Wendi's Story: Team Hope Walk/Run 2014

A beautiful happy and healthy Wendi.

A beautiful happy and healthy Wendi.

I've been writing this blog post in my head for months now.  And as I sit here trying to type, I'm still not sure what to say.  On August 26th, my first wife and best friend Wendi Williams would have been 42 years old.  I remember when 42 seemed "old".  These days it seems cruel that someone could die so young and under such terrible conditions.  

Whenever I tell people about Wendi's death, their first reaction is "What is Huntington's Disease?," or "I've heard of it, I think."  When I detail the last 8 years of her life, how fast she deteriorated and how much she struggled at the end, many gasp in horror.  They offer their prayers of comfort and move on.  

These days whenever I get online I see that another video from the ALS "Ice Bucket Challenge" has been posted and I get that same feeling I get whenever the world rallies around "Breast Cancer Awareness Month, week, hour or whatever."  It's a bit resentful or maybe it's just jealousy.  Both illnesses are devastating to those who have experienced them, and in the case of ALS, much like Huntington's Disease, there is no cure.  In fact, at the Center of Excellence at the University of Virginia, where I often took Wendi, they studied ALS as well because they are, in the world of diseases, family in some ways.  Similar yet completely different.  Either way, I just want to scream "Why aren't people dumping water on their heads and raising money for HD?  Why aren't major corporations and sports leagues covering themselves in ribbons and filming commercials for the disease that took my wife, my father-in-law, and many generations before.  Why isn't it my disease that's sexy or en vogue?"  Sounds childish I know, but having witnessed a once beautiful and wonderful woman decay to the point of being totally dependent on me and others for round the clock care, to exhaust so much energy against an opponent that was going to win no matter what I did, and to watch my son as he grieves over the loss of his mother, a mother he never really got to know,  I can't help but feel demoralized.  Being a caregiver sucks.  Maybe if there was a chance we could have won this battle, it would have been easier, but from the moment the doctor said that she tested positive for Huntington's Disease, we knew how it would end.

I first saw Wendi in 1995 at the wedding of my friend's Jeff and Beth Hider.  I was 23.  The first thing I noticed was her smile.  It was the most animated and beautiful smile I had ever seen.  But I was too shy to actually talk to her.  I think I made a few comments as we all watched Jeff and Beth leave the reception that made her laugh and made me feel good.  I'm good at that, saying random things that make people laugh.  I'm not good at engaging someone one on one, especially if  I'm more than a little bit attracted to that person.  So I did nothing.  Well, I didn't do entirely nothing.  As soon as Jeff returned from his honeymoon and got settled, I kept asking him who that girl was, describing her, especially that smile.  He recalls me saying "She had the whitest teeth."  I may have said that.  Who knows?  I kept wondering if they saw her regularly.  What was she like.  "Her name is Wendi? She majored in music?  Jeff, I have to meet her."  I know I drove him crazy but Jeff is too polite to tell me to "Shut up!  Move on!"  Well time took care of that.  

In September of 1999 I went to a dinner organized by a friend of mine at work.  He was sort of the unofficial event coordinator for the 20 somethings in our company.  It was not the best time in my life.  I was 27, unlucky in love, not even sure I liked my career path, if I could call it that.  That night at Bennigan's in Falls Church, VA,  I sat across from a girl with a beautiful smile, a quirky laugh, and of all things, a vegetarian. I also knew that she had recently started with the company and her name was Wendi.  The next day I looked her up on our company intranet.  This was before the era of Facebook of course, and whenever I mention this point I get teased that I was stalking her.  Whatever. I was smitten!  What caught my eye was that she graduated from Mary Washington College in 1995.  Light Bulb!

That weekend I was helping Jeff and Beth move into their new house.  I asked him if Beth knew a Wendi Cooke while she was at Mary Washington.  He gave me a weird look and said "Uh yeah!"  "Really?"  "She was her suite mate... and she was at OUR WEDDING!"  "What?  That Wendi!  Seriously!"  It's been 15 years but that's pretty much how the conversation went.  

Even though Wendi and I worked at the same company, we worked at two different locations. I decided to send her an email, reminding her of the dinner and how we had been in attendance at Jeff and Beth's wedding 4 years earlier.  Talk about being nervous awaiting a response.  I think I had Jeff review my email to make sure I didn't sound too weird.  But she wrote back.  And I responded.  And she responded.  This went on for a few weeks.  We wrote silly emails to each other, cheered each other up during bad days, and created our own little fictitious world that we called "I, Wendi!"  She was quirky, silly and weird and I loved it.  I didn't actually see her again until she had a meeting at my location and she dropped by my office.  It was strange talking to her in person but there she was....  The Famous Wendi!   The girl who every time I had seen her turned my brain mushy and made my heart race.  And she had come to see me!

In November, I actually called her and we arranged to go on a date that night to see Kevin Smith's "Dogma."  It was the beginning of the happiest time in my life.  The next year I moved into a townhouse and Wendi and I spent most of our free time together either there or at her place.  I proposed in 2001.  I bought her a ring at Tiffany's because her favorite actress was Audrey Hepburn, and one of her favorite movies was "Breakfast at Tiffany's."  I probably should have given her the ring in the signature blue box but instead I put it on my cat Hobbes' collar and had her sit down, and then had him stand up on his legs and present it to her.  I wish I could say that she screamed YES, but in her overwhelmed state she said, "Can I think about it?"  Oi!  It wasn't a rejection of me, but rather the underlying fear of what might lie ahead for her.  Wendi did say yes within 15 minutes of my proposal.  I knew she was scared, but I promised I would be there for her.  

Wendi's dad was already suffering from Huntington's Disease.  Like most people I meet now, I didn't know what it was.  Wendi explained it to me, but it wasn't until August when I would get a first hand look at the disease.  We visited her family in Victorville, California; our first trip as an engaged couple.  Seeing her dad for the first time was shocking.  He staggered around the house, his movements were sporadic and awkward, and it was impossible for me to understand him when he talked.  Wendi's mom had to assist in feeding him and it was almost like watching a feral child eating.  It's the only way I can think to describe it really.  I can only imagine how many HD patients were believed possessed or burned at the stake in darker times.   I had never seen anything like it.  Maybe a sane person would have gotten out right then and there, but I loved Wendi and that was stronger than my fear of what might happen.  I had a choice, and I chose her.  And if I had to make it again, I still would.  I knew I'd cherish whatever time we did have.

Our Honeymoon in... the San Diego Zoo

Our Honeymoon in... the San Diego Zoo

We set about planning the wedding and on October 25, 2002, 3 years after the first email I sent to her, we were married at Red Rock Canyon outside of Las Vegas, Nevada. Our hope was that maybe her dad could make it to Nevada for the wedding because Wendi's sister lived out there.  But months before that, he developed aspiration pneumonia and even after he recovered from that, the HD symptoms only got worse.  

Douglas Wallace Cooke died February 15th, 2004.  Wendi and I spent a week in California once it became evident that he would soon pass.  Wendi received the news that her father was dying on a day that she managed to rear end the VP of our Company and totaled our car.  It was the beginning of what would be the hardest week of my life up to that point. Wendi, her mom, my sister-in-law Janel, and I took turns sitting in a room with Doug waiting for him to pass away so that we could make a call and donate his body for HD research.  Timing in that was crucial. Doug held on longer than anyone could have expected.  So long in fact, that his body had deteriorated so much, the research center could not use his remains.  Wendi and I had to fly home on Valentine's Day, unable to stay any longer.  We called her mom the next morning, only a few seconds after Doug had passed away.  Though we knew it was coming, she was devastated.  Out of all of us the preceding week, Wendi outwardly at least took it the hardest.  

Her period of grieving though was disrupted when we found out in July that she was pregnant.  For the longest time she wasn't sure she wanted to have kids, but she changed her mind.  We didn't know for sure that she carried the Huntington's gene but we also knew that if she did, there was a 50/50 chance that it would pass on to her offspring.  We discussed these issues with doctors and counselors.  It didn't matter.  We were going to be parents and that was more exciting than worrying about "what if."  Our son Douglas Evan Williams was born on March 4, 2005.  3-4-5...  We loved it.    We figured that if we had another child in the future we should time it to be born on 6-7-8.  We were dorks.  

Watching Wendi prepare to become a mom was a joyous experience.  From the moment she found out, she did what she always did.  She went to the book store and bought some books on the subject.  On one of our first doctor's visits after deciding to start a family, she looked at the doctor and asked innocently "how does it happen!"  We all laughed and that led to one of her trademark explanations that began with an embarrassed smile and the words "I mean..."  That was a genuine Wendi moment.  Those were moments where she would say or do something so kooky, so totally Wendi only to follow it up with "I mean..."  

She learned quickly that no book prepared you for motherhood.  You have to make it up as you go along.  She also figured out that boys like to pee during diaper changes.  The first such moment happening while my dad was leaving after a visit.  We heard Wendi scream from upstairs.  We rushed up two flights of stairs only to see her standing there yelling "HE PEED ON ME!"  Again... another Wendi Moment!  

Wendi and I Celebrating Evan's fourth B-day!  

Wendi and I Celebrating Evan's fourth B-day!  

We moved to Clifton three months after Evan was born.  Life was looking up.  We sold two houses while the market was hot, bought a single-family home and still had money left over to invest and plan for the future.  

In early 2006, Wendi had another car accident.  We decided that she needed to be tested.  We saw a neurologist and set up appointments for various tests including DNA.  The day the results came in and the doctor told us that she tested positive for Huntington's, I nearly fainted.  Life was now totally different.  

From that moment, things began to slowly unravel.  By 2007, she could no longer drive after tearing the front end off the car while backing out of the garage.  In March of 2008, she was placed on long term disability after nearly getting fired for dwindling performance, even though we had been open about her condition from the get go.  Our company told me that they had the right to fire her, or that the American's with Disabilities Act only required them to get her a special chair if she need it,  but that they would allow her to apply for Long Term Disability because they genuinely cared about Wendi.  (The same company would later fire me after 15 years saying they had nothing for me anymore and hinted I was unreliable due to my care giving responsibilities.)  

While on Disability, Wendi qualified for Social Security, as did Evan due to him having a disabled parent.  The Long Term Disability Company, UNUM, deducted Evan's amount from Wendi's Disability amount claiming that because she was home, we didn't need the extra money for childcare.  Essentially, they legally stole money from a child.  Our employer who signed the contract with UNUM did nothing.  And every year I had to explain to the insurance company that yes she still had HD and could not return to work.

By 2009, our relationship was no longer husband and wife, but rather that of a full-time caregiver and patient.  The Wendi that I fell in love with, the animated and beautiful smile I couldn't live without, was gone replaced by an expressionless face, lost in her own deteriorating thoughts.

We made many decisions regarding our future and Evan when she was diagnosed. One of the last and most difficult decisions was that Evan needed a sibling to be there for him should he develop the disease.  She knew I had been communicating with Tiffany for months, and she knew her story as well.  It wasn't an easy decision or one taken lightly but after meeting Tiffany in person, she knew she could trust her with the most important thing she had in this world, our son Evan and that she cared for him as much as if she had given birth to him herself.  

Just writing this much has been difficult, so describing her progression from that point forward would be like reliving the worst moments of the past 5 years.  Wendi died on March 3, 2014, the night before our sons 9th birthday.  

Mother and Son share a hug on his birthday, a year before she would pass away.

Mother and Son share a hug on his birthday, a year before she would pass away.

I wish I could dump a bucket of ice water over my head and make all this better or feel like I was motivating people to help find a cure or at least think about something they never bothered to consider before.  I wish the NFL, MLB, or NBA would wear special uniforms and sell merchandise to draw attention to this disease.  I wish HD had a humorous tongue in cheek slogan like "Save the Ta-Ta's!"  It doesn't.  Those who have HD don't broadcast it, instead growing ashamed withdrawing from society and into their own minds as they lose control of their physical and mental capabilities, embarrassed that they rely on others to help them use the bathroom or dress and feed them.  In Wendi's case, she had to wear a hockey helmet to protect her head as she would bang it into walls unable to control her body's movements.  She had to wear diapers because she didn't know when she had to go, and even if she did, she risked hurting herself trying to get to the bathroom.  Sometimes she became so worked up over a little thing that we had to yell at her like a small child just to get her to snap out of it.  Those wonderful Wendi Moments were replaced by something darker, more sinister, even frightening to witness.  As a caregiver you work tirelessly as your life partner and best friend becomes almost infant like in their needs.  You exhaust yourself, spending every waking moment in a state of perpetual readiness in case a crisis develops... be it a fall or something as trivial as a change in the TV Schedule.  And when they are in a nursing home, as Wendi was the final 6 months, your heart jumps whenever the phone rings, dreading the call you know will come. But no matter how you try to prepare yourself mentally and emotionally, you're never actually prepared for it when it does.  You just cry asking the same questions "Why?  Why her?  What could I have done?"  You can only accept that in the war against HD, the only one who wins is the disease.  

Team Wendi 2013

Team Wendi 2013

On September 27th, Tiffany and I, along with some of Wendi's close friends will be walking in the Team Hope Walk/Run for Huntington's Disease.  God forbid they add "for the cure" else Susan G. Komen would sue the HDSA for whatever money they have managed to procure to help fund research.  You don't need to dump water over your head and challenge someone.  Simply share and donate.  Our goal is to raise $1,000.  It's a small goal and yet it's so very large at the same time when it comes to Huntington's Disease.  And even if you can't donate, share this blog post, and let others know about Wendi.  It doesn't capture everything that was wonderful about her, but I hope it captures enough.  Donate so that our son can have hope should he develop it.  That those of us who care for HD patients can believe that we can win this battle someday.   It's sad to wish that there was a celebrity out there who could rally people to take an interest in the disease.  We have Woody Guthrie and only those of use who love musical history know of him at this point.

There will never be another Wendi, but at least I still see glimpses of her in our son.  I just hope I can keep that glimmer of her alive in him for as long as I live.