#17 My ALS Journey—The Changing of the Chairs

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This post shows the wide range of emotions my mother experienced throughout her ALS journey. Every day for ALS patients brings new changes, losses, and unexpected challenges. We talked a lot about grief and grieving well. My mom was steadfast in her desire to have the best attitude possible throughout, primarily because she believed that God had a plan for her life and that she could rest in it. She did this in three ways.

The first way she grieved well was through practice. She would say she practiced trusting in God beginning at the age of 14 when she became a Christian. As such, she believed any gains or losses came from Him. Her daily real-life losses allowed her to learn to deal with grief Biblically. Secondly, she fully believed that God was in control of everything, all-knowing, all-powerful, and loving toward His children. She fully believed that God could heal her if He chose. She was content to know He would not. Third, she practiced practical adjustments to the realities of her life, and she was committed to growing. The Bible tells us to grow in Christ. Situations of grief can be opportunities for expansive growth if we are committed to an attitude of adjustment.

I think you can see all these elements take place in this blog as she embraces the change of a new wheelchair. She certainly had her feelings about the situation but continued to engage in the responsibilities God had given her and did not let the emotions of grief distract her from serving Him well.

–Tricia

Conundrum = Anything that puzzles

My breath was sucked away today when the new multifunctional, highly technical, very supportive power wheelchair was delivered to my home, a chair that I have looked forward to and wanted and then immediately wanted out of my house– hence the conundrum. How can you both love and hate something good for you? The transition from cane to walker and walker to go-chair in six months was difficult, but in comparison to transitioning to “The Chair,” it was nothing.

Since first being diagnosed with ALS I knew the day would come when I would need to have a power wheelchair. I have been using a Go Chair for the past year, which has been a blessing, but I was looking forward to a chair with better back support and more comfortable seating. Mentally, I didn’t understand completely what that would look, feel, or be like.

For this last month, I have been looking forward to the changing of the chairs. Wednesday was the day. Brian from Premier Medical showed up at my door with my new red and black wheelchair. I was aghast. It looked like a power wheelchair that was built for a disabled person, not for someone who loves to get out and about. Surely this “huge” chair couldn’t be for me. It was, it is, I am.

Often, I have told people I love denial. It has often been my best protective friend, but reality took my breath. I spent Thursday at home absorbing, again, my reality. Sometimes it is just plain hard. By Thursday evening, after I had shed a few tears and had a few short pity parties, I did what my habit has been and asked myself, “Do I want to stay in the house and feel sorry for myself or keep on going?” The right answer is to keep on going. Reality works a little slower.

Accepting the size and function of the chair is only part of the challenge. The other part of the problem is attempting not to completely dent, scrape, tear, mar, or destroy the walls and cabinets in my home as I learn how to drive this tank. Pray for me. Well, maybe for Cliff, as he sees me self-destruct.

Tomorrow will be better. I have practiced driving, my tension headache is slightly diminished, and I will not die. I can get into my garden with minimal effort because of the power chair and my two new ramps, which makes my heart glad. My biggest concern, given my poor driving record, is crowded restaurants. Eating out is our social life. One option is to go to restaurants with poor food and poor service, then I won’t have to worry about crowds.

Today is Friday, things are looking a little better. This morning, we went to breakfast with my dad, sister, and friend Kenny, at a restaurant with semi-good quality and decent service, no waiting for a table. There were a couple of driving challenges for me, but we survived. The thought does cross my mind to retreat to my bed and give up, but I am afraid I will miss the party. We have plans to go to dinner with good friends tonight. I hope I don’t destroy the place with my driving or run over very many people. I wish them safety.

“For I know the plans I have for you,” declares The Lord …Jeremiah 29:11

–Susan

backyard

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