It’s been a year and a half since I heard my psychiatrist tell me I had MCI (Mild Cognitive Impairment). I remember feeling weak when I heard the words. My mind immediately raced into the future, envisioning a blank-faced, scraggly haired crone replacing ‘me.’ The next instant my thoughts returned to the present, doubting the diagnosis. For the most part, I felt I was functioning pretty well. Yet I couldn’t deny my frustrating symptoms of not being able to remember past events, missing appointments, repeating myself, getting lost in my small town while driving, losing my ability to retell stories and not remembering where I kept items in the kitchen.
For a number of weeks after the appointment, I debated with myself. Surely the diagnosis was wrong – an exaggeration. My children are totally overreacting. And while my husband Keith was more optimistic, trying to comfort me saying “its just normal aging” and “I forget things too”… I found myself arguing for the opposition—”It’s more than normal aging,” I’d say, hating the implications of my own words.
I often felt like a homeless squatter moving in and out of two different hemispheres of my ‘damaged mind’ as my thoughts jumped from belief to denial, justification to despair.
Of all the emotions I experienced, I was most surprised by my feelings of embarrassment and shame, which initially made me say I didn’t want anyone else to know about my diagnosis. Yet even while I said “don’t tell anyone” to my children and Keith, I knew I wouldn’t hold that position for long.
I have experienced the harm that can be done when people are unwilling to disclose conditions society has historically treated as taboo topics. Diagnoses that are only whispered—such as cancer, mental illness, and sexual conditions. This was true when Keith became impotent from prostate cancer at age 49. Keith’s condition was so devastating to our marriage we thought we wouldn’t be able to survive. It was then I looked for books written by couples who had gone through a similar situation. I wanted to know what people actually did to remain sexually active after sexual dysfunction. But there were no such books. As a writer I was appalled and vowed, If we ever get through this I’m going to tell our story. So others might not have to suffer as we have.
In 2002 our book Making Love Again, Hope For Couples Facing Loss of Sexual Intimacy, was published. Since then we have heard from scores of couples who have said our story has inspired them to try again, to seek help, and not give up. Couples consistently thank us for having the courage to speak openly and honestly. We always respond: It wasn’t courage that inspired us to tell our story. It was the desire to help other couples who are dealing with sexual dysfunction, to gain the courage to reframe and regain their intimacy.
It is because of this experience I knew I wouldn’t keep silent for too long regarding MCI. But still, for a number of weeks I hesitated. I didn’t want to be pitied or treated as a invalid or a person who had ‘lost their mind.’ But I’m gotten past that. I now share my diagnosis without shame and usually give a short explanation as to how I’ve been affected…short term memory, some word loss, have given up driving, BUT I can still carry on a conversation, often quite intelligently, and I can still write. As to embarrassment—well, I figure if I do something others think is embarrassing, that’s their issue, because I can’t really help it (and for the most part I am totally unaware of the embarrassment anyway).
In addition, as you already know if you are reading this post, I’m blogging about my experience. My hope is that my essays will provide hope and encouragement to others who are experiencing this condition, as well as comfort and assurance that life can continue to be joyful. Perhaps family members will benefit from reading my story. Additionally the medical community might benefit by my documenting my journey. If nothing else, they will know a little bit more about one person’s experience of the physical and emotional experience of memory loss.
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