Pillow Talk: Reflections on Living With Disability

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My wife, Ruth Mulder, experienced disability challenges for 45 years after being stricken with Transverse Myelitis. She was awarded her crown of glory on December 21, 2019 at age 76.

Writing free-verse poems during the first year following her death was cathartic. It helped me stay connected, while adjusting to my new circumstances. These selections provide a glimpse into my wife’s extraordinary response to adversity.

The Recipe
I looked in a cookbook for a recipe today,
And I came across something unexpected.
You had tucked away a handwritten note,
Placing it as a marker for a favorite dish.
It made me wonder what you were feeling that day,
Seemingly in search of encouragement from Scripture:
“Behold, I am with you always” (Matthew 28:20)
“I will not leave you or forsake you” (Joshua 1:5)
Finding assurances in God’s constant presence,
You saved the “recipe” to savor a closer walk with God.

Someday
The gift from a dear friend, a stamped pillow that read:
“Someday everything will make perfect sense… Someday.”
It came at a time when life was especially difficult—
An ambulance journey to the Mayo Clinic,
A second emergency tracheostomy,
To relieve acute respiratory distress.
Twenty surgeries within seven years,
To correct persistent tracheal stenosis,
Which often left you voiceless…
One stretch for two long years.
Did you complain? It wasn’t your nature!
Thirty hyperbaric oxygen chamber treatments—
To provide healing and lasting reprieve.
Meanwhile, a bad fall and broken bones ended your mobility,
Ten years in a power chair needing total help to transfer.
Did you complain? It wasn’t your nature!
God gave you the grace to endure the purpose of his plan.
And finally, with a diagnosis of respiratory failure—
You were ready for that “Someday.”
Now, on the other side of suffering,
You are in heaven, where everything makes perfect sense.

How Did You Do It?
People would often ask how you managed
During those 45 years of increasing debilitation…
You were positive, pleasant, and contented.
Yet, surely there were times when you thought,
“I am the one who has seen affliction.”
But God also gave you the grace to confess,
“The Lord is my portion. Therefore I hope in him.”
Even when some days seemed more like burdens than gifts,
You still enjoyed our Savior, since “his mercies are new every morning.”
You lived in the promise that God himself would sustain you,
And make you strong, firm, and steadfast.
That, my beloved, is your legacy! 
(Selections from Lamentations 3:22-24)

Caregiving
“I wish you didn’t have to help me so much.”
“If people only knew what all you did for me.”
“Just think of what else you could be doing instead of caring for me.”
Such were your empathetic pleas, which I always accepted as gratitude.
And in turn I offered assurances that I would always be there for you.
You were forced to accept many stages of progressive debilitation.
The loss of your independence was understandably traumatic.
Who would blame you for wanting to care for yourself by yourself?
Feelings of insignificance and worthlessness would sometimes creep in.
We needed reminders not to fixate on the impractical and impossible.
We aimed to be content with what we could do and where we could go,
Trusting our faith to carry us through hard and cruel things of life.
Knowing God sends trials to wean us of our love for this world,
So as to draw our hearts to him—with the promise—“I am with you.”
(Selections from Romans 5:3-5; Matthew 28:20)

Ordinary
Why did God choose you to become disabled?
What was it about you that God predestined to use?
An unexpected disruption left you feeling confused and afraid…
Right-side paralysis and restricted breathing.
Yet, you responded with strength, courage, and trust.
Confident in what you knew for sure about God:
You belonged to him; secure in your relationship…
And in that relationship, you found purpose.
Purpose to be faithful to what God called you:
A committed, God-honoring wife, mother, and friend.
You learned patience in prayer—that God does, indeed, answer…
But in his will, his way, and his timing.
Always self-conscious of being in the spotlight;
Not realizing people closely watched your reaction
To forty-five years of disruptions and pain.
Your pleasant demeanor: a testimony of maturity in Christ.
Ordinary, in the pursuit and dignity of routine tasks;
Yet, extraordinary in your response to adversity.
You impacted others in ways never anticipated.

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Thank you for this beautiful and touching tribute to Ruth and to your life together, Ivan. You're a person of many talents and gifts! Reading this reminds me of times shared with you and Ruth at Disability Concerns Leadership Conferences in Grand Rapids, but also of Sunday afternoon dinner in your home in Pella. I'm grateful for all of them.

I'm reminded of another verse that describes my picture of our Lord's work in you: "Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your souls" (Matthew 11:29).

Thank you, Terry. Your journey also encourages me. Ivan

Thank you, Terry. Your journey also encourages me. Ivan

Thank you, Terry. Your journey also encourages me. Ivan

Thank you for sharing these touching poems.  I found them very helpful today as I remember my mom who recently passed and also suffered for many years.