Month: August 2023

re·sil·ience\ri-ˈzil-yən(t)s\ noun:

• : the ability to become strong, healthy, or successful again after something bad happens

“We think that Roger has dementia.” This diagnosis  broke my life into pieces. Grief, fear and powerlessness became my daily companions. Roger, my husband, had recently fallen and been knocked unconscious.  His affect, memory and behavior had changed, and the working hypothesis was that he had a brain injury. But even with rehab and therapy he did not get better.. He was diagnosed with Lewy Body dementia. Imagine Parkinsons and Azheimers together. My care giving journey began in earnest. I was tired. I cried. I raged. I felt numb. I was afraid of breaking into pieces and never being whole again.

I was like Humpty Dumpty! He fell off the wall and could not be put together again.He was not resilient, he shattered and there was no recovery. In 1871, Alice,in Lewis Carroll’s “Through  a Looking Glass” reached for an egg in a shop and saw human features on it. She declared that it was Humpty Dumpty, who as an egg was very fragile and easily cracked and broke open. Was Humpty Dumpty pushed off the wall he was sitting on, or did he jump or was it a horrible accident? Life can certainly knock us out of our secret and secure hiding places. I was pushed into caregiving by a disease that was relentless and had no remorse. I did fall apart many times but I got up one more time then I fell down. I attended a support group for caregivers and the group members kept me going when I didn’t see how I could. When I stumbled, the arms of the group members were there to help me right myself.

My sister worked in an egg packing plant checking to see if eggs were fertilized. A light was shined on the eggs and they became translucent. Inside the egg, developing embryos could be seen and then those eggs were placed in incubators. It is the yolk that provides sustenance to the growing  embryo.  There is no way to scan humans for resilience and no way to know for sure if we are growing through the pain. What sustains us? Grief takes and takes from us, but are there things that grief gives to us?

When my caregiving journey ended I didn’t know who I was if I wasn’t a caregiver any longer. My shell certainly had some big cracks in it, but I held together.  With no caregiving to do I was lost, but I had this newly freed time to finally rest and grieve without guilt. Hard boiled eggs don’t crack or break as easily, but resilience is not about becoming “hard”. Learning and changing required that I remain open to pain, but not hardened by it. My caring for Roger transformed me, I was stronger, more flexible and more compassionate. My perspective on what was truly important had changed. Caregiving stripped a lot of “important” things from my life. I couldn’t “will” things to turn out the way I wanted them to. Running away and denial were tempting options of course, but I made a conscious decision to stay and care for the man I loved. 

I accepted the gifts of grief which enabled me to use my caregiving experience to facilitate support groups for caregivers of people with dementia. What a gift it was for me to be a resource for other caregivers!

I’m sitting in a coffee shop and watching  a young adult with Down Syndrome. playing with a rubber frog. He is holding it upside down and shaking it so it’s legs move making the frog look alive.He hasn’t set it down for the last hour. It soothes him and calms him, but it makes me nervous as hell! I think he’s lucky that he’s found a way to soothe himself,  but most of us have a much harder time figuring out what can relax and comfort us. I’ve tried those things we call “self-medicating”, like booze, drugs, food, and sex.  They  seemed to work for awhile, but soon  the solution became part of the problem. If  you’re numb, even destructive behaviors that bring pain can be more appealing than feeling numb. I watch him leave with his frog and I’m shocked to realize that I’ve been concentrating on the frog for quite awhile. I’m surprised at how it got my attention. 

I move and fidget when I’m anxious. The frog is pretty fidgety too!  I pace, drum my fingers and tap my foot. Sitting still is so hard for me. I always feel better after I take a walk, or run. This seems to clear my head or help me see solutions. If I work hard physically the kind of tired I feel makes it harder for me to get deep into my anxiety. It’s amazing what I can do to distract myself. I’ve even been known to clean house to ward off anxiety. I love to read and a good novel can suck me right in. My meditation practice can be pretty inconsistent, but when I do it I do feel better. This requires sitting still, so I have to slow down enough and be motivated enough to sit still and clear my mind. I am so fortunate to have a dear friend who has a black belt in listening and punching holes in my crazy thinking.

Dealing with the symptoms of anxiety is important, but still reactive.  I need to be proactive in my understanding the causes and origins of my anxiety. Why do I feel the way I feel? What am I thinking? What stories am I telling myself? In 12 step programs they talk about  “rigorous honesty”. Recognizing, facing and dealing with trauma requires a deeper commitment to get up close and personal with my pain, but my first instinct is to avoid pain. I think looking forward is positive, but I can’t move forward if the past is putting the brakes on and still in control. How do I understand and change the stories I tell myself?  First I have to hear what my stories are.  When I can do it, sitting quietly and meditating in the “sound of silence” can help me hear my own stories of victim hood,  aggrievement and self-hate. I can then challenge myself to see how these “truths” are really lies I tell myself. I think myself into a feeling and then the feeling changes my thinking, what a closed system of dysfunction! Breaking this cycle is critical to lowering my anxiety level. Writing is an important way I discover what I am thinking. If I write quickly without sensoring myself, and not paying attention to punctuation or grammar, I can write without time to edit and  correct myself. The truth is more likely to come out of this unstructured writing.

One thing I know for sure is that worry does not add anything positive to my life and takes my attention away from today . Worrying is not taking action against my anxiety, though I may feel if I worry enough I will be prepared for the bad things that will inevitability happen. I don’t want to be surprised so I worry proactively. There is no guarantee, as we all know, and so much is out of my control. What if I decided to stop worrying so much? That makes me nervous and I could even start to worry about worry. Right now I don’t know how to stop practicing worry.

So where can I find that frog for myself?