Mounting With Wings

"Does she really want to live in her present totally paralyzed situation?"  A family member said that several people have asked that question when asking about me.  ALS is an unrelenting, tortuous, terrible disease. I can feel everything, but can't move anything except a few muscles on my face. I definitely have hard moments and days when I'm discouraged and I wonder if I can go on living in a body that doesn't work. But to help you understand my response to the question above I'll describe two different scenarios or contrasts in my world with ALS.  1) Recently we invited guests for lunch and Kevin came to get me up in my wheelchair. Simple.. Right? Not! He has to fully support me when he swings my feet around, sits me on the side of the bed and lifts me around to the chair. Sometimes when getting me up everything feels off and uncomfortable probably because I have no muscle tone and my skin is looser.  For example, the skin on my back may be stretched up at a...

It's been awhile since I published my last blog. I'm still here, not much has changed. Things are going well overall although we've been battling a bit of an infection around my trach stoma. Every day has many hard moments, but many joys too. I have much to be thankful for.  I've been trying to think what to write about in my next blog,  but my mind seems blank for good ideas. I've already shared about many of the things I deal with from day to day.  What should I say that would be new and fresh? Since I feel in a bit of dull spot, like my proverbial creative writing juices have temporarily dried up, perhaps I'll just share a somewhat recent journal entry.  Journal entry: Dear Jesus help me!  You were so very close to me yesterday!  I was so inspired by a couple YouTube sermons by Carole Ward. I had such a rich, deep prayer time. I talked to you more in the wakeful moments last night and again this morning. Praise was on my lips and Your peace in my heart. ...

  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...