Stockholm Syndrome and The Duggar Family

First, I will preface this with the announcement that today's blog has almost nothing to do with Trouper and second, it's not intended to hurt or offend anyone and please try and remember this is my story, my reality and finally, my healing. Writing this blog has been in my thoughts for many, many months and finally, someone mentioned that writing is cathartic for them and allows them to put into words what they are so often unable to verbalize. With that said, here's a small part of my journey.

Yesterday, a friend asked me what I thought about the Duggar Family and the current "scandal" involving the oldest son Josh Duggar molesting young girls. We discussed it and she told me she was shocked that his sisters, even after confirming that they were indeed two of his victims, would continue to stand by and support their molester. I wasn't shocked, in fact, I understand their feelings and I sympathize with these young girls because I too was a victim of sexual and physical abuse at the hands of a relative. In my case, that relative was my stepdad, Frank.

Frank's abuse was far reaching and effected every member of our household. He not only sexually abused me; he also physically abused all of us and was unusually cruel and vindictive. Parts of my childhood are a blur and I've come to realize that forgetting them is my brain, and my spirit's way of healing. No, I never told anyone although I've since learned that many people had suspicions. I lied several times when asked because I was too afraid to leave my little sister, brother and Mom alone with him. I thought if I bore the brunt of his abuse they would be safe and that in my own little way, I was protecting those that I love the most. I was wrong, but that's not my story to tell. Guess protecting the ones I love has always been a pattern for me, and an instinct I learned very early on. The sexual abuse stopped when I was a young teenager however the emotional and physical abuse continued until I couldn't take it any longer and moved out when I was a senior in high school. Yes, I went back and lived there again for about a year, during my freshman year of college, but he literally didn't say two words to me during that year and in my adolescent mind, I thought he had changed as much as I had.

What does my revelation have to do with the Duggar girls? I truly believe that they suffer, just as I did, from a form of Stockholm Syndrome. Stockholm Syndrome is the phenomenon in which hostages express empathy and even sympathy with their captors sometimes to the point of defending them. No ands, ifs or buts about it, that was me. I wanted him to approve of me, probably because his approval meant he was happy and I wouldn't be punished. However you look at it, that's what they have been trained to do, defend their abuser. It's not for us to judge, or even understand, our job is to take their experiences, combine them with our own, and make sure this doesn't happen to the ones we love. Learn from their situation, sympathize with them and above everything else, pray for their entire family. This isn't the end of their journey, and they can help so many with their story, and in some way, I hope I can too.

This small, curved and dark path of my journey ended on August 20, 2013 when Frank passed away after many years of poor lifestyle choices. In all reality, Frank's hold on my life ended on September 11, 2010; the day my baby brother left this earth. I spoke to Frank many times during that week, even sat and talked to him and his wife after the funeral and I remember wishing I could scream at him that he no longer matter to me and that his evil reign had come to an end. However, everyone was hurting and that wouldn't be honoring the spectacular life of my brother so I kept my mouth shut (please take a moment to pick your mouth up off the floor). Many people in my life know my story, I've shared it with close friends and of course my family. I've learned I have no reason to be ashamed of the abuse, and that it was in no way my fault. Did it have an effect on my journey, of course it did. Does it continue to effect me today, absolutely but it doesn't define me. It simply makes me stronger, wiser and even more tolerant. I try to remember that forgiveness doesn't excuse someone's behavior, it just prevents it from destroying your heart.

Complications

There's a song by a very handsome man (not as handsome as my man of course) Tim McGraw titled Live Like You Were Dying. In the song, a sick man in his early forties (similarities abound) explains what he did with what little time he has left. He climbed a mountain, went skydiving, rode a bull and even asked someone for forgiveness. My sick, early forties husband is on borrowed time and for the past two years, every once in a while mentions something that is on his "bucket list". Just like the song, when you get the news that your time is limited, you reassess your life and what's truly important. You think about the things you always wanted to do and revisit all the "one day" items you have stored in your mind. However, in all honesty, if a heart doesn't come (and, I fear, rather soon) that "one day" will slip away. It truly breaks my heart to not be able to give him all the moments he has dreamed and talked about for so long. Money, as with anyone, plays a huge part but so does our transplant listing. Trouper can't be more than 2 hours from the hospital thus our options are truly limited.
I titled this blog Complications because being on the transplant list is wonderful blessing but it's also very restricting and complicated. Chances are, if you are sick enough to be placed on the transplant list than your time on earth is probably very limited. Trouper reiterated this to me the other day when, after a disagreement, he said "Dara, my time on earth is drawing to a close and I don't want to spend my last days angry". Heartbreaking and another reminder that our future hinges on a transplant. So, we try and make the best out of our situation. Over Memorial Day, our family and a few friends will go to the lake for some fun in the sun. I would like to say we've planned a cruise, or a trip to Ireland (okay that's my wish, Troup's is Italy) or at the very least planning a huge family reunion on a beach. Nonetheless, we will be together for four carefree days near the water.
Being married to Trouper for almost 23 years and knowing him for 30 years, I can say that his ultimate wish is to be near his family and friends. Please take the time to visit, call, email, or text. Yes, I realize Atlanta probably isn't number one on your vacation destination wish list but when time runs out, you can't buy more. Another complication. I know life gets in the way and you forget to check in with him but, when he runs through your mind, let him know.

As always, thank you to all our friends and family who've traveled this journey with us, we wouldn't be here today if it wasn't for your prayers. And one last thing, how would you spend your time, if given the chance to live like you were dying?

Want to live forever?

I will admit, before my best friend, husband and father of the two most wonderful kids in the world needed a heart, I didn't think much about organ donation. Now, it seems I'm consumed with thinking about organ donation, researching organ donation, checking the statics for our region or talking to someone about our need for a transplant. I know friends and family who've been asked to donate and have said no, even since our journey began and while I don't agree, I'm not upset because that's their journey and decision, not mine. But I do hope and pray our loved ones are informed, and decide to preform the ultimate act of kindness and donate.
Some facts: About twenty people die everyday waiting on a transplant while one person who donates can save up to eight lives. Most major religions support organ donation and consider it to be a final act of love and generosity. There is no cost to the donor family and an open casket is still an option after donation.
Last, if you decide to be a donor just don't mark the X on your driver's license. Talk to your loved ones about your decision and make them aware that you are passionate about donating. In the end, they will be the ones making the final decision and they need to know and understand your wishes. It's a hard conversation, but something very worthy of a few minutes of your time! Remember, what you do for yourself dies with you but what you do for others lives forever!

Organ Donation Discrimination

Let's face it, most of us have experienced some type of discrimination in our lifetime. Racial, sexual orientation, gender based, and yes, even body type (I've been treated differently because I am overweight) discrimination is just normal life. Is it fair, no, should we bust our butts to change it, yes.
Throughout our transplant journey, I hadn't given a second thought about the sexual orientation of Trouper's eventual donor. I have thought about their family, friends, religion and even if they will be a happy go lucky person, just like my Trouper. Sometimes, late at night when I can't sleep, I wonder if the way they died will somehow "scar" their heart. Will that have an effect on my husband? Will their family want to know who we are, or ever want to share stories with us? But again, I have never thought about their sexual orientation, who they chose to sleep with, who they chose to share a life with, only if they have a loving, kind heart.

Back in August, when I flew home to meet my new nephew Jackson, I noticed a sign in the airport that said something like "the average wait for a heart transplant at Baylor Hospital is 9 days" which STUNNED me as we had already been waiting for several months. I wondered how, or why, they would be able to perform more transplants than our Atlanta hospital. Atlanta and Dallas are both major cities, the hospitals are both major hospitals but I went about my visit and forgot about the sign. Fast forward to two weeks ago, when Trouper's coordinator asked him to come see the doctor on a random Thursday. What he was told was shocking, and honestly, very disturbing. He was told that in the past, several groups have been unable to donate blood, tissue or organs. This group includes gay men, anyone incarcerated for more than two days in the past year and anyone convicted of a felony drug offense, no matter when the conviction occured. Our hospital, Piedmont, had followed those rules until January when they started following new guidelines, allowing candidates to sign a release, thus opening the pool of donors by thousands. Emory, just a few miles down the road, did the same a few years ago and tripled their transplants. Piedmont, by easing the restrictions, has done more transplants in two months of 2015 than they did in all of 2014! Talk about amazing statics! So Trouper signed the release without giving it a second thought. The doctor explained that previously, testing of organs/blood took longer in potential donors from these groups so the CDC had restricted their donations. However, in the past few years, technology has gotten so good, they are able to test and have results in a matter of a few hours. Again, he signed without giving it a second thought.

My blog today isn't so much about the pool opening for us, and our chances of a heart increasing, although that is a wonderful thing, it's about the discrimination that families face when their loved one dies and wants to generously donate. They are already grieving their loss, and going through a horrific experience, but to add the nastiness of discrimination breaks my heart. If you, or your loved ones fall in the group that I mentioned, please go ahead with your donation and know that finally your donation will be accepted, and will save a life. Please visit http://www.gavelife.org/from-gay-men to learn about current efforts to abolish this discrimination. Also, visit http://donatelife.net/organ-donation to learn about signing up to be a donor, and remember to share your wishes with your loved ones. In the end, live life then give life. You can't and shouldn't take your organs with you, let your legacy live on after your gone!

A Genuine God Moment

This month, our family quietly observed the two year anniversary of Trouper’s heart attack. We also observed the National Day of Love (Valentine’s Day) and President’s Day. It’s been a fairly uneventful few months, just anxiously awaiting a new heart. We did experience a genuine “God Moment”, one that I think has set Trouper on a new path, hopefully something he can continue after he recovers from his heart transplant.

Before I start, I’d like to say that yes, over the past few years we've experienced several “God Moments” and I know, without any hesitation, that my husband is here today because of a miracle that only God could perform.

On to our moment:

We never go to Ace Hardware. If we need anything that Ace would sell, we go to Home Depot or Lowe’s. They are both closer to our house and typically have better prices. The first Saturday of February, Trouper and I were out and about doing typical Saturday errands; grocery store, pharmacy, gas station and farmer’s market. The kids needed a new shower head for their bathroom and we planned on stopping at Home Depot but by the time we were done with everything else, we were both too tired. We happen to drive by Ace, and Trouper said he would run in and check out the shower head selection. He wasn't feeling well and frankly didn't look too good but he went into the store anyway. I stayed behind to call the house to make sure that Ryan had done the dishes and cleaned up the kitchen from breakfast (I hate unloading groceries in a dirty kitchen). Trouper had been gone about 10 minutes when an Ace employee came outside, pointing at our car, asking if I was Mrs. Gamble. I immediately started shaking, afraid something had happened inside the store to Troup. I opened the car to get out, and screamed is he okay. He apologized, introduced himself as Joe, and said that his son is 25 years old, currently inpatient at Piedmont and an LVAD candidate. He said the family had been so upset, not really understanding much about the LVAD and had been doing their best to research. He had just gotten off the phone with his son, when Trouper walked into the store. Yes folks, a true God moment. Trouper joined us and we talked for about 30 minutes, giving him the LVAD 101 lesson. We exchanged information, and Trouper said he would go and visit Sean (the son) next time he was at the hospital. So the following week, after his cardiac rehab class, he went and found Sean and talked to him for hours. Sean’s aunt was there as well and took notes, asked questions and told Trouper over and over how much she appreciated the visit. Sean shared some of his past with Trouper, Trouper shared some of his past with Sean and a new LVAD friendship was formed. Since that time, Trouper has visited Sean and his family many times and stays in contact with them via text and email. I think Super Trouper finally realized that his experiences; the good, the bad and the downright ugly, could actually help potential LVAD patients. We even went and visited Sean and his Dad on Valentine’s Day, post LVAD surgery. Sean now joins Trouper, and several other hundred patients from Piedmont, as an LVAD recipient. Trouper’s LVAD coordinator happen to come into the room one day when Trouper was visiting Sean. She was a little surprised he was there, typically Piedmont asks the “transplant brigade” to visit all new LVAD recipients and trust me, no one in the group is under 60 so it makes it a little difficult for younger people to identify with them. Plus they have all had transplants, not necessarily LVAD’s so their experience is different than someone living with, or about to receive, an LVAD. I think Trouper’s coordinator realized what an asset Trouper is and for the past month, she’s asked him to visit other patients, and help her conduct an LVAD class. Let’s face it Trouper is a people person. I know a lot of people say they are outgoing but he is truly the friendliest person I have ever met. Thus, I believe, is the making of his new career. I’m not sure how, when or what, but I think he is perfect to assist healthcare providers with LVAD (and hopefully sometime soon transplant) patients. Maybe he can work for UNOS, maybe the LVAD manufacturer but this is certainly a good start! And by the way, we bought a shower head at Ace and the kids (mainly Ryan since Em is at school) is back to taking a shower with non-leaking shower head!  

My "True Meaning of Christmas"

It's the eve of Christmas Eve and as I look out of my office onto the bustling interstate, I imagine all those cars sitting in that disastrous traffic are either a) headed to Grandma's house for the holiday or b) headed to the mall to finish their shopping. We will do neither this holiday season. Am I sad, a little. I have always gone above and beyond during the holidays, choosing thoughtful gifts for friends and family and always going all out for Trouper and the kids. This year, I did neither. Yes, I bought the kids a gift (one a piece) but Trouper and I won't be exchanging gifts; our gift is ongoing and is the gift of time.

Financially, we struggle but that's pretty typical of families with chronically ill/terminal patients. Tons of medicine, weekly doctor visits, supplies, special equipment and even special food literally drain our bank account. This is on top of the standard bills; mortgage, cars, insurance, utilities and done on only one salary. I am in a consistent state of robbing Peter to pay Paul and have become a master juggler; keeping my job, Trouper, house, kids, animals, family, doctors, hospitals, schedules, bills and every other need my family has in the air all at once. I do all of it because I love the three of them; Trouper, Ryan and Emily, more than the breath I breathe and I would do anything for them. So this Christmas, I won't feel sorry for us and what we don't have but rather rejoice in what we do have; each other. This has been a very difficult and yes, I realize I say that every year but this one has hit us hard. Trouper's quest for a heart transplant is a roller coaster, Emily was diagnosed with Crohn's Disease, and I was hospitalized twice with my pancreas disorder. Poor Ryan is the only semi healthy one of the bunch! But would I trade one day, no because through it all, we were together, a family of misfits that fit perfectly together.

This is my Christmas letter to all my friends and family, our year sucked but there were good moments. Emily continues to amaze us with her wonderful grades (ended 1st semester of her sophomore year with a 3.3) and positive attitude even though she has to take shots once a month and continues to deal with chronic pain. She was elected into a leadership position with her sorority and hopes to intern with a charity over the summer. Ryan is an amazing young man, continues to live at home and be in the "trenches" with me. He's working for a national car dealership and he's assumed a lot of responsibility for a young man but continues to impress me with his caring nature. In the new year, he's headed into an acting program and he gets more handsome by the day! Who knows, I might be the Mom of an Academy Award winner someday! Trouper's health was a roller coaster in 2014, just a few weeks ago they told us there wasn't much hope and we wouldn't be getting a new heart. New medicines, some LVAD "tweaking" and LOTS and LOTS of prayer have turned that around and we look forward to announcing a new heart in 2015! As for me, well, I still get up every morning and go to work, I still listen to talk radio and devour all news, especially entertainment news. I still love trashy reality TV but this year I've also learned to love scripted TV like Sons of Anarchy and Orange is the New Black. Oh ya, and I still have three people to hug, who, every once and a while, are all under the same roof at the same time. The true meaning of Christmas this year, my family!

Hospital Waiting Room

Hospital waiting rooms encompass the highs of life, those delicious moments of life that you never forget and the lowest of the low moments, the moments when your life is changed forever and usually for the worst. Last week, as I sat in the ICU waiting room, I looked around and realized our family had experienced all of them, and right in the waiting room of Piedmont Hospital.

I've lost count of the number of times I've sat in that hospital waiting room over the past few years but I can tell you I hate it. I hate the magazines, hate the color of the chairs and deplore the smell. I imagine it to be the smell of fear, sadness and anxiety all rolled into one. I also hate how doctors relay good news right there in front of everyone but take families back into the small, colorless room when they need to relay bad news. Somehow it doesn't seem fair. The families in the waiting room form a bond, and should experience all the news; good news and bad news, together.

When Trouper first had his heart attack and was in a coma, I remember being in the waiting room and not being able to breath. I felt like I was suffocating and every time a nurse, PA or doctor came out, looked around for a family, I felt as if I was going to collapse, waiting to hear our name. When our name was called, I often didn't have the clarity to ask questions, usually just nodding or mumbling something incoherent. I got better, got more organized and started writing my questions down in between visits with the hospital staff and day by day, no hour by hour, the visits became better.

That's how the past two years have been for me, I've had to learn to cling to clarity, learn to organize my thoughts and above all, remember to breath. The waiting room at Piedmont has been my teacher, my guide and taught me all those things. Am I thrilled to be sitting there, sick at my stomach with worry? No. Am I thankful to be sitting there, waiting on good news in front of everyone or even bad news in the little room? Yes. Having the privilege of being in the waiting room means that we are still a family of four. That Ryan and Emily can still ask Dad for advice, I can still hold his hand and feel like I'm the most beautiful woman in the world and our family is together. So, even though I loathe being there, I cherish it as well. Guess the waiting room is the true definition of a double entendre.