Helping people understand what living with ALS is really like
An ill-informed online topic sends this columnist reeling
I enjoy reading motivational blogs written by people from all walks of life outside the ALS community. What they write not only inspires me, but also gives me lots of new ideas.
However, one recent blog post had me fuming. The author described how she was transforming her life by reducing stress, simplifying her days, and taking a long, extended break from work. Her post was in response to the question, “What would you do differently in your life if you were told you only had three years to live?”
My mind reeled, because pretending to have a shortened life span is far different from the reality of living through it for real.
Don’t get me wrong. I’m all for people improving their lives by taking the simple route and making better lifestyle choices. But now that I live with ALS and have had the “You only have three years to live” speech given to me, trust me, my life has not transformed into one that is simple and stress-free.
My back story
During my professional years, I taught wellness classes. I lived a wellness lifestyle and felt good. When my husband retired from his job, we moved to sunny Arizona and enjoyed the idyllic life of swimming, yoga, socializing, and exploring our community’s places of interest. Two years in, I was told I had ALS, along with the prognosis of three years to live. That’s when my life suddenly became complicated.
What did I do? Like most newly diagnosed patients, I said, “What? No way!”
I then devoted myself to finding out how to make it go away and keep on living well beyond three years. For most ALS patients, this includes getting a second opinion. While we’re waiting for that to happen, we scour the internet and join online chat rooms. We get caught in never-ending thought loops, imagining worst-case scenarios.
Simplify my days? Slow down? It wasn’t a choice — it was forced on me by my ALS. Suddenly, there weren’t enough hours in the day to do what I wanted to do. And I wanted to do everything, cramming in as much living as I could. But my body moved so slowly.
Taking a second look
A few days later, I read the blog post again and realized my frustration wasn’t aimed at the author and her renewed life goals. Rather, it was because of the disconnect in perceptions that the general public has of what living with a rare disease like ALS is really like.
The question “What would you do if … ?” implies that simple fixes will counteract a shortened life. More exactly, the question should end with “… because you have (“X” rare disease).” Only then will the mental game have the significance it deserves.
Rare diseases do not have simple fixes
ALS is one among many serious conditions in the rare disease community. Along with living with serious health issues and the possibility of a shortened life, we in the rare disease community must accept our diagnoses, adjust to our new normal, and maintain a positive attitude despite our individual health challenges.
I encourage you to type the hashtag #WhyRare on LinkedIn, Facebook, or Instagram to read the many stories of people living with a rare disease.
As we observe Rare Disease Day today, let the many awareness activities show that those of us with rare diseases want not only to live as long as possible, but also well while living with our rare disease.
Note: ALS News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of ALS News Today or its parent company, BioNews, and are intended to spark discussion about issues pertaining to ALS.
Great observation, Dagmar! I totally agree, and wanted to add my POV as the spouse and caregiver of a person who was living with ALS.
When Hal was diagnosed, I initially did exactly the opposite of the blog poster. Like you, I SPED UP my days. I was frantically busy: trying to find out all I could about ALS, searching for another diagnosis, dealing with escalating financial issues, looking into all kinds of alternative treatments for my husband. And because we could not afford theses treatments, finding clinicians who were willing to teach ME how to do things like acupuncture, IV infusions, etc. We joined a clinical trial (Turned out that Hal was in the placebo group, but the drug being investigated did not work anyway.. Nothing ever worked. Life was a hectic, never ending terrifying rollercoaster.
I could never even come close to accomplishing what I wanted to. I was a mess! Eventually I saw a counselor. She advised me to “slow down”. I looked at her in disbelief. “Slow down? I need to speed up! there is SO MUCH I need to do everyday!”
But after getting sick and also injuring my back, I finally did slow down. And realized that I had to adjust my expectations, and simplify life. Not out of choice, but of necessity.
Fran, I agree. We get such a warped sense of time. And yes, like you, I had to adjust my expectations and learn to live in each moment. To just "Be."
Best wishes to you. Dagmar
Diagnosis of 3 years to live and you are writing about it 13 years later! Just goes to show that the doctors don't always get it right and I'm sure that staying as active and focused as possible has aided in your longevity.
John, thank you! I like to think that I have had a positive impact on slowing down the progression of my symptoms.
Dagmar, you have awesome spirit and compassion for others on their journey. I'm 2 years in with bulbar onset, have felt and managed the changes as best I can, and have now settled into a living-with-it mentality. I'm taking the prescribed drugs, enrolled in a clinical trial, and searching the vast amount of functional medical practices and naturopthic strategies, trying to implement the protocols that resonate with me. This is not a part-time job. I do have great support systems all around me, but verbal communication has become extremely difficult. Fortunately, I was recently able to retire with early SSA benefits, and now I'm finding more time for self-care and dealing with the family matters associated with our rare disease. I only hope that I can extend life and enjoy my passions like you have. Congratulations on your successes so far!
Clint, I applaud your spirit, attitude, and good planning! I'm also high-fiving with you across the miles ;-) Best wishes to you. Dagmar