Everyone has a story to tell, this one’s mine.
My name is Shelly Rohe. I use she/her pronouns. I’m a disabled, middle-aged, white, woman. I have long(ish) strawberry blonde hair and blue eyes.
I was born in 1971 in Zumbrota, MN in a hospital that burnt down shortly after. I was the last baby born there. I used to say to my mom, “I’m a red-head born on 911, that makes me an emergency!’ I’m pretty sure my mom agreed!
These 3 pictures show me as a baby and prove I had a mop of red hair. The first in my baptism gown, at one month old riding my favorite motorcycle tyke-bike, and blowing out my 1 year old birthday candle. I am the second of four daughters and a true Gen Xer. I was bold, fierce, risk taking, and naïve enough to believe I could do anything I put my mind to.
Next, these pictures show me growing up as a little gymnast with my sister, Ranae, next with my best friends on my 11th birthday, and with my whole family wearing matching white and black outfits. I grew up fairly feral. My mom baked cakes from home and babysat. My dad worked at IBM and followed the same schedule my entire life. The rule was to home by 4:30 every day and I took advantage of every second to play outside. Gymnastics, dance, reading, exploring in the woods, biking, swimming, you name it, I tried it. I had a very active imagination, loved playing with my friends and spending time with my family.
In high school, I played volleyball, ran track, played drums, was in FLA (Future Leaders of America), on the Annual staff, acted in school plays, and fancied myself an artist. I used my study halls to volunteer in the elementary classroom for disabled kids. My motto in life then, as it is now, is that ‘In the mutiple choice game of life, D: all of the above is typically the right answer.’
When I graduated from high school, I couldn’t wait to go to the U of M after spending 3 weeks there the summer between my junior and senior years of high school at a Summer Honors College for Art. The problem was that they stuck me in an upper classmen dorm because I had been accepted into the honor’s program. I wanted to be with people my age just starting out in college. So, I transferred here to a local community College, RCTC, while I figured things out and took my first full-time job at Hiawatha Homes working with disabled people.
Moving back to the Twin Cities, I finished college and graduated from Hamline University, Cum Laude with Departmental Honors for a BA in Psychology with dual minors in Biology and Genetics. I worked throughout college at various organizations supporting disabled people. As I climbed higher with Group Home positions, I was getting further, and further away from working directly with the people I was supporting.
Five years out of collage, and needing a change of pace, I looked for a job supporting disabled kids. That job was as a paraprofessional in an EDB classroom at Richfield Elementary School. It didn’t pay much so I ended up getting a second job selling tickets at the box office at the Guthrie Theatre. When school let out for the summer one year, the Guthrie asked me to work for them full time and I agreed. I watched actors rehearsing, sets going up, and gave tours to VIPs. I had keys and the codes for lighting the stage and once I did cartwheels all across it just because I could. The acting bug bit, I took classes, got a agent in Minneapolis who took me on a tour of LA and…
I got an agent, Danny Hoff, who told me he would rep me if I moved to Hollywood. So, I did. I worked as a promotional spokesmodel for various companies like Encore Nationwide and as an auto show product specialist for Gail & Rice.
These photos of me show just some of the various spokesperson jobs I did for Twisted Tea, Bank of America, and GMC Trucks. I absolutely loved my life!
Seen here are one of my headshots, me dancing on stage, and on the beach with my friends. I thrived in California. I was making connections in the Industry and had tons of friends. Acting wasn’t as glamour as I thought, though, and I kept creeping up to sets to watch the action. So, I took whatever opportunity I could find behind the camera.
After becoming a production assistant, I found my way to casting. Eventually becoming a full-fledged Casting Director. I just booked my fist casting job for a small role in a major short film starring James Gandolfini, Lou Gosset Jr., and Joe Montagna. These are the only photos I can find of those days. The first is fuzzy picture of me doing production work, then holding a fake Oscar that I dreamed I would win someday, and if you look really close at the 3rd photo, you can make out my sleeve while watching my friend edit a short film.
While working on that first casting director job, I had a seizure right there in my casting office. I was admitted to neuro-intensive care at the Burbank hospital and was diagnosed with Cerebral Cavernous Malformations or CCMs. They are small benign tumors or lesions that occur in veins in the brain or spinal cord. I had two which I promptly named Thing 1 and Thing 2 after the Dr. Suess characters. Later that year, I had the one that had caused the seizure removed at the UCLA hospital in LA.
I had been given a 50% chance of making through that first night in the hospital. After blowing through that, driving back to Minnesota, and getting a second opinion at the Mayo Clinic, the Neurosugeon told me that I was the same person I had always been and encouraged me to keep living my life. I went back to California. Things had begun to change. I didn’t go back to work in the Entertainment Industry instead opting for a full-time job with benefits. That was for Pergo Flooring but I didn’t last long once I was relocated to Raleigh, NC. I ended up back in, you guessed it, LA.
I reconnected with someone I had had a previous relationship with and we got married. Looking for a slower pace of life, we relocated to Minnesota.
It was while opening the shop at Insty Prints one fateful morning, October 7, 2013 to be exact, that something felt off, very off. I was walking down a hallway I was very familiar with but ran into a wall that I wasn’t seeing. The CCM in my brainstem had broken open and bled. I was having focal disturbances. I drove myself to the ER. Brilliant, right?! Someone having focal disturbances should probablybnot be driving…
I told them in the ER that I wasn’t ready for brain surgery, and left, but ended up scheduling it after figuring out that I just couldn’t keep going. I was dying. On October 18, 2013, I walked into St. Mary’s hospital at the Mayo Clinic, signed my name to consent to surgery, changed into my hospital gown then….
My whole world went blank. I woke up to hear that the entire nerve bundle to the right side of my body had been cut to get to the tumor. I couldn’t feel a thing on my entire right side. I no longer recognized the body I was in. Nothing worked the way it should have. I couldn’t see straight, talk, type, dial a phone, write; communication in general was tough. I somehow always managed to find my mouth when food was around, though, and gained close to 80lbs. Gone was the body I had worked so hard on, gone was the voice I recognized, and gone was my ability to walk, dance, and swim. No more cartwheels or splits, no more painting or drawing. I couldn’t even hold a pen.
This collage of pictures shows me trying various activities post brainstem brain tumor removal surgery. I spent four weeks in brain rehab learning to navigate the world with my new body. I knew going home would be the hardest part. Trying, failing, struggling, tweaking the process, and eventually succeeding was my new way for relearning everything. I count it as a win even if it takes me three years and oodles of failures before I figure it out.
A lot has happenned since 2013, but a question I’ve had since day one persists; should I spend what little energy I have each day reaching for more recovery, or should I spend it living the best life I can today, as I am?
This podcast exists to help answer that question….