Something Noticeably Absent at the ALS Clinic

May 1, 2014, by Todd Neva

There was something noticeably absent at the ALS clinic: Kristin crying.

The main reason for that was the news of my breathing. I scored 92% on forced vital capacity. FVC is a measurement of how much air I can expel from my lungs. As my diaphragm weakens, I lose the ability to expel carbon dioxide. Breathing is critical for obvious reasons, but this measurement is important because it determines when intervention is required. Surgery for a feeding tube, for example, requires that my breathing is at least 50%.

At my first ALS clinic, my breathing was 104%. Six months ago it was 90%. Kristin was bracing for 87%, but when I blew a 92%, Kristin smiled.

Before the clinic, last Tuesday, April 22, we had an opportunity to speak at an ALS support group. There were three other couples in attendance. It was difficult to know what to say to them. We’ve spoken to other groups, but the folks at the support group are in the ALS trenches with us, and in some ways have suffered more as their disease progression has been faster. I was cognizant that it was nearly four years to the day of my first appointment at the spine care clinic when the neurologist saw the atrophy in my left arm and ordered an MRI. Four years is a long time to survive with this disease. What do we tell these folks about suffering?

We tell them that it’s okay to grieve.

After an ALS diagnosis, we need to grieve, and not worry about where it’s going to take us. Grief is a process, not just an emotion. Grieving is something that we need to do, something that requires action. One of those actions is that, eventually, we need to gain perspective, that life is out of our control and the only thing we can control is a response.

We tell them that one of the perspectives that can be gained is that we have the blessing of time.

Reading from our book Heavy, I said, “Every one of us will die, some much sooner than others, and some more tragically than others. Some will have their lives snatched from them, leaving their family shocked. I, however, am on notice. I have time.”

Kristin told them that the only thing that we can control is our response.

Again, reading from our book, she said, “We can’t control this disease, but we can control our response to it. Todd has chosen joy instead of anger and bitterness, and that makes it easier for me. If I am stressed, melting down and falling apart, that will be the reaction my kids will see, and they will follow my lead. We need to grieve, but we also need to be thankful for today’s joys.”

Kristin encouraged them to keep seeking God, even in anger and sadness.

“He’s God. He can handle our emotions. He understands our pain. Jesus was in emotional anguish when he went to the cross for us.” And she said, “As ALS keeps on robbing Todd of functionality, I keep crying out to God, sometimes in tears, sometimes in anger. He doesn’t always erase our pain, but He is with us.”

And finally, I talked about having purpose, how there is significance in a disabled life.

I read to them from Heavy, “I wonder about the future when I will spend most of my time sitting in a chair. As I wonder how I can continue to be useful, I look to others. In Houghton, Michigan, there is a college professor with ALS who is doing research on the genetics of the disease. Joel Cutler was a Canadian with ALS. He had a website about his thoughts and experiences. He was an encouragement to other PALS and caregivers. He was useful. Another man with ALS, Andy, was, as his wife described, ‘a constant presence in his children’s lives.’ Isn’t that enough?”

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