Having ALS is an expected death sentence. From diagnosis, the average life expectancy is 2-5 years. 2-5 years.
What would you do with 5 years to live? With 2? And that’s not taking into account what you COULD do.
One of our female clients, Debbie, is 42 and living with ALS. We met her for the first time in November of 2012 for a haircut visit. With advanced stage ALS, Debbie sits in a wheelchair, communicates with slurred speech, and offers her company a bubbly and sweet disposition that would put anyone in a good mood upon meeting. She is always happy to have people in her home and looks forward to her in-home visits.
Imagine communicating your needs via computer, every word created by your eye movement from letter to letter. A practice in patience, indeed, as wit, charm and love are communicated by a robotic voice unfamiliar from your own. Contrary to the affects on the physical body, a person living with ALS has full control over their cognition, memory and ability to communicate however limited. The journey through this disease is not an easy one – countless stories float the internet gracefully detailing the trip beginning to end.
So, what would you do if you COULD with 2-5 years left to live?
In early 2013, Debbie scheduled her second in-home visit yet had to cancel due to hospitalization, a common occurrence for our clients as their needs are always changing and immediate medical attention is often necessary. Two months passed and we had heard no word from Debbie about rescheduling.
When staff contacted Debbie’s family at home, we learned that she would be returning from the hospital the next day and had verbalized her strong desire to get pampered right away. It is the first thing she wants to do, her mother told us. All services possible, she said. As soon as possible, she emphasizes. We were happy to oblige, but due to the busy schedules of our volunteers – who not only offer their limited free time, but often work a full schedule as well – we were only able to provide services one full month later.
Here in lies the dilemma: Nothing is guaranteed, our days are short, and our clients want to live a life as big as possible. How do we help to make our clients’ lives everything it could be, while they navigate the things that cannot be control? It’s an all too familiar desire.
Our clients rely on us to assist them in their big lives; to live a beautiful life full of every possibility imagined, which they may not be able to fulfill on their own. Our organization relies on volunteers – you – to assist us in our big mission. Beauty professionals offer an opportunity for all of us to feel pampered, and, for our clients, an additional opportunity to ignore their illness and embrace their beauty as they fight the challenges of disease.
Make your life big, so that our clients can live big, too. Join our team; become a volunteer. Allow our clients to feel beautiful in their own skin, their own home, in the moments after they’ve spent two months in the hospital braving the challenges of terminal illness. We need you, as much as our clients need you to make our mission complete. Do not wait. We are looking for hairstylists, nail techs, estheticians, cosmetologists and barbers to provide the generous lift and gift of beauty, of normalcy, to our waiting clients who only want to feel like themselves before they became ill.
So, how big will you make your life? So big that you make another life that much bigger? How long are you willing to wait?