Since Zach’s vlog announcement of his Ankylosing Spondylitis (AS) diagnosis in September 2018, the video has been viewed over 4.9 million times (as of time of this publication).
In part one of this series I talked about Zach’s story’s impact, the validation that came with his diagnosis, and lessons learned living with a disease that is always beneath the surface.
In part two I dive deeper into Zach’s decision to announce his diagnosis on YouTube, his approach to coping with AS, and whether he calls himself an advocate. Finally, I’ll share his exclusive message to the AS community.
Before I continue, I want to clarify that I am neither doctor nor medical professional. None of the following should be taken as diagnostic, medical or treatment advice. Please consult with your physician before starting, stopping, or changing treatment.
My father died last September. He was 68. He experienced severe, debilitating pain from his early teenage years until his death. I now experience similar pain from the same disease he had, Ankylosing Spondylitis (AS), and I fear daily that my life will follow the same path his did.
My dad looked like this (below) because he did not have access from a young age to effective treatments to slow down the progression of his disease:
He didn’t have access to the treatments because they didn’t exist until 2003, when the first biologic drug was approved for treating patients with AS. By that time he was already a 90-degree hunchback, his spine fused in a rigid column of bone from knobby, painful bone spurs – he was slowly suffocating. The only thing a biologic drug could do was prolong his life and perhaps reduce some of the symptoms.
He died after two surgeries meant to straighten his spine, relieve his organs from being crushed, and give him a more horizontal line of sight. He’d been looking straight down at the ground for decades, unable to see in front of him unless he pivoted his body backwards with one foot pushed toe-first into the ground.
On April 14, 2015, I was reeling after a week of severe psychological episodes that included a trip to the Emergency Room. I was referred to a group day program that I walked out of because it was not what I needed. An awkward visit to a very clinical psychiatrist began my medication journey – I walked out of Rite Aid with two new prescriptions and new additions to my medical chart. I could no longer take care of myself without medication to help treat severe trauma and depression triggered by recent events. I had officially become mentally ill. I walked home shaking my pill bottles like maracas and finally felt there was help for me, then wrote these thoughts:
I know what it’s like to call out and have no one truly hear me
For the pain flooding my brain
I know the brokenness of a body grieving
The flashbacks of a mind recalling trauma
I also know what it’s like to finally be heard
And the help that comes
Sometimes too late
And never too soon
And the final, often fleeting, feeling of safety
One year later I am finally with a psychiatrist I trust, who provides what I need: one-on-one counseling in addition to superb medication management.
I have Severe Major Depressive Disorder and Post Traumatic Stress Disorder. I do not bow to stigma and I am not ashamed. There is no doubt in my mind that I need medication to help me process trauma and grief on a level playing field with my brain. I am not suicidal and never have been, but one doesn’t need to be suicidal to get help.
I owe a lot to my loved ones and friends who have been with me during the last, very rough, year and a half that began this journey to my diagnoses. Especially to those who have been a physical presence; who have made appointments for me and kept me fed, showered, held, and loved. There are many more from afar who have checked in daily and made sure I’m still going. They all deserve every thanks I can give and more.
I am on a lifelong journey towards being mentally whole again, knowing what I’m battling, and having help.
Those of you who have been reading my blog, and those of you who know me personally know I’m good at sharing important, gruesome, sad, exciting, powerful pieces of my life so others’ lives may be impacted positively. You have seen that I use my voice to make a difference. You’ve witnessed as I have raised thousands of dollars for the Arthritis Foundation, as I’ve shared my story openly on my blog and in local and national news stories about healthcare. Those of you who know me best know that I love hosting potlucks – what you may not know is that I love hosting potlucks so much because I love bringing people together who would not otherwise meet. I love creating community, introducing strangers, being a nucleus to a gathering.