Why the Chronic Advocate?
This site is called the Chronic Advocate because that is exactly what I am on multiple levels. I am indeed both a professional patient and a healthcare professional with a calling for social justice, and a passion for knowing all there is to know about Psychology and the brain.
My life with Chronic Illness
I’ve had various forms of chronic illness since birth. From birth to age 13 I dealt with chronic severe middle ear infections. Then at 13 I was gifted my genetic destiny of Endometriosis1 and Chronic Basilar Migraine2 with a history of Status Migrainous3 and Persistent Aura4. I’m now in the process of being definitively diagnosed with Lupus SLE5, which might date as far back as age 15. Oh, I also have Meniere’s Disease6 since April 2014.
I’m chronic illness chimera and have survived on constantly reading the research and advocating for the best care. At this point my treatment team consists of some of the best doctors in their respective specialties in the world. So I’m in good hands!
My Calling for Social Justice
I was raised in a spiritual community that believed strongly in “the call”, meaning that we at times receive a spiritual calling that transcends everything else. This calling should be our mission in life, it should be the center of ourselves and likely we will not feel fulfilled or spiritually nourished without pursuing it.
My family’s call has always been social justice, primarily when it comes to advocating and providing resources for the homeless. I grew up helping out Mitch Snyder7 in his drop in centers in shelters, in fact they are some of my earliest memories. I went to my first sit in with my parents and Mitch when I was about 6 years old right by the Capital in DC, and watched one of his many arrests as we stood on the sidewalk singing “This Land is Your Land8“. I was selected in kindergarten to do a speech for an event and wore one of my mother’s home sewn dresses and wrote about Mitch. When Mitch committed suicide it was one of the most devastating moments in my life, it was also when I learned what suicide is.
I also grew up on a lot of construction sites with Hope and a Home9 a branch of the DC organization FLOC10 (For the Love of Children). I befriended several of the children in the program, and sat in their playroom on many occasions while my parents attended meetings.
Being an activist and an advocate is in my DNA as much as my illnesses are. Speaking up for and providing for others is my calling in life. No surprise that I work in a wrap around mobile program for those with severe mental illness who have been senselessly discarded by everyone and everything else. No surprise either that I work for the agency that views itself as having the same calling, and puts the clients first no matter what.
My passion though is Psychology and the Brain
I grew up obsessed with 321 Contact11, Mr. Wizard12, and Square One13. Saturday mornings I would watch Mr. Wizard12 and then repeat the supermarket science experiments in the kitchen. My most treasured birthday present was an awesome Tasco microscope and I would run around just about anywhere collecting samples for slides.
In high school I was always in the most advanced science classes, and took extra courses like Anatomy and Physiology. I was being courted by UMBC to join the Meyerhoff Scholars14 program when I was a junior in high school, to the extent that I was selected to do a special overnight trip and orientation.
The same year my migraines and health overall worsened (Lupus?) and when I had aura I lost my ability to do the math and chemistry equations. My English, Biology, and Chemistry teacher rushed to find me an alternative and we’re trying to convince me to apply for the science writing program at Johns Hopkins. I though wanted to be hands on with whatever I did so I opted to go for a lower scholarship at UMBC and major in Biology.
Due to my massive amount of allergies freshman Biology lab in Electrophoresis caused my throat to swell shut. Since my primary interest was in genetics, particularly RNA and DNA of genetically linked diseases this meant my Bio career was over.
I stumbled around different majors for about a year until I attended my first lecture of Psychology which I had signed up for only to meet my elective requirement. I realized that this was the science of one of the most amazing things in the universe, the brain. I changed my major to Psychology within the day. I was reading my textbooks cover to cover, and made an entire lecture hall very angry when I broke the curve to our exam by 20 points, by receiving the only A (95%). From then on I was a runaway train in Psychology taking courses in everything from Personality, Evolutionary Biology, Clinical Psychology, and of course Physiological Psychology.
I was unimpressed with how attached Psychology was to the medical model, and felt that Clinical Psychology was behind the times. So I did a winter elective on Social Work and the DSM. Once again the next day I changed my major and declared as a double major in Psychology and Social Work. Since clinical social work largely deals with the public mental health symptoms and thus the most severe cases the therapeutic techniques tend to be ahead of the curve. Social work by default also works by a Strengths Based15 and Person Centered16 model, which by the way Psychology is switching over to, this also should not have taken so long since it all started with Carl Rogers17.
How my calling and passion married into the Chronic Advocate
Back in 2011 I took a career and life changing course in Trauma Informed Care18 with Lisa Ferentz, LCSW-C19. Much of the course revolved around the brain, and how the skills we were learning applied to the brain. Finally my love of the Amygdala and Hippocampus had a place in my therapy practice. Yes, all my clients know the anatomy and biochemstry of the brain and how it applies to their illnesses. Yes, I feel all of them get better quicker when they have that information.
In 2014 when I became fully disabled due to Meniere’s and my Basilar Migraines going status I did my homework. Usually reading medical journal articles with iPhone an inch away from my right eye (my migraines are left side). As soon as I could type again I began sharing what I had learned. My writing has continued to evolve into articles on my therapy work, brain nerding, and overall healthcare issues and advocacy. On this site I am both my calling and my passion. Writing as both the professional patient and the healthcare professional; in both categories I am a Chronic Advocate.