Keeping the Faith
Faith is a gift that many people possess and nurture. I define it as believing in something, whatever that may be. Something we hang our hats on that reflects what we know to be true about how to live.
Science extends a hope narrative that feeds our faith: Hope for a cure, hope that a new therapy will slow progression and buy us time until there is a cure. Hope can distract us from the breakdown of other narratives. Taking my medications will make my life better. I’m feeling worse than ever, but I have hope that a better therapy will come along. I hope those myelin-repairing treatments in the pipeline will become available before I croak.
Belief in a higher power offers both hope and faith. My faith in God is its own reward. Allah answers the prayers of believers and non-believers alike. I prayed to St. Rita to restore my vision and after four months of blindness, she blessed me by restoring my eyesight.
The positive thinking narrative is a popular one in American culture. If I think good thoughts then good things will happen. A happy person is a healthy person. The premise of positive thinking is denial: Depression can be avoided if people would just get a positive attitude. I never get sick because I don’t believe in disease. It’s mind over matter.
When we speak these narratives to each other and to ourselves, in what, exactly, do we have faith? When our faith breaks down, what is it that makes us fall apart?
The core of our faith is in the belief that our narratives are true. We break down when we fear that something we’ve heard and repeated so many times no longer works.
The responses to this breakdown are many. Depression, drug and alcohol abuse, suicide. But the majority of us respond with denial. For most of us it is a useful and necessary choice. The Christian doesn’t abandon her belief in Jesus for very long. Religion is useful and comforting. God works in mysterious ways. Many of us can abandon the untrue narrative and embrace a new one: Copaxone wasn’t working after all, I’m going to stop. But Tecfidera has a better relapse rate, this might be the one.
The bravest souls among us cast out those narratives they feel no longer serve them. They search for no substitutes. They are not unhappy people, only unflinchingly honest. They can live in the moment and say what they see, knowing that everything could change in an instant. They need no god or hope or platitudes to feel secure. Security itself is a false narrative.
Multiple sclerosis constantly challenges our life narratives. I’m going to be one of that 50 percent of MS patients who will never need a wheelchair. I’m not having a flare, just a bad day. I’ve taken Avonex for fifteen years, so this new problem with seizures must have another cause.
Whether we embrace, abandon, or modify our life narratives is a very personal decision. Through them, we maintain our faith that science will triumph, and this brings us hope. Science feeds our hope. The more it advances, the simpler the treatments become. The MS treatment of the future will be patient-centered; we’ll know her particular blueprint, deliver two or three designer molecules to the right spot and she’ll leap out of that wheelchair.
What life narratives do you live by? Have they ever broken down? If so, what did you do to restore them?1
Does your employer provide workplace accommodations due to your MS?