My last post was about some challenges of living with MCI. Today I’m going to write about the frequent and uplifting telephone conversations I have with my sister, Karen. She lives in Florida and is six years older than me. She’s been a wonderful big sister and friend. Oh yes, I failed to mention she, too, has MCI.
So she understands.
Even with all the conversations and dates my sister and I forget, we somehow never forget to call one another at least once a week (well honestly, the consistency may be off somewhat, but we do talk very often.) During our conversations we laugh and giggle like young girls—or as some might say, like old ladies who have memory issues. We generally begin our conversations with generalities: “How’s the weather in Florida?” “Hot—it feels like summer!” “How’s the weather there?” “We’re having a wonderful summer.” “How’s Keith?” “How’s Wally?” “What are the kids up to? And the grandkids? And the ‘greats’?”
We then move to what’s really on our minds—“How’s your memory issues?” “Any new symptoms?” It’s such a relief to speak our truth and bemoan the ever-consistent progression of our ‘old’ symptoms, truthfully and openly, with someone who really gets it. The best part of our chats is our ability to laugh—at our ‘guffaws,’ mispronounced words, and time spent looking—for words or where we put an item: always in a place we were convinced we would remember the location. We commiserate over our shared exasperation of forgetting names we have known for years, of misplaced items, incidences and even our treasured family stories—then laugh out loud at the absurdness that pops up in our lives.
I always feel better, lighter, and happier when our call has ended. It’s such a welcome relief to giggle, laugh, and share our bizarre circumstances and odd actions—which we try to keep others from noticing but are free to share openly with one another. Many people try to comfort by saying “I understand,” but they cannot possibly understand. Those who mean well might offer sympathy or pity—but I’m fairly certain they are also grateful they don’t have what I have.
The joy of sharing an unrestrained conversation with my sister is both a physical and emotional relief. After hanging up I feel the comfort of speaking my truth and being heard by someone who really does understand my world, who loves me and I them.
I often wonder how others in my situation are able to sustain the stress and strain of trying to hide and conceal their condition, of constantly censoring their conversations. I find it is too exasperating and exhausting to do so. I know because I played that game for a while—but no more! I now tell the truth about my symptoms, emotional swings, and mental exhaustion: both in my relationships and in my posts. I do so with the hope that by being honest I might help others find courage, understanding and wisdom about a condition that feels shameful, embarrassing, and misunderstood. I also hope it helps loved ones better understand the physical and emotional strain of everyday living.
I’m hopeful that others can be as fortunate as I am, to have a sister, brother, spouse, or friend to share as openly as I can with my husband, children, and especially with Karen. Because she really does understand; because she and I can laugh and make snide and snarky remarks about MCI; and because she’s my big sister.