Embrace the Good Days... and the bad ones, too

My sister-in-law, Barbara, is in California this week. She is visiting Stanford University Hospital to be evaluated by the transplant program for a possible kidney transplant in the future. Barbara has Lupus, Raynaud’s Syndrome, and Antiphospholipid Antibody Syndrome (an autoimmune disorder that causes her blood to form clots).

It was a very long and sometimes terrifying road to diagnosis for her with scary hospitalizations, nasty drug side effects, severe pain, and even amputation. However, despite how much emotional and physical suffering she has endured she still has a positive attitude about life.

When I saw Barbara, I was struck by how upbeat and overtly happy she was. I knew she had spent the day before having tons of tests, getting 23 vials of blood drawn (yikes!), and spending hours talking to doctors about her current condition and all the aspects of a kidney transplant. I thought she’d be overwhelmed, tired, and scared.

She was anything but! 

I told her I was surprised about her mood. She said, “You have to embrace the good days! Today my pain is low and the sun is shining!”

I questioned her about how she manages to be positive when she is lying a hospital bed or having a really severely painful day.

She answered, “When you hurt, you hurt. But when you are lying there you have nothing else to do but relax, don’t talk about it, try to laugh, and smile through it. People will smile back because you’re smiling - and it feels good. It connects us together.”

Barbara has had some lengthy hospitalizations in her chronic illness journey. I asked how she fights against the fear and pain when she’s in that hospital room late at night, all alone, and things are so uncertain.

She told me she tries to block out what’s going on with her body and let her mind take her somewhere else. “There’s a peaceful waterfall I remember from my childhood in New Mexico I sometimes visit in my head,” Barbara said. “I see the spray of the water and let myself get lost in it. It’s very soothing.”

"I go to nature to be soothed and healed, 

and to have my senses put in order."

~John Burroughs

When she’s stuck in the hospital for days or weeks, she misses her dogs Mariposa (a Papillion) and Roy (a Chihuahua). But she uses them to help her cope even though they are not there. “I’ll lay in my hospital bed, close my eyes, and really concentrate... and I can feel them curled up beside me. I imagine stroking their fur and it comforts me and helps take away the pain,” she says with a grin.

When she’s at home and is feeling a need to get away from pain and negative thoughts, she goes to the front room where there’s a large aquarium. She’ll lay on the couch, wrapped up in a cocoon of fluffy blankets and several hot water bottles, and watch the koi fish swim gracefully. “I find it hypnotic and calming, and it can really help when I have trouble sleeping.”

For the times when she is feeling better she likes to get outdoors. “I find nature to be energizing and I put what physical effort I am capable of into working our backyard garden. Last year we grew tomatoes, green beans, potatoes, and had a strawberry patch. Growing my own food is not only important for my medically restricted diet but it also gives me a real connection to nature.”

And when life gets rough and doesn’t seem to give her a break, how does she deal with depression and fear of the future? 

“Sometimes I have to remind myself that ‘this too shall pass’,” she tells me. “I think of those times like a season of the year, like winter. It will fade away. I even embrace the bad days, because I know the sunshine will return and there will be more good days. I hold on to my faith and try keep a loving heart even in middle of the rotten stuff. A loving heart and a smile fills the body with love.” 

When Barbara was suffering with gangrene and partial amputation, the pain was bone-deep and excruciating. Her gangrenous, open foot wound made it agonizing ...

to walk on carpet. Sheets and soft terry towels were laid out across the house in pathways so she could walk with a little less pain. Days of sleeplessness found her kneeling on the floor crying out for relief. When she struggled up and limped to the bathroom, something caught her eye. A towel on the floor had wrinkled up into what she saw as an image of Jesus with the crown of thorns.

Barbara says that reaffirmed her already strong religious faith, even though it was some of the worst suffering she’d ever had to tolerate. “That image of Jesus proved to me the Lord is always there. He allows the pain, but he gives strength and he endures the pain along with me, supports me through it. It was a powerful moment, a real turning point for me in living with chronic illness.”

Barbara returns today to Colorado and I send with her all my best wishes and prayers that her health will remain stable, her pain low, and her faith strong.