Sad News

11 August 2017 at 04:53 | Posted in Circadian rhythm | 7 Comments

I have some very sad news. Beth MacDonald, also known as delayed2sleep, the founder and co-author of this blog, has passed away.

Beth had suffered from DSPS since childhood. As an adult she worked for many years as a school teacher, one of the most lark-oriented professions. On only a few hours of sleep she would force herself get up early to work, making up for it with a long nap in the early evening. For most of her life she did not know of the existence of DSPS. But when finally diagnosed, she made it her life mission to be sure that no one would have to struggle in the way she did.

She was for many years one of the most prolific and helpful posters on the Nite Owl mailing list. Despite having no formal scientific training, she steeped herself in the circadian science literature. In 2005 she started this blog, which she asked me to join as co-blogger in 2010. Starting in 2007 she was very active in editing the Wikipedia articles on circadian disorders. In 2011 she became one of the founding members of the Circadian Sleep Disorders Network, a patient support and advocacy organization, where she served for many years as secretary. She was also very active in the Facebook circadian groups (as Nina Beth) and on other online venues.

A someone put it the other day, Beth was the “heart and soul” of the online circadian disorders community. She was unfailingly generous with her time and energy. In my experience she was one of the kindest and nicest people I have ever met. I think I can speak for the whole community in saying she will be terrible missed.

In recent years Beth and I have focused a lot of our energy towards helping the work of CSD-N, so posts on this blog have been less frequent, although still appearing on occasion. It has been a source of happiness for both of us that so many people have found this blog to be useful. People have often told us that this was the first place where they learned that their sleep problems were due to a real disorder.

I should note that when posting on this blog, Beth maintained her anonymity, posting as delayed2sleep (or just “D”). I had to do some serious thinking about whether to break that anonymity. But in the past few years she had told me she was thinking of using her own name, as she did on CSD-N and in her other advocacy work. So I felt it appropriate to use her real name here. At the very least, she deserves to be known for the good work she has done.

I have been pacing back and forth for a good half hour hesitating to press “publish” on this post. Partly, it’s the finality of it. But there is something else, which, if Beth were here, she’d get a good chuckle out of. You see, Beth was an amazing proofreader. If you wanted something checked over for a misplaced comma or a dangling participle, you’d ask Beth. And I am sure this post has a few mistakes that could use Beth’s eagle eye. But as hard as she was on her own mistakes, she was always forgiving of the mistakes of others. So I’m not going to worry.

I do plan to continue this blog. Due to my CSD-N work and other obligations, posts may not be frequent, but I will try to post when possible, sometimes cross-posting on CSD-N. For certain, the blog will remain up as long as I am around.

And with that, I will press “publish”.

Farewell, Beth, my co-blogger and my friend.

James Fadden (aka LivingWithN24)

Advertisements

7 Comments »

RSS feed for comments on this post. TrackBack URI

  1. So sorry to hear this. She was a pioneer advocate for sufferers of this and any sleep disorder, among the most misunderstood of ‘mental’ illnesses. Thank you for carrying on with the blog, James Fadden.

  2. I was delayed but since December I have been on a 30 hour awake, 20 hour asleep weird cycle. Please explain non24. Because Wiki says it’s just 1 hour every day.

  3. James, thank you so much for posting this. Neena Beth was my aunt–my mom’s big sister; Nina was the way her name was spelled in Norway. ☺ She visited the US many times as my brother, sister, and cousins grew up, and I was fortunate enough to visit her in Bergen during my college years.

    Knowing she’s gone has been difficult; she’s just always been there, writing, teaching, studying our family’s geneology, voting absentee for Seattle governing positions. Her presence on Facebook allowed me to “see” her much more often, and I remember our conversations as smart, funny, sarcastic, and open. Your comments about her dedication to her and your community are lovely to read; I’ll be sharing this with my mom as well.

    My favorite Aunt Neena Beth story doesn’t directly involve her, though. Back in the days of anonymous chat rooms through various universities, I once randomly started chatting with someone whose “handle” I don’t recall, od course. I asked where he was, and he replied, “Norway”. I felt my eyebrows go up, and I typed back about my aunt in Norway–in Bergen–and wondered if he’d been there. He immediately responded by saying he lived in Bergen, that he’d grown up there, and was my aunt Miss Macdonald? I was flabbergasted, sat there motionless for several long moments, and then replied with a yes, and asked him how he knew her. She was his English teacher in school, and his mother–also a teacher–was good friends with her. He connected my being American with one of the only American women he knew in Bergen. I have no idea what we said next, but we were never in the same chat room at the same time again.

    I told Aunt Neena Beth that story, and she knew exactly who I had been chatting with. That was my first real exposure to how small the world was becoming with the beginnings of the internet.

    You’ve given me another facet of her personal life to know, remember, and be proud of–so thank you again. I’m very happy you’ll be continuing the work you both care so much about, and I wish you and your community the very best.

    Sarah Grant, daughter of Kathleen Macdonald
    Seattle, WA

  4. to Sarah: I am so glad to hear from a member of Neena Beth’s family, even if on such a sad occasion. There has been such an outpouring of affection for her in recent days in the circadian community. So many people are posting in our online groups to say how she helped them, often reaching out to them personally to offer sympathy and advice.

    I have a small world story to tell about her as well. After I had known her for a few years for a few years in connection with circadian issues, we got to discussing politics one day. It turned out we both had “met” each other years before, posting under pseudonyms on a political site and commenting on each others posts (fortunately in agreement!)

    While we mostly talked about circadian issues, our conversations did venture into other topics on which she always showed a lively intelligence. For example, while I do not speak Norwegian, I now know a number of phrases and quirks of the language due to our talks.

    Your aunt made an impression on many people. On my behalf, and I think I can say on behalf of the circadian disorders community, please convey our condolences to your family.

  5. to d2too: While it is more common to delay by an hour or two each day, there are definitely people with Non-24 who have much longer cycles. A 30 hour awake and 20 hour asleep cycle is unusual, but would still fall under the diagnosis of Non-24. It is also not unusual for people to start out delaying only an hour or so a day, but later on to develop a much longer cycle.

  6. To Calydon: Thank you. She definitely was a pioneer in spreading the word about sleep and circadian disorders, which as you say, are often misunderstood.

  7. What an inspiration you were Beth. Thank you for bringing sufferers of non 24 wake sleep disorder and family members together to share experiences and support one another. May you finally rest in peace knowing how much love you have given to so many people 🌹xxx


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

Blog at WordPress.com.
Entries and comments feeds.

%d bloggers like this: