Witnessing Words

The clouds have drifted over our little village today, the soft rain mimicking my recent emotions and subsequent self-imposed oppression.  I pride myself on avoiding the pitfalls of expressing my opposition to opinions on social media. However, this week I have failed to maintain that moral commitment.  

 With honest reflection, I can pinpoint the rationale. I recognize how challenging the choices are that we are being asked to make, and that at times they seem futile. Being a witness to this process has been very humbling, and in multiple cases may in fact change the outcome of friendships, and that, I have realized is okay.

 We have spent our entire “family existence” making the difficult decisions that the rest of the world is tasked with during this health crisis. Placing value on life, over comfort, convenience and normalcy. We have been making these same choices to protect Maylie every day for twelve years, which is a drop in the proverbial well for so many of our clients approaching their 30s, 40s, and even 50s, who self-isolate and mask just to be a part of the world, and there is no endpoint, no carrot of hope to encourage commitment. I suppose we, the CF community have the gift that we have chosen to create community around fighting a disease, rather than each other, but I could say that would be plausible now as well. The prevailing truth is that repeatedly voicing vehemence about a situation that is impossible to change only fuels a fire which is unable to be extinguished. It is the ultimate waste of breath.

I recognize that we are all on different paths, complete with our own impediments. I have never felt indignation towards those around me who do not have to make these difficult decisions, balancing health with desired freedom. But the reality is that living with chronic disease begs this for each and every community-based decision. The world is being asked to walk in our shoes for a period of time. Some of you are doing it with grace, tenacity and respect. Others are finding ways to bend the rules, blame society and use anger as a podium. Which is so perplexing to me.

I am certain there have been countless times when our protectiveness of Maylie was overzealous and unnecessary, as these precautions may feel to many individuals right now.  We could have attended the party or let her go on the field trip or celebrated Christmas with family, but I do not know that. We do what we can to protect her with the information that is in front of us, information from journals and medical scientists, who know more than we do. So, using my voice to comment on biased postings, media, lay journals and any other opinion that hold no real voice in this war is ineffectual. Those posting are looking to adjust my commitment to science, which is squandered energy.

Somehow, the US has become divided over personal rights, politics and media. And to what gain, I question. You are fighting against humanity, against the lives of others and against the ultimate safety of your tribe, whoever that may be. So, call it mass hysteria, call it political hype. But, just remember that in the near future, you will walk away from this. This will not remain your norm like it is for so many with compromised immune systems and lung disease.

Throughout our life in CF, I have heard countless times, “I don’t know how you are so strong,” I always respond by assuring people that if someone they loved was in effect a moving target, they would be amazed at the lengths they would go to, to keep them protected.  Now is the time to show that you are stronger than you think as well, if not for your family, then for someone else’s.