March 5, 2015 at 8:17pm Tava Wilson Tournant received a text from her 17 year old daughter, Christina.
“I love you mom.”
Dysautonomia had drained Christina Tournant dry of hope, she felt her fight was over, and she jumped to her death. At 8:25pm her body was found at the foot of a seven story parking garage at the Tampa International Airport. In her car were pictures of her with family and friends with notes on the back of them thanking them and encouraging them to find joy in life. On her mother’s photo she wrote: “Mama, You are perfect. Thank you for being my best friend. Love you to pieces. Sorry, I couldn’t keep fighting. Love, Your full on dweeb” (which is something mom and daughter called each other and laughed about)
Christina's suffering from Dysautonomia and Ehlers Danlos Syndrome (EDS), which commonly accompanies Dysautonomia, was met with dismissal and negligence by the medical community. Her doctors are not to blame, but I feel obligated to share Christina's tragic fate and open the door to a conversation in awareness. More training, education, and activism in the Dysautonomia community will prevent people like Christina and myself from feeling that the only way out of this invisible and debilitating condition is to end their own life. I had the opportunity to connect with Christina’s superstar mother, Tava, and hear a bit more about her story. Tava is on the board of The Dysautonomia Project, and is now an outspoken activist for the condition. She has warrior strength and resiliency, and continues to find purpose in Christina’s death despite the profound repercussions it has had on her, her family and friends. Tava, thank you for allowing me to share your incredible daughter’s journey. You inspire me.
Christina was an old soul. She radiated light and made everyone she met feel special. An accomplished athlete, Christina was a a state champion gymnast, track star, and outstanding swimmer. She was the valedictorian of her high school, got a perfect score on math section on the SAT, and eventually was accepted into her dream college, MIT, to swim. Tava describes that she, “...never met an obstacle she could not or would not conquer.” She faced the world with grace and vigor.
Christina’s health problems started early, she was diagnosed with Hypohydrosis at age 3. This condition is the inability to sweat, but what the Tournant family didn’t know, is that Hypohydrosis is a malfunctioning of the autonomic nervous system. She began experiencing GI problems that worsened upon puberty. Pain and extreme stomach distention followed every meal as she was put on medications, a restrictive diet, and underwent multiple tests. Nothing worked, and no one knew what was wrong. Joint pain, brain fog, severe headaches, trembling and eye twitching followed in the years to come as Tava and Christina saw a neurologist and a psychiatrist who gave her some anxiety reducing tools and reassured her nothing was wrong. She was told, “Since she was doing well in school and athletics, her issue couldn't be too serious.” She saw a variety of doctors, particularly G.I. Doctors, and was told this same thing over and over again. However, the doctor’s didn’t know Christina, she was a fighter and would endure all the pain quietly in order to do what needed to be done. Tava desperately tried to explain this to doctors and was labeled an “anxious mom.” Frustration consumed them following every appointment as they continued to swim in this pool of uncertainty and desperation. Christina said one day, “Just tell me I have brain cancer or anything, really, and at least I’ll know if I’m going to be okay or not, and if there is something to help.” These very same words have left my lips too as the uncertainty also drove me into a place where cancer would be a better diagnosis than another blank stare.
Eventually, Christina was diagnosed with POTS. POTS is a form of dysautonomia characterized by a rapid heart rate and drop in blood pressure upon standing. POTS causes many debilitating symptoms, and leaves some wheelchair bound. However, no doctor had ever suggested this, and no doctor knew of any specialist for them to see. Still Christina’s other doctors did not seem to be concerned about her heart situation. Tava knew something more had to be wrong, and insisted that Christina have a colonoscopy done despite her GI doctor telling her it was not necessary. Christina cried tears of joy in the recovery room after discovering she had gastroparesis and Ulcerative Colitis. In late July, she was finally ‘officially’ diagnosed with Dysautonomia by a Cardiologist, but doctors told her that, “her case was mild, and she would likely grow out of her symptoms.”
Despite her lack of improvement, she insisted on starting her first year of college at MIT. Her symptoms continued to worsen upon beginning the school year. She had gone from 127 to 105 pounds, stopped swimming due to the inability of her body to regulate temperature, therefore her inability to stay warm in the pool even during the most rigorous of workouts, and started diving instead. She completed the fall semester with excellent academics, but upon returning to MIT in January, she contracted a severe upper respiratory infection and with fevers of 105 degrees that confined to her dorm room for much of the semester. Christina was drowning in relentless waves of health obstacles, and on January 25, 2015, texted Tava, “I feel like my body has finally given up on me.” Fatigue overwhelmed her as she could barely walk 20 feet, she was often too dizzy to go to class, was sleeping 16 hours a day, experienced numbness in her extremities, and despite her critical condition, had limited access to medical care due to the Boston weather. Tava flew out, and Christina broke. She finally revealed to her mom the extent of her pain, and was forced to take a medical withdrawal from MIT with assurances that they would welcome her back in the Fall or whenever her health problems improved. Upon going home to Tampa, she was put on an antidepressant which she may never have taken, and Tava and Christina’s father began researching POTS specialists around the country. Her parent’s hope was restored as they planned to give Christina a few days to rest, and then share their findings about specialists with her on March 6.
On March 5, Christina jumped. The last person who anyone would’ve expected, ended her life by choice. Tava explains that Christina’s silence about her suffering was not the answer, nor was suicide. Patient validation is essential in situations where a person may look fine, but feel terrible. Christina’s loss of hope was largely due to the amount of dismissal she met from doctors. Suicide awareness in the chronic illness community is not often talked about, but it is important to open the door to the conversation. It is the #3 most common reason for suicide, following mental illness and addiction related reasons.
Christina’s story strikes a nerve deep within me. It runs a ghost like chill down my spine as I see so much of myself in her. I never knew her, but I constantly feel her presence with me. I have to fight for her, and I feel she has chosen me to be a vehicle of change and to share all that she has left unsaid. I feel no words could ever do her justice, but I want to at least try. She gives me strength. Not only is the blog essential for my own purposes, but it is important to give a voice to others who may not have the privilege or access to elite doctors and a platform to share. I cannot stress the importance of patient validation and dysautonomia awareness enough. Although it is thought to be a fairly rare condition, over 70 million people worldwide have it. This is more than either MS or Parkinson’s yet it is not taught in most medical school and nursing programs. There are plenty of young people, especially women, just like Christina and myself suffering quietly, as we are constantly pathologized, misunderstood, and told we look fine and are probably "just stressed." I hope that by sharing Christina's story, I can give just one person out there a little hope, or one doctor a little perspective, or one parent a little more direction. Change starts with you, and this is my mission.
I have this vision of Christina’s death. She backflips gracefully from that seven story parking garage and swan dives into freedom while the moon and the stars smile. She finds peace from the torments of her body, and enters sweet rest. I hope you have found peace, Christina. I think of you often.