Growing up I was lucky to have two amazing role models. It was by their example that I learned how to re-invent myself after my chronic illness diagnosis. When my Dad was ten years old, his father became chronically ill. Before this, my grandfather had overcome polio and tuberculosis. It was a heart attack and lung issues that caused my grandfather to no longer be able to work. I heard the stories of how tight money was. Bills went unpaid and food became scarce. So, my Dad stepped up and went to work. His family’s financial future was placed in his hands.
My Dad started mowing lawns to help pay his family’s bills. Then, at the age of fourteen, my Dad became a professional drummer with the Dial Tones. The band played all around Baltimore City and Baltimore County. The other band members were fifteen to twenty years older than my Dad. I can remember my Dad telling me that he would have to lie about his age to play with the band at bars and clubs. In each band picture, he looks so young, so happy, and so driven. For the next thirty years, he continued to play music with the Dial Tones.
My Dad worked hard his entire life. Besides being a drummer, he was employed as a bank teller. He worked his way up from bank teller to Vice President of the Credit Union. While working full-time at the bank, part-time as a musician, and raising a family he put himself through school. His drive and motivation were unstoppable. What he wanted he kept reaching, striving, and working hard for. While my Dad worked, my Mom took care of her in-laws. My grandfather was the first to pass away, then my grandmother from Alzheimer’s disease.
Twenty years after my Dad’s mother passed away from Alzheimer’s disease, my Dad was diagnosed with Alzheimer’s. It seems that he could not escape chronic illness. After he could no longer work, my Dad started to volunteer with different addiction treatment programs. I have been told, “He would do anything for anyone.” My Dad helped support and encourage addicts during their recovery. He continued his volunteer work for the next five years. Just last week someone said, “He was a great man. He loved to help people who were down and out.”
When my Dad was on Hospice Care the people he helped surrounded his bedside. They held his hand. They prayed over him. They told me countless stories of my Dad’s dedication and the grace of his character. He had been helping people since he was ten years old. Even when he was diagnosed with a chronic disease his goodwill continued and he reached out to help so many. My Dad passed away almost two months ago. In two weeks we are celebrating his life on what would have been his sixty-second birthday. His life was beautifully lived and an inspiration.
My Dad has inspired me to be a better person since I was a young girl. Always I would go out of my way to listen or to help someone. Not only did my Dad inspire me, but so has my Mom. Two years before my Dad’s chronic disease diagnosis, my Mom was diagnosed with Parkinson’s disease. She could no longer work. It was at this point that my Mom re-invented her own life. Before her diagnosis, my Mom was a Certified Nursing Assistant. She could no longer handle the physical demands of the job, so she had to start over again.
At this junction in her life, my Mom opened a bookstore. It was a cozy neighborhood bookstore that hosted storytimes and pot luck dinners. Her store was a gathering place for people in the community. I can remember the smile and joy on her face when she would talk about her store. A bookstore was her dream come true. My Mom’s physical health began to deteriorate quickly, so after three years, her bookstore went to being online. She shipped books all over the world, donated books to local charities, and shared the gift of literature with everyone around her.
My Mom was able to keep her online book store open for six years. It was at this time that she had to shut down. She could no longer find the books on the shelves or handle all of the emails. Instead of being defeated she said, “What should I do now?” My Mom donated her books to local organizations, schools, and literacy programs. She continues to hand out books and spread the joy of literature to many. As her bookshelves became empty, she started her own craft business. She makes beautiful flower arrangements from the comfort of her kitchen table.
My mother and father’s drive inspires and amazes me each day. Two years ago my life changed forever. Due to a skateboarding injury, I broke two bones, tore three muscles, and partially ruptured a tendon. Every joint in my ankle froze in place. So, there is little movement or flex. I can only describe it, as trying to walk on a wooden plank. I have been told that my ankle will never heal. I had to resign from my job. My life and my family’s life changed. I went from having a fulfilling career that I loved, to not knowing how I would function normally again.
For three months I gave up. I laid in bed, I cried, and I had no idea what to do. The bills piled up. We had so many unpaid bills and medical expenses. There was no end in sight. I remember the first month we couldn’t pay our rent and utility shut off notices began to trickle in. I was terrified. I had gone from confident, financially secure, and happy to despair. For the first time in my life, I had no idea what to do. What direction should I take? I knew that I had to find something that worked with my physical limitations.
As I was laying on the couch, depressed, I came across an article on how to make perfume. This was when I felt a spark of hope, I began to see the sun shining again. So, I learned how to make my own perfume, came up with recipes, and blends. From here I learned how to make healing salves and ointments. This was the birth of my new business, my new path in life. My perfume business was strictly online. I have sent my blends across the United States to Japan and even Australia. It brings me joy each time a customer tells me how much they love the perfume.
When my Dad went on Hospice Care and my Mom’s condition worsened I shut down my online perfume store to become a full-time caregiver. After my Dad passed away I decided I wanted to re-open my store. So, in two weeks my perfume store will officially be celebrating its grand opening. Not only will I sell perfume, but I will sell goods hand-crafted by local artisans. My Mom is one of those artisans. Through the support of my husband, children, and parents my dream is beginning to take shape. I have always wanted my own shop.
Through this opportunity, I hope to offer free art and aromatherapy classes to people in the community. I hope to continue the goodwill of both my father and my mother. Chronic illness and disease affected my family early on. Each roadblock, each diagnosis, could have stopped my parent’s in their tracks. It didn’t though. They rose up and re-invented themselves each time. They became more understanding, patient, and kinder people. Not only do they spend time battling their own chronic diseases, but they spend time helping the people around them.
Through my parents, I learned how to deal with and to accept my own chronic illness. Never let your chronic illness or disease define who you are. You define yourself. If you want to do something, reach for it, despite your illness. The most courageous, most driven people keep moving forward. I know how painful and challenging this can be. Small steps can take us to the biggest places. Take your experience and let it be the light on the hard days. Remember the stars shine on the darkest of nights. If you have the will there is always a way!