Why this blog?

Welcome! Thank you for visiting my blog!

This is my medical and recreational blogsite. Some of the entries on this blog are honest and quite vulnerable, as I wrote them at my lowest point. I try to keep a positive outlook on life, because no one wants to hang out with a downer, including me. Writing these entries has allowed me to see the world through a beneficial filter that allows me to appreciate every moment I have been able to experience in my life, even the difficult ones.

My husband Matthew and I LIVE when we can. I mean we suck the juice out of life, and we aren't ashamed of that outlook. It makes the bad times ok somehow because we took advantage when we were able. The pictures on this blog are part of that. I take pretty pictures of my sick body to boost my self esteem when I am having a difficult time seeing myself as a woman instead of a sick person. It is how I cope with my illness, and no one gets to judge how you survive your difficulties. So live on, and feed your souls.

Watch our story here:


~ Tonia

I have decided to relaunch my Facebook Page, The Beauty in Illness. Along with the help of two other rare patient advocates, we are hoping to include artistic stories of struggle and perseverence through creative ways. Please check us out and let us know if you would like to contribute!

Hospital Me THEN (2012)

Hospital Me THEN (2012)
Dance like no one is watching!

Hospital me NOW (2015)

Hospital me NOW (2015)
Dance like EVERYONE'S watching

Post Transplant-1 Year (March 2014)

Post Transplant-1 Year (March 2014)
Mi Amor Studio

Pre Dialysis Pinup Shoot (2012)

Pre Dialysis Pinup Shoot (2012)
Dynamite Dames

Mid Dialysis Boudoir (March 2013)

Mid Dialysis Boudoir (March 2013)
100 pounds, and a week from transplant, chest tube tucked into bra like a lady. ;)

Non-Pinup Me Now (2015)

Non-Pinup Me Now (2015)
This girl has four kidneys

Monday, November 17, 2014

Why I Don't Work in Oklahoma

Ok, so the time has come for me to explain a few things about what has happened to me here in the place I have learned to call Home.  In my show, Dancing in the Storm, I never once mention the word, Oklahoma.  It feels wrong to slander it because there have been so many wonderful people I have encountered here.  My students have been some of the most important people in my life, as well as the actors in the shows I have directed. I have a lot of wonderful friends here that I have acquired throughout my years here.  But there have been some experiences I just can't seem to get past, and I have felt extremely out of place for the past 8 years.

Here is the truth:  I no longer am a professor.  I taught for three and a half years at Oklahoma City University and through something I like to call, "a difference in approaching relationships with students," I was not rehired after my three year contract was over.  This just happened to coincide with my aHUS attacking my body.  It was the hardest thing I have ever endured.

Let me repeat that.  I have had two kidney transplants and a potentially terminal disease for 15 years.  And losing my job was the most traumatic experience of my life.  Those students meant everything to me, and I am lucky enough to be in contact with many of them, some of which worked with me in the Chicago production of Dancing in the Storm.  The day I was told I wasn't returning, The University of Oklahoma School of Drama brought me on to teach full time classes for a teacher going on sabbatical.  I was told I was and always would be "part of the OU family."

There was even an article written about me in the OU Daily which I rave about how the OU School of Drama was some of the most supportive and honest group of colleagues I could ever have hoped to work with (the link to that is above right). I taught for three semesters before my illness began to take over and I needed to stop working altogether.

During this time, the faculty at OU was amazing.  They brought us meals and christmas trees.  They gave us ornaments and gift certificates for dinners we didn't have the energy to cook ourselves.  We truly felt like part of the family.  I was even told whenever I felt better, that I always had a place to teach at OU.  This gave me something to work towards.

When you compare the dates, this is when I began to take pictures of my body with tubes coming out of it.  I was hitting rock bottom, and I needed a boost.  Seeing my body disintegrate was terrifying and makes you question your own sanity at times. I began to lose my confidence and passion(the very thing I teach my students).  It scared me to death.  So I joined a group of women at a fitness and dance studio called, Teaze Dance and Fitness.  They taught me pole dancing, pinup, and other dance classes.  They helped remind me I am a woman and that I needed to embrace the me I love again.  So I took some pictures of myself.  You may have seen them:

This one was taken before I went on dialysis.  I couldn't actually stand in those heels.

This was taken a week before my kidney transplant.  That tube on my right chest is my dialysis tube.  It went straight into my heart, and I used it four times a week to attach to a machine to filter toxins out of my blood.  I did this with my husband at home after training for six weeks to become home hemodialysis certified.

The side of my hip facing the camera is my mom's kidney transplant location.  I wanted to display it because of the sentimentality.  This was at a point when there were several days a week I needed a wheelchair to go farther than about 100 feet, and stairs were absolutely out of the question.

 This picture was taken exactly five years ago, when I didn't have a diagnosis.  My life was doctors and not knowing if I would live to see 30
And this is me now, age 34. Enjoying life, enjoying my body as a healthy person (which has been naked dozens of times in front of a room full or surgeons, so what's the big deal if my shoulder is showing?)  I have a lot to be thankful for, and photo shoots are a way to thank my body and soul.

In all of these pictures, I am experiencing a terminal illness that could have killed me if I didn't get access to a drug called Soliris, and a second kidney transplant.

Here is where the story gets strange:  I was dying.  The only thing on my mind was survival. I love these pictures. They helped me survive, and they gave me confidence.  This was my coping mechanism. And, well, I did just that.  I survived.  But after becoming "Healthy" years later, I came to learn that others saw these pictures as an indication of the damage I can cause to others with my...audacity.

My husband, Matthew gave me a kidney in 2013 and I had access to Soliris, so things began to get better immediately.  The week after my transplant I received a call from the OU school of Drama and was asked if I could direct a movement show in the following fall.  I was elated to get that call!  It was all I wanted: to direct a show again and get back to work.  I spent the following summer writing and planning the show I devised that we all have learned to be called, Dancing in the Storm.

On my first day of work that year, I watched auditions of students and nearly cried I was so happy to be back at work.  I had taken nearly two years off of work being a prisoner of my illness, and coming back to work was one of the best days for me in longer than I could remember.  Between audition times, I had a question for my director and went to find him in his office.  I wanted to tell him that I felt confident that I was ready to work more, and that I thought I could handle another class, or two even.  "I just wanted to let you know that I am back, and I am ready to be part of the team!"

At that point, it was revealed to me that I couldn't teach classes at OU anymore.  I was told that while I was sick, I took some inappropriate pictures that portray me as a poor role model for the students.  In the same conversation, my sexual life came into play.  There were also rumors that followed me from Oklahoma City University (five years in the past) that I had a sexual relationship with a student (which was absolutely untrue) and it was too chancy to let me get too close to the students any more.  I was told I might be able to direct, but teaching a class would be impossible until I worked really hard to change my image.  The pictures above were part of the image I was to change.

This blog was brought into question.  In another conversation there was a suggestion to take it down. This colleague suggested that maybe this blog further validated the rumors about my inappropriate relationships with students, which baffled me. There was a suggestion to use my transplant as a jumping off point into "adulthood."  Let it be known that I was a 33-year old woman at the time.  I wasn't a graduate student, or an undergraduate student.  I wasn't a little girl.  I was a professional woman with a terminal degree and 20 years of theatrical experience and medical struggles that influence everything about how I teach.  When we discussed that the rumor of my inappropriate relationship was not true and that there was absolutely no evidence to prove it, I was told it didn't matter.  The rumor would stay with me forever and follow me, and the school simply could not take that chance.

Let me take a side note to mention that no letters of sexual harassment have ever been written about me. There is nothing in my record about this incident.  I was being pegged as a danger to my own students, the most important people in the world to me, and I couldn't even tell those students this was why I would not be returning to teach them.  Well, I could have told them, but I actually thought that would be inappropriate. They don't need to know the nasty behind-the-scenes crud that doesn't really affect them.

This was a big part of the plot in Dancing in the Storm.

So this is my personal blog.  And I get to write my truths on it.  Here are my truths.
~I am in love with what I do.
~I love my students and would never put them in jeopardy.
~The blog I have written has nothing to do with my sex life.
~My sex life is nobody's business but my own.
~My sex life is not nearly as interesting as these rumors lead it to sound.
~This blog has brought me more opportunities than I could have possibly imagined.
~This blog saved my life.
~The pictures I have posted are benchmarks so I can look back on my sickest moments.
~The pictures were a survival tactic when I hit rock bottom.
~I am still here, despite the fact that a majority of aHUS patients die within the first year of diagnosis if they aren't treated with Soliris.  It is indeed a terminal illness.  I wasn't treated with Soliris for 14 years.  I'm still here, and I'm not going away without a fight.  Even the doctors aren't sure how I am still here.
~This experience has really made me question my trust in the people around me, something new for me.  I am so trusting, even after being bitten several rimes.  I like to believe that people are good, and there are bigger and better things in store for me ( and Matthew of course.)

So, these are the truths I need others to know: 

~I AM extremely grateful for the help we were given while I was sick, and for those colleagues that continue to support me in their own ways. 
~I don't and never will have children of my own.  My students mean more to me than a salary, pride, ego, or any of the other petty reasons that would have made me back down from academia years ago.  I skyped my classes from a hospital for god's sake.  I need my OCU students to know I didn't leave because I wanted to leave them.  I need my OU students to know that I would be there teaching with them if it were up to me.  I even tried to stay present, but was clearly made to feel as if I didn't belong, so I just took the hint.

But it isn't up to me.

Again, I thank those friends who have remained supportive after I got my bearings and came back from the dead.  I have some amazing former colleagues at OU.  But my trust has been severely shaken, and I am ready to move on. And I am ready for my husband to stop taking all the pain from this experience on himself.  It's understandable, since he saved my life so I could do great things.  I don't plan on letting him down of all people.

And for these reasons, double standards as they might be, slightly sexist, intrusive, and beyond my control, I am coming out of the closet about all of this. I was never a good liar, and I think there are lessons to be learned about my experiences.  This is why I no longer teach in academia in Oklahoma, but that is not the only option for me in this life. This blog is not coming down, I won't change my image (heels and all), and be careful who you disrespect in the arts.  The feeling of being wronged is a great fuel for creating art. You might just find yourself portrayed in a play one day.


  1. Hell hath no fury like a theatre artist scorned!

    I'm sorry you have to put up with this crap, but good on you for standing up for yourself and refusing to back down.

  2. Thanks for sharing this again in light of the Scamehorn revelations.