Four years ago, I was at the height of my life. In 2014, I was looking forward to a bright future living with the love of my life, Tommy and my amazing son Jesse, who was in middle school. I was enjoying spending time with my sister, Cyndi and her family, who had relocated to Charlotte from New York. Mom and Dad, were down in Florida, in good health. I was getting great pleasure from my many friendships both old and new. My career was fulfilling as I loved my role working for a great company invigorated by the many opportunities ahead of me. I was in my early 50’s and taking my fitness very seriously and was in my best shape ever. In March 2014, Tommy, Jesse and I just returned from an action packed trip to Costa Rica where we swam with sharks, rappelled down a waterfall, zip lined thru the jungle and fell in love with this enchanting country. Costa Rica was as much a spiritual pilgrimage for me as it was a great adventure because its beauty brought me closer to God. Upon our return, Tommy and I had dreams of returning and possibly spending a part of our retirement years there one day.
Little did I know that life had other plans for our family. In the spring of 2014, I started noticing myself tripping, not being able to hold yoga poses and dropping things unexpectedly. The doctors attributed these symptoms to several auto immune diseases I have including rheumatoid arthritis, a chronic condition I have had for several years. But by the summer of 2014, my symptoms worsened rapidly and I was referred to a neurologist. My complex case made a diagnosis difficult. Finally on May 31, 2016 after two years of testing, multiple hospital stays, several ambulance rides to the nearby trauma center, progressively worsening painful symptoms and mounting costs, I received the shocking and conclusive diagnosis that I have ALS. ALS stands for amyotrophic lateral sclerosis (Lou Gehrigs Disease) which is a progressive neurodegenerative disease affecting nerve cells in the brain and spinal cord. There is no current cure. Ironically, the attached video shows me accepting the ALS ice bucket challenge in June, 2014. I had the disease and didn’t know it yet.
Hearing those words “You have ALS” served as a wake-up call and a decision point. I can choose to live like I am “dying” in negativity and despair or I can choose to live like I am “living” with hope and grace. I choose the latter. You all know me - I know no other way. I plan to live each day to the fullest like always, rejoicing in the love that is all around me that now includes a beautiful 2 year old granddaughter, Hadley; her mom is Tommy’s sweet daughter, Kelsey. My parents have also relocated to Charlotte so our nuclear family is back together again.
My resilience comes from my Christian faith which is my firm foundation. My belief allows me to experience joy and gratitude in the midst of these dark circumstances. I believe I am on a faith walk that has a purpose. It has and will continue to be used for the good of others and ultimately for God’s glory. Miracles have occurred all along the way which continues to deepen my relationship with Christ. Though there is no current cure, I will continue to hope for one or treatment that can slow down its’ progression in my lifetime.
I am driven by my love for my son Jesse who I want to see grow up, for my loving husband Tommy, beloved parents Joe and Zena, my one and only sister Cyndi, my nephew Jake, my step-daughter Kelsey, my granddaughter Hadley and many other family members and friends who I want more time with. While difficult to ask for funding, I realistically have to. I may choose live life to the fullest but our finances tell another story. They are not sufficient to cover all the associated expenses, current and future. For example, we live in a two story home. When we thought I just had a neurological disease, we added a stair chairlift, an entry ramp and a mini kitchenette to the second floor to make the house safer and user friendly for me.
But now we are dealing with an entirely different animal, ALS. We need to live in a one story home so will soon put our home of 11 years on the market. But in order to do so, we are moving into an apartment so when prospective buyers want to see our home, I am not on premises. Once sold, we hope to purchase a small ranch home which will need to be be up-fitted for my changing physical restrictions and demands (ADA accommodations – ramps, 36 inch doors, ADA bathrooms, etc.). My current reality includes a machine that breathes for me at night so I stay oxygenated, special tools to feed myself, leg braces, a scouter and regular wheelchair for transportation. My lungs are not doing well so if they continue to worsen the doctors are concerned about my ability to get through medical procedures that require sedation. So as a safety measure, next month I am having a procedure to implant a feeding tube in my stomach while I still can go under sedation. ALS is an unpredictable illness. So far mine has progressed slowly but that doesn’t mean it will stay that way so we do not want to be caught unprepared. We need to plan for round the clock nursing care, in home ventilator, a sophisticated electric wheelchair, and a van just to name a few. Some of these are covered by insurance, some can be borrowed from the ALS foundation but many services and items are out of pocket costs. The last three years have already taken a big bite out of our savings, and we have just started down this road. I am determined not to miss the special moments such as watching my son play baseball and enjoying our granddaughter. But the truth is as this disease progresses, I will become fully homebound, will be in a hospital bed 24/7 surrounded by medical equipment. I would like to be as comfortable at home as a person with ALS can be.
I am at peace and know that God is in control. But I am a warrior who will fight with everything that I have, while accepting God’s will for me. My passion for life and love brings me to this request for help. Whatever you can donate is appreciated. If you don’t mind sharing this with others, I would be eternally grateful. Thank you too for all your prayers. God is listening and answers them. I will continue to provide updates. Take care, enjoy your lives and God bless you.