By Nancy Simpson – Patient
I think of myself as an aging starlet; although, I have never in my life been in a movie. I have always loved being a woman and despite the fact of being of a certain age, I love to dress up in funky leggings and platforms and put my hair in braids and dash on a streak of hot pink lipstick. I live alone.
I have had a go of it with CLL, but things are now calmed down a bit. My life was once one of in-person brunching, facilitating a CLL support group with my bestie Laura Axeloff, adoring my grandkids, and even a Match.com date now and again. I write for an international news organization on geo-politics which in these times is….crazy.
I am a happy girl. My personality drifts toward a resting place of happy, and I can reframe most any trying event to one of silver linings.
And, then COVID-19 hit. I am over 65, I get IVIG infusions once a month to support my flagging immune system; I have a chronic lung disease. If I get COVID-19, I am on a respirator or in the great beyond. And, my entire way of being has crashed.
Let’s start with this. Because the coronavirus is reported to be asymptomatic for about 20% – 45% of folks who have it, literally anyone I see could have it and could pass it to me. Curtains for me.
What does that mean? My children could have it and so, there is no inside meals with them; no Thanksgiving, no Christmas Day with the kids and the grandkids, eating cookies all day and opening presents. This kills me. Literally kills me.
There is no leaving my house for brunches or coffee with friends. There is no potluck supper club once a month that had been going for twenty(!) years. There is no Tinfoil Society, an awesome club that met once a month in my home. There is no going on a Match.com date and maybe meeting my prince charming. There is no hanging with my grandchildren. The anchors of my life are gone. And, worse yet, they could be gone for years if no vaccine or great treatment comes on the scene.
I have been sheltered in place for months, NEVER leaving my home except for my daily walk and two outside family gatherings where I sat on the far edge of the action. Psychologically, this can be so challenging even for a happy-bot such as myself. I can go to dark places of despair.
How do I deal? It goes back to when the CLL got in my eyes and I became legally blind. (Yes, this happened to me!!) One. Day. At. A. Time. In each day I look at what I have and not what has been taken. It is really as simple as that. And, powerful.
Gratitude is one of the most powerful psychological tools one can have, to deal with almost any wound or horror show of life. I am alive! That’s big considering I have had CLL for almost fifteen years. I have an awesome family that loves me and brings me groceries every single week. And, there are always treats in the bags that I would not buy for myself. And yes, I am a few pounds from my former svelte self. Ha!
The Zoom CLL support group is fun and meeting new friends at a time like this is wonderful.
I live in a lovely home with literally a wall of glass in my bedroom with a vista that goes for miles. I wake up to this incredible panorama of sky that soothes my soul. I have made friends with plants and inanimate objects. I am on a first-name basis with my pillow, my laptop, my PJs, my coffee cup, and more. They all love me, and I love them. I thank them for being my friends. Hey, do not judge we all need to have friends!
When I begin to slip and think about the holidays or feel soooo alone I tell myself it will end, there will be a treatment, or a vaccine and life can get back to normal. And, I breathe in the goodness of my life. I look at the beauty around me and I give thanks that I can see, that I have a family and friends, that I can go outside and walk every day, and that I put that dash of hot pink lipstick on if it is only for my friends, the Elvis coffee cup and Mrs. Jade A. Plant. Being thankful is better than a Xanax or a hot bubble bath. It makes my heart smile and it keeps me above water.
So dear friends, if you are struggling, I know it sounds simplistic, but this thankful stuff really works. And, having friends like an Elvis coffee cup does not hurt! Stay safe! Be well! You are loved!
Nancy O’Brien Simpson is a psychotherapist and a writer. Her career focused on forensic psychology. She ran a program using cognitive behavioral therapy in the criminal justice system working in a prison with male felons. She currently writes on the psychology of current events for an international news organization. Ms. Simpson is a facilitator for our CLL support group in Cincinnati, Ohio.
Originally published in The CLL Society Tribune Q2 2020.