When the pandemic came to town, life as we knew it came to a screeching halt. The middle of the month of March 2020 bore some resemblance to the old school yard chant – “No more teachers; no more books; no more teacher’s dirty looks.” Except that instead of saying goodbye to things we desperately sought a vacation from – we were saying goodbye to things we needed to exist or that we craved: No more school camaraderie for children; grocery shopping turned into an extreme sport; no more fitness center or yoga classes; no more haircuts; no more mani-pedis; no more mall shopping spree; no more in-person worship services; and most important for those of us with chronic illness, no more in-person support group meetings.
It was a challenge to do without things we took for granted. People had to become nimble in learning how to adapt and come up with alternative solutions. Parents had to find on-line play dates and other outlets for their children; boxes of hair dye flooded the delivery chain; exercise classes of every description were streaming everywhere; on-line shopping became even more popular; and the use of Zoom for on-line conferences and medical appointments skyrocketed. I think the long-term result will be two things: People will become forever grateful to professionals that heretofore had been taken for granted like schoolteachers, grocery store employees, and health care workers. Telework may become a more acceptable office solution, and on-line conference providers are in demand.
Fortunately for our group, my church has a Zoom membership which we use not only for worship services but for Bible studies and prayer meetings. Since our support group uses a room in the church facility for our in-person meetings, we were able to also take advantage of the church Zoom membership for our monthly support group meetings. We had already started to use technology in the support group setting by letting members have the option to phone into the meeting. Accordingly, it was just a baby step to having a Zoom meeting which can be accessed both through computer and phone lines.
One thing we all pledged when we joined the group is that we would not disclose confidences of group members. Accordingly, in writing this post I am being careful not to disclose what was said. However, I don’t think it is confidential information to state that one of the benefits of meeting as a group in normal times is that it gives us an opportunity to vent the frustrations of having a chronic condition when you look “normal”. These frustrations have increased exponentially in a time when the country is impacted by a disease that is still a mystery to the experts. The one thing that is not mysterious is that it has a more dangerous impact on people who fall into the category of “vulnerable individuals”. If you look at the definition of vulnerable individual posted on the whitehouse.gov website covid page, you will see that this encompasses people with most chronic illnesses.
Unfortunately, as vulnerable as we might be we still look “normal”. If you were to sit in on our meetings, you would think that the members look “normal”. However, I can assure you that we have challenging medical issues that make normal life difficult if not impossible. This means that we bear more than an acceptable amount of risk from Covid 19, and so we must practice the highest level of precautions to protect us from this awful new disease. People may stare at us as we wear masks even outdoors, or they might wonder why we have become hermits in our homes. Trust us, it’s not by choice and I for one can tell you that the isolation is taking a toll. This is why I am always excited to meet up with my chronic illness buddies on Zoom.
When you have a chronic illness, you stick out like a sore thumb in your neighborhood and family where most members do not fall in that category and will likely just have mild Covid cases. It can be hard to articulate to someone who is not chronically ill how it feels to be a vulnerable individual. But in the group, we don’t have to articulate the fear because each of us experiences it throughout the day whenever we have to make a decision about going outside to buy groceries, to pick up medicine, to get gas in our car or to get exercise. The car can become like a sanctuary because you can ride around inside with a barrier to Covid germs yet still see real live human beings walking along the street or driving their own cars. You don’t feel quite so isolated. Similarly, even when we can’t meet in person and give hugs or high fives, well Zoom enables us to see the empathy and concern in each other’s eyes. Zoom meetings have become a priceless opportunity to stay engaged, to share frustrations and laughter and many other valuable experiences.
We have been able to share how others in our community have been reaching out to make sure we are okay. We are so grateful that during this time our support group has an extension into our community – even to people who don’t have chronic illnesses. Because in the age of the pandemic, people have had it programmed into them that someone who says they are vulnerable bears a high risk. It warms our hearts that people who are healthy and don’t share our symptoms are concerned and they have our backs.
Shopping for groceries has been a challenge for everyone in this area, but especially those of us with chronic illness because we feel like germs are targeting us like a heat seeking missile. Some of those great people in our communities have offered to pick up groceries for us. Others within the group have picked up tips about how to join the delivery app queue without a lot of headaches, and others know of local services that help those who cannot shop on their own. Accordingly, our chronic illness network keeps us functioning at a high level.
When you have a chronic illness, sometimes it seems like you spend more time with your doctors than you do with your own family members! It is no different in the time of the pandemic, but the venue may have changed. In some instances, those appointments may have converted to on-line visits. In some cases, the chronic illness maty require an in-person visit because of procedures or lab work that needed to be performed. But the discussion of the time spent with our doctors – whether virtually or in real life – is always useful especially with Covid out there. This is because in each appointment, the topic of Covid invariably comes up. We were able to share information we learned from our medical community. This information either provided useful tips, or maybe some comfort that each of us was doing the right thing to protect our health.
One of the most important functions, I think, of a chronic illness support group is to be able to celebrate with each other the little victories – a good doctor’s appointment, good lab results, a medication solution that is working out well, etc. Of course, victories in life are always important. But in the pandemic era these victories become critical as they may be signs that a vulnerable individual will now have an advantage to hold his or her own should the corona virus come knocking on the door.
I thank God that I have the chance to be in touch with the members of the group, who are compassionate, empathetic, funny, wise, determined and strong people. And I thank God that we have the opportunity to meet on-line and see that each of us is doing fine – and to see the sparkle in the eyes of each member and the laughter as we talk about everyday things. Because it is these moments that make us feel not like we are chronically ill but like we are exceptionally blessed.
Melanie discovered that she had heart failure in 2013. She spent the next 7 years learning how to live with the condition, and how to achieve balance and personal growth. Then in October 2020, she received a heart transplant. This blog is about her journey of the heart.