Trying to put together a patient resume has been an ongoing process I didn’t realize would take so long. In all fairness, I’ve divided this “About” into sections, with one section devoted to that resume, another focused on advocacy, education, and work, and another more personal – me. For the essence of time, because February is a very special and very busy month, I’m going with the quick and dirty to get the job done.

 

My name is Michael, and I’ve lived and died many times in Nebraska, once in California, and I am working on adding Colorado to the list. Kidding! I don’t want to add any other states to the list. It gets old once you’ve hit double-digits. Died? That’s a little extreme and flat-out bullsh*t. I promise my resume will explain it all, but until then, let me just say when you have a 109-degree fever, can’t stop seizing from it, crash, and doctors call it – you’ve died. They’ve literally called it. Welcome to my 25th birthday. Yes, birthday, because my timing is impeccable. I’m also a unicorn. A neurosurgeon at Cedars-Sinai Hospital called me a statistical impossibility, and that was before I acquired a bunch of new fun stuff. Here’s the skinny:

 

When it comes to my brain, I have Idiopathic Generalized Epilepsy, Frontal Lobe Epilepsy, Deep Brain/Scalp Negative Seizures, Status Epilepticus (my body loves this one), Hydrocephalus, Slit Ventricle Syndrome, brain bleeds, strokes, traumatic brain injuries, and then some. In matters of the heart, I have Left Branch Bundle Block, Long QT Syndrome (roughly 1.6 to 6 cases per million), Infective Endocarditis (a rare strain, one of five bacteria that do not show up in initial/some cultures taken; the thing that killed me on that one birthday), Aortic Valve Insufficiency, aortic valve replacements (a few), severe mitral valve regurgitation, an on-and-off arrhythmia, a few open-heart surgeries on top of more heart “procedures,” cough “surgeries.” Some may not call it surgery because you aren’t wide open, but they are messing around inside of your heart, so it’s surgery. There’s more, but moving on.  

 

I had a Schwannoma tumor in my spinal cord. A rare one-in-two-million autoimmune disease that caused my kidneys to fail and affects my lungs and bone marrow. Chronic Kidney Disease now that I’m in remission. Lungs that like to collapse simultaneously and pleural effusion in my lungs. Polycythemia Vera, which makes my blood too thick while also having severe anemia because my body is quite contradictory. This was before blood thinners were added to the mix. There’s Osteo Genesis Imperfecta (OI, brittle bone disease). I’ve proudly broken every bone in my body except for my neck, a few vertebrae, both hips, and a few ribs. Yes, all those weird, small, or big-deal bones (skull, some vertebrae, collar, chest/sternum) I have broken. Usually, multiple times.

 

Sprinkle in some idiopathic gastroparesis, tons of gene mutations, but I only remember the MTHFR gene because my doctor pronounced it as the motherf*cker gene, and I will forever love her for that. Some other stuff, and I should mention with several things I’ve already named, I have additional syndromes or complications that make me a “complex case.” Most of these things are a single digit per 100,000 or one or two million, while some I’ve scored; there are only 200,000-500,000 cases worldwide.

 

No, that’s not everything. Needless to say, I really am a professional patient, and I’ve spent much of my life in hospitals or other medical facilities, getting the hang of how things work, how they don’t but should work, politics on a hospital floor, and more. I’m unafraid to do what I have to so I can get the treatment I need. Sometimes, this makes me the easy, fun patient, and other times the “horrible b*tch monster of death.” I’m okay either way because it means I get what I need. I’m accused of having a morbid sense of humor, but you gotta keep things light. Plus, I come back.

 

Activism has always been my thing or one of them. At fourteen, I began participating on panels sponsored by Parents and Friends of Lesbians and Gays (PFLAG) and Gay, Lesbian and Straight Education Network (GLSEN) for educators, current and prospective, about LGBTQ student needs, Gay-Straight Alliances (GSAs) in schools, providing safe spaces, and anti-bullying initiatives. While doing this, I and a few other students campaigned for our high school to form a GSA. It did, and I became its first president. I helped a few different schools in the Omaha Public School District (OPS) and other districts begin GSAs of their own. I also participated in a local march against Nebraska’s (now defunct) Proposition 416 and organized my own community march that included over 100 people at sixteen. I participated in several local youth groups focused on different causes, from leadership and diversity camps to community theater groups. (My big schtick in elementary school was the environment where I wrote about climate change, picked up litter, and organized events for other kids to join me beginning when I was seven. Again, politics and community service; it’s always been my thing.) I received scholarships for my work in the community, academic and diversity scholarships from several organizations, including Omaha’s Rotary Club, GLSEN, and PFLAG, among others, and directly from the University of Nebraska-Lincoln, where I was attending.

 

I love to learn. I’m naturally curious and a bookaholic; I inhale information. This is great because it lets me offer an intelligent opinion on everything. Really, everything, because I cannot keep my mouth shut. I’m loud and opinionated, and I don’t hold back those opinions that are based on compassion and awareness or facts, logic, and numbers. Ideally, both, but that isn’t always possible. I scored in the 99th percentile on my ACT (college entrance exam; I’m very competitive) and (not to my family’s knowledge) was approached by an Ivy Leaguer but needed to turn them down because of the lack of proximity to my neurosurgeon. (My brain is much more complicated than laid out above.) I was invited to join MENSA, but I didn’t have the time for “one more thing” between school, work, extracurriculars, and community activism.

 

In my freshman year, I mostly took senior-level courses beyond prerequisites, declared a major in teaching, and student-taught science to high school students for a few weeks before changing my major based on what I ultimately wanted in a career (not the students I worked with!). I declared a triple major in English, Psychology, and Women’s and Gender Studies. I also became my floor’s senator for student government, served as Vice President for UNL’s LGBTQ+ and ally student organization (then known as Spectrum), and participated in other organizations, including groups such as the relationship violence prevention student organization (PREVENT) and a committee comprised of LGBTQ students and faculty, among others. I created and presented presentations to Student Housing to ensure the safety of LGBTQ students in bathrooms and floors in their forms after my own incident with two male students while waiting for an elevator. While they were hulk-ish, I got on the elevator, too, which one professor on another committee I served on called stupid, but why in the hell was I not going to get on the elevator? Not to sound like a child, but I was there first. It also allowed me to track where they lived, so I could take action against them. Come on, people.

 

I was hired as a Resident Advisor (RA) for UNL’s dorm, which primarily houses international students, students with disabilities, and non-traditional students. Honestly, I found it awesome to have over ten languages on my floor at any given time (I was in charge of, like, 40 guys). I organized several floor events, both educational and recreational (salsa dancing!), and sometimes co-organized events with other floors in the dorm. I was elected President of Spectrum but stepped down mid-semester for health reasons. I didn’t tell them that; I rather that I appeared to flake it off, but it was because I didn’t want sympathy but was managing simultaneously collapsing lungs, hospital stays, and taking care of my mental health after being diagnosed with Complex-Post Traumatic Stress Disorder (C-PTSD) due to childhood abuse, and a brain surgery (or two). I was still hiding all my disabilities back then, including physical disabilities, which were invisible. Dealing with that, my work as an RA, my job outside school, and 21 credit hours because I was determined to graduate in four years, but with three majors, which can be tricky (you know I did every summer session) and meant I couldn’t do justice to the organizations I was elected to lead.

 

That changed, of course, and I accidentally (and silently, because it was on the National Day of Silence) began a student (peaceful) protest (not my fault police were called) that boasted picket signs, people vocally protesting, and dramatic renditions of Dr. Suess, among other things. I was so worried I’d end up losing my job as an RA! And the entire time, I never said a word because it was the National Day of Silence. I became the head of campus education for relationship violence awareness and prevention and organized campus events, bringing theater groups to perform on campus and concerts for local and state bands on behalf of PREVENT. I joined and volunteered for the local domestic and sexual assault organization, organizing their library, helping with marches and events, and working a few nights a week as their crisis hotline operator. I came up with the idea of “In Someone Else’s Shoes,” a video project for student housing interviewing students about different topics, diversity in dorms, and issues at the time, such as antisemitism.

 

I had open-heart surgery my junior year (I tried to put it off as long as possible) and stepped down as RA after my surgery to recover properly, but not before they hired someone to take over. I guess that didn’t work for me, and I began educating the community on same-sex relationship violence and male victims (gay and straight). I became the sexual assault and domestic violence male victims advocate as there wasn’t someone who worked with male victims at the time. I gave educational presentations for organizations, including local police. I continued to focus on this until I graduated while working for the Domestic Violence and Sexual Assault Victim’s hotline, my off-campus job, head of campus education for PREVENT, and side hustles because I’m all about the hustle.

 

I graduated from the University of Nebraska-Lincoln, majoring in English-Creative Writing, Women’s and Gender Studies, and Psychology. I minored in English Creative Writing-Fiction and Textuality in Literature (but I focused on textuality in writing; short version – being aware of the words and devices I use, how they are connected to firmly “guide” a reader’s emotional response and understanding). I’ll be honest: I know what readers want but don’t realize they want, so I write beneath the surface of what I’m actually writing to get the reaction I want. This is why I’m great at helping students with admissions essays. They always get in because I know how to take five near-identical people, have them write about being in the same organizations because they are, and end with five extremely individual but effective finished products that make admissions committees feel and want more. (No, I do not write student essays. I edit them developmentally, line by line, and after X number of revisions, until they have an essay completely different from what they first submitted to me that is ready to make admissions committees drool.) I also minored in Gender Psychology, LGBTQ+ Studies, and Sociology.

 

Two days before I needed to take my GRE (standardized test for graduate school), my shunt broke, requiring brain surgery. Seriously, my timing. Personal life, professional life, educational life, and medical life – I’m amazing. I discharged myself (there were minor complications, and they didn’t want me going anywhere), went to take the GRE, and between post-surgical pain, those complications, and a whole lot of drugs, I only ended up in the 95th percentile, which I resent to this day, but I didn’t have time to reschedule the test date to make the deadline for my graduate school applications.

 

I accepted the invitation to join Antioch University’s Los Angeles campus. I chose them from my other acceptances because of their commitment to social justice. While I was getting my Master of Fine Arts in English-Creative Writing-Fiction, most of my writing was an intersection of playing with form, technique, and POV with social issues from mental health, suicide, and self-harm to internalized homophobia to homelessness to hate crimes, from a social justice lens (by sometimes utilizing the opposite).

 

After obtaining my master’s, I moved back to Omaha after graduating, working as a temp at a financial investment firm. (I worked at an investment bank to pay for graduate school and was their top earner several times; otherwise, I was in the top five out of all branches in the country. If you’re shocked, welcome to my world. I’m shocked and unsure how to feel about it.) Then I died from that fever and ended up unemployed because I needed daily infusions of a series of drugs, then blood transfusions, and then appointments every day. Yes, seven days a week. Difficult to work then. Plus, I had two severe strokes around half past midnight on my f’ing birthday, roughly seventeen hours pre-death; I just didn’t know it. So, it was a long recovery there.

 

Then, before I fully recovered, Goodpasture’s (that one-in-two million autoimmune disease) entered the scene, and I was always either in an infusion center or dialysis center every other day; they swapped ABAB. Between that, procedures, surgeries, tests, appointments, etc. I still could not work a day job and applied for disability, utterly ashamed because this is when I still held onto my “I am not disabled” platform called denial and self-stigma. Luckily, I got over that, but do you know what it’s like not being able to work or do anything? It’s boring, which becomes depressing, and then you’re bored of being depressed. It’s a vicious cycle. I decided to hell with it; if I can’t work a job for someone, I can work for myself. I launched my first company, Whelan Writing Services, which offers a variety of writing, editing, and business services. (That site is currently going through an overhaul, with some services out the door and ushering others in, so if you go, feel free to ask if or what is currently offered. Forgive any typos as I need to line edit the site’s “in transition” and new pages, as I’m trying my best to juggle.) I had to do something. Really. Plus, this way, I was being helpful.

 

I decided to launch Whelan Writing Academy, which will open later this year and will offer a variety of writing courses, from beginner’s writing courses to college admissions courses to advanced creative writing courses. I also founded On the Fringe Press, a small publishing company set to release its first book in April 2027, with a catalog of several other books and anthologies. No, stillness is for the dead who remain dead. I’ve yet to remain.

 

As for me, aside from all those nifty writing contests and awards I received through high school and onward, I’ve written for the Huffington Post, NBC News, and The Dallas Morning News (print and online), among others, and have had articles picked up by outlets such as the Kaiser Foundation and NPR. One article became its own hashtag for a day back when X was still Twitter (it is very weird to be a hashtag), and articles referencing my articles and my story when discussing topics such as strokes and stroke survivors. My work has also appeared in literary journals, and I was honored to share my story for a parenting book about loving and supporting LGBTQ+ children.

 

I write primarily health-related pieces from experiences, current topics, policy, and accessibility. I’ve also written articles regarding LGBTQ+ issues regarding topics such as gender roles, bathroom policy issues, and hate crimes, including targeted mass shootings.

 

It sounds like a lot, but I’m a lot, so it works. Anything else? I’m every stereotype there is of a redhead, plus. I’m also Irish, love animals, have a canine preference, and love nature, hiking, and bodies of water, such as oceans, streams, creeks, and rivers. I’m a chocaholic, introvert (yes, really; we INFJs are deceiving), Leo who prefers to be left alone. Oh, and Buffy fanatic – ‘tis not a show, but a way of life. (How did that not come first?)

 

I began “A Professional Patient” because being a patient can be difficult. People can be undercut, silenced, gaslit, and have certain steps/actions taken that are not in their best interest in the form of “policy” and more. That’s just dealing with a hospital floor. It doesn’t take into account why a patient is there or other needs, whether it be mental, emotional, physical, or spiritual. Someone with chronic illness and/or disabilities who deals with this on the regular? It’s a lot. Sometimes, there are smooth periods, while other periods can feel like an everyday battle. Should it? No. Hence, this site. Assistance with advocacy, calls to action, providing a community, and listening to others’ stories, allowing people to listen to what we have to say because there is much to be said. Patients are warriors. We should not fear within the medical landscape; we are the ones to fear.

 

Soon, under the “More” tab, I’ll offer services such as policy writing, patient coaching, advocating, and consulting (I never provide medical advice or advice regarding medications or treatment, but all the other crap, yeah, I help out with that), and courses and webinars on topics from being your own patient advocate, self-empowerment, finding identity after surviving a stroke, helping a loved one who has survived a stroke, and more.

 

I’m sorry it’s taken a bit, but I’m dealing with putting a few medical professionals in their place in a “professional way” and breaking a specific medical unit’s policy (all in a day’s work). Plus, you know, life.

 

-Michael