Mourning the end of an era, and #NotEnough4ME

Five years ago yesterday was the last day of my last job, the end of my professional life, and the start of my life as a disabled person (although I didn’t know at the time that it was the end, and it took me a long time to call myself disabled).

My last full-time, professional job (as opposed to the random jobs, like pet-sitting, that I had been doing to make some money), I had been teaching at a large university in my state, and the third semester “broke me”.

My recollection is fuzzy on how I felt and what I did, but I can tell you definitively that I knew I had no choice but to quit. And it hurt to admit that, and it hurt to actually resign. I loved teaching. I loved my students. I loved sharing what I had experienced during my 20+ year marketing career to people who wanted to learn.

But my health said ‘nope’.

By October, two months after the school year had started, I knew I could not continue. I resigned so the college could find a replacement for my spring classes, but I finished the semester anyway – I was NOT gonna leave my 150 or so students in a lurch, or cause hardship for some new instructor.

December 14, 2014, five years ago, I was done. I’d turned in grades to the school and uploaded grades and feedback to the online learning management system for my students.

And… I collapsed. I became a full-time Sick Person. (I tried to do some things; but ultimately they just made me worse.)

So today, I mourn the end of an era of my life – the end of my career, and my identity as a working person.

I thought it was going to be temporary. I thought I’d figure out what was wrong with me, and get back to work. But that didn’t happen.

Losing my identity around my career has been difficult. After all, I’ve been paying my own way since I was 14, and my first on-the-record job was in 1987, typing up pledge cards – on a typewriter – for the United Way of Palm Beach County (photo above, on the left). I thought by now I’d be the Executive Director of a non-profit, or the VP of marketing for a big company, but nope. I’m a stay-at-home, full-time Disabled Sick Person.

No one tells you that there are diseases that doctors can’t identify or treat. Everyone knows about “fighting cancer”, or having an easily-seen physical disability, but no one seems to acknowledge this middle place of invisible illness, of a disability that will never go away.

And of course there’s the rhetoric that your worth is based on what you produce.

Which is not true.

It took me a long time to see that.

And even though it’s been five years, sometimes I don’t think I’m really that sick, until I go to a doctor’s appointment, and am paralyzed and cannot move when I get home, and my husband has to literally drag me out of the car and carry me to the bathroom and bed. (True story; it happened Wed, Dec 4.)

And when I get upset when a new symptom appears, or something gets worse, I feel like perhaps I’m not being grateful enough for the fact that my disease is not far more debilitating.

I’m mourning, but I’m also somehow moving on, tolerating the fact that I’m sick, accepting that I am enough, and using what little energy I have to advocate and share my struggles so that others know they are not alone.

And for 2020? I hope to continue posting a blog on the 15th of every month, as I’ve done this year (with a few exceptions where I posted late), and continue to write in my Gratitude Journal [affiliate link] every single day (which I’ve managed every day this year but one, where I fell asleep and forgot).

There’s more I want to say, but it’s 9:27pm on Sunday, December 15, and I’m very very tired and the nerves in my back are on fire and my head is pounding, so I guess I’ll just leave this post be. It, like I am, is perfect as it is.

If you’ve read my blog at all, you know that part of my raison d’être is shining a light into the dark places in our world, so that we can acknowledge and stop them, something I’ve been trying to do since I started this blog.

I’m also a patient with moderate-severe Myalgic Encephalomyelitis (MEcfs), a nuero-immune disease with no known cause, no treatment, and no cure.

I’ve only had MEcfs full-time for the past five years (tho I’m certain I had it at least three years before I “broke”; I just didn’t realize I was sick, in what is known as ‘gradual onset’) – but there are people who have been sick for decades, such as advocate Wilhelmina Jenkins, who fell ill in 1983.

And in all that time, very little has been done to help #pwME (patients with ME); in fact, mostly the disease and its sufferers have been derided and ignored.

That’s where #MEAction comes in – doing advocacy to try to get “recognition, education, and research” for MEcfs.

The latest collective action from #MEAction is a campaign called #NotEnough4ME, targeting Dr. Walter Koroshetz, Director of the National Institute of Neurological Disorders and Stroke (NINDS). Simply put, Dr. Koroshetz is the single-most influential person at the National Institutes of Health (NIH) who stands in the way of a bigger, bolder, faster response to the ME crisis.

#MEAction sent him a letter regarding the NANDS Council Working Group report on ME/CFS research (60-page PDF; dated September 4, 2019), outlining a list of demands (PDF; dated October 22, 2019) for #pwME.

Unfortunately, Dr. Koroshetz’s response (PDF; dated November 4, 2019) was, well, #NotEnough4ME: “He did not agree to any of our demands. He repeats the list of insufficient activities NIH had previously announced and recycles the same empty bureaucratic excuses that NIH has been giving us for decades. We can’t let this stand. We know the actions that NIH needs to take to end this crisis and save lives. Koroshetz’ “plan” for ME, and his response to our demands, are NOT ENOUGH.”

On Monday, November 18th, as part of a community virtual action, lots of people in the community posted videos (which you can view on youtube) with the message that the NIH is failing us, and a request for people to Sign the Petition requesting more funding and research.

This is my video, which I almost didn’t do because I felt so terrible, and I didn’t have my voice:

(And I wanted to delete the last second, because it’s too heartbreaking, but I couldn’t figure out how to do it.)

I am so honored by all the responses to and shares of my video, which I posted on twitter and Facebook.

However, it both saddens and angers me that so few people (under 7,000!) have signed the #MEAction petition. I saw a petition where some town in England is upset over new decorations in the town square – signed by over 10,000 people! Why and HOW are decorations more important than the lives of those of us who live daily with this horrible disease!? Please take a just a moment to add your name to the petition!

Another Way to Help

This holiday season, send Dr. Koroshetz a card asking him to take immediate ACTION to end the crisis of Myalgic Encephalomyelitis (ME) after 30 years of neglect.

Follow these easy steps to participate! Let him know he is not doing enough to fund and accelerate ME research. Our community deserves URGENT ACTION. Like Sarah, here, a bed-bound MEep who has posted and sent her card:

The only Santa I want a gift from this year is @NINDSdirector Santa. And the only gift I want is research funding for #MyalgicE. Don’t give us coal like you have every other year. ‘Tis the season to take real action to end this awful disease. #FightingForOurLives #NotEnoughForME pic.twitter.com/eayPEcdeMP

— Sarah Stanton (@theduckopera) December 13, 2019

(Note: much of the language in this part of the post is taken from #MEAction’s campaign page.)

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Before you go:

I’ve never had ads on my blog, and never wanted them, but it’s expensive to have a website, what with the domain registration & hosting fees. And I haven’t been able to work in exactly five years, and I get no disability benefits – and my medications and supplements alone cost me more than $300 a month!

If you found this post useful or inspiring, please consider supporting me and my ramblings:

• with a $3 tip at ko-fi.com/dsavannah. Don’t forget you can set up a monthly tip, thanks to the person who gifted me Kofi Gold!
• by donating via paypal
• or sending me something from my Amazon wishlist (now conveniently separated into categories: Miscellaneous stuff., books for my hoard! , dSavannah’s health needs, low priority: crafty stuff, and music I’d like).

Your support keeps me going, even in tough times. Thank you for stopping by my blog.

THANK YOU! to a friend from college who surprised me by sending me three Terry Pratchett books [affiliate link] off my wishlist! (only my Very Favorite Author).

And a big THANK YOU! to everyone who donated in the past month to the organizations who are fighting so hard for #MEcfs research: the Open Medicine Foundation, SolveMECFSInitiative, and #MEActionNet, an organization that focuses on advocacy. Donate online with a credit card, giftcard, or paypal!

Also note: through December 31, all gifts to SolveMECFSInitiative will be TRIPLE MATCHED!