought, as my hands tired at one minute and 23 seconds when they could no longer resist the pull of gravity and glide of sweat.  They had held all of me, my nickname, my muscles, the meatballs in my belly and my will, as long as they could. I still have that faded certificate in a dusty file somewhere.

Once a teen, I welcomed puberty and the chance to grow.  My friends talked about needing longer jeans and sneakers with wiggle room, about meeting their parents in height, then joyfully surpassing them.  That never happened to me.  My body remained as though it failed to graduate eighth grade. I hated my small body, my small hands and my small life. I wanted to look like everyone else- to feel normal. Being strong wasn’t comparable to being attractive.  It wasn’t glamorous to beat a boy in arm wrestling, hell, it was intimidating! It was not the best approach to finding a date!

The human heart is said to be similar in size of the fisted hand.

But something happened that year and my heart grew bigger than my smallness. Bigger than my fisted hand.

It guided my hands in living and loving. Of giving and letting go. It didn’t matter that I was small in stature, I became instead, big in heart.

I started to volunteer in my community.  My hands were busy helping small children make crafts.  My hands were busy making meals for sick neighbors.  My hands were busy holding on to wobbly grandparents as they entered our home.

I took my love for helping others to heart and studied to be a teacher. My hands guided my pedagogical years too.  Dusty hands held chalk to board.  Germy hands passed gnawed pencils to unprepared students.  Sore hands graded hours of essays every weekend.  Kind hands patted shoulders of children needing encouragement.

Soon after I became a teacher, I met my future husband Kevin.  He was the son of the school’s reading specialist, now my mother -in -law Marge.  He was funny, handsome and strong.  Two years after dating, I became his wife.   Then my nurturing hands orchestrated my maternal world.  Diapering, feeding, caressing, they never seemed to tire in their loving care of our daughter Alina.

But the true job of my hands would be one that I had never expected.  One that I was born to fulfill yet never wished gained from experience.

Kevin was thirty years old when he received the diagnosis of Amyotrophic Lateral Sclerosis, ALS  or Lou Gehrig’s Disease.  He was my world and his terminal illness meant that WE were dying.

To understand what his life became under the influence of ALS, imagine this:

Lay in your bed.  Now, you can’t speak.  You can’t move.  You are depended upon a ventilator for every breath.  You can’t eat but are nourished through a feeding tube.  Remain there for minutes.  Does it feel like hours?  Years?

Kevin was in that state for years.  His paralyzed life alternated from hospital bed to wheelchair. His body had failed him yet his mind was fully capable of witnessing his body’s demise.

And my small hands could only do so much.  They could hold; they could touch.   They could wipe tears, but they could not cure ALS. I felt hopeless- so  small  that I had prayed to simply disappear.

One day while snuggling with Kevin, I began massaging his scalp.  His short hair felt ticklish under my fingertips.  I noticed the lines my fingers made as his hair parted beneath my touch.  I liked the texture, the flow.  My hands moved freely, with ease and fluidity.  They were on a healing mission. I noticed Kevin’s body, soften and sink deeper into the mattress.  His eyes were open, then closed.

Kevin’s body became my canvas.  My small, agile self moved gingerly around my sweet husband.  He smiled as much as his atrophied muscled allowed. My strong hands never tired.

I then sat above him, working my fingertips along his neck, gripping his shoulder muscles and feeling them melt under my touch.  The world of ALS melted too.  Kevin was at peace. So was I.

There was an internal melody encouraging my movements; my fingers moved with positive intention, soft and giving. For the first time since Kevin’s diagnosis, I did not think nor worry.  I was lost in this cyclical gift of giving and receiving.  I moved like a dancer, elegant and trained.  The enormous love that I wanted desperately to share with Kevin poured through my fingertips. It was the beginning of a new expression of my love for him and then for others.

 

Twenty years have passed and I am now a licensed massage therapist. The gift of massage still gives to me as it did that first intuitive moment with Kevin. I massage people who are feeling pain, grief, exhaustion, and anxiety.  I start each session with thoughts of my journey and how I arrived to that place and that person and not a massage goes by without enormous love from my hands with heart.