#38 My ALS Journey—The Path and the Box

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This blog of mothers made me laugh out loud, especially her discussion of sitting in the designated handicapped seating area in the church. Mother did not like Boxes. She was “claustrophobic” regarding most rules, and Boxes gave her hives. My husband loved to tease her about this too, and after this particular incident, she visited us at our home (via the Path), where my husband mapped out on our hardwood floor, in blue painter’s tape, where she should place herself for the duration of her time with us. She did laugh, but she didn’t sit there.

The Path also brings back memories. It wasn’t perfect. Water erosion swept rocks away leaving puddles and a less than smooth experience.  We also lived on a hill, and the path was steep and made us hold our breath each time she made her descent. She tried hard to conquer it, but at the end of the day, as she grew weaker, the journey down the hill frightened her more and more. The idea of hurling headfirst down the path with the potential of tumbling out of her chair became too much to bear.

In Psalm 119:105, the Psalmist declares, “Your word [O, God] is a lamp to my feet and a light to my path.” He traveled a road where darkness made every step dangerous and potentially fatal. We also reside in a shadowed world full of afflictions. We face challenges inherent in a world marked by sin, and life’s difficulties cluster at our feet, threatening to make us stumble at every turn. Bitterness and anger fester within us while those closest to us inflict harm. We mourn the loss of beloved individuals, grapple with diagnoses like ALS, and find ourselves ensnared by everything from compulsive exercise to alcohol dependence. Sorrow engulfs us, anxiety holds us captive, and the echoes of past tribulations continue to haunt us. This dimly lit world is fraught with pitfalls that threaten to trip us up and make us stumble and fall.

Psalm 119 is a precious promise on a dusty, steep path, and Mother held His lamp high.

–Tricia

You have to love life…there are so many more things that are good than bad. A couple of thoughts/challenges/experiences this past week made me laugh. It is all about the path and the box.

As a family, one of our first challenges after my diagnosis was when I realized I could no longer walk up the front steps to my son-in-law and daughter’s home. This was a huge loss for me since we have shared many family dinners and holidays sitting around their dining room table. Being the super son-in-law that he is, Craig immediately redecorated his front lawn by putting in a path that we believed I could navigate with my power wheelchair.

Admittedly, I was “chicken.” The path just looked too steep. This last week, I conquered the path with the help of grandsons going in front and behind me to make sure the bike didn’t get away from me. Going down the path is still a little scary, but it is important enough for me to keep practicing. I love being in their home, participating in their lively discussions, and watching our grandsons grow into phenomenal young men. I laughed when I successfully conquered the path and went back the next day to conquer it again.

This past week, Cliff and I attended a memorial service for a wonderful man of God. It was a celebration of his home going by family and friends. Since we are still learning the world of the power wheelchair, Cliff and I arrived at the church early to scope out the rooms, the ingresses, and the egresses. This is our routine for new venues.

As the lobby filled with people, I moved back toward the wall with my bike. I give fair warning for people to watch their toes since I am not always the best driver. Silly us, as the doors opened, we headed toward the center doors to move into the auditorium with the others, only to find there was no place for me to go and park my bike. We had to back out and go to the side aisle that had been roped off to find the “designated” handicapped space, a space marked off in blue tape.

Please don’t misunderstand. I am not upset about being sent to the designated area. My problem is personal. I have never liked being put in a box. I had to laugh, really, a designated blue box behind a rope. During my life, I have been in charge of many gatherings, so I tried to think of any other way this could have been handled by the church so that people like me (people with box issues) could feel more comfortable. I couldn’t. It would have been far worse had there not been a place for me at all. There was a handicapped space in the front row and one near the back where I chose to sit. The chairs were zip-tied together and couldn’t move, so these were my only two options.

The memorial service was very special. My space in the box did not detract from the specialness of the day. I am learning new things every day about myself and how I handle difficulties and challenges. So far, I still see the humor and the goodness in life. I sometimes get grouchy (Cliff will agree) when I get tired or frustrated, but mostly, I look forward to each new day to see what God brings my way.

–Susan

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