Beginning in 2008, Kathy has taken care of this incredible couple, Brandi and Scott Witt. They have a beautiful daughter, KT (Katherine Tamara). He had a rare, incurable genetic disease called Vascular Ehlers Danlos Syndrome. It is a genetic disease, with an autosomal dominant defect resulting in improper synthesis of type III collagen. It affects approximately 1 in 100,000 to 250,000 people. The vascular type is considered one of the more serious forms of Ehlers–Danlos syndrome because blood vessels and organs are more prone to tearing with it. Patients with EDS type 4 often express a characteristic facial appearance (large eyes, small chin, thin nose and lips, lobeless ears), have a small stature with a slim build, and typically have thin, pale, translucent skin. About one in four people with vascular type EDS develop a significant health problem by age 20 and more than 80 percent develop life-threatening complications by age 40. Scott's mother and sister had both died of the disease before age 40. He lost his battle with the disease on March 15, 2011 at the age of 36.
But, that doesn't really tell the story.
I first met Scott after Kathy had told me about this amazing family that she had been caring for. The patient, Scott, was an incredibly gentle and kind individual who had completely fallen in love with Brandi on their first date. She was equally smitten. After letting her know of his new diagnosis of Multiple Sclerosis three months into their relationship, she chose to stay by him. The ensuing battle with Ehlers-Danlos did nothing to dim the love that they shared.
Given the newness of their relationship, some people would have chosen to leave Scott, knowing what he was likely to face. Certainly, by the time the Ehlers-Danlos expressed itself, some of those remaining might have chosen to leave. Other people, however, follow their heart and make choices based on values that do not necessarily provide tangible rewards in the here and now. I want to surround myself with the people that "get it". Brandi is one of those.
I first saw Brandi without her knowing it. I was on the 6th floor of the Johnston R. Bowman Center, probably doing nothing because I am in administration and have no real purpose anymore. She was walking briskly through the unit on her way to handling an insurance issue concerning her husband. She is a very good looking woman. She had on heels, was wearing a skirt, and had a purposeful look about her.
Insert Cake's song, "Short Skirt/Long Jacket", here. Did they meet her before writing that song? Really, go on Google, lookup the lyrics of that song. Do it now. That is Brandi to a "T". Do it, dammit.
After getting to know her, I quickly found out that while she is clearly able to work as a CIA operative and probably has a number of certified kills to her record, she has a heart of gold. And boy, did she love her Scott (and Starbucks, too!). She learned how to do dressings that many nurses would have difficulty handling. She can handle tracheal suctioning. She knew how to do difficult transfers. While Scott eventually develped a Stage IV decubitus ulcer due to immobility and nutritional deficiencies (often-times a measure of neglect in nursing homes), it was the cleanest and most well cared for ulcer that I've seen in all my years of nursing. In her care of Scott, she (pilfered) acquired an incredible closet of medical goods and a stethoscope that rivals mine. (Mine is better... uh, really.)
On her second date with Scott, they went to see a Cubs game. Scott, flush with simpatico, thought he knew Brandi completely. He realized, however, at the point of buying a hot dog, that he didn't know what kind of mustard Brandi liked... brown or yellow. In true Scott fashion, he got one of each, intending to give her the one she liked best. She made her choice and the evening went on splendidly. Little did he realize, until she told him weeks later, she HATES mustard in all its forms. She literally had choked that hot dog down. She was from Iowa, not Chicago... and loved ketchup on her dogs.
So, while a true Chicagoan would add sport peppers, mustard, tomatoes, onions, neon green relish, celery salt and a pickle spear (never ketchup!) to any hot dog they would eat, this is the recipe Kath and I made for their celebration of his life. Most people would call it a wake, but it was definitely something other... a celebration of a very special person, Scott, and the woman who loves him.
1 Ball Park Beef Frank
1 Rosen Poppy Seed Bun
Brown or Yellow Mustard
1. Steam hot dog until completely warmed
2. Place in steamed bun
3. Add mustard to the sausauge. Never dress the bun, only the sausage.
4. Choke down as best you can.
5. Live life more fully than almost anyone I have ever met.
To learn more about life: http://www.werewitty.blogspot.com/.