But You Don't Look Sick: Profile of Karen Stephens

When most of us think of natural beauty, clean eating and wellness, we envision glowing skin, an impeccable diet of alkaline foods and a Deepak Chopra meets Giselle Bunchen kind of mind-body harmony. What most of of don't consider is the painful motivation and bumpy path that led to such holistic robustness.

Meet Karen Stephens - a literal poster woman for the road to wellness hard traveled. 

Karen is also a New Yorker, a modern busy working mom who is also an empress at talking, walking and living a green path. Karen, soon to be 53, a traumatic brain injury (TBI) survivor and advocate, in January launched the Face of TBI campaign to promote awareness and public education of brain injury with a one-minute video on YouTube and Facebook to start discussions about concussions and brain injury and let people understand the complications.

Karen is a former fashion model, freelance writer on fashion, beauty and lifestyle, publicist, and grooming and etiquette expert who resides in Astoria. Her actor-daughter LiLi Stephens-Henry is pursuing her dream in Los Angeles, waiting for her big break. 

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“But you don’t look sick!” is the common feedback I get from a lot of people who judge my disability, access to services or needed requests for accommodation.  

And when I sometimes respond by saying that I have had a long journey in my recovery.  The follow-up comment is, “But you are much better now, though, because you sound good!” As if to say that looking attractive or pretty and speaking well demonstrates wellness.

I see the questioning looks as they see me in a wheelchair traveling through the airport.  I had to put pride aside years ago after traveling solo to my grandmother’s funeral in Florida, I realized that my attention deficits were not to be taken lightly.  I was heading to the departure gate and for some reason, I just was following the people ahead of me and ended up on the other side of JFK Airport.

 In pain and confusion, I stopped and started crying right there in the middle of the tunnel.  A JFK worker traveling on the caddy stopped to ask me why I was crying and how he could help me.  I told him I had suffered a brain injury and that I was heading to the gate and now I find myself here and I don’t know how to get to where I’m going.  He smiled and said to hop on and he’ll take me to the gate I needed to be after reviewing my boarding pass.  On the way, he told me I should always use the disability services when I travel as it would make it easier on me.

For a long time, I was uncomfortable with speaking about my brain injury and the resultant physical and neurological injuries that came with a traumatic brain injury.

I was ashamed.  Embarrassed.  Worried others would see me as less than.  Not good enough.

Disabled was a dirty, shameful word and I dared not echo it as any mention of it would immediately bring me to tears. I’m still a little tearful as I remember the windy day I left my home worried that something bad would happen because of the gale-force winds that morning in Fresh Meadows as I headed to a Literature class. I was a senior in my second to last semester at CUNY Queens College where I was doing a teaching degree for English Language Arts.  At the same time, I was running Grooming Plus, a self-employed business that offered self-development workshops and summer camps, handled publicity and events planning.

For a long time, I was uncomfortable with speaking about my brain injury and the resultant physical and neurological injuries that came with a traumatic brain injury.

I was ashamed.  Embarrassed.  Worried others would see me as less than.  Not good enough. 

The fateful day of the accident, I was grateful I got to the campus in one piece.  As I was thanking the Lord for taking me safely to my destination, I heard a very loud konk! on my head.   The clanging sounds of metal poles slamming on the concrete ground in a domino-like effect were frightening and I clutched my head.  I was in and out of consciousness after that.

I woke up the next morning with severe pulsating headaches and neck pains.  I could barely dress or raise my right arm to brush my teeth and was nauseous as I struggled to get dressed to go back to the ER that sent me home the day prior with a painkiller.

That was November 13, 2013.  What appeared to be a concussion that should go away in a few weeks became 13 years of chronic pain, medical appointments for physical and cognitive therapies, and treatments for a whole slew of injuries that became overwhelming and unending.

Overnight, I could barely read.  My eyes could see the words, but it was difficult to read.  I lost my sense of smell (Asnomia), developed vision problems (saccadic deficiency, sensitivity to light, et al), balance problems (B.P.P.V aka positional vertigo), urology (urinary urgency and frequency), severe headaches caused by occipital neuralgia, chronic cervical pains (cervical Lordosis secondary to muscle spasms), speech and sounds were much louder to me and painful to listen to (hyperacusis), cervical radiculitis that later doctors realized was a broken right clavicle with torn tendons and torn rotator cuff requiring arthroscopic surgery.

 Then I started to find it difficult to remember names and things.  I could see the words, but I just couldn’t reach them like tip of the tongue phenomenon we learned in Psych 101.  I would have conversations and would not remember having them.  I’d put Post-Its everywhere.  I developed word recall problems (Aphasia), a sleep disorder, became unable to handle over-stimulation like going to a dinner at a restaurant, emotional regulation, depression and lived with chronic pain.

Then I started to find it difficult to remember names and things.  I could see the words, but I just couldn’t reach them like tip of the tongue phenomenon we learned in Psych 101.  I would have conversations and would not remember having them.  I’d put Post-Its everywhere.  I developed word recall problems (Aphasia), a sleep disorder, became unable to handle over-stimulation like going to a dinner at a restaurant, emotional regulation, depression and lived with chronic pain.

I remember once having a conversation with a girlfriend who was telling me about a date she went on.  I asked her to speak softer as she was speaking; and then later asked her to repeat herself.  She went off on me.  It wasn’t that I wasn’t listening; I just was having difficulty paying attention.  I could not understand what was going on with me.  Five years went by and as I struggled in silence with not being able to work and being sick with such much going on all the time, I decided to take control and get help.  Help came in the form of now deceased Dr. Rolland Parker, neuropsychologist.  I had suffered a Mild Traumatic Brain Injury.

I could no longer reach those lofty goals and aspirations of being an Assistant Principal and having my side hustle of a production company.  I had to learn to make adjustments to my expectations.  And that hit me hard when I was in cognitive therapy program offered by Mt. Sinai Phase II Brain Injury Program.  Everyday, I would make these long lists of 30 or more things I was going to do.  The next day, my neuro-psychologist would ask me how much of the list did I get done.  I would respond one or none.  By day three, I got it.  I had to modify my expectations.  I would learn to do things, but I was going to be doing them differently, she said.

Everything is work now.  I work twice as hard to pay attention, write articles or problem-solve. Multi-tasking is a thing of the past.  Dr. Parker would always say, “Multi-tasking is overrated!”

Then there’s the fatigue, pure exhaustion.  I can no longer replenish or renew the energy I used to have.  Once neuro-fatigue sets it, it could take a week or two months to settle it off.  There’s nothing I can do to restore it.  It’s my “new normal”.  

Neuro-fatigue continues to be one of my biggest setbacks with recovery.  There doesn’t seem to be much that can be done and we don’t know why it happens, it just does.

Before my brain injury, I was the party girl, the entertainer always throwing a dinner party, games night, something to get my friends together.  I had spent a stint modeling internationally with London as my base, did publicity and public relations.  

I’m at my best now and I am determined to live my best life.  I have systems that I have created that help me function really well on a daily basis.  I was a type A personality before my injury, so I draw a lot on that strong sense of organization, which I need.  I am still learning to pace myself.  I celebrate the small successes because they help me appreciate the bigger ones.  

I believe it is important to speak about brain injury as it sheds light and information on this “invisible disability”.  It allows me to educate others about brain injury and help persons suffering with a TBI or the family members who are engaged in the recovery process.  

So, the next time you’re tempted to tell someone, “But you don’t look sick!” stop.  It is not a compliment. You have no idea what they’ve been through or what they’re going through.  Getting dressed up is part of the therapy in recovery and looks has nothing to do with it.

Photo © Pinterest, Brown Dress with White Pokadots