I don’t believe in New Year’s resolutions, but each year I create a vision for what comes next. I begin by looking back at what I’ve learned. The lessons from 2022 were some of the hardest.
The Lesson of Grief
My father died on October 31, 2021. The last two months of 2021 were a blur, and 2022 began with profound sadness and grief.
Although I tried to prepare myself during the last year he was ill, I was not ready to say goodbye. I lost a piece of myself the day he died, and I knew life would not be the same without him.
I couldn’t view the lessons learned this past year without reflecting on my father’s impact on my life and on all who knew him.
I’ve been unable to write about his death until now — maybe the words were too difficult to see on a page. It’s still not easy, but I’ve found some peace that his memory lives on for all who knew him as an example of a truly great man.
While I still grieve his death, I also celebrate his remarkable life and what I’ve learned.
Lesson 1: Grief is a process that comes in waves. You never know when the next big one will knock you down and leave you trapped under a wall of water, searching for the light at the surface.
Family Bonds
I was blessed to spend a great deal of time with my father throughout my life, especially during the past decade. I cherished our times together, keenly aware that time passes too quickly.
For 88 years, my father quietly touched the lives of thousands of people, but none more than his family. He was also devoted to his patients, colleagues, and the medical profession to which he dedicated more than sixty years.
He was known for his kindness, generosity, intellect, compassion, and wisdom.
He was the epitome of class, one of the last true gentlemen.
He lived in truth and faith.
He was a man of few words, but for those who were lucky enough to listen, he left a lasting impression.
Lesson 2: Cherish the time with your loved ones and make them a priority.
Lesson 3: A legacy is made through one’s character, reputation, and treatment of others.
Capturing a Life Well Lived
At the time of my father’s death, I located the handwritten notes he had left me in the top drawer of his desk, an outline of his professional life. He had asked me to write his obituary, a request I was honored to uphold. Even in death, he made this request easy for me, highlighting key dates from his impressive resume that I may not have known or remembered.
I did my best to tell the story of his incredible life, capturing his outstanding accomplishments, and highlighting his legacy.
The outpouring of love after his death was remarkable but hardly surprising. He touched the lives of everyone he knew. There were endless stories of his compassion and care for the patients he treated for decades.
Despite a COVID surge, on the day of his funeral, the church was filled with those who loved and respected him. Calls, cards, and donations to his chosen charity, The Dana Farber Cancer Research Center, continued throughout the year. When news traveled to patients in other areas of the country and outside the US, a call or letter soon followed. Everyone spoke of his kindness, generosity, and his love for his family.
To this day, when my son and I meet a former patient of his, they tell us stories that he shared with them about our accomplishments. He was so proud of his children, grandchildren, and the love of his life, my mother.
He and my mother had devoted more than sixty-five years to each other. They were a beautiful couple in every sense, dedicated to their families and generous to those less fortunate.
The photo from their wedding day appears to be from a classic movie. My stunning mother, the local beauty queen who graduated with honors from Brown University, and my handsome father, the high school basketball player who became a dental surgeon and started the first dental program for disabled children in the U.S., ensuring all had a place for treatment.
What I didn’t share at the time of my father’s death were the many personal stories and quiet conversations between the two of us. It’s those memories that I cherish and hold dear.
Lesson 4: Despite how much time you spend with your loved ones, it’s NEVER enough. You always want more time.
The Calm in the Storm
When my son was four years old, I went through an unexpected and difficult divorce. Without missing a beat, my father stepped in as a surrogate father and role model for my son.
We lived close to my parents and saw them regularly. Despite his busy schedule, my father made time to see him every day, even if it was for a brief hug and an encouraging word. When my son played baseball, my father played endless hours of catch with him and never missed a game. This was the type of man he was.
When my son was eleven, he became quite ill, virtually overnight. My father accompanied us on endless appointments questioning the specialists. When doctors dismissed my son’s condition, my father joined me in my search for answers. He asked me to pass along the books and medical articles I read. When he finished, we discussed what we had learned, our concerns, and my fears as his condition worsened.
My father was a pillar of strength for me, the calm in my storm. He stood by me during the most challenging times of my life. He compelled me to keep searching for answers to my son’s illness and inspired me to believe there was an answer.
He was right.
Lesson 5: The greatest gift you can give a child is the gift of your time.
Lesson 6: Children learn what they live and what they see. When you teach by example, the lessons last a lifetime.
A Healing Journey
In 2020, my father watched with hope and trepidation as my son and I began a new treatment offering promise. He knew the treatment was unproven, but he understood the science, and like me, he believed in the possibilities it offered.
Unfortunately, my father didn’t get to see the dramatic improvements we experienced during the past 14 months, but I’m certain he is celebrating every victory with us today. As if he were sitting next to me, I hear his voice reminding me how far we’ve come and encouraging me to keep going.
Each morning I say a prayer of thanks for his love, support, wisdom, and guidance. I also remind him how much he is missed.
Lesson 7: Never lose hope.
Starting New With a Little Help
While nothing can replace the loss of a loved one who has impacted your life, I knew that to honor my father’s memory I needed to honor his wishes.
He had discussed several with my son and me. Most were easy.
Two were more difficult:
He wanted my son to publish his first book of fiction.
He wanted me to tell our story of living with a chronic, invisible illness. He wanted our story to give hope to those still suffering.
When my son found his passion for writing, my father encouraged him daily to pursue his gift. He loved reading his drafts and re-writes.
Although my son lost one of his biggest fans, he recounted to me a vivid dream where he and my father discussed his book, solving a plot issue that delayed his progress. I wasn’t surprised when he shared this story with me. My father and my son had a bond unlike most. It seemed natural to me that they would find a way to stay connected.
Now 17, my son is on his way to honoring my father’s wish to publish his first book. He continues to write daily.
Lesson 8: Although our loved ones depart the physical world, they are still with us, and I believe if you’re open, you can find a way to communicate with them.
Taking a Stand
After watching me struggle with my illness for years before my son became ill, my father understood more than most that living with an invisible illness can take its toll and change the course of one’s life.
He understood the misinformation surrounding my illness and encouraged me to write about the experience. He believed by sharing my experience, I could help raise awareness.
He thought it important to explain how I uncovered the cause of my son’s illness, and ultimately mine, while more than 30 specialists in three states over the course of two decades had come up empty.
No one was more upset when a well-regarded neurologist at a leading children’s hospital suggested my son’s neurological symptoms, which led him to be in a wheelchair, were exaggerated in an attempt for attention. As a physician who never stopped learning, my father was infuriated that so many physicians were dismissive and lacked the desire to learn what they didn’t know.
After reading the history of Lyme disease and the politics surrounding it for more than three decades, my father could not understand how an illness that affected millions of patients, leaving many permanently disabled was disregarded. Most of all he could not fathom why advancements in science were being ignored.
It was beyond comprehension for him as a doctor, a father, and a grandfather.
Lesson 9: Do not be afraid to pursue the truth.
Telling My Story
For these reasons, 2022 led me to increase my advocacy efforts for patients with invisible illnesses. While Chronic Lyme was the focus of these efforts, millions of patients with Long COVID, Chronic Fatigue, Fibromyalgia, and many autoimmune diseases could relate.
The story was the same.
Millions are suffering.
Patients are dismissed.
The truth is hidden.
I began writing about the science of Lyme and other vector-borne diseases, calling attention to the facts and the epidemic that no one talks about.
There are an estimated two million patients living with Chronic Lyme in the US alone.
There are 500,000 new cases of Lyme disease every year.
30% of new cases, or 150,000 patients each year will develop a chronic disabling disease due to Lyme and other vector-borne diseases.
I lifted the veil that kept my illness and my twenty-five-year journey under wraps by telling my story. I expanded my efforts on social media platforms to help change the false narrative that dates back three decades.
I committed to writing a book for patients, parents, and children suffering from invisible illnesses so they may find a path forward.
The Lessons Continued
As I began to tell my story, I quickly realized how many people needed to know they were not alone. Most patients were suffering in silence, isolated from others due to their condition. Sharing my story opened the door for many to reach out and connect.
My father was right again. My story mattered.
Lesson 10: My story can help others.
Lesson 11: There will always be those questioning you and trying to knock you down, but the truth will keep you moving forward.
Lesson 12: By choosing happiness and practicing gratitude, even in the midst of great loss, I could follow my true path.
Lesson 13: Those who leave us physically ultimately find a new way to guide us along the path we are meant to take. It requires an open mind and an open heart.
My father made a difference in the lives of everyone he knew. As I continue to honor his memory, I hope to make a difference for just a few.
Thank you for reading and supporting me. If you’ve subscribed, I appreciate you more than you know.
If you’re suffering from an invisible illness, please know you are not alone!
If you have questions about Lyme disease, leave a comment here or reach out directly at tmansolillo@gmail.com. I’d be happy to connect with you.