I was recently brought up short. Very short.
Can I just tell you what has annoyed me in the last few days? Top 10.
• Sweating on my last trip to town because our vehicle is having AC issues and it was 90 degrees.
• Becoming aware during the night that there was a mouse partying in our bathroom trash can.
• Negotiating with cheap so-and-so scotch tape that made me want to say bad words.
• Ordering a less-than-stellar DQ-type Blizzard (not purchased locally) that I didn’t finish.
• Chipping a fake nail and having to get it fixed.
• Going for a run and feeling slow.
• Needing to cancel a hair appt the day before leaving for a recent trip due to being unexpectedly hospitalized overnight (I’m fine, thanks tho’).
• Dealing with insurance that is going to require several phone calls.
• Haying taking forever … let’s just be done already.
• Waking up to the mundane-ness of another day where I will pretty much do the same things today that I did yesterday.
Yep, those things frustrated and annoyed me.
Until I read a Facebook post last night.
More specifically, Gary Stauffer’s post.
Gary, our Holt County Extension agent and friend for many years, is smack in the middle of unimaginable hard. We are not talking annoyance or inconvenience. We are talking hard … as in ALS (Lou Gehrig’s) hard. With his permission, I am sharing a link to his post below.
Though this, of course, was not Gary‘s intention (he is too kind for that), his post brought me up short, and I needed it. How I needed it. I am determined to get some perspective, be grateful, stop whining, learn a lesson and learn it well, because I was reminded that …
… it is an inestimable privilege to get behind the wheel one more time, set the mouse trap, deal with life’s scotch tape, savor the taste of anything at all, drink a sip, break a nail working with one’s hands, walk/run just for sheer pleasure, chat with a friend, experience a medical emergency that only results in a trivial reschedule, enjoy the weather patterns and get up in the morning only to repeat all the chores one did yesterday.
Thank you, Gary, for being real and sharing your journey so candidly with all of us. We can only hope and pray that if we are ever asked to walk a similar path, we will do it with as much grace, dignity, strength and faith as you.
Lastly, please take to heart that your limitations don’t define you. No, they just happen to be what the package of you is wrapped up in right now. Inside that wrapping, you are the same person you have always been … THAT is what defines you and this is what we all still see … a gentleman with a heart of gold, an interest in and love for people, the gift of encouragement, a sense of humor, a determination to make the best of things, a twinkle in your eye and an unwavering trust in God.
Thank you, sir, for your example and for your friendship to our family. The prayers of many support you.
My ALS story began in the summer of 2016. I was an Extension Educator, busy giving talks to farmers and ranchers about how to be profitable in the agricultural industry and working with 4-H and youth kids. My schedule was hectic. I traveled a lot and had lots of irons in the fire with many other activities. I started slurring my speech that summer, more when I was tired. One suggestion was that I had had a mild stroke. So we started checking that out. Lots of tests later, nothing. No sign of stroke, fit as a fiddle. So it was onto more tests, this time to a Neurologist in Norfolk. Got the “electric fence zapper” test and the microphone in the muscle test. I then was referred to Omaha. After two more times of the “zapper” test, the diagnosis came in, ALS. That was not what I wanted to hear. I had had two friends die from ALS, and knew what a devastating disease it was. I was informed that it could start these ways: about 60% start with muscle function loss, with a 3-5 year expected life span, about 30% start in the mouth and throat area, with a 2-3 year expected life span, and about 10% start directly with the respiratory tract with a six month to 1 year life expectancy. My type was the second. When your tongue doesn’t work, you lose the ability to talk, to swallow, to eat and to drink. I began to choke on food and couldn’t even drink water without choking. You lose your ability to suck, too, so no more straws. That led to the insertion of a stomach feeding tube in December of 2017. No more prime rib, corn on the cob, pecan pie or ice cream! Now, just boring bottles of formula. You become a real cheap date! The advantages: no grocery shopping, no cooking, no dishes, and you always know what you are going to have for the next meal.
But now comes the real challenge. Your muscles quit working. My neck muscles were the first to be affected, and have progressed to where I can no longer hold my head up without a neck brace. ALS needs to hire a farmer handyman to build a brace that’s for the patients. The ones currently out there are for broken necks, but their muscles still work. You don’t realize how much your fat head weighs until the entire weight of your head rests on your chin on a bar! The next thing you’re dealing with is a raw chin and a sore neck. Your chiropractor becomes one of your best friends! Now I’m losing muscle function in my limbs, mostly on the left side. I have a bum left arm and half bum left leg. My left toes drop and I can stub my toe on the carpet easily. That hurts! Try washing your right armpit with no left arm. Or, button your jeans with one hand.
I now am using a walker, and will soon be in a wheelchair. My biggest challenge has been saliva production. When you produce two liters of saliva a day, and can’t swallow normally, you can choke and drown in your own saliva. Nothing so far has been fully effective at alleviating that. That makes it difficult to sleep. You can’t recline back in a chair without choking. So if you see me and my eyes are red and bloodshot, I have not been on an all night bender. It’s from lack of sleep!
I have always been able to communicate with the help of the “Boogie Boards” from ALS in the Heartland and ALS Association, and an IPad with a text to speech application. As I lose dexterity in my hands, I have gone to a dry erase white board. I blab so much I wear the Boogie Boards out quickly, and now buy dry erase markers by the truckload! ALS has provided a lift chair, a walker chair, a regular wheelchair and an electric wheelchair. I had a ramp built into my house. If you had to buy all that equipment, it would be a major expense.
It would be nice to get more research done on ALS, as we don’t know yet what causes it and there is no cure. We are looking at a very cruel debilitating disease, with nearly 100% mortality. There are no survivors to talk to. You learn to depend on your family and your friends for everything.
Without a belief in God, and that there is a much better place waiting, this would be hard to go through. We constantly want to ask God “Why?, knowing that there will be no answer here on earth. All I can figure out is that God has cattle out somewhere in Heaven, and He needs a good cowboy who can rope a little, has good horses, a pick up and trailer.
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