Sunday was hard.

There is hard – I couldn’t find my keys, I was late to work, the kids are bickering…

And there is hard – I’m tired, I don’t want this for my life, I am drowning. Sunday was that kind of hard.

I hadn’t written for two years on the blog. I had inwardly vowed the blog, my life, would not become about ALS. It was a ludicrous promise that couldn’t be kept. In the gap I wrote, writing the means of catharsis, a working through of my diagnosis.

I belong to two ALS support groups on Facebook and while I gain much knowledge from them, the price is steep. I despise dependency. ALS shines a light on my worst character flaws, polishes them, shows them off. The hardest posts to read aren’t the ones written by ALS patients. The most painful posts come from caregivers, “I’m so exhausted,” and, “I don’t know how I’ll get through this.” “I can’t. I can’t do this, it’s too hard to parent kids and be a caregiver.” “I’m not enough.”

My heart breaks.

For them, for me, for my kids, maybe mostly for my husband who works so hard to “be enough,” to spin all the plates, be a great dad, be a great husband, take care of us, the house, himself…

That Sunday, the post was written by a wife who said that she felt their relationship had changed, that they were no longer husband and wife, but patient and caregiver. I twisted inside, cried out against the turn their relationship had taken. Her phrasing kept running through my mind and I couldn’t shake it. Church ended, the youngest kids bickered. We went home and he fixed something on our daughter’s car and the littlest ones clamored for his attention and I felt his overwhelm. I suggested we go to the park and I stared out the window on the drive. I changed the station from praise to some mindless, empty country song. And everything in me railed against our relationship changing, morphing, twisting from something I loved into something disdainful to me – patient & caregiver.

He took them on the paddleboats and I took a “walk” in my chair. A message came from a friend, “Thinking of you & praying for you…” I felt the tension, my inability to praise Him, the wall I’d been steadily building from bricks of anger, frustration, helplessness, begin to crumble.

I know God has said, “Never will I leave you; Never will I forsake you.” -Hebrews 13:5 And this is said in terms of choosing contentment. How? How do you find contentment when your portion is suffering? When you have little hope that any successive day will ever be better than the last?
So we say with confidence, “The Lord is my helper; I will not be afraid. What can mere mortals do to me?” But to stay mindful of that is incredibly difficult.

This is a middle chapter.

At the time that the wife wrote that, I am sure she sincerely meant it. I suspect she was aching for her relationship to be what it had been, but it’s important to recognize our relationships are always changing, never staying the same. This is a season where caretaking forces its way to the center of the stage. It does not make her less the wife nor him less the husband. This season is new to them, unfamiliar, and doesn’t feel comfortable.

Neither does a season of distress and pain make God less, nor me less His daughter. It’s just the relationship is changing and unfamiliar and I’m learning something new and it’s uncomfortable. I yearn for what was. It is an easy thing to praise and be joyful when the sun is shining.

Christian and Hopeful are prisoners of the giant, Despair in Doubting Castle. Not only were they beaten and in pain, they were locked in the dungeon and could see no way out. “Brother, what shall we do? The life that we now live is miserable. For my part, I know not whether it is best to live thus, or to die out of hand.” (Pilgrim’s Progress)

A study in 2018 stated that 56% of ALS patients consider patient-assisted suicide. I’m certain that number is 44% short of the truth. I think some probably discard it immediately. But as you lose every physical ability – the ability to be independent, dress yourself, bathe yourself, go to the bathroom yourself… it’s nearly impossible to not think, “I don’t want to die like this. I don’t want to live like this.” As of 2002 1 in 5 ALS patients chose euthanasia. I’m sure the number is higher now. There is scarcely a month where I don’t read a post that another PALS has chosen to actively end their lives. Unknown to most, that decision is perhaps doubly difficult for people with ALS. In the United States, you must be able to administer your own meds. In effect, you must choose to end your life while you are still able to do so, while you still possess the ability.

I believe part and parcel of our independent culture and of our society’s current ultimate goal of “happiness” rails against death and disease as though it’s abnormal and to be utterly despised. I hear often, “It sucks getting old.” Consider the alternative.

I can’t be deeply entrenched in the argument or controversy. But the ultimate goal for the Christ follower cannot be to die well, but to live well.

Only this I know – He has given me joy where there (reasonably) should not have been joy. He has shown mercy where, I reasoned, there ought be no mercy. Who am I to claim that there is no gain, no value, nothing to be learned in sickness and in death?
Proverbs 3:5 – Trust in the Lord with all your heart and lean not on your own understanding.
“For my thoughts are not your thoughts, neither are your ways my ways,” declares the LORD. “As the heavens are higher than the earth, so are my ways.” Isaiah 55:8-9

There is a woman I love who is a hospice nurse who has shared with me that, in death, the veil between life and death is so thin, that there is much there that is holy. We speak of this so little. We comfort the dying with these truths so little. In a society that prizes lightness and knowing all at a fingertip/ Google search, perhaps instead we need to dwell on weightier things as God’s chosen people and extoll upon the mysteries of God.