I slipped in the back door and left a dixie cup of liquid pain reliever by the kitchen sink.
Yesterday, for the first time in a long time, my mom was able to swallow all her pills.
Today, she had an angry headache.
Progressive Supranuclear Palsy is a terrible, debilitating disease. To the average person,
My mom’s first symptom, slurring her words, began about nine years ago.
Today she can not speak. She has an incredibly difficult time swallowing. She “eats” smoothies and soups, over the sink, using one hand to hold her jaw closed. The other hand, which has nearly no function, claws plastic IKEA cups and throws the food into her mouth; then she focuses and swallows the best she can.
It is brutally difficult. She is gigantically courageous.
The process is hard and messy—she spills a lot. Remarkably, she has maintained her weight for coming on two years and we have had no bouts on pneumonia.
Pneumonia is our biggest threat.
I take that back. Pneumonia is our second biggest threat; discouragement is the first.
When you are given first an incorrect diagnosis (ALS) then a likely correct diagnosis (A-Typical PSP) that shares one thing in common—a lack of any medical help available—you begin a journey of willingness to try anything. In these last years, we have done yoga, acupuncture, cryotherapy, red light therapy, essential oils, ozone and UV therapy, IV vitamin cocktails, stem cells, crazy patches that supposedly activate your body, a massive list of supplements and CBD Oil.
The fact that I have resorted to CBD oil shows the level of ANYTHINGNESS I am willing to go to. I hate marijuana.
I hate it.
And, yes, I can tell you the difference between CBD and THC. I know the benefits of hemp and the long history of its uses in this country dating back to Mt. Vernon. I know about the endocannabinoid system.
But I still hate marijuana and every attempt to normalize it in society.
I have walked a long road and crossed a bridge on this topic and, as it turns out, I want help for my mom more than I hate all things Cannabis related, so in an attempt to help her conquer the (lack of) sleep beast that is haunting her, I patch her with crazy patches, drop CBD oil under her tongue, massage her swollen hand, put drops in her dry eyes and tuck her in—praying that she might rest. “The patches are just a placebo!” Critics say with rage.
Let me be clear, at this stage in the journey a placebo effect that makes things feel better is welcome 100% of the time. (I was kicked out of that Facebook group.) After a few days of using the patches, she could swallow pills again.
That might not last, but it did happen.
We have not found any miracle cure, and while daily life is not anything anyone would actually choose, most people don’t survive the disease as long as she has. And most people, after this long of a battle, are in wheel
In other online groups of people associated with the disease, I am questioned, “Are you sure your mom has PSP?” Because nine years of symptoms later, she can still drive and walk and think. Something we are doing might be doing something to keep the full measure of the disease away. So I keep pounding on the internet and swiping my Dad’s credit card to find help.
And I keep my head in my Bible, steady in the knowledge that THIS IS THE DAY THE LORD HATH MADE. THE MESSAGE version of the Bible is my best friend as of late. Today I am clinging to His words in Proverbs 1:
These are the wise sayings of Solomon, David’s son. Israel’s king—Written down so we will know how to live well and right, to understand what life means and where it’s going.
I don’t have to understand or even like much of this life. I know where it is going for all who believe, and that is enough for me. I fail regularly at living well and living right—but that is not a surprise to God.
The surprise to me is that EVEN THOUGH GOD KNOWS EVERY SINGLE FAILURE OF MINE, He still loves me. And He loves my mom.
That is enough.
The ENOUGH of this life can weigh. Me. down. Over and over in my prayer journal I have typed the words, “Lord, I need to know that I will be okay in YOU if ________________ happens.” I am learning, slowly, to release the things that scare me most. The words from Psalm 18 encourage to keep going, and to encourage my mom to keep going:
God made my life complete when I placed the pieces before Him. When I got my act together, He gave me a fresh start. Now I’m alert to God’s ways; I don’t take God for granted. Every day I review the ways He works; I try not to miss a trick. I feel put back together.
And THAT is enough.