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New York Times: Love means never having to say anything......a relationship ME-style


Senior Member


Love Means Never Having to Say … Anything
A relationship between a young man and woman with similar illnesses presents unusual challenges. For starters, he can’t speak.


CreditBrian Rea
By Jamison Hill

  • May 25, 2018
After dating Shannon for several months, I needed to say something to her, but I couldn’t. It’s not that I was nervous or unsure of the phrasing. It’s that I couldn’t speak. My lungs and larynx couldn’t create the air pressure and vibrations needed to say the words floating around my mind.

This is our reality. I can’t talk to Shannon about anything — not the weather or her day or how beautiful she is. Worst of all, I can’t tell her I love her.

RWP (Rest without Peace)

Senior Member
First, let me say how elated my wife, @PWR (Peace without Rest) and I were that Jamison got this one published in the Sunday NYT (and online). Since this came after the Unrest movie and #MillionsMissing demonstrations, we hope that the increased awareness of ME will make this article more effective in moving people to action due to its portrayal what it's like to live with ME.

Also, for PWR & me, this one struck a familiar note. We gave been sick for 31 years now, with a considerable amount of it at the severe level of disability (at an activity level of 0). There have been other periods, due to nonconventional cancer treatment PWR underwent (and I did as well, though I did not have cancer) when we functioned even better (I made it up to a 8 and PWR increased to maybe a 4).

Similar to Jamison, we both got mono in our early 20's: PWR was in her (our) last semester at the Conservatory; I got it in my first semester of seminary, about 6 months later. So, for our whole married life, we have dealt with at least one of us having this disease. We have learned to love each other and work together despite many years when PWR couldn't talk. For me, when I talk at the wrong time, my body crashes and I'm unable to function for hours and days afterward. So we could certainly relate to those dynamics.

Since I am PWR's primary caregiver, we have the added issue of her health problems making me worse and vice versa. It gets pretty complicated to figure out a rest schedule that fits us both.


PS. I've recently edited the Activity #s since my inital post because I couldn't remember the details and just guessed.
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