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Don't Miss: The 'Forced Intimacy' Of ALS Illness And Paralysis

This article is more than 7 years old.
Charles Dharapak/AP
Charles Dharapak/AP

By necessity, there are a whole lot more people in my life now. Most notable are the four women who come at different times and frequencies to care for my daily physical needs. These people bathe me, brush my teeth, wipe me, feed me, get me in and out of bed, and dress and undress me. As each week passes, they bore through the rock-hard walls of my self-consciousness, shyness, embarrassment and grief to move in close enough to keep me clean and safe — and I fight them at every turn, mistaking pride for dignity.

Some of those who care for me have such a well-worn familiarity with this disease that they anticipate both my physical and spiritual needs before I can imagine going there. They prepare me, and they prepare the path in front of me.

There are medical providers who know the science and my body — how it is collapsing. Two or three have also seen some of how my heart has broken. And my psychologist helps sort out the feelings I have about impending death from those that were born in ancient losses. With a couple of these, I discuss both heart and health, and they will be trusted with making the final call.

The full post is here. I encourage you to leave a comment to Holly there, and her Tumblr blog is here.

This program aired on June 28, 2013. The audio for this program is not available.

Carey Goldberg Twitter Editor, CommonHealth
Carey Goldberg is the editor of WBUR's CommonHealth section.


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