Tag Archives: suffering

Grief: Too Many Words

Posted on January 21, 2016 by Jennie Spotila

When my mother died, I could not sculpt words around my grief. Even several months later, I still could not express how grief felt to me. Now, a year later, I find I have too many words to shape and … Continue reading →

Posted in Occupying | Tagged , , | 14 Comments

Saying No

Posted on December 4, 2015 by Jennie Spotila

How To Live Well with Chronic Pain and Illness is Toni Bernhard’s latest book. I’ve reviewed Toni’s previous books (here, here, and here), but over the course of years, Toni has become one of my most beloved friends. So while … Continue reading →

Posted in Commentary, Occupying | Tagged , , , , , , , , , , , | 16 Comments

A Year of Thanks

Posted on November 24, 2015 by Jennie Spotila

This year has been hard, y’all. HARD. Sometimes I think that my Mom’s death took a scoop of my soul along with her. And then just over six months later, my husband (my caregiver, my best friend, my everything) had … Continue reading →

Posted in Occupying | Tagged , , , , , | 8 Comments

21

Posted on October 9, 2015 by Jennie Spotila

October 6, 2015 was my 21st “sickaversary.” I know the date because the onset of ME/CFS in my case was so sudden and dramatic. Not a single doctor told me that I could be sick for years. Not a single … Continue reading →

Posted in Occupying | Tagged , , , , , , , , , , , , , , , | 49 Comments

A Miracle, and a Break

Posted on August 28, 2015 by Jennie Spotila

This year has been the most difficult of my life, starting with my Mom’s passing in January. Losing her was just the first in a cascade of bad news, and I made the decision to stop maintaining that laundry list … Continue reading →

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Brian Vastag to Dr. Francis Collins

Posted on July 15, 2015 by Jennie Spotila

Yesterday, an open letter from science writer Brian Vastag to Dr. Francis Collins (Director, NIH) flashed around the ME/CFS social media-sphere like lightning. Then it spread among Brian’s high profile colleagues, like Martin Enserink and Carl Zimmer. Brian’s letter is … Continue reading →

Posted in Advocacy | Tagged , , , , , , , , , , , , , , , , | 13 Comments

Wheelchair – HELP!

Posted on July 6, 2015 by Jennie Spotila

I need a new wheelchair, and I need your help! I have used a manual chair for many years, relying on friends and family to push me around. But the chair gets caught in pavement cracks, has trouble going over … Continue reading →

Posted in Occupying | Tagged , , , , , | 19 Comments

Alone in the Woods

Posted on April 13, 2015 by Jennie Spotila

I’m happy to share this guest post from Joe Landson. Man, can I relate to this! Each of us patients has that one dear relative, friend, or acquaintance – the one who tells us, repeatedly, that we can do anything … Continue reading →

Posted in Occupying | Tagged , , , , , | 27 Comments

Grief: Words Fail

Posted on April 8, 2015 by Jennie Spotila

There are a lot of things to say about grief, and I had a much longer post planned for today. But words fail me on this. And as a person whose only outlet is words (as opposed to work, socializing, … Continue reading →

Posted in Occupying | Tagged , , , , | 21 Comments

Broken

Posted on January 22, 2015 by Jennie Spotila

My mother died last night. She was a very private person, which is why I have not spoken publicly about what my family has been through in the last two years. I was thinking to write about her now, because … Continue reading →

Posted in Occupying | Tagged , | 52 Comments