Seven Years That Changed Everything
Diary entries of the most important moments between 2018 and today.
Looking back, it’s hard to grasp just how much has happened—and how drastically my life has changed—since 2018. As I prepare for neck surgery early next year, I’ve collected some of the key moments of the past few years into a kind of personal timeline. You can read it below.
September 31, 2018
The start of my master’s in Clinical Neuropsychology! My average week is packed: around fifteen hours of volunteer work, a few lectures, and weekly classes I teach at my youth circus. Once a week or so, I pick up a shift in hospitality. I’m active, cycling 15 kilometers to my lectures each week without a problem. I’d much rather be out on my bike than squeezed into a crowded Amsterdam metro.
September 24, 2019
The past six months have been rough—dozens of visits to doctors, physiotherapists, and occupational therapists. I’m barely managing to keep up my volunteer work, and I now follow lectures remotely. I had to quit the circus and hospitality work some time ago. Today I start a psychosomatic rehabilitation program that’s supposed to help… but ends up making me even sicker. I’m told it’s because I’m not trying hard enough. No one is looking for a physical cause anymore. I’m depressed from the constant pain and the feeling of not being heard or understood by medical professionals.
February 18, 2021
After persistent pushing and a failed rehab program, I finally get to see a specialist in connective tissue disorders. I’m diagnosed with Ehlers-Danlos Syndrome (EDS). No mention of comorbidities yet. A few months later, I take medical leave to focus on recovery. I start several therapies—three to four times a week: physiotherapy, Pilates, fascia massages... I refuse a wheelchair at first, too afraid of what others might think. I still believe that if I just work hard enough, I’ll get better.
February 9, 2023
Despite all my efforts, my symptoms keep getting worse. Finally, a breakthrough: in addition to EDS, I’m diagnosed with Myalgic Encephalomyelitis (ME), which I likely developed in late 2018. It means exertion literally makes me sick. The relief is huge—it’s not my fault I haven’t improved. During this visit, I also hear the term “craniocervical instability” (CCI) for the first time, and I’m referred to Dr. Gilete in Barcelona. There’s no more talk of returning to work. I go on long-term medical leave and now always use an (electric) wheelchair outside.
June 14, 2024
I’m now living with my partner and setting clearer boundaries. Rest doesn’t exactly make me better, but it at least stops the downward spiral. I’m learning to live with my conditions and have found a sense of peace I hadn’t had in years. I used to hate using assistive devices—now I’m grateful for the energy they help me save. With my health more stable, we reach out to Dr. Gilete for a consult and possible scans. We’re not expecting anything too shocking, just hoping for some insight into what the future might hold.
June 28, 2024
After watching a show in bed, I try to get up and walk to the bathroom. I feel drunk, swaying, stumbling. Soon, I can barely move my legs. After a check at the GP emergency service, we decide to try the neck brace—just in case it is neck instability. And sure enough: without the brace, I stumble through the hallway; with it, I walk just fine. A few days later, a neurologist dismisses the CCI theory, has no knowledge of it, and diagnoses me with a psychosomatic disorder—ignoring the clear difference the brace makes.
October 23, 2024
After a few intense days of scans in Barcelona, we get confirmation of what we already suspected: I do indeed have instability in my cervical spine. We begin discussing surgery. In the meantime, I throw myself (again) into physical therapy.
April 4, 2025
We’ve made the decision to proceed with surgery. Partly because we’re afraid things could get worse if we don’t. Months of therapy haven’t helped much. The crowdfunding campaign begins—and it’s more successful than I ever dared hope.
June 17, 2025
A sudden, splitting headache and the complete loss of speech send us back to the GP emergency service. Once again, we’re referred to a neurologist. Once again, I’m diagnosed with a psychosomatic disorder. And again, the doctor has no knowledge of CCI. But the neck brace resolves the issue immediately—proof that these latest symptoms also stem from the instability.
August 18, 2025
Happy Birthday to me! This year’s gift: stomach paralysis. This time, we immediately try the neck brace—sure enough, it allows me to eat again. But wearing it long enough to get enough nutrition isn’t sustainable. A feeding tube is placed.
January 16, 2026
It’s finally happening.
The surgery we’ve been preparing for so long will take place on this date. Of course, it’s scary. You never know exactly how things will go or what the outcome will be. But we’re hopeful that it will be a real step forward. The weeks and months after the operation will bring more clarity. Until then, all we can do is wait, prepare, and maybe—just maybe—dare to dream.
Will you help me make this surgery possible?
If you haven’t yet switched health insurers, or if you’re still shopping for last-minute Christmas gifts, you can support me at no extra cost by using shopdonation.org/cato. I receive a fixed amount or a percentage of your purchase total—without you paying anything extra.
You can also help me on this journey by donating directly to my GoFundMe.
With love,
Cato