This post describes, my recovery from the loss of my wife to a degenerative neurological condition called Huntington’s Disease. She was healed of this condition when she went to live with our Heavenly Father at 2:30AM, the 10th of January 2021. You can read the announcement here.
Or if you would like to read our story from the beginning, you can start with: How We Got Here…
As I am writing this, life is moving really fast and getting everything done is becoming a bigger and bigger challenge. Then I had an idea to look for some of my posts written over the past year and a half, and rework/update them. I ran the idea by Jean – and she loved it – so we are going to give it a try.
The procedure is for Jean to go through the posts and identify various ones that she feels are “evergreen” topics. This is the first one. It’s about one of a caregiver’s biggest tasks – being an advocate for their ill loved one. It originally ran January 19th of 2020.
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Last Sunday, I spent a chunk of the afternoon on Messenger talking with my sister — nothing unusual there. What we talked about was the post that went live on the blog that morning. The point of the conversation was the prayer.
Margie was curious about whether I intended it to be purely personal, or would it apply to all my readers. I think that part of the matter might have been my usage of the word “advocate,” which I realize, in retrospect, is a word that is typically used to communicate very specific and formalized responsibilities. Derived from a Latin root that is essentially a translation of the Greek word παράκλητος (paráklētos) the word refers to someone who is called, or summoned, to stand beside you for support – often in a legal sense. For Christians, the most well-known use of this word is when Jesus used it to describe the coming Holy Spirit.
But I want to step back for a moment and think about it from a slightly different perspective. For my starting point, I’ll take a famous quote from the Shakespearean play Twelfth Night:
It struck me that if you replace the words “great” and “greatness” with “advocates” and “advocacy,” the result is a pretty good description of the core of what it means to be an advocate.
“Some are born advocates, …” Most of us have known people who seemingly from the time they were born, realized that their place in the world was to stand by others and speak for them. We typically think of these folks in terms of being social workers, lawyers, or perhaps members of the clergy. But I would assert that there is another side of advocacy. Sometimes words are not enough. Sometimes actions, even strong actions, are required to “stand by” another.
Consequently, advocates are sometimes seen wearing flak jackets under desert brown or blue uniforms. Sometimes, to do their work, advocates have to don green flight suits and prepare to fight a war that is unthinkable, with the goal that it remains unthinkable. Sometimes advocates rush to be the first to respond to a tragedy so they can perhaps snatch some remnant of life from the jaws of death. Advocacy is not just about supportive words…
“…some become advocates, …” Here, we need to consider the Biblical story of the Good Samaritan. We have no idea what was going on inside the Samaritan’s head when he saw the man beaten by thieves and left for dead. Clearly, he could have crossed over to the other side of the road, like the religious men who had come by before him had done, and just kept going.
Instead though, Jesus says that he “took pity on” the man who had been attacked by robbers and so, in that moment, chose to become his advocate. A choice, by the way, that cost him time and money, no doubt disrupted the day he had planned for himself, and could even have put him in added danger as the robbers might have still been in the neighborhood. Moreover, he happily took on the responsibility to see the job through to the end by making arrangements for settling any subsequent debts when he returned: more time, more money, more inconvenience.
“…and some have advocacy thrust upon them.” I want to look at this last situation in a bit more detail because it should feel familiar to anyone who is a caregiver to someone with a chronic disease. I don’t know about you, but nobody ever asked me if I wanted this job. Nobody ever said, “Your wife is going to get this horrible disease. Oh, and by the way, you get to watch her die a little more every day. So, if you could help out, that would be grea‑a‑a‑a‑t.”
The job that gets handed to a caregiver is massive, uncomfortable, long, and so dirty that even Mike Rowe would think twice about taking it on. And it’s certainly not fair that we have to do these kinds of jobs alone or with too little support from families and friends – or even adequate training for what we need to do. Oh, and then there’s the guilt! I have never met a caregiver whose normal mental state wasn’t feeling guilty.
I would assume that we are in agreement that the life of a caregiver largely stinks. So what do we do? The truth is, the sun will come up tomorrow and we will have to do something.
A number of years ago, I went to a seminar where the leader called up to the front someone from the audience and held out two ice cream cones: one vanilla, and one chocolate. He then instructed the person to choose one. The participant got the ice cream they picked and returned to their seat happy. The leader now repeated the exercise with a different volunteer, but this time only held up the one remaining ice cream cone, repeating the same instruction: “Choose one.” The result was a spirited conversation (read: “argument”) about the nature of choosing.
The point of the exercise was to illustrate how people have no problem choosing if they see alternatives, as when they can choose between vanilla and chocolate. However, problems arise when only one flavor is available. We don’t see that as a choice. Rather we devalue it as simply being all that’s left. Consequently, we derive no joy from what we do have – after all, who gets excited about making do with the leftovers? Moreover, we can begin to feel pretty resentful and angry toward those enjoying what we don’t have, or who we imagine are enjoying what we don’t have. I can remember nights driving home from work obsessing about the smiling people in the cars around me and resenting the happy homes that I imagined they were returning to.
In the movie The Passion of the Christ there is a powerful moment when Jesus, beaten and abused, embraces His cross with quivering hands as though it is the most precious possession He has in the world – which of course, it was. At that point, there were no options left available to Him. There was no choice: to “go to the cross” or …
All that was left was the cross, and as an example to us, Jesus chose it, embraced it, and created from it the best possible Good News.
I hope that you see where I’m going with this unfortunately autobiographical tale. As caregivers, we can easily become trapped in a sense of hopelessness that leads us to feel angry and resentful of those around us who are living “normal” lives. That anger and resentment, in turn, bears fruit in the form of a bitterness that convinces us that, in reality, we are the real victims of this disease, not the person dying. And this victimhood is the final link in a vicious loop that feeds on itself, solves nothing, and makes everyone involved in the situation more miserable by making us even more angry and more resentful.
The only way to break out of this death spiral – I call it that because it will kill you – is to choose the situations in our lives in which there are no options (in Biblical terms, “our cross”). When in this way we not only take up our cross, but truly embrace it, we discover that a joyously new and miraculous possibility emerges: the possibility of regaining just a tiny bit of that perfect Eden experience where life wasn’t supposed to be governed by choices between good and evil, right and wrong, or even vanilla and chocolate. We begin to realize the possibility of living our life of service immersed in and infused with the love of God. We can discover that in the midst of this broken, fallen world, God can create for us a holy place where truly, it is all good.
In Christ, Amen ☩
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A prayer for when you’re out of options…
“Blessed are You, Lord God, King of the Universe. It is right that I should at all times and in all circumstances bless You for the bounty of Your love. But today, I especially want to bless You for making my gift of standing up for others into a way for me to experience a foretaste of Heaven. Please give me eyes to see my own calling, and the strength to complete what You have set before me. Amen.”