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| Chuck, my mom, Elizabeth and me at Lancaster Castle, UK (the trip we scheduled instead of Italy) |
I am a former politician who has worked in education for the last nearly twenty years, so I am not a medical expert. But, I had a baptism in virus, infection, and immune systems last year that gives me a unique perspective on the coronavirus debate as a wife and mother. I also was the Governor (acting Governor if you want) during 9-11, and my husband and I had just invested significant savings into a small business in 2008/9, so I also have some experience with fear-induced recessions from multiple perspectives. I've been reflecting on those personal and professional experiences as I've tried to give counsel to those making difficult coronavirus decisions. I have also had to make some hard coronavirus decisions recently. And, I've seen a lot of debate - particularly on parent-Facebook pages for colleges - around the decisions being made by college leaders on the coronavirus. For what it is worth, here are some thoughts & some personal feelings are thrown in:
Why is coronavirus any different from the flu (and other viruses)?
Lots of laypeople are trying to make the comparison between the flu statistics and coronavirus: mortality rates (is one more deadly than the other?) and the pervasiveness of the spread. But there is a severe flaw in this comparison that I can give some personal perspective on.
First, context:
Nearly 18 months ago, my husband, Chuck, who has inherited kidney disease, received a tremendous gift: a donated kidney. It gave our family the hope of many years of family vacations, milestones, and blessings that had come into doubt as his health began to deteriorate in his early 60s. For our three daughters, they could hope to have him see them graduate from college and perhaps plan on him walking them down the aisle at their wedding. I contrasted this with a vivid memory of a conversation we had with his kidney doctor during a scary stretch of decreased kidney function in his late-40s when he had asked his nephrologist if he would see them graduate from high school. We did not get a resounding "of course!"
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| Chuck right before Transplant - August 2018 |
But, with any transplant comes immunosuppression. And until you have lived this reality, it is hard to explain. Salad bars become your enemy (imagine my surprise after a lifetime of trying to love the salad bar?). The handwashing, avoid sick people, flights, and crowded spaces - particularly during cold and flu season - that so many people are just becoming aware of today became our second religion. But, despite all of this, last winter, Chuck started to feel unwell. Long (very, very long) story short, he contracted what we eventually discovered was an adenovirus. He nearly died. I came as close to being unable to function at anything besides his care as I have ever been, and I now know what people mean when they say your world stops. We are huge Boston sports fans. I watched the epic AFC East Patriots-Chiefs game on one of those small hospital TVs (and the Super Bowl in the lounge of the same hospital when he was feeling a bit better). Chuck was sliding in and out of feverish sleep, not really comprehending anything going on around him.
So here is why flu & other viruses are different from Coronavirus: Every member of our family, including Chuck, has had and continues to get a flu shot annually. We host family holidays and ask if folks have had the flu shot, and if they haven't, we ask them to be extremely cognizant of whether they feel well enough to enter our home. This past Christmas, one of my nephews started not to feel well and 'self-quarantined' at my mom's to stay away from Chuck. So, we can take measures to keep the flu - which would be deadly or at least very, very damaging to Chuck, out of our home via a preventive vaccine. Second, with other viruses which we don't have a vaccine for -- like the common adenovirus -- (which all of us have likely had, it presents as a common cold, but for Chuck, without an immune system it was nearly fatal) there are some solutions for an immunocompromised person that exist today that don't yet exist for coronavirus. Several biotech companies have anti-viral drugs that have proven effective against adenovirus (and there are anti-viral drugs that will combat other viruses - I am assuming we don't yet know if this is the case with coronavirus, but that we will know more as time goes by). Unfortunately, most of them are incredibly toxic to the kidneys. In Chuck's case, the solution was to slowly reduce his immunosuppressants to allow his system to attempt to fight the virus, to give him IVIG treatments (which are expensive and in short supply) and to provide him with the advantage of other folks immune systems, before trying the anti-viral drugs. I learned that treating a virus in an immunocompromised person is a lot of art and science. In Chuck's case, our goal was to try not to have his system reject the kidney but to reject the virus. And to go slowly enough to pull that off but not so slowly that you would lose the patient (that is a very nice way of saying, try not to let my husband die). The testing, by the way, even for detecting adenovirus, had to go through the MayoClinic, and it often took 7 days to get results back on the amount of virus in his system. As he slowly got better, his kidney function did slowly degrade. And we didn't know for weeks whether it would return to the normal post-operative functioning (and whether the entire surgery and transplant would be for naught). In the end, we were lucky, and he is a fighter. He got better, and his kidney is a winner and also kept functioning. But in the case of coronavirus - not only is there no vaccine to prevent this nightmarish scenario, but due to its newness, there is little available for patients like Chuck in terms of treatment. Even with well-known viruses, I saw first-hand how complicated, limited and day-to-day our existence was, and I cannot imagine how the same scenario would play out with a new virus with no data or treatment regimen for doctors' to rely on or to follow. Or maybe I can but don't want to imagine.
Why does that matter for college students? Looking back before coronavirus, every college-parent Facebook page is filled with parental complaints, questions, concerns about the spread of various illnesses. Shared bathrooms, stress, lack of sleep, close living quarters, and everything else (use your imagination) that happens at college makes the spread of illness on college campuses as epic as it is in daycare facilities. And our treasured college children don't stay contained in a bubble, unfortunately, spreading disease only among themselves. They go to classes with professors who may have spouses who are immunocompromised. They eat at restaurants and shop in stores with individuals who may be immunocompromised. Or, like our family, they come home to parents with that condition. And, there are likely other students with immune system challenges as well.
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| Our daughters, before leaving for college. |
From what medical professionals have said, it appears the coronavirus may also be non-detectable in otherwise young and healthy individuals (read: typical college students), making it even harder for those who are attempting to avoid illness or those with the disease. Our children may not be sneezing on us to spread the virus, they may be merely touching their nose or mouth and then leaving the virus behind undetectable to a high-risk individual.
So should we all just live in a bubble? Of course not! But what should we do?
LISTEN TO THE MEDICAL PROFESSIONALS!!!
One of the most important lessons I learned as a young Governor on 9/11 (I even wrote about it when leaving office) without any anti-terrorism training and limited public safety knowledge, was to trust in the subject matter experts in a time of crisis. Medical professionals are giving sound advice, it seems to me - and it sounds much like what our doctors told us when we were heading out of the hospital post-transplant:
- Wash your hands with soap (it is better than anti-bacterial stuff - but that is better than nothing).
- Don't go to work if you are sick (and stay 6 feet away from folks who are sick).
- Get a flu shot! (Fewer people with the flu will free up limited test kits for actual coronavirus cases, and beds for coronavirus patients).
And this is where we all need to give our leaders who are listening to the medical professionals (yes, this is you my fellow Facebook Parent commenters - she said with great affection) a little bit of a break.
A little over a week ago, the CDC raised the risk level to 3 in Italy. Many study abroad programs had students return from Italy as they had set a policy of not having students remain in Level 3 countries (recommending no unnecessary travel). The CDC has also made a more nuanced recommendation that all higher education institutions "consider" canceling all study abroad programs. It is not clear if that should be prospective or inclusive of everyone currently overseas, and this has led to a lot of difficult conversations and decisions in higher education. Fortunately, universities and colleges are where we keep a lot of our smartest people and where many of our nation's top doctors have been educated. Many universities have medical institutions affiliated with their campuses.
What is fair for a parent to ask of our college Presidents and leaders? I think it is reasonable to ask: "Which experts have you consulted and are you following their recommendations?" "What are your guiding principles when evaluating the information from experts?" And perhaps, "Who are the experts with whom you are consulting, and do you have any set policies that you are following in this crisis?"
I've had to ask a bunch of these questions myself over the past few weeks because my oldest daughter is a Junior in college, studying abroad in London. And that immunocompromised husband, my nearly eighty-year-old mother, and I all had a long-scheduled trip to visit her and my mom's distant relatives in northern Italy over the Boston College Law School (where I am currently a visiting Professor) break two weeks ago. When Italy was raised to level 3 by the CDC, we canceled our trip there. In deciding whether Chuck should travel at all and ultimately whether Elizabeth should stay in London, we consulted our doctor who knew our specific medical issues and our capacity to deal with them and tried to evaluate all the information without fear. Ultimately, we took our trip and stayed in the UK, and Elizabeth remains in London. We increased our already excessive use of sanitizing wipes, soap, and hand sanitizer. I am a little hopeful that the increased attention to hygiene and handwashing may have made the international trip, which was not without risk for Chuck even without coronavirus, a little safer with the community commitment to handwashing.
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| Chuck, Elizabeth & Me celebrating his Birthday at OXO Tower Restaurant, London March 2020 |
Why? Ultimately, we also are trying to balance risk with fear. Because that is the other thing, I learned on 9/11 and again, as a small-business owner in 2008 - 2011. The impact on our economy, which is profound and impacts real people from a fear-driven recession are also not to be taken lightly. I think some of the rhetoric that is not based on medical facts or science, from political leaders and even perhaps from other parents, is a well-intentioned effort to combat this fear. In my mind, scientific facts best combat fear. Chuck did not go through a transplant to live his life in fear and to not participate fully in his daughters' lives. Visiting the UK and Elizabeth abroad was a dream trip for us, and we had to balance that with reasonableness to his health. I would lie if I said it was not a bit nerve-wracking with every newscast and headline blaring about the virus and who was most at risk. But ultimately, we tried to act rationally and listen to the experts. Our decision to have Elizabeth stay in London was equally tricky. The direction from her home college was pretty squarely in the "we will support you whatever you decide to do" realm. Again, our health care provider gave us good advice. We stocked her up on cold & flu meds. (She has had a flu shot.) We canceled her sister's visit in a few weeks and subsequently a trip she was going to make to Spain in favor of a school trip within the UK. We are encouraging her to travel as she did with us -- armed with lots of soap and wipes. She knows not to go to Italy and to watch the CDC warnings. She knows to check her school emails a little more frequently than usual and to actually read them. And she knows that if the CDC raises London to a Level 3 (it isn't even 2 yet), then she will need to come home early. She should be getting the most out of every day she is there - which we had told her to do anyway before she left in January and, as she is uniquely equipped to do as a twenty-one-year-old living in London!
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| Elizabeth being 21 in London. |
Might Chuck get sick in the next few days, and I will live to regret this trip and post? Yup. That is all part of life and faith, and grace. Might Elizabeth get sick and call home mad that we didn't bring her home with us this last week? Yup. Maternal guilt will go into overdrive & is undoubtedly familiar. But how many difficult decisions do we make as parents, spouses, and children of elderly parents that entail risk and judgment? I think that is what we need to remember. There are experts on the coronavirus, disease, and prevention. In times of crisis and fear, we just need to have the courage to listen to what they are telling us and to trust our decision-making ability.
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