The other side of vEDS: Frank’s story

Posted May 17, 2019

This is my history of the other side of vEDS, from the spouse and father of two beautiful women with vEDS. This piece is the story of Grace, my wife of 9 months.

In 1978, I was a young Air Force Airman stationed in Southern California. I met and fell in love with Grace. It was instant. I knew after that first dance at Knotts Berry Farm that I was madly in love with this petite young woman. But I noticed things. She was an accomplished athlete, but when she played volleyball at a squadron event, she ended up with bruises from palm to shoulder. When asked by my coworker what happened, she jokingly said, “Frank beat me.” She had to quickly pull him off of me as he was ready to tear me up.

At the wedding in June of ’79 at George AFB in the California desert, as she exited the van in her wedding dress, she gouged her head on the hinge. Then, walking down the aisle, she dislocated both knees. Her father put his arm around her waist, dragged her down to the altar, and lifted her swinging her legs forward, the force of which snapped both back into place. He put her hand in mine and said, “She’s your problem now.” The chaplain touched both of our heads. As he tapped the top of Grace’s veil, his hand came away bloody.

Fast forward 7 months and Grace is 7 months pregnant. We’re in the Philippines. Grace had ear surgery. The doc that was on staff on Monday to change her dressing was a dermatologist. He examined her quizzically. On Wednesday, the dermatologist mentioned that there might be a problem. Grace may have something called vascular Ehlers-Danlos syndrome.

At the time, he said there had only ever been 7 recorded cases that he could find. Her pregnancy was high risk. We were both going to the main Air Force hospital in San Antonio, TX.

Due to the ear surgery, the flight from the Philippines had to be done at sea level pressure on the MEDEVAC. A C-141 cargo plane was converted to hospital configuration. 4 aerial refuelings were required to get to California. In California, we switched to a C-9 Nightingale MEDEVAC aircraft for the flight to San Antonio.

Once at the hospital, a team was assigned. Doctors and nurses for around-the-clock care. It is a teaching hospital. At one point, a colonel comes in with about 15 other doctors. Their job is to evaluate and see if they can make a diagnosis. The colonel examines her. Finally has an “Aha!” moment and asks her to stick out her tongue and touch her nose. She sticks out her tongue and touches her nose with her finger. The collective group of doctors hold their breath. I, a one stripe Airman, stand in the corner. I look at my single stripe. Wave it goodbye. The Colonel laughs. They all do.

I have to go back to the Philippines. I leave her there. It’s before Christmas, but I can’t stay. I tell her I love her and leave.

February 28th, I get the word from my First Sergeant that I’m the father of a beautiful baby daughter. I’m told to pack and be on the next available aircraft. I fly out and we stop over in Hawaii. The chaplain that had married us at George AFB 9 months before has been transferred to Hawaii and meets the plane with a staff car. He takes me to his office and tells me that something has gone wrong. Grace has passed away.

I don’t remember getting from Hawaii to Texas. But I’m brought into the ward and meet my new daughter, Crystal. She is covered in a beautiful crocheted blanket made by one of the nurses. I pick her up and hold her. I look at her. She has the same visible venous structure on her chest that Grace had. I have just lost one lady to vEDS, now I will be raising another with vEDS. The same thing that killed my bride. It will kill her, too.

Her name was Crystal. And I so miss her.

I have dedicated my life to EDS awareness, educating doctors and medical personnel at every turn about EDS and vEDS. We must stop that phone call in the middle of the night.

 

Disclaimer: Each story submitted to The Ehlers-Danlos Society for this #myEDS/#myHSD anthology is published "as-is," with only minimal edits for spelling, grammar, and typographical mistakes. Each profile reflects the personal views, experiences and opinions of the individual authors-and, thus does not necessarily represent the views and/or endorsements, individually or collectively, of The Ehlers-Danlos Society, its leadership, staff, boards, or communities. We can also not confirm any medical claims or comments in the story.

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