After more than five years of living with ALS, my mother peacefully passed away August 1, just four days before her 64th birthday.
Symptoms of ALS begin and progress in different ways for different people. Some lose coordination or find themselves tripping over their feet more often, and for inexplicable reasons. Others become weak on one side of their body such as their hip or left hand.
My mom experienced all of these things as the disease progressed. Her left side (arm, hand and leg) became weaker and slower than her right (though her right side soon caught up). She fell a few times as well, even breaking a couple of ribs (do you know how hard it is to cough when your ribs are broken and you are losing control of your diaphragm?). Amazingly, Gigi was able to walk with assistance some 4 years into her diagnosis, but the day eventually came that she would remain in the bed until her death.
But long before these physical limitations, my mom lost something far more powerful than her strength, balance and mobility: she lost her voice.
Just weeks before her official diagnosis, I had lovingly joked with my brother that I had apparently talked to mom on the phone when she’d had too much wine … she sounded drunk! Or at least dehydrated.
But she was neither.
Rather, her tongue had a tremor, and she could not control her speech. So her voice was really the first thing to go as the disease progressed.
Can you imagine how challenging it is to converse with someone who can’t contribute to the conversation in the same way everyone else does? I can remember trying not to talk slower, as I was initially tempted to believe that her inability to talk somehow inhibited her ability to listen. But pausing … waiting … leaning in as she attempted to contribute … ugh, so challenging to be respectful and not patronizing.
And can you imagine how maddening it was for her to have a fully active and sharp mind (and OH what a wit she had!) that fully engaged in the conversation mentally, but that could not physically produce speech to reflect her mind? It must have been maddening at times, if not all the time.
A lot of the stories and experiences we’ve shared about mom over the last several days have largely been things that she’s said. I never heard mom’s voice more loudly or clearly than the time we lost my brother, Michael. It was the just three of us in the house and we are all off doing on our own thing by ourselves, and mom had a moment where she realized she didn’t know where we were or what we were doing. She found me pretty quickly, but we couldn’t find Michael. Never did I hear mom scream as loudly and as frequently as she did Michael’s name. Indoors and outdoors … even down college street for one block in both directions … she yelled his name. We came back in panicking and began searching different crevices and such in the house. And I found him hiding from us in a guest bedroom closet. He was playing hide and seek. You know that feeling of relief and anger you feel as a parent toward a child?
More recently, soon after her diagnosis, I went on a European cruise with her, my wife, my brother, and mom’s sister. On the flight back, the gentleman (I use the term loosely) sitting behind her was SO tall that his knees rammed into the back of mom’s chair and forced her to sit at an uncomfortable angle. After multiple passive-aggressive attempts to shove her seat back and displace his knees, my mother finally mustered up the strength to speak her mind with her quivering tongue: “I AM ALL OUT OF NICE!” she said.
We use that phrase a lot in our house.
But the voice … we forget how much power and influence is in the voice.
- When God created, He used his voice.
- When God wanted water for his people to come out of the rock, he commanded Moses to use his voice.
- One of the most important means by which God desires to be worshiped is with my voice.
- When Zechariah did not believe the angel telling him about Jesus, he lost his voice.
- When John describes the activity of believers in Heaven in the book of Revelation, there’s no mention of pets or endless leisure activities, but there are numerous references to God’s people singing and chanting … worshipping God with their voices.
Because there is so much power and influence and identity wrapped up in our voices, to lose one’s voice is a true affliction.
- I had vocal cord nodules as a pre-teen and the doctor gave me a pill and a prescription to not talk for two weeks. It doesn’t take long for people to ignore you or forget about you when you can’t talk with them. I wonder if Mom ever felt ignored, or how many friends forgot about her?
- I had fatigue in my vocal box a few years ago due to not taking care of my voice in preaching, and again was prescribed silence for two weeks. What is a PREACHER supposed to do without a voice? I wonder if mom struggled with her identity or purpose when she lost her voice?
Do you understand better just how powerful our voices are and just how close they are to our identity? When we lose them, it’s a true affliction. iPads and emails help … but there is no true substitute for our voice. To lose your voice is to lose a big part of who you are.
I don’t pretend to know why mom lost her voice and suffered a myriad of other thing she did in this disease, but one passage that I’ve turned to time and again in thinking about affliction is John 9.
Consider John 9.
As he passed by, he saw a man blind from birth. 2 And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?”
Their presumption may seem odd, but there are biblical examples of God sending affliction due to the specific person or their parents (the death of David and Bathsheba’s son, for example). But the man was not born blind because of his sin or the sin of his parents.
3 “Neither this man nor his parents sinned,” Jesus answered. “This came about so that God’s works might be displayed in him.”
The reason this man was born blind had everything to do with sin in general, nothing to do with sin in particular, and everything to do with God’s sovereign plan for him. This man was born blind so that he and those who would see and read of this story would know the glory of God!
Can you imagine how the blind man must have felt in this moment … learning that his blindness was not related to any particular sin, but was granted to him by God in order that people might see His glory? I’m wondering … could I be OK with affliction if I knew it was for God’s glory?
The answer must be “Yes” … and in so being, there are three things we can do with our affliction.
First, we must believe that our affliction is in God’s design in some way. As I once heard John Piper say, it will not do to say that God only uses our pain but does not design it. Jesus makes that very clear here. God doesn’t plan the end and not the means. This man’s blindness is designed. Satan is real and causes many pleasures and pains. But he is not ultimate. So today, this passage calls upon us to look at affliction and trust God’s wisdom in design.
Second, we must use our affliction to witness to the Gospel. Because any affliction is an opportunity to trust God and His infinite wisdom with our life, it’s an opportunity to trust Him with our reputation as His follower. Christians are never anywhere by divine accident. There are reasons for why we wind up where we do.
Finally, also echoing Piper, we can grieve like we have hope. Even if affliction leads to death, there is temporary loss for the believer who dies—loss of body, and loss of loved ones here, and loss of earthly ministry. But the grief is different—it is permeated with hope.
Mom did all of these things with ALS. She believed God was in it. She used it to serve others, and she didn’t live with this disease like she didn’t have any hope. I’ll share just one example.
The Gleason Foundation gave mom an eye-gazing computer system that allowed her to stare at words and phrases on a screen. The computer would then speak her constructed phrases and sentences. Ironically, she worked with a speech therapist to learn the system, and her therapist came to the funeral in FL. She explained to me that one of the phrases she was trained to use in working with patients was, “Since my diagnosis, I feel …” … and the patient is to choose words. Explained the therapist, “The first word your mother chose was ‘blessed.'”
It’s one of many illustrations highlighting mom’s faith in a sovereign, loving God to know what’s best for her in His plan for this world. The amazing thing is that when mom lost her voice, she spoke more loudly and clearly than she ever had before. She taught us how to trust God in our pain, use it to help others, and live in expectation of a much greater life to come.