Mounting With Wings

  Lord, I Need a Break!  (journal entry, turned blog) Oh Lord, I am in desperate need of some hammock time. Before ALS, when the stress of life started to overwhelm me, I'd grab my backpack, which had my hammock, Bible and journal, and head for Lake Harriet or my special spot in the woods.  Time spent there unwinding and communing with You would always rejuvenate me.  Now I don't have that option. Because of the constancy of my needs I rarely even have alone time. I'm feeling stuck, helpless, sorry for myself, probably mixed with a good dose of selfishness.   My dear husband and family does such an awesome job caring for me. They work around the clock to help me and are often at the border of burnout. I'm truly thankful when they have time away to get a break and do something different. I know they desperately need those times away. But when do I get my break? Everyone else has a break about every day. When do I get a break from me and the affects of ALS?  ...

Our daughter and son-in-law recently took some pictures of Kevin and me for our 35th anniversary. They have a nice camera and did a great job, but when they sent a few pictures to preview I texted back: "Thanks for taking the pictures. I have to say it's a bit hard to see how much my weak, lopsided smile and face have changed from what they used to be like...But it may be par for the course now. Oh well, we still have each other." The sad picture of a medically challenged, graying, middle age lady looks strangely unfamiliar. Not only have my lip muscles weakened causing the odd, lopsided smile, the inability to hold up my head contributes to an odd scrunched look in my cheeks and chin. There's a big gap between my two front teeth from constant pressure from my tongue. I suffer many indignities, but the most humiliating for me is the incessant drooling. In fact, when we're alone at home I often just bite on a folded washcloth stuffed in my mouth to get a little rel...

A few nights ago I found myself in a scary situation. I woke up around 11:45 feeling sore and achy, desperate to be moved. Awakening Kevin with my eye-gaze computer, I requested him to turn my head and make a few adjustments and then put the computer back to "sleep" (I have the ability with my eye-gaze computer to turn the screen on or off by looking down then back up to the screen). A few moments later I felt cold and attempted to turn on the eye-gaze again to ask Kevin to pull up my blanket. It came on, but somehow the infrared camera froze and it wouldn't recognize my eye movements.  I suddenly found myself stuck in one of my worst fears.  We have a back up alarm called a "twitch switch" to hopefully help me out of predicaments like this. It's a small unit with a sensor that is taped to my forehead and is supposed to sound an alarm if I raise my eyebrows. However, we've been having significant challenges with it.  The "glitch switch”, as we call ...

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 ...

"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 ...