All The Little Victories

My right leg is extended out in front of me as I sit on the edge of my bed and slip a black Santa Cruz sock on my foot. I groan, pulling the sock up my calf, my back tightening and my hamstring burning with each tug of the cotton fabric.

I take a breath, several actually, before I repeat the maneuver on my left foot. Then I sit there, my body tired, my feet comfy, my face smiling.

This is the first time in years that I’ve put socks on by myself and actually kept them on. Before this moment, it was too painful, took too much energy for my ailing body. The juice wasn’t worth the squeeze, as they say. But now it is. Now putting on socks is sort of enjoyable. And while it still hurts, it doesn’t send my body crashing.

There have been lots of little victories like this during my recovery, lots of triumphs doing ordinary, mundane things that many people take for granted, my former healthy self included.

The other day I used a toilet for the first time since 2015. That’s probably more info than you wanted to know, but it was kind of a big deal. A big little victory, if you will.

I’ve also started wearing hoodies and long sleeve shirts again. I couldn’t for the longest time because the weight of the sleeves exhausted my arms, leaving them tired and throbbing—unable to do essential tasks like brush my teeth.

It feels a little silly to get excited about wearing socks and hoodies, and using a toilet again, but I’d rather get excited about these things than take them for granted. I just hope that these little victories continue. I’ve grown fond of them. Sometimes I fear that I’ll run out of such renewed experiences. They’re sort of addictive. There’s no experience quite like the first—the first time you ride a bike or drive a car, the first time you kiss someone or take a sip of alcohol when your parents aren’t looking.

But these little victories of mine are even better because I’m not learning how to do them for the first time. I already know how to do these things. I know how great they are. All I have to do is enjoy them.

This is all to say that while my illness is an ongoing, chronic thing, I’m grateful for the progress I’ve made. It’s weird how sometimes the victories seem like huge accomplishments—when I walked for the first time in five years—and other times they seem small. But regardless of how they seem, they all add up to something that I’m proud of.

BEFORE YOU GO . . .

1. As you may know, I’ve been looking for a new place to live, a healthier place free of wild fire smoke. So far everything I’ve seen is more expensive than I can afford, so if you would like to help take off some of the financial burden, please consider contributing here. Thank you!

2. My memoir, WHEN FORCE MEETS FATE recently won an IndieReader Discovery Award for best nonfiction. If you’d like to support the book (and this blog), please order a copy and leave it a review on Amazon. The book is available from:

US: AmazonAppleTargetBarnes and NobleGoogle PlayBooksAMillionBook Depository(ships worldwide for free!), IndieboundBookShop.

The audiobook is also available on all platforms, including Audible!

3. You can also support my blog by donating.

October Slide Part 2

Several years ago I wrote a blog post about the October Slide. At the time I didn’t know much about it and was sort of educating myself as much as I was trying to start a discussion and raise awareness. Not much has changed since then. I still wonder about this weird phenomenon where people with chronic illnesses get sicker during the month of October.

I know October is almost over, so this post may be a bit late, but generally the October Slide isn’t just limited to a single month. Many people who experience it do so through most of the fall, into winter, and the following year. In fact, some people with ME/CFS get worse in November and call it the November Factor.

The good news, at least for me, is that I haven’t been feeling that much worse this October. I’m definitely doing better than past Octobers, but I will admit that earlier this month I did notice it becoming harder for me to speak and walk. For the most part this was a small blip and I haven’t taken much of a dive, but it did make me wonder: Is this the October Slide? Is it once again coming for me?

It didn’t help that I noticed some of my friends and loved ones with chronic illnesses going through their own version of the October Slide, wondering the same thing. And then there’s the fact that, even though I wrote that blog post four years ago, a surprising number of people still read it. Every October my blog gets an influx of referrals from people searching October Slide.

So, this is all to say that I don’t have any answers. In fact, most of the year—maybe even 11 months of it—I tend to forget all about the October Slide. But then, either because of the page views on my blog or someone mentioning it on social media, it pops back into my mind.

Through such channels I have found others writing about and discussing the October Slide. While it’s good that people are still talking about it, someone (a doctor) should really do a study on it. I know a lot of chronic illness patients would like to see the data and get some answers.

BEFORE YOU GO . . .

1. My memoir, WHEN FORCE MEETS FATE recently won an IndieReader Discovery Award for best nonfiction. If you’d like to support the book (and this blog), please order a copy and leave it a review on Amazon. The book is available from:

US: AmazonAppleTargetBarnes and NobleGoogle PlayBooksAMillionBook Depository(ships worldwide for free!), IndieboundBookShop.

2. The audiobook is also available on all platforms, including Audible

3. You can also support my blog by donating directly.

I Went For a Drive

Until recently, I hadn’t been in a car for at least five years. The last time, I was so severely sick that a crew of paramedics had to put me on a gurney and wheel me into the back of an ambulance under the cover of darkness because I was so sensitive to light. They transported me to my mom’s house on top of a mountain in the Sierra foothills, where I’ve been living the last several years. I wrote about the experience in my memoir, When Force Meets Fate:

I’m put on the gurney and into the back of the ambulance. Sasha holds my hand while she awkwardly crouches next to me. From the driver’s seat, I hear the voice of the same driver from the ambulance ride I took back in June. Then I feel the paramedic’s hands wrap a blood pressure cuff around my arm. The ambulance takes us up several steep mountain roads, and we get lost a few times, but eventually arrive at the new house perched atop a mountain ridge overlooking the Central Valley. I have no idea what the new house or its view look like, but apparently they’re both pretty great. When the paramedic wheels me onto the deck, I hear him say, “Wow, look at that view.” The only view I can see is a ceiling as I’m shoveled onto my new bed.

This latest trip wasn’t as bad, but it was still difficult. The preparation began two years ago, when we had a concrete ramp built from the front deck of the house to the gravel driveway. But the driveway was so steep, we couldn’t decide how to design the ramp. We could have built it to disability standards, but that would have meant making switchbacks and possibly not leaving enough room to park the car in the driveway. So, in the end, we decided to go with a steeper, L-shaped ramp.

Next, I had to get to the deck, which, if you’ve been reading my blog lately, you know I did gradually as I began to walk again.

Getting to the deck was only half the journey. At that point, my mom decided to buy a van that would be easier for me to transfer into and provide a smoother ride once I was inside. My aunt and uncle were nice enough to deliver the van from the Bay Area. But once we got it, I still had to figure out how to get up the ramp and into the van.

I sat outside in my wheelchair and strategized. Then I tried using my power wheelchair, but despite its all-terrain features, it didn’t have enough power. I got about halfway up the ramp before the motor gave out and I almost tipped backward. I leaned forward and grabbed onto the fence post to keep myself from falling, gouging my hand on the sharp edge.

Things weren’t going well, so I tried another idea. Triple digit temperatures and wild fire smoke filled the air, so I waited for a cool night with less smoke, then I got into my larger, non-electric wheelchair, and my mom used her superhuman strength to pull me up the ramp. I was able to transfer into the van, but I was too exhausted to go for a drive.

Music: “Remember” – iksonmusic

After the trial run, I decided to wait a few days before trying again, mainly because it was still hot and smoky outside. I wanted to do it on a cooler, clearer day, at dusk, so I could see the views while we were driving. Finally, after months (years really) of waiting, I got to go for a drive.

Music: “Take it” – LiQWYD

We drove around the neighborhood for a few minutes, but there were LOTS of steep hills (the downhills gave me vertigo and the uphills made me car sick). I was ready to go home. But before I went back inside the house, I lay in the van for a while, looking up at the vast, clear sky above.

I was tired when I returned to my bed, but I didn’t crash too hard and recovered fairly quickly the next day. As I lay in bed recovering, I thought about how far I had come, what it took to get to this point in my recovery, and how there were times when I couldn’t even imagine riding in a car again. But that’s the wonderful thing about recovering from illness, it happens in ways you often don’t expect, and when it does, you appreciate it that much more.

BEFORE YOU GO . . .

1. My memoir, WHEN FORCE MEETS FATE recently won an IndieReader Discovery Award for best nonfiction. If you’d like to support the book (and this blog), please order a copy and leave it a review on Amazon. The book is available from:

US: AmazonAppleTargetBarnes and NobleGoogle PlayBooksAMillionBook Depository(ships worldwide for free!), IndieboundBookShop.

2. The audiobook is also available on all platforms, including Audible!

3. You can also support my blog by donating directly.