All Together Now, Take a Deep Breath Because We Can

Saturday was supposed to be the very first time I marched in the cystic fibrosis walk. In fact, among the countless fundraisers I have attended it was to have been my first ever fundraising walk. At the last minute I was unable to participate, but only through my disappointment did I grasp why such events are so deeply important as fundraisers for so many causes.

We have a very close friend who has cystic fibrosis (CF). As a congenital disease our friend was born with it. This is not a little heart valve defect that can be repaired surgically. This is serious. Our friend is not able to recover from routine respiratory infections the way most people can shake off a head cold in seven to ten days. Our friend can hardly keep on enough weight to stay healthy as a result of the disease, a condition many in the U.S. would be envious of were it not for the time, money and effort on medications and treatments required to achieve reasonable weight and lung capacity. One day, our friend is likely to need a lung transplant to stay healthy, a major breakthrough in treating the disease, though certainly no cure.

Our friend wanted to participate in the CF “Great Strides” walk for the first time this year. His family rallied around him and helped assemble the team. I was simultaneously excited and distressed to receive his invitation. As a friend I was thrilled he reached out to us for support and camaraderie. But these events are fundraisers, and any time and energy I have for raising money needs to go to the Portland Women’s Crisis Line, per my obligation of “due loyalty” as a board member. Further, big events such as rallies and marches never change anything. They don’t change minds or raise awareness any more than a lawn sign influences an individual vote on October 31 of even-numbered years. At best marches and rallies achieve five or ten seconds of media coverage. At a minimum marches and rallies are important for advocates in any movement to grow sprouting energy. Consequently, as a committed introvert marches and rallies are not my favorite events since the real benefit is for the those who are already persuaded.

Upon receiving the invitation to join our friend’s team we immediately donated a small amount of money to support the team. We were proud to be the first team donors. We took our time, however, discussing whether we actually wanted to walk with the team. The entire registration process and related materials are focused on setting fundraising goals and recruiting new donors. Though it is unwritten, the overt expectation is that if we walk one year, within a few years we’ll be bringing in a meaningful amount of money for the Foundation. The assumption unfairly challenges my loyalty to the Crisis Line, and left me resenting the invitation to support a good cause for a good friend. In so doing it also made me angry to feel like I had to choose to support one cause over the other, even if in principle. We’ll give money when we are able, but I have neither the gumption nor the ability to take on two fundraising obligations. Plus there are thousands of great causes that need energy and cash, but our resources of both are limited. We conscientiously set our priorities when I joined the board.

Cystic fibrosis and gender-based violence are akin to comparing apples and lichen. They are both organic, but that may be all they have in common. Cystic fibrosis is a medical condition that can only be contracted genetically. Gender-based violence is a social issue that manifests in so many ways, the most destructive of which are within intimate and family relationships. With enough research, drugs, devices and therapies, cystic fibrosis can become manageable. Until then it means a difficult life that ends at a young age for those who suffer from it. Gender-based violence, on the other hand, will only become manageable when a critical mass of community members and family members reform their thinking and behaviors about what respect and violence means, and what is expected of a healthy relationship. Medical research will not help. Of course, like CF patients, those who suffer from gender-based violence lead very difficult lives that, all too frequently, end at very young ages. The bottom line is these two issues have different causes and require very different solutions.

Despite the full technicolor push to become superstar fundraisers we finally decided to join our friend’s walking team without making any additional financial commitment. Unfortunately, the day before the big event I woke up with a little raw clod in the back of my throat. It could have been a virus as easily as allergies or fatigue, but it was an unacceptable risk. There could be one or two hundred people at the event who would be unable to recover from a sore throat or runny nose, including our friend. If a cystic fibrosis patient contracted a virus because I sneezed, shook hands, or used a pen and passed it along it could mean several long weeks in recovery, if not hospitalization and intravenous drugs. My internal struggle over prioritizing my fundraising energy suddenly seemed cheated by the inability to attend the event for health reasons.

The greatest frustration in the sudden inability to participate in the CF walk is that there is nothing else I can do. I am not a geneticist or research physician. I cannot use my research to fix cystic fibrosis. I cannot lobby policy makers for rules that make it less prevalent, or develop reasoned arguments to persuade my friends and neighbors to think differently about cystic fibrosis so that it quits happening. I cannot reflect on my own behaviors and actions about cystic fibrosis to change the way I respond to it and the way it behaves towards me and those I love. I cannot reach out to someone who has experienced cystic fibrosis to support the recovery and healing process. As I have taught in my classes, fundraising walks are a show of solidarity, and they are to make people feel like they have done something even when they cannot. So there I sat, Saturday morning, at home by myself, unable to do the one thing there is to do, which does not even do anything to fix the problem.

One can never discount the value and importance of building a sense of solidarity through events such as marches and rallies. The annual fundraiser for the Crisis Line is called “Safety in Numbers” for this very reason, among several others. We were the first to send a check to support our friend’s team and that should have been enough since that is the only thing we can do that will help find better treatments. But a check does not deliver emotional support to an individual who is living a life like few others. As important as the research is the funds cannot deliver a hug. No amount of money can create a memory for our friend that let’s him know, “I’m with you, always.” Sending a check does keep supporters from feeling helpless, though in other areas, like the work to end gender-based violence, there are other actions that supporters must also take to advance change. In this way the cystic fibrosis walk was as much for my benefit as our for our friend. I cannot sit idly when a wrong of any sort needs to be corrected, even a wrong that is completely beyond my power to change.

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