Full body support on the mattress. No sleeping sitting up.
A Typical Pain Day: What You Don’t See on Social Media
I’d like to think that much of the time, with a few exceptions, when you see me in a video or read something I have posted, you are seeing me during the more functional part of my day. Even that has become a vulnerable, moving target this year.
What you usually do not see are the hours before I can function: waking in severe pain, trying to get out of bed, waiting for the worst of it to ease, dealing with the effects of multiple pain medications, and trying to work out how to keep going.
On August 24, 2026, I documented that part of my life. It wasn’t a particularly planned thing. If you have been following me long, you know that I have been documenting my life for many years. That morning I recorded several videos, with my phone and computer, over a period of roughly 12 hours. The video below combines clips from those recordings in chronological order, forming one account of a more-or-less typical pain day of late.
The difference between the dark nighttime footage and the more composed version of me later in the day is the point.
The person you see later is real. So is the person you normally do not see. They are not competing versions of the truth. They are two states of the same person, forced to coexist in the same life.
A date correction: I mistakenly say September 24 twice in the video. These recordings were made on Monday, August 24, 2026. The mistake is corrected on screen and in the English and Spanish subtitles. It is also a small indication of how muddled my pain- and medication-addled brain had become.
This is not a dramatization. It is not scripted. It is one raw and imperfect record of what has become a typical kind of day for me. I left some of the repetition, confusion, profanity, and humor because pain and medication affect how I think and communicate. I am very clearly not operating at 100% of my former abilities. I no longer know how much more denial is required for me to imagine that decline is temporary anymore.
Pain has repeatedly commandeered the driver’s seat of my life this past year and it has only gotten more frequent. Sometimes it feels as though I am no longer even a passenger. I feel hijacked, drugged, and locked in the trunk, forced to go wherever this uninvited and unwelcome entity takes me.
Hope is real. So is this.
Most of the status updates I share on social media are brighter and more hopeful. They come from the portions of my day when I can usually function and communicate. They tend to show things of beauty and joy I discover in Colombia; love, fun and happiness. I do not want to “go dark” now on the people who care about us the most. I am still trying to build a way forward for Michael and myself.
That hope is genuine. It is not branding pasted over despair. But my commitment to transparency also requires me to show that hope is not the whole of my reality.
Michael and I have tried to describe what this does to us emotionally. We have called it a pendulum, but that sounds gentler than it feels. We have called it ups and downs, which is accurate but too kind. Emotional whiplash comes closer to the truth.
The changes can be so extreme that we sometimes wonder how two otherwise reasonably stable people can feel so profoundly unmoored. One hour we are making plans. The next, pain, a medical setback, or a new message can make those plans feel impossible. We do not believe that every intense reaction needs a psychiatric label. We do know that sustained uncertainty, exhaustion, medication, fear, and pain are taking a psychological toll on both of us.
We cannot afford to stop believing that there are reasons to hope and plans worth making. At the same time, pain can overturn those plans without warning. We want to be honest, but honesty also depends on some consistency in our lives. That is something that has been hard for us to find too.
Every morning, each of us wakes with uncertainty—not just about the result of a medical test or scan, but about whether the day itself will feel hopeful or doomed. Sometimes there is dread in simply checking WhatsApp, because another message may change what we thought we knew the day before.
This video is intended to be uncomfortable. I want it to change how people understand our situation, and I hope it may move some people to help us. The discomfort does not come from staging or exaggeration. It comes from showing something that is usually kept out of view.
There is something else I have struggled to put into words: our circumstances feel completely bizarre to us. Michael and I have never before been this helpless, this dependent on other people, or this conscious that a wrong decision—or simply one more piece of bad luck—could place us in real danger.
We know there are people whose lives make ours look like a stroll through the park. We have not lost that perspective. But suffering is not a competition, and other people’s hardship does not make us more capable of navigating our own. In the end, we can only compare ourselves to ourselves: to the people we were, the problems we once knew how to solve, and the level of control we once had over our lives.
That is the reality I wanted this video to reveal. It is not the whole of our life, not by a long ways, but it is a now-daily part that I can no longer edit out of the story.
I will write separately about what comes next for Michael and me. Our plans, the obstacles in front of us, and the financial realities deserve their own honest update rather than being crowded into this account of one pain day.
If you would like to help—or share the campaign with someone else who may be moved to support us during a very rough patch—please visit:
Thank you to everyone who has already donated, shared, written to us, offered practical help, or simply taken the time to understand. Every one of those things matters.
The need is still here. So is my determination to keep communicating honestly, as best I can, despite the pain.
To be completely honest, one of my greatest fears is that pain, exhaustion, and medication will reduce my ability to maintain this kind of communication. That is another reason I am publishing this now, imperfectly, while I still can.
Content note: The embedded video includes severe chronic pain, emotional distress, discussion of prescribed opioid pain medication, and strong language. English and Latin American Spanish subtitles are available.
