Letter to The NonMask Wearers

This letter was submitted to us by a member of the hemophilia community, who wishes to remain anonymous. We promised to print it, and we offer our deepest condolences on her loss.

Dear non-mask wearers,

You know that the government of New Mexico mandated that we need to wear masks for a reason. The reason is to protect not only you but your family as well.

To the rebel who decided that it was not important to wear a mask and that it was okay to put other families at risk, you tore apart MY family. My dad, who had moderate to severe hemophilia A, contracted COVID-19, and despite the many trials and tribulations that he went through he was not able to overcome it.

His parents were told that he was not going to live past being a teenager. He defied all odds and lived to be 61. He had a lot of problems in his life, but overcame those as well. He had blood transfusions which gave him HIV and hepatitis C. He was able to beat both of those. He was able to get HIV and hepatitis C to an undetectable level. He also was able to raise his only child, me, pretty much by himself. He was able to meet his grandchildren and play a big part in their lives.

He became sick with bronchitis for some time and then had an allergic reaction to one of the antibiotics. He went to the hospital for extreme pain in his leg due to the antibiotic. They tested him for COVID-19, and he tested positive. He was life-flighted to a different hospital and put in the ICU. While in the hospital, they did a CT scan and found that he had two bleeds, one in his back and one in his leg. Later, he was also diagnosed with bleeding in the belly by venous bleeds which were really hard to contain. He continued to bleed so much that medics gave him six units of blood. He got to the point where he was combative because of him being in so much pain that he refuses to let anyone touch him. I remember how I use to have to tiptoe around the house because he would have a bleed and the vibrations would just hurt him so bad. He was placed on a ventilator and lapsed into  a coma. His body just eventually gave out on him.

Due to COVID-19, I was unable to see him in the hospital, but I was able to talk to him on the phone. I have to say this was maybe the hardest part in my whole life because I was unable to see him in person. I never realized how important that last moment was to be able to see them and be able to tell him how important and loved he really was. Growing up, we did not say that we loved each other very much. I just wish that one last time I would be able to hold his hand, tell him that I love him, and to be able to kiss him on his cheek.

This is what you risk when you do not wear a mask. You not only don’t protect yourself, but you risk infecting other families as well. My dad was too young to die but because someone who was so inconsiderate to not wear a mask got my dad sick, and he died.


A grieving daughter

The Hemophilia Community: Unmasked

Last night Doug and I watched the 2019 movie “Midway,” which had spectacular CGI aircraft battles. We somberly recognized the extraordinary sacrifices made by the young men who served. This after we also watched the Ken Burns’ series on Vietnam on Netflix. Different eras, different situations but what remains constant is the incredible sacrifice of Americans to serve and protect fellow Americans.

Which is why it’s hard for me to comprehend why some Americans are resistant, almost militant, to wearing a mask in public to protect against coronavirus. Even more, why anyone in the hemophilia community would resist. Of all people, we know what it’s like to be caught in an epidemic, to be victims of public health breaches. We’ve had horrific sacrifices, and those of us who escaped HIV by a year or so are forever grateful and respectful to those who lost their lives.

But lately on Facebook some hemophilia colleagues questioned what good would wearing a mask do, and others defiantly claimed they would not wear one in public. “I’m an American,” one woman wrote; she had worked for a hemophilia specialty pharmacy. “It’s my constitutional right not to wear one.” This, in white letters on a screaming red background. Another, an industry rep in Florida, wrote that he didn’t know anyone with COVID, thought it was overblown, didn’t see any difference in life in his corner of the world, so he was not going to wear a mask in public.

Beyond the actual act of going in public without a mask was the “unmasked” attitude: I’m an American and I’m doing whatever I want.

This led to a barrage of replies and comments about what it means to be an American, especially that it’s not always “about you.” The woman replied, “You do you and I’ll do me.” An extremely selfish comment to make during a pandemic, with over 125,000 Americans dead in a few months (more than twice the number that died in nearly two decades of fighting in Vietnam).

I kept thinking about our Hemophilia Holocaust. HIV is much less contagious than COVID. You can only catch it in certain ways. COVID is incredibly contagious. Yet during the HIV era, you did not hear from people screaming about their rights to do what they wanted, and not be inconvenienced by taking precautions. It made me wonder, what if we substitute the word mask with condom?

“I’m an American and it’s my constitutional right not to wear a condom if I don’t want to!” True, but what do you risk? Disease, unwanted pregnancy, spreading disease to others. Spreading the disease to babies. You never hear anyone talk like that about condoms. Why are we even applying constitutional rights to something that is about protecting public health? This was never done before. Is it because it’s an election year? Has politicizing a public health crisis changed the way people view public health now?

Well, Florida is now being considered an epicenter of COVID-19. It had almost 10,000 new cases in a single day, the highest in the country. Florida is going backwards, because it reopened, and people did not take precautions. A good friend of mine there took advantage of the reopening, got together with her family for the first time in months at a restaurant for just a couple of hours. Almost everyone got COVID, and some are very sick. She has completely changed her mind about wearing masks; it’s now imperative.

And 36 states have escalating cases. My state, Massachusetts, is holding steady, but we should be declining, with all that we know about this virus. Look at New Zealand: it’s considered virus free now, because it locked down, people wore masks and social distanced, and they united as a country to fight this common enemy.

Why is America now the leading country with the highest number of cases of COVID? Because so many are not taking precautions, like wearing a mask. A simple sacrifice that certainly does not infringe on any of your freedoms. It’s a lot less inconvenient than using a condom. And the simplest of sacrifices compared to those who fought–and died–for our freedom.

To be an American to me means honoring the sacrifices made by those who died protecting our freedoms: in World War II, in Vietnam, the doctors and nurses who have died recently, the patients and yes, babies, who have died. Remember the famous words: It’s not about what your country can do for you, but about what you can do for your country. Wearing a mask protects you, but it’s not about you. It’s about protecting others, stopping the spread. Sacrificing a slight inconvenience to help preserve the common good. Uniting and adopting known ways to stop the spread of this virus. With the freedom and rights of being an American come responsibilities.

What does it mean to you to be an American in a pandemic? What have you learned from the HIV holocaust? What can you do to stop the spread of this insidious virus? Some things to really ponder over the upcoming fourth of July weekend. Appreciate what our medical community is enduring as more people require hospitalization; empathize with those who have lost loved ones. Watch “Midway,” “Pearl Harbor” or some other good war movie. You will see what real sacrifice is, and what being an American really is about.

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