I’m excited to announce I’ve started collaborating with other bloggers to bring you some more diverse content (aka people’s views other than my own!) on Starbrite Warrior.
Let me hear a “Whoop Whoop!”
I’m kicking things off with an interview series featuring other chronic illness bloggers talking about what it’s really like to walk a mile in their shoes.
I haven’t worked out a super cool name for this series as yet – can I blame chronic fatigue brain?! – so if you have any suggestions, please hit me up!
Want to participate in this interview series yourself? To have your voice heard and your blog featured? Drop me an email to bree[at]starbritewarrior.com and we’ll have a chat!
Now, time to kick off the first interview!
A bit about Jay
Jay Armstrong is a high school English teacher and writer who lives outside of Philadelphia, Pennsylvania with his wife Cindy and their three children Haley, Chase and Dylan.
In 2013, Jay was diagnosed with cerebellar degeneration.
In 2015, Jay was diagnosed with sarcoidosis, an autoimmune disorder that causes inflammation that affects organs, lymph nodes, muscles and joints.
After his being diagnosed with sarcoidosis, Jay created Write on Fight on (WoFo for short). On his website, Jay shares personal stories that mix humour with insight. His stories range from his battles with his diseases, music, literature, parenthood and adulting. Write on Fight on also serves a community outreach program that hosts write-a-thons for charities and various programs.
In October 2015 Write on Fight on raised and donated $1,300 for the Special Olympics of New Jersey and this spring Write on Fight on is hosting a write-a-thon to raise scholarship money for college bound high school students.
Along with writing and reading, Jay enjoys travelling with his wife and kids and having his heart broken by every Philadelphia sports team.
At the inception of chronic illness there is a lot of fear and confusion. Can you describe the time you felt the most scared?
After my initial brain MRI I was hearing things like ALS, MS, Huntington’s Disease and cancer. And that was really scary.
But the time I was most scared was when a neurologist at a well respected hospital looked at my MRI, shook his head in amazement, then looked at me and said that based on my MRI I should be dead or in a hospital bed.
That really rattled me. And you know what, almost three years later it still rattles me.
How long did it take you to accept your illness?
There are some days that I still struggle with my limitations.
For 30 years of my life I defined myself by my athletic ability, by the games I played. For 30 years I took pride in my physical strength and speed. And there are some days I just yearn to go for a run or play in a pick-up basketball game. Or when I see my friends competing in marathons or endurance races and it’s tough.
Of course, like most men, I have a fragile ego. So I still have this intrinsic, albeit foolish, desire to test the limitations of my body. It’s funny, my head and heart think they can do certain things, they still think they are 18, but my body is screaming “No! Slow down! Take it easy!” So I think my body has accepted its limitations but the head and the heart…well, we are still working on them!
Anyone living with a chronic illness can attest that there are good days and bad days. How do you embrace the good days?
I play with my kids. They are at really fun ages and they are really into sports. Basketball, baseball, soccer. They just love it when I go out in the backyard and play with them.
On your website you have discussed that getting sick was a good thing. How do people react to that idea?
People are usually surprised. Look, I wish I wasn’t sick. But I am. And it’s my responsibility to make the best of it.
But I now understand that getting sick was the kick-in-the-ass my life needed.
Before I got sick my life was falling into patterns and I was becoming complacent. A lame adult.
Before I got sick I was earning a Master’s degree in educational administration. I’m not knocking the profession but here’s the thing… I didn’t want to become an administrator. I was just doing it because it was a safe and easy move.
Then I got sick. And nothing was safe and easy and I began to really feel the brevity of life.
Getting sick injected my life with an urgency. An urgency that inspired me to drop out of grad school and start Write on Fight on and do what I always wanted to do – Write.
Can you describe how writing has helped you cope?
I find great strength and comfort in writing.
The deliberate act of sitting down and writing affords me the chance to be strong and unafraid even when I’m weak and afraid.
Also, I’ve learned that a writer must be willing to be vulnerable. And if you are suffering with a chronic disease you are vulnerable. You don’t have a choice. Writing has taught me to embrace vulnerability which I think has better helped me cope with my illness.
What books inspire you?
Joseph Campbell’s “The Power of Myth,” and Tim O’Brien’s “The Things They Carried,” have been books I’ve retreat to time and again. I find comfort in the words and themes of each book.
“The Power of Myth,” offers great perspective in explaining how your personal story fits into the great story of the universe. It’s humbling.
And “The Things They Carried,” is just a damn good book. It’s brilliant storytelling. I’ve read it at least a dozen times. And somehow that book continues to teach me about the writing and the art of storytelling, as well as what it means to be a conflicted and flawed human trying to make sense of this world.
On your website you have written a good deal about music. What musicians or bands inspire you or help you through tough times?
I love music and I’m always listening to it, especially when I write. I love bands like The Lumineers, Mumford and Sons and The Gaslight Anthem. There is a certain mix of grit and hope and urgency in their music that resonates with me.
Also, the patron saint of New Jersey, Bruce Springsteen, has always been a great source of strength, inspiration and perspective. Springsteen’s music is tough, ripe with conflict, yet there is a real sense of hope in his songs. When I’m having a tough day or stretch of days, I will often blast the “Born to Run” album and let Bruce take me away.
Human connection is a powerful and inspiring thing. Explain how connecting with people from all over the world through your website has helped you cope.
When I started Write on Fight on I had no idea how many people I would connect with.
I started the website as a forum to display my writing, but since its inception the website has become a meeting place for people I know personally and for strangers from all over the world.
The website has taught me that we are all struggling. We are all fighting our own private wars and it’s the spirit of human connection, the communal effort, that helps us to cope and eases of burden of living.
Where can we find you?
Email: [email protected]
Website: Write on Fight on
And that’s a wrap! Thanks Jay!
Remember, if you have a cool suggestion as to what this interview series might be called moving forward, please share in the comments below.
Finally, if you would like to participate (be interviewed!) and have your voice heard and your blog featured, please drop me an email at bree[at]starbritewarrior.com and we’ll have a chat!
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Photo Credit (Featured Image): Pixabay
Photo Credit (Bio Photo): Jay Armstrong
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