Sarah Lynse: Choosing joy in the midst of life’s challenges
I think most of us would agree that life is hard. Everybody’s situation with the storms of life is different. I would never want to tell someone how to react to their own difficult circumstances.
In the summer of 2019, I was diagnosed with Amyotrophic Lateral Sclerosis (ALS). After a few months of living in despair, I felt I had two clear choices. I could spend my days dwelling on my physical handicaps and worry about future effects of the disease, or I could seek joy by looking for every little moment of my day that brought me peace.
I want to make it clear that I’m not telling you about my ALS to gain pity. That is the last thing that I want. I decided to share my ALS story in hopes of letting you know that sometimes it is possible to find joy in the midst of fear and sorrow.
Only one in every 100,000 people are diagnosed with ALS. It is a neurological disease that can affect your breathing, your speech and weakness in your limbs. ALS affects different people in different ways. Sometimes, it is inherited. Mine is not the genetic kind.
There is really no cure for ALS, and scientists are not sure what causes ALS. Fortunately there are ongoing studies for treatments. At the present time, I am in a stem cell study at Mayo Clinic in Rochester. I am receiving spinal injections of my own stem cells. This treatment is not a cure, but the hope is to slow the progression of the disease. There is also a new promising drug to help slow ALS progression that could be approved by the FDA in the near future.
When I was first diagnosed, I didn’t know how to handle this diagnosis, but then I decided I would fight. Some people actually live many years with ALS. Sometimes, ALS is reversed, it stops progressing. Sometimes it plateaus out, meaning it doesn’t progress for many years. The disease can move at different speeds. My ALS seems to be slow moving, only affecting my strength in my arms and my hands. I am still able to do almost everything that I always have done except ride a bike, because my arm weakness affects my balance.
I continue to fight this disease, and I found different ways to fight. The first thing I did was to go on an antidepressant. That made me able to talk about the disease without turning into a puddle. Then I found a very good therapist. She helps me navigate through all the emotions of having a disease like ALS. I see a team of specialists at Mayo who make sure I am getting the best care possible. I have new friends who have taught me how to live with a serious health problem. I have found ways to spend more time with friends and family. None of us know how long we have to live, and so it is my choice to spend my days focusing on joy, instead of
focusing on this disease. My hope is that other people will learn to look at their lives and try to find anything that brings you joy.
I have witnessed so many beacons of light and acts of kindness in my day to day life with ALS. When I ask someone for help with some task that I used to be able to do myself, like fill my gas tank, It is a humbling experience. I often feel shame and humiliation at my inability to physically perform some of these basic tasks. But then God gives me a surprise. It seems that often when people have the opportunity to help someone, their demeanor often softens. They put away that invisible protective emotional armor that we all shield ourselves with, and they’re ready to help in any way that they can. I have learned to somewhat swallow my pride so I can fully appreciate the joy of allowing one human being to help another.
This is the first of many columns that I will write. I will be sharing the joys I experience in my life. I would love to have any of our readers send your joyful moments to the email below. I will share your submissions anonymously. Your joyful moments will inspire us all.
Sarah Lysne lives in Austin with her family. She loves writing and spending time with family. She chooses to live her life seeking joy, while living with ALS. Please send your stories of joy to email@example.com