My Reality
In 2020, my health finally collapsed.
What began 10 years earlier as unusual facial pain and vision problems evolved into a complex illness affecting my nervous system, connective tissue, blood flow from my brain, immune system, energy production, and autonomic function.
What I am suffering from is a multi-systemic connective tissue disorder that manifests in different ways across the body. For years, that made it incredibly difficult to figure out what was actually happening to me, since connective tissue is everywhere.
Our medical system is siloed inside specialties, and there is no specialty that oversees connective tissue disorders. I found doctors who could address individual symptoms, but very few who could understand how these systems were interacting. I went from specialist to specialist, sometimes misdiagnosed, sometimes told symptoms were stress or in my head, and sometimes treated in ways that simply did not help. The brain fog and exhaustion made it even harder to research, advocate for myself, and keep searching for answers.
Through a lot of hard work, I have been able to cobble together a network of medical professionals who have helped with diagnosis and treatment protocols, as they have taken a special interest in connective tissue disorders. In all honesty, I have been the one spearheading and overseeing much of this process. Almost all of the doctors doing the most promising work in this area are not covered by insurance. The primary treatments for the joint issues caused by my faulty connective tissue are all out of pocket and cost prohibitive.
Today, I spend most of my life managing symptoms, medical appointments, treatments, and recovery. Some days, simply leaving the house requires hours of preparation.
What Chronic Illness Took From Our Family
When Lauren and I met, our life looked very different.
I worked full time (and then some). We traveled a lot. We were building a future together and we were so happy. We assumed that when we eventually had children, I would be the kind of father who coached teams, went on camping trips, chased kids around the yard, and showed up for every school event.
Instead, much of our marriage has been spent navigating a medical mystery.
Lauren has had to carry a huge burden since the onset of my illness, becoming a caregiver, while pursuing her own career goals, and raising our son. She has three jobs, and she is exhausted.
My biggest hope is not simply to feel better —
It is to give Lauren more of the husband she married, and some space to breathe. And I desperately want to give Finn more of the father he deserves.
Finn is now at the age where he wants to explore everything.
He wants someone to run beside him, wrestle on the floor, climb playgrounds, go on adventures, and experience the world together.
I want all of those things too.
Some days I can do them. Many days I cannot.
The cruel reality of chronic illness is that children do not understand why a parent cannot participate. They only know whether Dad can come or Dad cannot come.
Every treatment, surgery, specialist consultation, and therapy we pursue has the same ultimate goals:
More time.
Less pain.
More energy.
More participation in family life.
More opportunities to be the father I want to be while Finn is still young enough to need me.
I left work in 2020 and have been unable to return. Until that point in our marriage I had been the sole or primary breadwinner. Fortunately, I had a long term disability policy, but it pays a fraction of what I used to earn. To Lauren's credit she stepped up and started her own consulting business that sustained us for a few years, while I fought the insurance company to pay the benefits. Eventually the consulting income was drying up, so we moved back to LA where she has the best career prospects. In 2025 I was granted Social Security Disability and Medicare. This has pros and cons that are too specific to address here.
The past six years have been marked by frustration, isolation, misdiagnosis, misunderstanding, and debilitating illness. And now, finally, there are several glimmers of hope. I am one of the lucky ones. We finally have diagnoses, a clearer understanding of what I am facing, and, for the first time, a way back.
Back to being me. Back to being present for my friends and family. Back to contributing to the world around me. Back to a life that, for a long time, felt impossibly far away.
