An Interview with Phyllis Taylor
Phyllis is a local friend to the Chapter who was diagnosed with lupus in 1990. Phyllis is a Correctional Chaplain in the Philadelphia Prison system, Registered Nurse and a Certified Grief Facilitator. As a Grief Facilitator, she helps those who are ill and have difficulty dealing with grief. Phyllis has published many articles and chapters in books and has made appearances on TV and radio and has lectured throughout the country. Phyllis has received many awards for the work she has done in the prisons in the area of death and dying and for the work in her community.
We spoke to Phyllis about confronting grief and stress during this difficult time.
People with lupus are used to unpredictability, but it may be heightened due to fear of contracting illness or accessing necessary medications. How can we better control our approach to this stress?
Ask yourself what you can control in this situation. Can you stay inside, sew masks, clap for first responders, and reach out to your loved ones?
I live with lupus. Years ago, I was told to go on Plaquenil. After reading about the drug, I really didn’t want to. I thought my eyesight would be affected and a host of side effects would be worse than the drug. But a few weeks later, the pain was too much. Going on Plaquenil was the right decision for me, because projecting that my eyesight would be affected wasn’t helpful, and Plaquenil did help manage my pain.
We can’t project into a future we have no control over. Create a backup plan for what is stressing you.
Before creating this plan, remember a time where you felt secure and at peace, and envision a day where this will come again. It will come back—it just may be different.
A lot of people around the world must confront grief over a loved one, and nearly all of us have to confront grief over our past way of life, until restrictions are lifted. How would you help us navigate this grief?
Before I talk about grief, I want to talk about death. Think of death as Big D and little d: Big D is death of the body itself. Little d are the smaller indicators of death—confronting aging, losing abilities we previously had, and the many losses that come with the onset of death. Grief is inescapable. There is no choice in death, so we must accept our losses as they come. Unfortunately, you can’t move around death, above death, or under death—you have to move through it.
Anticipating grief isn’t helpful, which many people are doing today. What’s more productive is to accept the reality that this pandemic was no one’s choice.
There are rituals we develop as a society to address grief, and unfortunately some of these rituals must be postponed in the coming months. But you can think of rituals to perform now, whether you are grieving a loved one or a cancelled tradition. Years ago, a grieving group of friends and family got together with a ball of yarn. When they were thrown the yarn, they shared a memory of the deceased woman. After everyone shared, we ended up with an incredible web of yarn showing how many people this woman touched. You can put together a virtual yarn toss, start planning a future memorial, make a memory book, and find a support person for your own grieving needs.
Above all, grief is a natural response to traumatic events, whether someone you love passes away, a pandemic like this occurs, or you are diagnosed with lupus. Grief goes on forever, though over time, your experience with grief can soften.
What is a quote/saying you’ve been keeping close to you during this time?
Though I am not a ritualistic person, the serenity prayer captures what grief and stress are like: Grant me the serenity to accept the things I cannot change, the course to change the things I can, and the wisdom to know the difference.
Another saying that helps me is, This too shall pass, because it really will.
Finally, this is a chant that helps me feel more relaxed:
Be still and know that I am love [Note: you can swap ‘love’ for God, a higher power, etc]
Be still and know
I’ve worked with people in prison, people in countries with no running water or inside toilets and people in hospice for a number of years. From these experiences, I stay rooted in gratitude and remind myself of that every day.