The Challenge—and the Gift—of Living with a Disability
By Tom Hoffman (MDiv ’95)
My symptoms came upon me suddenly, unexpectedly, like a thief in the night. Except it was broad daylight. My arms started shaking uncontrollably, and my head shook violently from side to side, as if I were disagreeing with someone emphatically. Then it stopped, only to recur again a few hours later. Within a week or so I was shaking more and it was happening more frequently. My speech had become affected so that my mouth refused to speak the words that were in my mind. Sometimes I would get stuck on a word or sound and repeat myself. My eyes clamped closed and wouldn’t open. I would double over at the waist without warning. And I began to walk with the shuffling steps of a 100-year-old man.
I was told it might be a tumor and I might be dying. While awaiting test results and a referral, I was advised to get my affairs in order. Then I was told my condition was stress-induced. If I could identify the key stressors in my life and resolve them, my condition would resolve on its own. Difficulties at work, conflict in the church, my wife’s pregnancy with our third child, and our house being on the market were all suggested as possible problems, but those issues came and went and my condition still remained unchanged.
The non-medical community had their opinions, too. Well-intentioned Christians suggested that I might have a demon or that there might be unconfessed sin in my life.
Finally, I received a correct diagnosis. I have Dystonia, a movement disorder that affects the same part of the brain as Parkinson’s disease, though by God’s grace dystonia is not terminal. For some, it is localized in the hands, face, neck, or on one side of the body. For others, like me, it can be generalized or involve the entire body. I call it my Romans 7 affliction; it causes my body to do things I do not want it to do, and I often cannot get my body to do those things that I do want it to do.
With a diagnosis came attempts at treatment. Physical therapy, Botox, anti-seizure medications, pills to increase dopamine production, pills to prevent dopamine production, pills that left me catatonic, pills I had to send away to England for and pay for out of pocket because they were not approved by the FDA. Nothing worked.
So I am left with a condition that is easily misunderstood and, as of yet, untreatable. When others first meet me, as I loll my head and grunt because the words won’t come, I am often mistaken for having an intellectual disability or cerebral palsy.
Through my experience I have learned that I cannot always depend on what doctors say, for they have often erred and contradicted each other. I cannot even rely on what friends say, and must not give too much weight what strangers say. In the end, what matters is what the Lord says.
What does God say about a man in my state? The Lord God Almighty, King of the universe, says I am his beloved child (1 John 3:1). He chose me and loved me in Christ before the foundation of the world (Eph. 1:4). He will never leave me, nor forsake me (Heb. 13:5). I am part of a royal priesthood, a holy nation, a people who belong to him (1 Peter 2:9). I will one day rule with him in glory and be among those who judge the angels (1 Cor. 6:3). I will live in a magnificent home (John 14:2) in a glorious, celestial city (Rev. 21:2). With him in glory there will be no more sorrow or mourning (Rev. 21:4). There will be no physical afflictions: the lame will walk, the blind see, the deaf hear (Isa. 35:5–6). Stammerers will speak freely (Isa. 32:4). And it will be thought nothing to live hundreds of years (Isa. 65:20). There will be no fear or shame or humiliation, either (Isa. 54:4). Eye has not seen, nor ear heard, nor has the human mind conceived how great will be the future the heavenly Father has in store for us (1 Cor. 2:9).
The challenge, then, is living the reality of brokenness in light of these great and precious promises. Scripture tells us that this is not pie-in-the-sky-bye-and-bye thinking, but that our hope will not disappoint us (Rom. 5:5). I cannot deny that I am broken. In light of the sin of Adam this is true of every man, woman, and child who draws breath. But I must be equally adamant about the fact—the certain truth—that I am redeemed by Christ. That changes everything.
The promises of Scripture determine how I cope with my health issues. I am not my body, and I am even less my affliction. The spirit of the age would have us worship good health and physical fitness, as if these are all there is to life. But even the most chiseled bodybuilder, the most shapely model, the athlete with the most stamina, is going to age and die (Eccl. 12:1ff), and treatments medical, surgical or pharmaceutical, may slow, but cannot stop it. My breakdown has simply come much sooner. But truly we are fearfully and wonderfully made (Ps. 139:14), and although things can go fearfully wrong, that just highlights how vast and complex, how marvelous and miraculous is God’s creation, and what a privilege it is even to be a part of it. And because the Lord delights in his own handiwork, we can look forward to the day when all that is broken will be set right.
The promises of Scripture help me face a society that does not understand. I am not what the world thinks of me. I try to be patient with those who are impatient with me. Whatever they may think about my mental capacities, I know the truth. My condition has taken me out of the work force and I am now a stay-at-home father. For the past eight years I have homeschooled our three kids. For neither of these things do I get paid. There is no prospect for promotion or accolades. This is an antidote to those who would find their identity in their work. But it forces me to find my identity in Christ, where it has truly been all along.
The promises of Scripture help me find my place when even my family—that scriptural cornerstone and foundation of society—has been turned upside down. As a convinced complementarian, I have struggled to make sense of our situation as I have stayed home and my wife has gone back to work. It has been a blow to my ego and a challenge to my sense of who I am as a man, even in Christ. But if Christ can gather his people as a hen gathers its chicks so, perhaps, may I. And my wife’s industry only increases my confidence, and because of her our family lacks nothing of value (Prov. 31:11).
And the promises of Scripture assure me that on that great and glorious day, when faith becomes sight and I see even as I am now seen, even my worship will be healed. One of the things I cannot reliably do because of my condition is sing. I love to sing the praises of him Who died for me, but my voice won’t cooperate. If, on occasion, I am able to belt out one of my favorite hymns, as soon as I realize it—and think to myself, “Oh, Joy! At last I can glorify my Maker and my Redeemer freely!”—my brain catches up to my heart and my mouth is stopped. My face may contort and my neck snap my head back and I stare at the ceiling, still praising God in my heart, but wondering what the people around me are thinking. But the Lord is not pleased with our worship because we do it well, any more than because we get it right. We may exercise the regulative principle and vet every psalm, hymn, and spiritual song to be sure they are theologically or musically correct, but our best efforts will still be tainted with sin and human frailty. And the best vocalists or instrumentalists, whom I envy for their skill and freedom, will sound even better in heaven. And so will I.
For ultimately, what is promised is more real than what we experience now. Now we see in a glass darkly. Now we see types and shadows. What’s to come is real life—abundant, free, well, whole, sanctified, glorified, and eternal. I still certainly have bad days. I have angry days, frustrated days, and feeling-sorry-for-myself days. But my experience, my attitude, my disposition on any given day cannot shake the promises, which are unchangeable, firm, and secure, an anchor for the soul. And our present sufferings are not worth comparing with the glory that will be revealed in us (Rom. 8:18).
Even so, come, Lord Jesus.
Tom Hoffman (MDiv ’95) was diagnosed with Generalized Dystonia in 2004. Since that time he has adapted to his changing roles in ministry, contributing to devotionals and promise books and homeschooling his three children. He and his wife, Rachel, live with their children in Cane Ridge, Tennessee.
Read more about how the church can better serve people with disabilities in the Fall 2013 issue of Covenant magazine.