Tag Archives: suffering

Do We Ever Stop Counting?

I have been sick for twenty-seven years, today. My sickaversary gives rise to different feelings every year. Burdened. Triumphant. Heartsick. Contented. Marking the day, here with you or on my own, feels important. October 6th is the day my life … Continue reading

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#MillionsMissing Book Review: A Still Life

Today is #MillionsMissing, a day to raise awareness and make people with ME visible to the world. As part of the event, people with ME are sharing their stories on social media but instead of sharing mine I’m going to … Continue reading

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Darkness and Light

Today is the winter solstice, the longest night of the year. It’s a time of darkness in a hard winter, but also a time of light as the sun begins to return. Perhaps it is fitting that I face the … Continue reading

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Compassion

I have spent a lot of time reflecting on compassion this year. It’s been impossible not to, as I read the news each day. 2020 has been–well, it’s been 2020. I have felt such anger and frustration at the lack … Continue reading

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Always Another Chance

Toni Bernhard has published a new book, How To Be Sick: Your Pocket Companion. Whether you have read Toni’s other books or not, I think you will find this one to be the perfect fit. This book is not a … Continue reading

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How To Stay At Home

One thing I have learned during the COVID-19 pandemic is that people with chronic illness have a lot to teach healthy people. We have the skills and hard-earned experience of coping with social isolation and restrictions on what we want … Continue reading

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How You Doin’?

How are you in these quaran-times, my friends? My husband and I are doing everything possible to avoid infection because we know how scary COVID-19 can be. I have not left my house for anything except short walks in more … Continue reading

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A New Year (With Cake)

In the last weeks of 2019, social media was full of people talking about their accomplishments of the last decade, or what they were most proud of, or the biggest changes they made. These posts made me feel terrible. What … Continue reading

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NIH Funding for ME in 2019: The Details

Every year, I take a careful look at the funding that NIH reports it spent on ME research. Normally, this is mostly a number crunching exercise, but this year I wrote an entire post about a serious problem I discovered … Continue reading

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I’ll Make It Simple

Dr. Jose Montoya has been fired from Stanford University after an investigation into alleged violations of Stanford’s rules of conduct, including sexual harassment, misconduct and assault. The Stanford Daily published an anonymous statement from a group of people affected by … Continue reading

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