Almost Walking

Almost Walking

It’s been a rough year. I think we can all agree on that, so I thought I’d share some good news—my health has been improving lately. The other day I got out of bed and stood up three times in the span of a few hours, the most I’ve done in the last six years.

I’ve been measuring how much body weight I put on my legs using a bathroom scale. I step on the scale, and because it’s the first time I’ve been well enough to do so in years, I’m not entirely sure how much I weigh. But I am sure how much weight I can put on my legs. At first I could only put ten or twenty pounds on the scale. Now I can push off of my bed and put what I believe is all of my body weight on it. The fact that I’m able to put any weight on it is progress for me, but using all of my body weight is something I haven’t done since I became bedridden in 2015.

It has been quite a journey since then. For a long time I was too sick to speak or eat; I couldn’t even sit-up in bed or look at my phone. Now I’m eating and speaking, and hopefully soon I’ll try to walk.

It blows my mind that I’m so close to walking again. When I stand up and put my feet on the floor, the cold surface tingling my toes, it’s exciting (and exhausting) to know that all I have to do is take a step and I’ll be walking. But taking the first step is always the hardest, and before I do, I need to make sure my legs are strong enough and my balance is steady.

The tricky part about this phase of my recovery is that I can’t afford to fall. Normally I’d be willing to take the risk, and potentially fall on my face, but in the midst of a deadly pandemic, I just can’t risk getting the coronavirus because I need someone (or multiple people) to help me get up.

So I’m being very careful, going slow and safe, but I’m also staying consistent with my rehab. I’m not going to use COVID as an excuse to not make progress. I am still working hard to get better every day. I’m doing light stretches and exercises with my feet and legs before I stand up multiple times a day.

It feels good to make this kind of progress, reminding me of what it used to feel like to work out with heavy dumbbells, back when I measured my progress by how many pounds I could take off the scale. Now I’m measuring my progress by how much weight I can put on it.

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 next month.

You can read sample chapters, leave an early review on Goodreads (those really help!), and preorder it through Amazon and other online retailers, in both print and ebook. The audiobook is FINISHED! We’re just waiting for Audible and other retailers to approve it. I will keep you posted on that. For now, here is a sample of the audiobook:

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.

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

The Battle Against Bitterness

The Battle Against Bitterness

It’s hard not to be bitter.

In the macro sense, it’s hard for me because, well, my life hasn’t turned out the way I imagined it would. I’m 32 and haven’t walked in more than five years, I’ve been through intense physical and emotional trauma, and because of my illness, I haven’t been able to get married or have kids.

In the micro sense, I find it hard to not be bitter mostly because some people suck, especially online. Whether it’s someone saying something mean about me, or an editor rejecting an essay that I pitched, or just an innocuous comment that I take the wrong way. It’s all there, and it all sucks.

So how do I deal with it? Usually I sulk for a few days and eat several large bags of tortilla chips until the part of my brain that says none of it really matters prevails over the part of my brain that wants to even the score, to get revenge for every slight that has ever been thrown at me. That, my friend, is called thin skin. Do I have it? Yeah, sometimes. And I hate it. I want thick skin — the kind made of Kevlar and a flame resistant coating.

The worst is when my micro bitterness and macro bitterness combine to create the perfect storm of bitterness — when some shit head online says that I’m a burden on my family for being disabled or that my writing goes off on too many tangents (By the way, did you hear that a coronavirus vaccine is coming out soon? Oh sorry, what was I just talking about?). Right, it is this perfect storm of bitterness that I hate the most. It makes me angry about the way my life has gone, and defensive about every little negative comment directed at me.

But there’s a silver lining, and boy is it a shiny one. As much as I sometimes hate my life and all the shit I’ve had to deal with, I still have a lot to be grateful for. I’m the healthiest I’ve been in at least six years — standing on the side of my bed multiple times a day. I have people in my life who care about me and support me. I have a book coming out that has been an immensely helpful therapy session. As for all the shit heads online? They don’t matter. None of it really matters.

I say this knowing that it is exceedingly hard to change how I feel. It’s hard to flip the switch and just let everything go. It’s a constant battle to not be bitter. But it’s a battle worth fighting, a battle that I’m determined to win.

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, leave an early review on Goodreads (those really help!), and preorder it through online retailers, in both print and ebook. The audiobook will be available for preorder soon. 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.

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

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