Wednesday, September 27, 2017

Worried for Puerto Rico

Living with a rare and chronic illness is never easy, but try doing it in the face of an epic natural disaster – no water, no power, no fuel – forget easy access to medical care, medical equipment or medications.

My family connection to Puerto Rico is distant. My great grandfather was from the northwest part of the island. He came to the mainland United States to go to college, and eventually became a professor at the University of Oklahoma. He was a linguist. While I inherited an HPS gene from him, sadly I didn’t get the language gene.

Living in Europe, I learned a lot about the history and culture of the other aspects of my heritage, but I never knew much about Puerto Rico. My grandmother would tell us stories about visiting the family plantation when she was a child, but that was about all I knew of the place.

When I was diagnosed with HPS, one of the blessings (instead of curses) that came with the diagnosis was a sudden intimate connection to the island. Suddenly I knew tons of people from Puerto Rico, and they were more than casual acquaintances – they became family! I was also blessed to get to visit the island several times to attend HPS conferences and work on HPS outreach. That was interesting, but it was also very satisfying to travel through parts of the island I knew my great grandfather and his family must have known. It was a connection to learn more about the culture and the food and the feel of the place.

My family here lost connection with the extended family in Puerto Rico when my grandmother’s last cousin (that she kept in touch with for years and years) finally passed away. I’ve always wanted to find extended family there, and make sure they knew about HPS, but I’ve never been able to do it. Every time I’ve attended an HPS event in Puerto Rico, I look at the crowd and wonder what the odds are that someone there is related to me, albeit distantly.

Unlike my many, many, Puerto Rican friends, I am not waiting to hear about the welfare of a relative. Still, waiting for news and watching for updates has had me very anxious this past week.

I worry for anyone in Puerto Rico who might have HPS and be on oxygen. Their oxygen concentrators won’t be working and I have no idea how they will get fresh oxygen tanks delivered anytime soon! I worry about whether anyone with HPS has been injured and may be bleeding and need medical attention. I worry about the health implications for anyone with HPS going forward as the island tries to recover. Are their lungs being exposed to mildew or mold that could affect their long-term prognosis? Are they out in the sun and unable to get the sunscreen that could prevent skin cancers? Are they getting exposed to bacteria in flood waters that could make them sick and further complicate their medical lives?

On the news I’ve heard about people unable to get kidney dialysis or insulin. When you have a chronic health issue, you are so vulnerable when things go wrong. It is scary!

I’ve felt so frustrated by the scant attention given to the plight of Puerto Rico in the media. I know the challenges of a natural disaster on an island are different than those in an area on the mainland. People can’t load up their cars and drive there to bring supplies etc. Still, I can’t help but feel that if this were happening elsewhere in the US, more would be done faster. It is sad that every news story has to emphasize that Puerto Ricans are American citizens. I guess I’m glad they are making the point, but it says something that they have to make it at all. Puerto Rico has the highest per capita participation rate in the Armed Forces. They have fought and died for the US for generations, yet according to surveys, more than half of Americans don’t even know Puerto Ricans are citizens.

I can’t imagine how all this must frustrate my friends with closer ties to the island.

For now, we are trying to figure out what we can do to help those with HPS recover. What needs might they have that are unique, and what is the most effective way to help?

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