“The Beauty of ALS” Chapter 77

If I said every day was great and sunny in my life, I’d be lying. The simple fact is that some days are cloudy. It doesn’t matter if it’s sunny, raining, hot or cold; if you are having trouble your day will be cloudy and that’s alright. What you do during that time is what matters the most.

Last month my friend Mike and I were brainstorming ideas for the blog as we often do when he visits. Ironically, another friend posted the below shortly after. I thought it fit perfectly with a topic Mike and I had discussed, and I connected with it as soon as I read it.

“A lake or a puddle? It's actually a puddle, but even in the smallest of things you can still find joy and beauty. It's all about your perspective and what you take out of it. There is joy all around us, we just have to find it and make it ours. This picture is an example of that. Yes it's a puddle, but it looks like a lake. Amazing thing to bear witness to and see, because it’s a great reminder that the small things are what make life worth living”. (Tracy T)

Over the past two years, I've noticed that I am slowly losing my senses. The tv has to be louder to hear it. The trachea prevents me from smelling anything. My tongue has lost most of its function, so much my taste is limited. I can feel, but I can’t use my hands to touch.

However, I can SEE. And seeing means I can imagine. My imagination helps me write. My writing allows me to hear clearly the songs of the birds outside my window, smell the fragrance of the different roses in my garden, taste the delicious foods with my tongue again, and touch my wife's face as I lean in to kiss her. I take joy in seeing the beauty in the little things I didn’t see before.

When I was deliberating if I was a hypocrite or not because I wanted to be baptized, I called Mike - my brother in Christ - for help, and he reminded me who I am. I realized I am ignorant to what the Bible teaches us and how others, who were also sinners, were chosen by God and then became men of faith. ALS has taught me that I deserved to be baptized and continue learning so I could help others. I was worried about what others thought and failed to see that I simply needed to ask for forgiveness.

Love - the other four letter word. Why are we so fast to say F you instead of Love you? F this and that instead of I Love this and that? Are we scared that if we said I love you, or let our defenses down, someone might all of a sudden feel an obligation. Can you imagine if we all started saying I love you instead of F you how much happier and peaceful we would feel. The Bible teaches us the greatest commandment is to “30 Love the Lord your God with all your heart and with all your soul and with all your mind and with all your strength.’ 31 The second is this: ‘Love your neighbor as yourself.’ There is no commandment greater than these.” (Mark 12, 30-31 NIV)

I have found the strength to use the word Love freely without obligation. ALS has shown me the beauty in my favorite four letter word and now F&@k is the other four letter word.

Since being diagnosed with ALS and starting this blog I have grown closer to friends and family and gained many new friends. I’m not speaking about social media friends. I have been blessed becoming friends with PALS, CALS, and many others I may not have otherwise.  I have developed beautiful friendships with them who I truly love.

I used to be a big in person volunteer with several organizations over the years. As my ALS progressed I moved further away from giving back, so I thought.  Than I looked at my little blog and realized the impact telling my journey has made on others. When I started this blog I asked Laura who wants to read my story? Laura said “do it for your family”, little did we know how big our family would get. I now see the beauty in volunteering in another way.

There is beauty all around us we just need to slow down and take a good look. Living with ALS has changed my life forever. ALS help me see the beauty in the little things that sometimes can mean the most. Looking out a window, hearing the rain or even sitting in peace. When I reverse this I will see lakes made from puddles, use my senses to enjoy life differently, love more and never stop giving back to others. Because if we are going to be better, we have to see the beauty in the smallest of things even on cloudy days.

Love and Blessings

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