My ALS Story for ALS Awareness Month. I’ve never questioned why I have ALS. Horrendous things strike people every single day, some unimaginably worse than ALS. Why would I be exempt? This just happens to be the hand I’ve been dealt. My diagnosis collapsed my world initially. While we can empathize with those tragedy befalls, it is altogether something different when it happens to you. It’s personal. It’s devastatingly painful, and it obliterates the life you always thought you would live.
My personal journey with ALS began in the late 1990’s. I was a single mother supporting my two children, as well as my mother and two elementary school aged brothers. While traveling for work, I received an urgent call from my daughter. I still remember her exact words. She said, “Mom, there’s something wrong with grandma. You need to come home right away.”
The months that followed were some of the most difficult of my life. I went on FMLA leave to take her to the specialists. She was diagnosed with ALS and had to have an emergency tracheotomy and placed on a ventilator to survive. The hospital staff had no idea what ALS was and didn’t understand why she couldn’t manage her own trach care. Things were different back then. So, I was trained on all things respiratory. She was discharged, and we returned home. Four kids and a newly trached mother to take care of…No help, not much sleep and a whole lot of crying. I don’t think anyone realized how critical and desperate the situation was.
A couple of months into it, her case manager recommended she be placed in a sub-acute nursing facility until the insurance approved two eight-hour shifts per day of in-home skilled nursing care. We agreed, thinking it was temporary. She was taken to a facility thirty minutes away. I returned to work, and the kids and I would visit her on the weekends. Six months later, it was approved, but she refused to allow me to take her home. She didn’t want to be a burden. I felt like I failed her.
Fast forward to 2002, I was engaged to the love of my life. The kids were thriving, and my mother’s health was holding steady. It’s amazing how life can be great one minute and turn completely upside down the next. Thinking I had carpal tunnel, I went to an orthopedic doctor. After examining me and reviewing my family history, he said, “Do you know ALS can run in families?” I did, but I didn’t realize it ran in MY family. Other than my mother, I didn’t know of any family members with the disease. (I later learned there were distant relatives who had ALS. You can have the mutation in our case without ever developing the disease.)
Off to the neurologist I went, thinking the whole time nothing serious was wrong. I had the EMG and NCV, and the doctor was concerned. I got worried. A battery of tests later, and still hoping for a different diagnosis, I returned to his office alone. Holding my hand and fighting back the tears, he said, “I’m so sorry to tell you this. You have ALS.” My world fell apart. In hindsight, I was having symptoms for a couple of years -- the persistent quiver in my pinkie finger that never went away, locked/cramped fingers and the beginning signs of muscle loss in my hands.
Life changed that day. I mourned for the life I thought I would live and couldn’t talk about my diagnosis without breaking down. At the forefront of my mind, I was always worrying about the kids’ futures and praying I would live long enough to see them graduate high school. I wanted to grow old with my fiance. Time, I desperately wanted more time. I didn’t think the gloom would ever pass, BUT IT DID. I was a fighter. It had to.
I married the most incredible human being, and together we built a loving and supportive home. My disease progressed slowly, and I saw my children grow into adults. I feel so blessed and grateful for that. Would I like more time on this earth? Yes, but I thank God for all of the love and beauty I’ve had in my 45 years. I thank God for all of the difficult situations and hardships I’ve had, too. They’ve given my life depth and meaning and have made it so much more precious.
In January of 2014, my loving and compassionate son was also diagnosed with ALS. Imagine all of the hurt and anguish you’ve ever experienced multiplied by a thousand. That’s how I felt when I first found out. I find it so amazing how he’s faced his diagnosis head on and has let the world in to witness his journey. I love him so very much and couldn’t be more proud.
I’m looking forward to the day when I can wrap my arms around my loved ones and hug them close. That day is coming…I feel it in my heart. We just all need to do our best to hang in there until then.