The Race Goes On
A year ago this week the world came crashing down and fittingly that was the title of my first blog post. I reread it this morning and so many of the things I felt and said in those first days feel unchanged. For as much as the external world has changed my day to day life- dictated by rare chronic diseases has not.
I wrote about my stockpiling of foods, compounded medications, and wearing masks to protect myself which are still very much a part of my daily life. My body has not magically healed itself. I still survive by taking steroids and many other medications a day. I have faced and overcome health crisis and continue my fight daily towards healing. I am still waiting for research to lead to more answers that help ensure my healthier future. My rare disease reality will never change even when the pandemic ends. Is it weird that I am grateful that my rare normal has remained the same? Because the alternative is far worse.
Over 2.6 Million people have died from COVID worldwide. 1 in 3 Americans have lost someone to this deadly virus. That means millions of lives are forever changed by the grief and heartbreak that they feel because their parent or sibling, grandparent or best friend died from COVID-19. The contributions each of these millions of people would have brought to our world are also now gone. This is a devastating and incomprehensible loss of life.
I am sure that last year at this time I could not have predicted that we would still largely be living in lock-down. Given challenges of my rare chronic diseases and continued long-term steroid use, our diligence to keep ourselves protected has been unwavering. We do not enter any stores or homes and we do not allow anyone in our house. The only major risks we take are going to doctor appointments and our son goes to school. Otherwise, all interactions take place outside in masks or on zoom. Some days life feels impossible as we balance full time work and no childcare. And of course, we all miss the way we used to interact with family and friends and long for that to become "normal" life again. And yet, these seem like minor inconveniences compared to having lost someone we love or worse my son losing his mother and my husband his wife.
Thankfully, this year has also brought new knowledge as we are starting to have a better understanding of what COVID-19 is, how to prevent it and amazingly a vaccine. I am grateful for all of this and it does give me hope for our future. But I also know that we still have so much to learn about this virus and that this race is still not over. I am shocked that mask mandates are being removed this week and that people view their vaccine as an invitation to live completely normal again. One day, I do hope that is what it means, but until the majority have the vaccine our behaviors still matter.
I can certainly appreciate how fatigued we are all from living this way, but I also know that more people dying will be worse. I would like to think that in the last year the world has learned the responsibility we all have to one another- that our decisions impact each other - especially the most vulnerable. And that being careless, ignoring the recommendations to even after vaccinations wait to take large vacations and continue to wear your mask will in fact make all of this last longer. It will mean that variants spread and many more people will die and that the rare and medically compromised will be stuck inside that much longer.
We are no doubt very close to what I hope is the end of this race but it will take the efforts of everyone acting responsibly and yes even waiting a few more months to do exactly what you want. Because in doing so you are protecting someone's daughter, someone's mother or best friend. Please keep doing your part - know that you are saving lives by doing so, and that it will ensure we can all together cross the finish line at the end of this pandemic.
