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I work in a financial capacity for a social services non-profit and retirement community that serves a major Southern California industry. This industry is one of many which has been hard hit by the COVID-19 pandemic. The needs of the people are great, and there have been lives and jobs lost.
I believe my employer will be careful in having staff return to work on campus and for that, I am grateful. I have been very fortunate to be allowed to work from home during the COVID-19 pandemic thus far.
Human Resources is charting a course for the return of staff in the office in the coming months and is putting rules into place for how we interact in the workspace under the “new normal”. I have concerns about what that means for me, currently in treatment for CLL.
Five years ago, I revealed my SLL/CLL diagnosis to my employer and co-workers, as I am in a clinical trial requiring many follow-up appointments. I felt the truth was better than speculation on my frequent time away and I wanted all legal protections afforded to me under The Americans with Disabilities Act (ADA). While all have been generous and accommodating, they do not really understand what cancer of the immune system means, especially regarding COVID-19 and a vaccine.
Human Resources has implied that once there is a vaccine, it will be safe for me to return to work in the office. But there are still so many unknowns with COVID-19, and it is not that simple for CLLers.
There are many vaccines in the research pipeline. It seems experts are saying the COVID-19 vaccine will not be a live vaccine, which is good because people with CLL cannot take live vaccines. So, the final approved vaccine might be all right for those with CLL to try. I say “try” because we do not know how our impaired immune systems will react to a vaccine if it responds at all.
I believe our best bet for safe interaction is herd immunity. That means if most people comply and get the vaccine, they will not infect people in vulnerable populations, including those of us with impaired immune systems. We put our lives in the hands of strangers. We know some people will not take vaccines, whatever their reasons. And for those who are willing to get vaccinated, it will take time for vaccines to be readily available to the masses, and for the virus to taper off with no hosts in which to thrive and spread.
So, what does that mean for CLLers, eager like everyone else, to get back out in the world and rejoin society?
I do not know. And no one really knows for sure right now.
The question that has produced anxiety for months, is “When will this self-isolation be over?” Those of us willing to comply with the stay at home order could maintain it more easily if there was a definite end date in site. A date circled on the calendar where we could mark off the days until we safely get back to some version of our normal lives. It is not the date proposed by each state and local authority as the re-open date for your state or county. That date pertains to healthy people, not those of us with CLL. No experts are holding out on us – no one really knows what that “safe” date will be.
There have been many lessons in this global experience for those who chose to learn from them. One lesson is teaching us patience, another is to try to find peace living with uncertainty and the unknown. Another is to face our own mortality, and to forgive those who do not walk in our shoes and seem cavalier and dismissive about our very survival. And yet another lesson is to try and see the world from their point of view with compassion for their financial fears, and emotional and mental struggles with isolation and restrictions.
We have seen the best in people, and we have seen the worst to be sure. I choose to focus on seeing the best in people, and to model my own best behavior and attitude, as often as I am able.
We will continue into the unknown and with uncertainty for a while longer. I consulted my Palliative Care Physician regarding disability should my employer mandate an onsite workforce when I still do not feel safe as a CLLer. I am too young to step back from contributing to society all together. I still have much to offer. But I can offer nothing to the world if COVID-19 takes me out of it. The Americans with Disabilities Act may be my go-to path to weather this COVID-19 storm and buy myself time to figure out how I can still make my contributions to society and the people I love. Onward.
Doreen is an actor, film production coordinator and non-profit project manager living in Southern California since 1991. She is a native of Detroit, Michigan and was raised on Motown music. She graduated from Wayne State University with an MFA in Communication. Her professional career started with radio voice overs, commercials, runway modeling and automotive industrial projects produced in Detroit. She felt the creative pull of Los Angeles and drove cross country solo to continue her work in films, television, and live theatre. Doreen spends time volunteering at the humane society, LLS events, CLL Society meetings, and as a CLL patient advocate. She also enjoys films, theatre, meditation and reading.
Originally published in The CLL Society Tribune Q2 2020.