Recently, I got an email from a reader who noted that I hadn't published anything in a little while, and he said he hopes I'm doing well. The truth is, some days I am and some days I'm not. I want to share a little bit about what's been going on, and what the future looks like.

This is a pretty vulnerable post, so here's the deal. I'm going to tell you this, but it's just between you and me, okay? And there's one condition: you don't reach out to me to say "I'm so sorry!"

When people share stories like this, it's often met with pitying responses. These often serve to make the sender feel better, not the recipient, and it feels bad to receive. I much prefer genuine connection from people who've had or seen similar experiences, or understand what I went through, or are facing something similar.

I usually write my posts to educate, entertain, or a mixture of the two. This one is different. I'm not writing it to ask for pity or sympathy, but it's also not educational, and it probably won't be entertaining in a "this is fun to read" sense. The main thing I'm looking for here is connection, and maybe giving someone else on a similar journey something to hold onto.

So here I am. I'm alive, and I'm writing this post. It's the first post I've written in over four months. That's the longest break I've taken from writing blog posts since I started writing regularly in 2022. What happened?

what happened?

enter: pain

I've had nerve pain and tingling on-and-off since 2022. It was in my hands and forearms, and it was really sharp and really strong. If I type on a regular keyboard, this comes back with a vengeance. Instead, I started using Talon Voice for all my writing and coding, and eventually got a Keyboardio Model 100 which helps me mitigate the pain.

The pain would only come on when it was triggered by certain conditions. A physical therapist eventually figured out some shoulder positions were contributing. I knew my keyboard was contributing. If I did something the wrong way, I'd be in pain for days afterwards, but if I did everything just right, I'd go months without any pain.

The pain was with me when I started blogging regularly. The first posts in my weekly cadence were all written using my voice, not my hands. I committed code at work, pair programmed, wrote design docs, and was a very effective software engineer and leader.

The pain was a little distracting, but it was not debilitating as long as I took care of my body. Accessibility tech saved my career, truly, and reduced my pain dramatically. I could not have gotten through the last four years of gainful employment without Talon, my keyboard, and the portable ergonomic setup I designed.

I settled into a comfortable existence in my life: I had this oddball setup, it made me quirky but in a fun way. But then things got much worse.

neurology, part 1

A year ago, I started to notice some other symptoms. They were tolerable and not very distressing. But since they were a change in something that was stable, and pointed to different potential causes than the presumed diagnosis, I wanted to get checked out to be cautious.

I got a referral to neurology, and went to one of the best neurology departments in my area. We ran a lot of tests, and didn't find anything wrong. This was supposed to be relief, because it meant nothing was progressive: I shouldn't expect it to get worse, certainly not quickly. (Is this foreshadowing? It sure is!) It was also a little frustrating, because it meant we still didn't know why I had these weird sensations and pain. Three years in, no diagnosis.

My doctor told me to follow up with her in a few months, and we'll keep monitoring this. I didn't follow up, because I was recovering from a planned surgery, and I was feeling pretty good. That didn't last.

business ramps up

A few months after my surgery, I left my job of 8 years and started my business! This was a milestone I was working toward for a while, and I was excited to dive in. I loaded up my calendar with chats.

Work came in from one client, developing some software in an industry that is very privacy and security conscious. Other friends and acquaintances were happy to chat with me, and some promising leads came up. Some clients came in asking for coaching, too.

Things looked so good and promising for me and my business.

more tests

At the same time my business was starting to ramp up, so were my nerve issues. The pain started to ramp up, and so did some unsettling sensations in my peripheral nerves. This time was different. Instead of something that I could manage and mitigate on my own, it would take over my life. But I didn't know that just yet. At this point in the story, it just felt annoying.

I got an appointment with my neurologist, and went back in. She ordered more tests, and we discussed medication to manage the symptoms. Yet again, the tests said everything is normal, when my doctor and I could both clearly see that it was very much not normal.

Meanwhile, the pain got worse. A month after that appointment, I was constantly at 6 or 7 on the pain scale^[1]. I couldn't feel temperature in my hands, and my fingers were a little numb. My feet were burning most of the time. And I had so much brain fog that I wasn't sure if I could code a hello world example.

I wasn't capable of working even one hour in a week. And we didn't know why, or what was happening to me. The only thing we could do was monitor symptoms more, and cover them up.

And so I started medication. It helped, a little bit, maybe. I started using a TENS unit. It helped, for the time it was on. I started physical therapy. It helped, being forced to exercise. I worked with a dietitian nutritionist. It helped resolve other symptoms, improved quality of life.

I landed a bigger client, and ramped up my work hours. I'd go through times when I worked too many hours, landing myself back on bed rest for a couple of days after. Six hours was too many. Three was maybe doable. My life felt like it was over, in a lot of ways.

But we kept working on it, and adjusted my medication. Eventually, I felt mostly okay again.

stable

With the right medication, dietary changes, physical therapy, and (attempts at) relaxation, I got to what felt like a stable point. (Again with that foreshadowing!) I was able to take on more clients, and work more hours. That's where I am today, mostly.

I say mostly because, well, today I'm actually in pain again. I've had the weird nerve symptom precursors on and off a lot recently. My fatigue is at the gate, held off for now but waiting to storm the keep. I'm writing this post with pain in my arms, but I'm typing, and that doesn't seem to make it worse.

Neurology and I continue to be besties, working on our mutual hobby of debugging the weird things my body decides to do. I finally had some blood tests which were out of band one way, then the other way. I am having new symptoms, which gives us more leads to pull on. I'm still in pain, sometimes, but it's bearable and not constant.

I am able to do more work every day than I have since the middle of last year. But it feels a little bit precarious. That's the life of having a chronic illness and chronic pain, especially when you don't have a diagnosis and you don't know the triggers.

I have a really good life. Business is going well enough that I'm able to comfortably support my family. (That said: please do give me more business!) My personal life is also going well. And I'm making some beautiful poetry and music.

I cherish this life. I'm drinking in every minute I can. I don't know if I have one more year of playing my saxophone, or sixty more. So I'm going to enjoy it and be in the now, and worry about tomorrow, tomorrow.

what's next on the blog?

It's probably clear that I'm not coming back to weekly blog posts. Or that if I do, it's not going to be something I can rely on doing for the long haul. But I'm finally well enough that I do have the urge to write again. The urge to dive deep into tech and do weird things with it, just to horrify you all.

I'm honestly not sure what's next. I have a few ideas I want to work on, but my time is limited. My business is taking a lot of my energy, as are my personal life and some medical needs.

I might end up writing more things like this. Essays that wind through a personal topic. Dives into things like Lyme disease tests and the ways in which they're broken. Explainers about all the different pain scales.

And I might end up writing tech posts. Explain something that I learned recently. Make a silly, terrible idea come to life, and subject you to it share it with you. Expound on leadership topics and the human side of tech.

But when will it happen? I really don't know.

I had quietly launched a Patreon page this year, and I've shut that down, since I can't keep that up with all of *gestures at her body's shenanigans* this. A dream I had, and still have, is to be able to make a living from my creative endeavors. That dream seems like it will remain just a dream, but things can always change.

And yet. And yet, I'm happy.

Dreams are great, but they can't hold a candle to life itself. Life's pretty rad.

In the last few months, I've written more poetry than ever before in my life. Better poetry. Meaningful poetry, silly poetry, poems about booty calls and poems about grief.

My music has taken on more expression and more meaning. I've been able to write instrumental pieces that authentically communicate an arc I had through trauma and recovery.

Connections with people have formed, and deepened. New people have entered my life, enriching it more than I could ever have imagined. Old friends have shown me so much love and support through my hardest moments.

This isn't what I thought my life would look like. It's both harder and better than I'd ever dared to wish for.

1. If you're wondering, I think this one from Alberta Health Services is the clearest, most useful pain scale. ↩