Since I began this blog in January, I’ve received hundreds of comments and emails in response. Many have written to express appreciation for my posts and the subsequent comments. Especially over the last two weeks, people have written to encourage me to keep writing despite the uncertainty of my own diagnosis. It’s very gratifying, of course, but I do ask myself why the blog is so helpful.
Part of it, I think, is that I try to speak honestly, and that seems to encourage others to respond in kind. Isolation is a source of great pain for both the caregiver and the person with Alzheimer’s (or other cognitive impairment). This is still a disease that provokes shame; most people are afraid to speak of it or relate to it, which leaves both the person with Alzheimer’s and their caregivers alone with their disease. But here in this blog, the taboo can be broken, and we can think and speak more openly, sharing with one another, overcoming to some degree our isolation. For some readers, it seems that the embarrassment and humiliation are so acute that simply reading here about others’ openness and honesty is cathartic.
I’m reminded of Alcoholics Anonymous (AA), actually. A close friend suffered from alcoholism for many years. Before she got sober, I suggested a few times that she attend AA. No, she said. She wanted to get sober on her own. She didn’t want to be with those people. She tried to stop several times on her own, but it was only when she finally started going to AA that she began to recover. AA very quickly became the lifeline that enabled her to stay sober. For many years she went at least daily (sometimes several times a day), even when she was traveling. Today, years later, she still goes almost every day, and many of her friends are exactly “those people” she previously didn’t want to associate with.
AA is many things, but at its heart it’s a place where alcoholics can share openly about the day-to-day struggle to remain sober. There’s no “cross-talk,” that is, no one criticizes you, gives you advice, or even comments on what you said. Meetings are confidential, so members feel safe to speak candidly. Much of the miracle of AA, it seems to me, is simple: if I can talkwithout fear of censure about my pain and if others will simply listen and understand, my pain becomes more bearable.
I wonder if this blog doesn’t operate in somewhat the same way. Emails sent to me personally and comments on this blog frequently commend my “honesty” in describing my own struggle with my impairment. Part of what they are referring to, I think, is that they have no safe context in which they can speak openly about their experience: their fears, their grief, their mistakes, their anger, or even their joy. It’s not difficult to speak honestly when we feel secure and protected, so I’m assuming that those who find my candor helpful don’t have many places where they feel safe enough to speak honestly. They have no Alzheimer’s Anonymous.
Actually, there are groups all across the country that may be the equivalent of Alzheimer’s Anonymous. The Alzheimer’s Association has lists of groups for caregivers and increasingly of groups for those with impairment themselves. The groups are sorted geographically so that you can find one in your area. People write that these groups can be their lifelines. But too many people, I suspect, continue to struggle in isolation.
We all need a place where we can share without fear about the realities our experience, where another person will listen without judgment. This blog is one such place for me. It’s my hope that each one of us touched by this disease will find his or her own place to speak and be heard.