Posted 7-5-19
I hope each of you had a happy and healthy (and safe!!!) July 4th! I am a pretty patriotic fellow and I love the holiday. 🙂 We watched our local fireworks show with patriotic joy even with the hummingbird-sized mosquitoes circling us like little zinging blood-vultures. A good time was had by all!
I would like to start this thing with a link, and the piece sorta depends on it opening, so we will hope this link stays accurate. I figure the other content sites have picked up on this piece too, so take a peak at this link and we shall proceed. Here is the backstory and more detail as well. It is the fascinating story of an artist’s journey using his creative medium through having Alzheimer’s disease.
Similarly, the amazing book and corresponding movie Flowers for Algernon by Daniel Keyes also comes to mind as I think through today’s discussion. It’s about a miracle drug to help a man with a profound learning disability learn, then ultimately become a genius, then sadly go back “downhill” and is not about dementia…directly.
The topic: “Going downhill”.
I just want us to chat about the phrase “Going Downhill” or its good buddy “It is all downhill from here“. People may toss it around as we age or may whisper it about Alzheimer’s or other terminal patients or that they use when times are doing better after a hard time (i.e. a hill they climbed and are coasting down). First of all, just think about the phrase at face value. Does it mean things are getting/will soon get easier? (“Whew…made it over that hill…that trial…and things are cruising downhill!” –or– “She made it through her battery of chemotherapy. These pills and followup visits mean things are a downhill ride from here! Yippee!!!”) OR…could it also mean that things are/will be getting worse? (“Man, she is really going downhill since her mild cognitive impairment diagnosis!”–or–“Mark’s health/appearance sure seems to be going downhill lately! He has really let himself go!”). So which is it, fellow Digital Cornbread learner?… and, regardless, is it “all downhill from here”???
This is one reason why the (American) English language is so challenging. Context, context, context! I don’t have a great answer from a linguistic standpoint for what drug the coiner of this phrase was puffing on, but I can offer you some hope, I hope.
Context. My mom is going downhill these days by both definitions. She is, minus a miracle going to die within the next year (note: a very possible and easy miracle for our Creator) . Hospice qualifications allocate more of a six-month window for mom, but they reserve the right to renew the provision another six-month or two or three should the downhill level off.
Q: So is she, or is she not, going downhill?
A: Yup.
First the negative: Mom’s health is declining. She can no longer walk. Her speech is very rough. She only eats ground up food. She has a new tremor sometimes that gives pause. She has had some sores that could someday go septic if we miss seeing them. She only occasionally remembers my step-dad’s name or my sister’s name. She has fevers that come and go. Her piano skills, once amazing for a largely self-taught person, have declined such that she refuses to try except every once in a while and she typically fails when she starts. And oh, the falls! Sigh… By objective reference, she is really going “downhill”.
The positive: Mom’s stress level is much, much better. She smiles a lot. She still eats well. She is always happy to see me, so she knows I am in her group. She no longer tries to escape the memory unit and said one day that she liked it there (in so many words). Several odd, unmentionable behaviors are gone. Hallucinations are nearly all gone. No more fighting baths or meds! No more telling me that she would rather be dead. “Whew! Her time at the memory unit is downhill from here.”
So what can be learned from the diminishing abilities version of going downhill, whether it be the artist’s worsening skills, Charlie’s ride from having a learning disability to a genius and back to having the learning disability, or from mom’s lost abilities as listed in the negative column above? Here is my take:
- In the case of the above link’s artist (William Utermohlen), his focus changed as he descended down the hill. French psychoanalyst, Dr. Patrice Polini reviewed the painter’s work and concluded many things including that he “concentrates on strong and simple sensorial impressions : the sound of voices, the taste of coffee, wine, and cigarettes, the feelings of warmth and cold, again in an attempt to fix his perceptions before they slip away”. He seemed to focus more on his wife and concrete, spatial things than he did himself. His art and his life was simpler, yet beautiful. He focused on what he cared about. We should too.
- In the case of the fictional Flowers for Algernon: Charlie, when the medicine and the science behind it was explained to him as he became a super-genius, he discovered that its methodology had a flaw that would ultimately reverse itself, and do so sharply. In the process, Charlie’s eyes were opened to all sorts of realities that he never would have considered and the experience was often more negative than positive. While this is not a story about dementia, it does show that cognitive ability, or super-ability, doesn’t always bring the joy that one would expect. Complex isn’t always as beautiful as simple.
- In the case of mom, while she cannot do many of the things that used to bring her joy, when is still quite happy. She isn’t stressed out by the many things that used to stress her out, and she lives in the simple world now. That is a win.
- (I am going to cheat and add a new character in this discussion too. I have a close relative that was lead-poisoned when he was young and lives a very simple life now with very below average cognitive ability. He rides a bike to his dish-washing job, every single day, and does it well and with a smile. His primary cares are much different than our’s are. In short, life is simple and beautiful in his world.)
- Conclusion: When times are hard and seem to be going downhill, perhaps clinging to the simple things is our God-given plan. Biblically in the official Mark Applegate translation: “keeping the main thing the main thing” is really what we should be about while we live here awaiting eternity anyway, isn’t it? Keep it simple!
What can be learned about the other definition of “going downhill from here” may be a bit happier. If “it’s all (going) downhill from” here means the hard part is winding down, remember:
- There are still countless wonderful things about mom and the Sweet 17 in their current situation. They smile, they sing, and they sometimes joke. Stripping their memories didn’t strip their humanity nor their sweetness, just their ability to recall and many of their temporal abilities. Their terrible circumstance also hasn’t stripped away their past.
- For a Christian, in our faith, hardships are growing opportunities that bring us closer to Christ and make us more like Him. Mom has a peace and joy about her that is confusing to many, but not to me. She knows she will go to heaven someday and, despite her circumstances being bad, smiles. It is still super hard for her…but it is softened by her knowing that she is loved.
- Speaking of that, we have heaven to look forward to. The hardships may seem terrible and distracting at the time but the will also serve as a reminiscing backdrop (an old versus new selfie station?) someday against which to compare the beauty of an eternity without them in Heaven.
- The intense stress of worrying about mom escaping the memory unit, having a medicine issue that cause hardship, trying to fight off a nurse who was trying to bathe her is gone. While it may seem like her ultimate death will be the worst part, as a believer I see that as more of a dementia cocoon release from this mess into something beautiful. Death’s only sting left will be the sadness of not having her with us, and that will only be until we meet her again some sweet day.
- The road isn’t a straight path, but a jagged one. Don’t forget to be thankful for the easy and expect the not easy…and rest in Him in the both.
So I conclude this odd little rabbit trail with this: regardless whether “all downhill from here” seems happy or something to dread, it is inevitable. We should embrace and glory in the good times and we should be thankful and learn from the less good ones. We should love people, advocate for those who can’t advocate for themselves and serve people like we are on the downhill slide regardless which side of the hill we live. We must love at the simplest level, without lofty expectations of returned love, based on who our loved ones are now and were before and not based on only what they can do for us today.
So, off we go! Weeeeeeee!
#EndALZ
Beautifully written, Mark.
Thank you for sharing. May we all be reminded to live and love at the simplest level one day at a time where God has placed us.