Perhaps this story is familiar to you …
More than a dozen years ago, I started to experience pain in my joints. Nothing permanent or serious it seemed, but I would have almost inexplicable pain and stiffness in an elbow or a knee or an ankle for a few days (never the same twice in a row), after which it would simply recede. I chalked it up to middle age and a lax attitude about physical fitness, and accumulated a large collection of wraps and supports and learned that ibuprofen was a good friend in times of need.
But it wouldn’t stop.
In 2007, after multiple Doctor visits and assorted tests, I was diagnosed with a rare auto-immune disorder called Reactive Arthritis (Reiter’s Syndrome). It turns out that my body was trying to destroy itself from within, one joint at a time. Luckily, having a diagnosis opened the door to finding a treatment and freedom from pain.
At least for a while.
In 2015 new symptoms appeared, which the doctors first took for a herniated lumbar disc that could be corrected by surgery. Or not. When the symptoms persisted, the process of doctor visits and tests went on until we reached a much more serious diagnosis.
I have Multiple Sclerosis.
The diagnosis changed my life. At first it was a medical problem requiring new medications and treatment protocols, and then an emotional one that led me to a therapist and a really great book called I Am Not But I Know I Am by Louie Giglio, where I read words like these:
God and supremely confident in Himself, He is free to choose the least among us—the slowest, the lesser known, the last, the smallest, the poorest—to accomplish amazing, God-sized stuff.
Even as I preached that gospel for 25 years, I internalized it as it never before. I heard the words “last, small, poor” anew – I experienced being part of the “least” in a tangible, bodily way. I am handicapped! And what does that mean?
Part of the struggle has been coping with the new limitations that MS imposed on my life, and especially on my work. I am palpably aware of the things I can no longer, and will probably never again, do. I didn’t even notice at first that I was grieving, but as I discerned what was happening to me, I realized that I had to deal with MS on a completely different level.
MS challenges me spiritually, asking question that are difficult to face and will be an ongoing endeavor: how do I find God in the midst of the constant pain and trials of my disease?
There is nothing new in that question, and there are many, many others who are living with chronic illnesses and disabilities asking. As I have become a part of that population, and share that journey, it has become clear to me: I have a new calling to do ministry among the community of people living with chronic disabilities.
All people of faith depend on the promise that God’s love is ever-lasting, enduring. We hear the promise of his abiding presence and take comfort in it. In a world where everything seems so temporary, the eternal Grace of God gives us hope and help.
For people with chronic disabilities, words like constant and unending are a very different experience.
For us, those words define our reality is very specific ways. Unrelenting disease. Never-ending pain. Permanent handicap. Our disabilities are a constant presence in our lives and an unceasing demand on our attention and time a drain on energy and a threat to hope. Our disabilities do not define us, but they are a constant companion that impacts daily decisions.
We are looking for a God who’s grace is just as persistent as our disabilities.
And so we are entering into a ministry which we call “Persistent Grace” in order to create space for God to speak to people who live with chronic disabilities in their particular needs. In prayer and devotion Persistent Grace is a time and place to listen for God’s word of grace and healing and to be reminded that we are whole and loved just as we are. In prayer, we lift up our pain and our struggle to a God who listens to us and sympathizes with us. In community, we find friends and companions to share our journey.