Trying to Behave for the Greater Good in Very Strange Times

By Sandy Siegel, President of SRNA

I’ve been through a lot of strange times in my life and experienced some monumental challenges. What is going on today is uncharted territory. I started paying attention to the COVID-19 stories in January. It felt like a tragic event that was taking place a world away. Over the past week, the story has become very real and personal. It is surreal. The events of the past few weeks make it feel as though life will be forever changed for my community, for our country and for the world. What happens in China will no longer feel a world away. This experience is the most profound lesson about just how interconnected and interdependent our world has become. Our world is smaller than many of us ever thought. This is a life-altering experience that will change our perceptions of the world and our place in it.

Just how serious the situation is really hit home over the weekend. I watch and read a lot of news. There was nothing about my family or friends that caused my epiphany; I don’t yet personally know anyone who has tested positive for the virus. It was the information that caused the epiphany. I live in Ohio. Our governor and our state health director have been aggressive in how they are handling the situation. My grandchildren were told that their schools were going to be closed for a while. Libraries and museums have closed. Gyms, bowling alleys, restaurants and bars have closed. Barber shops, salons, and spas have closed. We haven’t been told to shelter in place… yet. But we have been told to stay home unless we have somewhere we need to go, like to the bank or a grocery store or pharmacy. Our governor postponed our election. That was very weird and a bit scary, but probably a good thing since so many seniors volunteer at polling places, and we’re not supposed to congregate with more than ten people.

I can’t visit my mother who will be turning ninety-five this June. She is in an assisted living place that is not allowing visitors. I feel badly for her, because in addition to no visitors, they have curtailed a lot of their social activities. Social isolation is hard for everyone… it is more than hard for seniors.

My temple has restricted any activities involving face-to-face gatherings, including our services, Torah studies and education. Our rabbi and staff are being creative about conducting programs online. Our services are being live-streamed.

There are restaurants offering delivery services, and I’m considering ordering meals periodically so that I can support them. I am very concerned about how these small businesses are going to survive this episode, and I want to support them as much as possible without jeopardizing my health.

I peek at the stock market periodically, but I’m not fixating about it or worrying. I’m retired. I have a lot at stake in how well our economy does. We all do. I’m going to bet on America. This is going to be a difficult time, but I believe we are going to be okay. These are trying times, but it is not the apocalypse. Our economy will, in time, recover.

For some, these are going to be really trying times. I’m concerned for people – people I know who own small businesses or who work in jobs that are not considered essential. Applications for unemployment benefits in Ohio have skyrocketed. I’m concerned for people who do not have good benefits, such as sick leave. I am very concerned for people who do not have health care insurance. I am hoping that there will soon be state and federal government programs that will help people through these really difficult times.

I’m home. Alone. I communicate with my mom by phone. I facetime with my grandchildren. I have enough food in the house to last me for a while. I take walks outside to get some exercise, and if someone passes me on the sidewalk, I walk out into the street to give us distance and wave hello. My approach is cautious and friendly.

I wash my hands a lot. I use disinfectant wipes to clean surfaces in my home, and especially in the kitchen and bathroom. I’m really sensitized to all hygiene issues.

I’m keeping busy. I have a lot of SRNA work to do every day. I do a lot of writing. I stay in touch with my family and close friends. I have friends all over the world, and I’m constantly reminded that what I am experiencing in my neighborhood is also being experienced by my friends in the Netherlands, in Sweden, in France, in Germany, in Croatia, in Canada… everywhere. My friends are avoiding touching their faces all over the globe. I’m getting involved in so many different series that I never had the time to watch… how did we ever exist without Netflix, Amazon Video, HBO, and Showtime? I’m rereading every novel Kurt Vonnegut wrote. I’m doing a lot more cooking than I’ve done since my children moved out. And I get out to the parks near me and try as often as possible to take my camera. The virus hasn’t stopped spring and all the flowers and trees that will soon be blooming in central Ohio.

Yes. I’m keeping busy. And it is very lonely.

I have no idea how long this is going to last, but I am assuming that no one really knows, and it could be a long time.

While I go through this experience, I remain positive and I am grateful. I have sacrifices to make, but in the grand scheme of things, I have little to complain about.

There are a lot of words being spoken and written. We’re hearing and reading lots of words on television news, newspapers and social media. Lots of words; little information. I’ve concluded that for the foreseeable future, there aren’t going to be any great scientific discoveries happening, and I’m going to have to rely on the little information that is coming from reliable sources and good old common sense. Medical science needs to learn about this virus, and they need to develop vaccinations, as well as effective methods for treatment of the most difficult symptoms. As we know so well in our community, research takes time. Drug development takes time. Vaccination development takes time. Clinical trials take time.

For the foreseeable future, we’re going to be dealing with lots of uncertainty. Dealing with uncertainty is nothing new for our community.

The Siegel Rare Neuroimmune Association will provide you with the best information and support possible. Jeremy is working hard to offer virtual support group meetings and to expand our network. We are engaged with our medical community so that they can offer you informed guidance. Our core mission and programs will continue.

We are fortunate in that we have been working in a virtual space since our inception. All of us, including our staff, work from our homes. Our work has not been hindered in any way. We come to work every day and remain engaged with our community. We are answering our phones and responding to emails. We are regularly posting blogs and creating and producing podcasts. We continue to produce and distribute our publications. We continually update our website with the most current, relevant and important information. We have only curtailed our face-to-face interactions. We have a lot planned for the year in the way of education programs and our camp. We will keep you informed of these programs as we learn more about how community, state and national recommendations and directives develop.

I don’t have any great advice to offer, just my usual dose of common sense. Stay informed and make the most judicious decisions about your sources of information. Your state health departments, the CDC, and the NIH will provide you with the best information. Strictly adhere to their recommendations about hygiene and social distancing. Social isolation protects you, your children, your parents, and your community. If there was ever a case where your personal choices have a direct and profound impact on everyone around you – and I do mean everyone – this is it.

Please check in regularly on our website and read our blogs and sign up to listen to our podcasts. We will continue to offer our regular education opportunities, and we are focusing more of our attention on information about COVID-19 and how to keep yourself safe and as healthy as possible.

People with the rare neuroimmune disorders are at greater risk if they get COVID-19 than the general population. We are being warned that people with chronic conditions are at a higher risk. That is people from our community. Some of you with higher cord impact have issues with breathing. As COVID-19 is a respiratory disease, that creates a significant risk for people who have breathing issues.

The people from our community need to be even more vigilant than people around you who don’t have similar physical issues. You need to be smart and cautious about who comes anywhere near you, where you go, and your hygiene practices. And your caregivers need to be equally cautious and informed.

Now is a good time for you to contact your primary care physician and your neurologist to learn about what their protocol is should you start to run a fever and begin to develop the symptoms that could possibly be COVID-19. They all have systems in place. You need to know how your doctor wants to communicate with you.

My doctor sent me an email last week. If I start to run a fever and develop symptoms, she wants me to call her office and not just show up in her office or an emergency room. If I develop significant breathing issues, she does want me to go to the emergency room at my closest hospital, but the directive is to call the emergency room and let them know I’m on the way. They don’t want me just showing up in the emergency room.

My point is… know the protocol before you have an emergency. You don’t want to be figuring this out in the middle of the emergency.

You also need to touch base with your neurologist – hopefully, a neuroimmunologist. If you are having issues or concerns about your medications, they need to hear from you. They will provide you with the best information. They know your medical histories. Please depend on your physicians for the best advice.

If you don’t have a neurologist, this is a great time to find a good one. Please check our medical professional network. Many people from our community stop seeing a neurologist regularly after a period of time. This is particularly the case if they have one of the monophasic varieties of the rare neuroimmune disorders. If you have an emergency and need a neurologist, it often takes time to see one if you aren’t established. Please don’t wait for the emergency. Find a neurologist. You should probably be seeing one at least annually for a neurological examination.

Uncertainty causes stress. Stress will make you feel worse. Fear will increase your stress. Stress will make you feel worse. Feeling as though you have lost control of your life will cause you stress. Stress will make you feel worse.

You have not lost control over your life. You can make choices about staying safe and maintaining your health. Isolate yourself as best you can. Interview your caregivers and be sure they are doing all they can to protect themselves. If they need education, offer it to them. Ask them to wash their hands often. You can be diplomatic and kind while being resolute about what you need for them to do for you to keep you safe.

Sometimes the best medicine for the crappiest of situations is to offer help and kindness to others. Honest. It will make you feel good about yourself and will help you to find some peace in all this chaos. Engage with people on Smart Patients. Start a virtual support group in your community if you don’t have one. Get in touch with Jeremy at jbennett@wearesrna.org. He’ll help you get something started. Call your elderly neighbors and check in on them. Read our blogs, listen to our podcasts, check out our website. It would be a great time to participate in our registry, if you haven’t already done so.

I think about Pauline all the time. Going through this experience has me thinking about her even more. I think about how she would have handled all this mess. I know that worrying about Pauline would have made this a great deal more stressful for me. Whatever Pauline would have done for herself, I know it would have involved lots of great movies, many books downloaded to her kindle, and lots and lots of chocolate.

I will look forward to seeing you on the other side of this virus thing.

More than ever, please take care of yourselves and each other.

You can find resources and updates on COVID-19 and rare neuroimmune disorders here.