#20 My ALS Journey—Gains, Losses and Thank You

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Consider it all joy, my brothers and sisters, when you encounter various (poikilos: many-colored) trials, knowing that the testing of your faith produces endurance.” James 1:2 & 3

Our family once took a road trip around Ireland. My mom loved every bit of it for so many reasons, one of which is the many-colored doors in Dublin. As you will find, she wrote about, tested, and rated many doors throughout her sickness.  Each door presented a new challenge or gift to her, a disabled user.

In the Bible, James tells the Christian to consider it all joy when encountering each and every various colored trial.  ALS brought many tangible and intangible losses (imagine not being able to scratch an itch) but many blessings as well. A good door made my mom pretty happy.

–Tricia

Expandable Door Hinges
Each week my thank you list gets longer. Some so many people help me out regularly. This week I would like to thank Adam (my middle grandson) for the great job he did with the hinges on my bedroom door. I can now power my way through the doorway without tearing the door off the frame. The “expandable door hinges” work great.

Each day ALS brings gains and losses into my life. It is not the same as pluses and minuses. Gains and losses are more than a scorecard, a math problem, or the dividing line down the middle of a blank page to help you choose a direction for life.

There are the obvious losses that go with ALS, and then there are the less obvious losses, such as: reaching the water faucet at the sink, seeing people at eye level, pulling up close to the table, hugging from a standing position, pulling weeds, playing in the dirt, drying my hair, getting dressed without help, cooking special food that I crave, and putting on my own shoes.

Here are some of the things that I have gained: knowing how strong my faith in God is, experiencing daily love from family and friends, eating dessert knowing that is not what is going to kill me, connecting with friends, teaching a Bible study, and meeting other ALS patients that are so courageous and willing to share their stories and creative ideas for daily living. I know as time goes on, I will continue to add to both lists of losses and gains because each day is a new adventure.

I thought I would throw in some of my fears (not counting the obvious ALS problems): becoming mentally stagnant, enjoying daytime television, seeing all Netflix movies, filling out my wheelchair from lack of exercise, wearing moo-moos, friends getting tired of meeting me for coffee and/or lunch, and Cliff revealing he really doesn’t like to drive and he is taking back the chauffeur hat and coat.

–Susan

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