Mounting With Wings

Recently I happened across a comment on a Facebook support group by a lady with ALS who basically said, "I don't mean to be blunt, but I'm not getting a feeding tube. When I get to the point that I'm confined to a wheelchair that's when I'll be done." I don't know her situation and know it's a personal choice, but that comment made me feel so sad.  I think of all the many joys and blessings I would've missed out on if I had given up 2 1/2 years ago when I got my feeding tube!  When I look back through the pictures and memories since ALS I'm so  thankful for each one, and each day of life. Of course the greatest recent blessing has been being here for my sweet grandson's birth last September and to enjoy each smile and achievement. What a tremendous gift!  It also brings tears to my eyes knowing that I wouldn't be here without my loving family and their faithful care for me!  The fact that they still want me here and surround me with

One of my favorite places to unwind and enjoy nature is by Lake Harriet a small lake here on the edge of Ouachita Hills campus. I used to love walking around it or hanging my hammock beside it. I don't remember when I was able to walk around it last, probably a couple years ago. I sure miss it.  The other day I was just lying here trying to picture every detail I remember of walking around the lake. What it felt like and looked like… the sun shimmering off the water, the blue, cloudless sky, the gentle wind blowing my hair, beautiful yellow wildflowers by its bank, our energetic dog racing on ahead, walking up the little hill to see the picturesque spot where our son-in-law proposed to our daughter… I didn't know the last time I walked around it would more than likely be the last time.  Similarly, I remember the last time I drove my electric chair down the tree lined dirt road to the river near our house. It was a gorgeous Spring day and I was with our daughter Hannah. I wish I

"There's a 90% chance you have ALS." When I heard those shocking words from my neurologist almost 4 years ago, tears immediately sprang to my eyes. I didn't know many details about the disease, other than some foggy descriptions from nursing school and a few google searches, but I knew it wasn't good. The doctor knew it too. She also left the room in tears.   The grim textbook statistics about ALS share that the average life expectancy is 3 to 5 years after diagnosis, with no cure and is always fatal. However, I personally know several who have reversed ALS and are walking and talking again, years after diagnosis. Miracles still happen. Textbooks aren't always correct.  Also, the statistics are for those without a ventilator as many don't choose to go that route. One doctor stated that with a ventilator there's no reason why an ALS patient couldn't have a normal life expectancy. Signs are pointing to Jesus soon return.  But if time lasts, with the

I recently listened to "The Pineapple Story"   by missionary, Otto Koning.     He humorously narrates the story of planting pineapples in Papua New Guinea where he was working with an uncivilized, indigenous group of heathens who kept stealing his pineapples (and a lot of other things) no matter what he did to try and stop them. Eventually he felt God lead him to surrender His right to ownership of his pineapple garden. This brought peace as he stopped worrying about the outcome. Later he surrendered his right to his family, his reputation and many other things.  The Pineapple Story  - click the link to listen to the whole story.  This story led me to a deeper level of surrendering the supposed  "rights"   to several things in my own life. Like in pineapple story I've had to give up rights to many things in my life:  Dignity/Pride - I've always taken pride in how I look and dress (maybe too much so at times). Nowadays I never even look in the mirror. There’s

I only ever remember seeing one man with ALS before my own diagnosis 3 1/2 years ago. My kids were selling Christian books with a group in Kentucky  and came to a house where the man had ALS. I was shuttling books and kids around and remember seeing the man sitting in an electric wheelchair in his carport. I'm not sure why that haunting image stuck in my mind but it did. I never dreamed that one day I would have this dreaded disease and be sitting in a similar wheelchair. So what does a day with ALS look like? It's different for everyone, but here's a few glimpses into a typical day in the Powell home. I wake up between 5 and 6 am and immediately have prayer, praising God for another day of life. Kevin gets my water and then begins my involved morning routine while we listen to some scripture or a devotional reading. For the last almost year my dear husband has chosen to be the one to give me my bed baths and do my morning toileting routine to serve me and to help preserve

My body definitely isn't cooperating, but I'm still totally "me" on the inside; desperately wishing I could communicate more easily what's on the inside to the world outside. One of my cousins recently texted me: "Shelly...you have a perfectly functional and brilliant mind with all the normal wishes, interests and desires inside a body inflicting absolute cruelty. But, in your faith, you find the ability to rest." I might argue against the "brilliant mind" part (lol) but the rest of what he said holds true.  I realize now that when I wrote a blog about "Communication Gaps" in July of 2021 I was just in the "minor leagues" of difficulty with communication, now it seems I'm loosing games daily in the "major leagues" as communicating even the basic things is sometimes so difficult!  My speech was getting especially hard to understand before I got my trach in May of 2022,  but at least I could make a noise! With a