An improvised life

I was discharged Friday after ten days in the hospital. Things finally got sorted out and I got a more appropriate diagnosis and treatment, but it is disheartening to find out just how much advocacy, knowledge and persistence it takes to get proper medical care. Having my father with me was invaluable and I am so grateful for his expertise and diligence.  I am also grateful for Nu, a longtime friend of my sister-in-law’s who looked after Alder with caring and love during my absence. A neighbor told me her son asked Alder who Nu was and he replied, “She’s a Thai person and she loves me.” With the routine of kindergarten, nurture from Nu, nightly reading with my father, and playtime with local friends and neighbors, Alder continued to thrive while I was in the hospital.     I was diagnosed with pericarditis, or inflammation of the sac around the heart. I’m not sure why I got it – it was probably something viral and I may be more susceptible to such things due to my cancer t

I met a woman a few years ago who had suffered a severe concussion that resulted in brain injury. About six months after her injury, she updated friends on her condition. Her window of cognitive capacity had increased to four hours; after that, she said, she was physically and mentally wiped out. A previously busy and involved working mother, she now rested most of the time, and had to make constant tradeoffs. For example, if she balanced her checkbook or called a friend, would she be able to manage the next part of her day?   “My doctor describes my cognitive capacity like a gas tank,” she wrote. “Mine is smaller than it used to be, or it burns up more gas to do the same tasks I used to be able to do several of.” I was almost 18 months out from John’s death when I received her update, and I recognized myself in her description. I was fighting to maintain my involvement in the world around me, but felt increasingly unable to give my children what they needed, unable

I’ve been corresponding with a friend who, like me, experienced traumatic loss. When she returned to her church, she said, people gave her forlorn looks and asked, "How are you doing?" While everyone meant well, it was stressful. Finally, someone came up to her with a smile and said, “We’re so glad you’re here.” That felt better.       I can relate, I told her. Not long after John died, I was invited to a holiday party. I wanted to go – I wanted to be surrounded by warm laughter and smiles, to soak in the good energy. But I dreaded the pitying looks and meaningful “How are yous.”  Finally, I got a marker and an 8.5” by 11” piece and wrote, “I’m ok, thanks! Can we talk about you?” I taped the paper to my chest and went to the party.   It worked. I saw people catch my eye, begin to assume crestfallen demeanor, then take in the sign and – smile! I had an evening of laughter and escape, and didn’t have to talk about myself.   One of my mother’s key pieces of