Tag: sickness

mecfs, Personal, Political

My Book is Officially Published!

by JamisonWrites.com
My Book is Officially Published!

Today is a big day — my memoir, When Force Meets Fate, is officially published.

In addition to more than 70 reviews on Goodreads (4.66 stars), When Force Meets Fate has already received some solid press coverage. The Press Democrat did an excellent piece on the book, and it also received a glowing review in the Providence Journal.

I won’t say that I’ve been dreaming of this moment since I was a kid, because I probably cared more about firefighters back then, but I’ve definitely been imagining this moment for a long time. Over the course of the decade it took me to write When Force Meets Fate, there have been countless times in which I thought the book would never be published.

There was the time my laptop stopped working, and I lost all my drafts, only to miraculously recover one from an email. Then, of course, there was the eighteen month stretch when I was so sick I couldn’t speak, let alone finish writing the book.

There have been so many obstacles that could have prevented me from publishing this book, and in the end, I had to finish writing it on my phone, at times wearing tanning goggles because the screen was too bright. That should tell you how important it was for me to share my story. The thought of it has kept me going when I couldn’t speak or eat, when I very much thought death was lurking around the corner.

Little did I know, writing the book wouldn’t be the hardest part. Once I finally finished it, I had to find a publisher. It was a long and grueling process, which took up most of my free time from 2016 to 2019 (another story for another day), but I eventually found a publisher, and just as fate made me face the obstacles I wrote about in the book, it has now allowed me to share my story with the world.

Many, if not all, of the wonderful people who preordered the book have now received a copy. It’s a marvelous thing. But suddenly I’m seeing people reacting to something that, for such a long time, has been mine and mine alone. Now it’s out in the world and people are sharing their opinions of it through Goodreads reviews and Bookstagram posts.

These opinions have been overwhelmingly positive, but there have also been a few harsh criticisms. While many people have called my memoir the best book they’ve read in a long time, praising the story for its “honesty and openness,” others have said it’s not for them, calling me self-destructive and “navel-gazey.”

Although I expected this, I didn’t fully grasp how it would feel. I knew there would be both good and bad opinions of the book, but now that I’m actually seeing the opinions, I find myself trying to cope with the fact that two people can have such dramatically opposing opinions of the same book. This realization hasn’t exactly made the negative reviews any easier to read, but I have found peace in knowing that if I had changed the book to appease one set of opinions, it would have created an entirely new set of negative opinions.

Through this, I have also realized a simple truth: my book can’t mean everything to everybody, but it can mean everything to me. And now it does.

BEFORE YOU GO…

1. As I just mentioned, WHEN FORCE MEETS FATE is now available for order. If you’d like to support the book please leave it a review on Amazon and Goodreads. Also, here’s a list of places to order the book (by country):

US: Amazon, Apple, Target, Barnes and Noble, Google Play, BooksAMillion, Book Depository (ships worldwide for free!), Indiebound, BookShop.

Canada: Amazon, Kobo, Chapters/Indigo

UK: Amazon

Australia: Booktopia

Mexico: Amazon

Germany: Amazon

Norway/Sweden: Book Depository, Adlibris

2. The audiobook is also available on all platforms, including Audible! Here is a sample of the audiobook:

3. You can also support the book by donating to help pay for the audiobook and publicist, expenses that will have to come out of my own pocket.

lyme, mecfs, Personal

The Art of (Not) Accepting Unsolicited Advice

by JamisonWrites.com3 Comments on The Art of (Not) Accepting Unsolicited Advice
The Art of (Not) Accepting Unsolicited Advice

The last time I checked my Facebook messages, some guy called me a “fucking idiot.”

He sent me a barrage of messages pushing unsolicited medical advice, one of many such people who, for some reason, feel the need to give their unqualified opinions about my health. In the years that I’ve been writing about my life and my illness, I’ve learned that this sort of unsolicited advice comes with the territory. I don’t like it, and I rarely, if ever, accept it. But that doesn’t stop it from happening.

So, instead of letting it upset me, I’m trying a new method of dealing with it. I laugh it off. I don’t take it seriously. My response to the guy who called me an idiot for not taking his “miracle mineral supplements” was to laugh and tell him that he sounded angry. Because he did. He sounded very angry. So I blocked him.

But he was undeterred. He sent me another message from a different account:

Like I said, he was an angry guy (and ignorant. I hate people who use the “R” word). So I blocked his second account, which probably just made him angrier. But he deserved it. And it saved me from getting upset, which is my preferred way of ending a conversation. I’m sorry, but if a random stranger slides into my DMs and tells me that some bullshit supplement, one probably filled with baking flour, is going to cure me, then I absolutely reserve the right to reject him. And if that pisses him off, then he needs to rein in his messianic complex.

For me, it all comes down to the simple truth that if I don’t take unsolicited advice seriously, I won’t get upset that random strangers with no credentials or medical training think they know what’s best for my health.

I do believe their hearts are in the right place though. Well, maybe not the angry guy. But some people genuinely care and want to help, they just don’t know how. It takes an obscene amount of arrogance and ignorance to think they can heal me without any proper medical training.

It starts to feel like I’m hanging off a tall building and first responders are trying to save me while a bunch of people block the way and stand over me offering bogus supplements and glasses of celery juice instead of letting the professionals do their jobs.

I’m not the only one who has been annoyed by a whacko who read a book on the healing power of artichokes or a high school dropout who works the bottom of a supplement pyramid scheme. As frustrating as it is for me to receive this unsolicited medical advice, some people get it much worse.

Recently I came across a story of a biology professor at the University of Oregon who died of lymphoma. As the biology professor, Jeff McKnight, neared the end of his life, his story spread online and his wife, Laura, tweeted a plea for people to stop sending her treatment advice. McKnight was being treated by top oncologists, yet ordinary people with no qualifications still felt they knew better, that they had some secret treatment that would save him. And worst of all, he was literally on his deathbed and, instead of giving him and his family the peace and privacy they deserved, people were bombarding them with nonsensical medical advice.

It reminds me of a similar, only slightly less enraging story, which I heard on a podcast. The hosts, Rhett and Link, spent an hour talking about their childhood friend, whom they loved. He developed ME/CFS, the disease I suffer from, and later he was diagnosed with testicular cancer. Rhett and Link visited him while he was battling the cancer. They were very religious at the time, but their friend wasn’t. And because he wasn’t, they felt the need to convert him before he died. As they described, they felt a need to save his soul because they loved him and were worried about what would happen to him in the afterlife. Their friend wasn’t very receptive to their attempts however, and at one point his sister asked Rhett and Link to stop preaching to him. So they did. Eventually their friend passed away, and now looking back on it years later, they felt remorse for having pressured him.

It’s obvious that they were coming from a good place, yet I couldn’t help but put myself in their friend’s position. I would have been disappointed that my friends were spending my final moments on earth trying to convert me to their religious beliefs.

This is all to say, there’s an art to not accepting unsolicited advice. Sometimes it’s just easier to pretend to accept the advice. I’ve certainly done that, but I almost always resent it afterward. Then I explode and unleash a harsh reply on some poor soul who was “just trying to help.”

The alternative is not taking it seriously, laughing it off. I don’t know if that’s the best way to deal with unsolicited advice. But so far it feels like the best way, maybe the only way, to preserve my sanity.

It’s the only way I can cope with the fact that some people will never get it. They’ll never stop forcing their opinions on people. But they really should stop. For everyone’s sake.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, is going to be published in January.

You can read sample chapters, add it on Goodreads, and preorder it through online retailers, in both print and ebook. The audiobook will be available for preorder soon. Here’s a list of places to order the book (by country):

US: Amazon, Apple, Target, Barnes and Noble, BooksAMillion, Book Depository (ships worldwide for free!), Indiebound, BookShop.

Canada: Amazon, Kobo (soon)

UK: Amazon

Australia: Booktopia

Mexico: Amazon (Sorry, no Spanish translation yet)

Germany: Amazon

Norway/Sweden: Book Depository, Adlibris

Brazil: Amazon

mecfs, Personal

Advocacy and Acrimony in the ME/CFS Community

by JamisonWrites.com2 Comments on Advocacy and Acrimony in the ME/CFS Community
Advocacy and Acrimony in the ME/CFS Community

There is a rift in the ME/CFS community. And as tempting as it is to get into the details and vent about it, I’m not going to because I don’t want to deepen the divide. Though if you’re reading this, you probably already know about it or can easily figure it out.

The thing about these types of internal conflicts is that although they’re unpleasant, they’re also indicative of the broader state of the community. We are frustrated and angry, and when no one else will hear us, we sometimes take it out on each other. The frustration shows on our faces, creeping out from within us, pulsing through our fingers as we type out our thoughts.

In many ways, this frustration is counterproductive, but it may also be part of the advocacy process, however unfortunately. It reminds me of a scene in How to Survive a Plague, an Oscar-nominated documentary about the HIV/AIDS crisis. The scene showed a room full of passionate HIV/AIDS activists, many literally dying from the disease, screaming at each other. I don’t remember exactly what they were arguing about, but I suppose that makes a larger point. The collective frustrations in a group are more memorable than any one particular issue that is disagreed upon. Five years from now, heck even in a few months, most of us won’t remember what this latest conflict within the ME/CFS community was about. But it’s almost certain that we will still be frustrated, still angry that we’re sick, still pissed that we’re struggling to get the resources we need.

I suppose this is indicative of something else too. We may disagree on certain things, various issues that may or may not eventually fade to the recesses of our minds, but in truth, we agree on far more things and far bigger things than we disagree on. And ultimately we all agree on the most important thing: the need for a cure. In the disagreements that I’ve had with other patients in the ME/CFS community over the years, I’ve never disagreed with anyone on the fact that our illness needs more research funding and more treatments. These basic needs will never be disagreed upon within the community, and it is especially important to remind ourselves of that when things get heated.

We all have the same goal, some of us just have different ideas about how to get there, and some of us cope with our frustrations in different ways, some unproductive ways. I’ve been guilty of this at times, publicly venting about the egregious fees that doctors charge or verbally sparring with other patients about the best way to advocate for our cause. So I don’t take it personally when someone else does these things, even if to a greater extent. I do, however, wish to quickly get back to a more harmonious effort, a unified chorus that should always prevail, one that can serve to heal any internal fractures.

BEFORE YOU GO… 

1. Thanks for reading! If you haven’t already, please follow my blog.

2. For those who haven’t heard, my memoir, WHEN FORCE MEETS FATE, has a new cover and my wonderful friend Stephanie Land (NYT bestselling author of Maid) has written the foreword to the book.

It is now available for preorder through many online retailers. The ebook should be listed soon and the audiobook will be available for preorder this fall. Here’s a list of places to order the print version (by country):

US: Amazon, Barnes and Noble, BooksAMillion, Book Depository (ships worldwide for free!), BookShop

Canada: Amazon, Kobo (soon)

UK: Amazon

Australia: Booktopia

Mexico: Amazon (Sorry, no Spanish translation yet)

Germany: Amazon

Norway/Sweden: Book Depository

Brazil: Amazon