Monday, September 12, 2011

#93 - My Heart is Touched

I've found myself to be living a beautiful life in spite of Addison's disease and other major hurdles with my health. I am not a person you would look at and suspect that there was even a problem. Being able to "fake it until I make it" has been my mantra which translates to...even when you don't feel well or when you are struggling, the best route to take is to rise above it and carry yourself as if you are without such problems.

The truth is, there are days when this philosophy won't work for me because I just can't rise above my given situation, but you can be guaranteed that I am trying to lift myself up and out of it. Embracing the "fake it until you make it" mindset has been a life-saver for me because if I give in to how I actually feel and submit to my set of circumstances instead of trying to temporarily leave it behind for a bit, I would be smothered and defeated by my challenges.

When we have a family gathering, I like to join in on the fun. I'm not one to sit back and watch. Yes, I hurt. My body has been sliced and diced and pulled apart and rebuilt and it is a definite hardship to act normal, but I do it. The simple ACT of being normal can actually provide a boost of healing and mental equalizing that is needed to keep moving forward. Depending on your situation, the little normal act may simply be to read a book or to sing out loud to a song you always loved or to have a conversation with a friend and have none of it be about you or your problems.

Sometimes, I long to get out of the house and do something mundane, such as go to the grocery store. Even better, I love a leisurely trip to the library or to take a long walk in the park with my walking stick in hand. I like to go to the beach and look for shells. On our property, I have such a great time in the creek looking for beautiful stones. If I can swing a night out to see a live theater performance, then I am transported away from my aches and pains for a brief time...I refuse to allow the uncomfortable seats with my reconstructed spine discomforts to get in my way of enjoying the performance. This requires focus. I've worked hard to keep my mind headed in the direction I prefer, and let me tell you, for a person who has plenty of painful distractions, it is not an easy task.

One thing that I love to research and focus on are the triumphs and challenges that other people have worked to overcome, and I'm thankful they share their stories with us. Like my momma would say, "Someone else always has it worse." I look at the circumstances of people who rise above their misfortunes and I am given a boost to keep doing the same.

This week, I was going through old magazines in the house...cutting out decorating ideas, simple recipes I'd like to try and things I would want to remember. So, I was browsing through a February 2007 issue of Woman's Day magazine and I came across Ginger Zimmerman of New York. I read the short article next to her standing in a beautiful red dress representative of women making a stand against heart disease. I was stunned by her circumstances. If anyone can rise out of their circumstances and move forward in life through hardship, this woman teaches us that we can indeed do this.

Photo from website.
After reading this short article and cutting out the page with her story, I began to research her further and my admiration and amazement at all this woman went through is another gentle form of encouragement for me to keep moving forward in my own battle.

Ginger, a young woman of about 29 years of age had a beautiful life. She lived happily with her husband, David, who worked as an offshore oil surveyor in the Gulf of Mexico and they had three beautiful sons who were 13, 9 and 4 years old.

In 1993, at the young age of 29, Ginger began having chest pains and shortness of breath after simply walking across a room. Daily life had become a struggle. But a diagnosis would not come quick for Ginger. She, the same as in my situation, suffered needlessly because her physicians could not get past their "youth discrimination" barriers. I was amazed that she experienced the same thing I did...she experienced doctors who could not imagine anything being truly wrong with a woman who appeared rather healthy. It is difficult for a medical community to HEAR a young, vibrant woman describing her ailments when all they can focus on is her age and how she doesn't appear "sick" enough to warrant them thinking out of the box.

Doctors would tell Ginger that the extreme exhaustion she felt was due to a thyroid condition, which was an easy answer, and she was even labeled a hypochondriac. But, these answers were certainly not sufficient. In my case, I discovered that even though I had been suffering long-term and had been extremely pro-active in trying to get an answer from numerous doctors, I was facing a losing battle because too many doctors were incapable of listening to my symptoms, they even disregarded my carefully written lists that described my symptoms...most doctors were simply unable to go beyond their own limited mindsets that are more apt to label a young woman with an unknown illness as "stressed out" or a "hypochondriac." However, I was stunned to read that Ginger had tried for nearly four years to find answers as to why she was deteriorating. She knew something was wrong. Of course she knew something was wrong, but getting a doctor to listen to her and take her seriously enough to take pro-active diagnostic action would be the greatest challenge of all.

I was greatly saddened to read her story and to know that our battles to be diagnosed were so similar. It took me going into a code in the hospital before my treating medical team of the moment really got it...I knew what I had been talking about, I had been in the process of dying. It is always hard to hear of other people who had been seriously ill and suffered on top of it as they were misdiagnosed or shoved aside by ignorant physicians with crass attitudes.

No one took her seriously until it was nearly too late and she was dying, then they discovered that her heart was working at only 15% capacity. I can only imagine the shock, horror, and fear that she must have felt after learning that she needed a heart transplant. Living in the hospital, she had to be hopeful and patient for 3 1/2 months while waiting for a donor. This waiting time had to be agony because a heart transplant was her only hope for survival.

After the donor heart was found, her husband's company arranged to have a helicopter fly him to shore so he could rush to the hospital to be with his wife before she was taken into surgery for her heart transplant. He nearly missed seeing her before the surgery because his helicopter had been forced to make an emergency crash landing in the water. I can only imagine the sense of urgency and panic of the helicopter crew as they were going down, especially because they were trying to get this husband to his wife before she was sent in for her heart transplant. But, by some miracle, he survived the crash landing and he made it to the hospital as they were rolling her out into the hallway for the surgery. In the midst of her being wheeled into surgery, he was telling everyone that he was so lucky to be alive and told them about the crash...the reason for him running late and arriving at the very last minute. He got to be with his beloved wife before she went into surgery.

With a headache, David was able to see his wife before and after the surgery. I'm sure he was worried sick about his wife, probably hoping and praying that she'd survive so they could have another chance together. I'm sure he'd missed having his wife at home...she'd been in the hospital for months.

In an interview, Ginger says, "Little did he know that he'd actually suffered an impact tear to a small artery in his brain that would prove to be inoperable and it actually took his life nine days later."

Ginger had been able to speak with him one last time before he died as he was still at home, but about to head to the hospital in obvious serious condition...she had phoned him and could tell right away by his voice that something was really wrong. Ginger's niece, who lived nearby, rushed over to check on him and found that his eyes were dilated, his tongue was to one side she knew she needed to get him to the hospital. On the phone with Ginger, she relayed his condition and said there wasn't even time for an ambulance, so her niece quickly put the phone to David's ear for Ginger to tell him that she loved him for the last time.

Later, they would discover that her husband's impact tear, even if it had been discovered immediately after the crash, would not have been operable and they would have been forced to tell him that he would die. So, it makes you contemplate the series of if angels were watching over him and buying him borrowed time so he could be with his wife during such trying times. Maybe it's best that he didn't know he was dying and that she didn't know he was dying...perhaps the few moments they had left together would have been filled with despair instead of hope. Maybe the not-knowing was actually a hard to understand gift.

Stunned, I continued to learn more about her incredible story. In the magazine article, it saddened me to read her words, "I had a new heart only to have it broken."

After her husband's death, in the same hospital that had given her life, she had arranged to have David's organs donated. And as she was recovering from her own heart transplant, her husband's heart was transplanted into a father of three children, in the same hospital.

The ironies in this story are incredible. Her healthy husband died unexpectedly as she lay in the hospital after knowing that her only dying chance was a high-risk heart transplant. Her husband was consumed with being by her side through the worst, as he was dying himself.

Ginger Zimmerman is now a speaker with the American Heart Association. In an interview, she said something that women especially need to know, something simple, yet powerful, she said, "You live with your body every day, you know if it's not working right." So do not doubt yourself. If you KNOW something is wrong, then be blunt and tell the next doctor that you need for them to not brush you off or to blame their lack of knowledge on something mundane...they need to find out what is wrong. They need to put on their medical detective hat and get to work, even if that means employing the process of elimination.

Anyway, Ginger's personal story has touched my own heart. Her battles must have been seemingly insurmountable. The children's pain of suddenly losing their pillar of strength, their father, and then having a mother with such serious medical problems must have been devastating for them. This family has been through an amazing ordeal and I am encouraged by Ginger's determination to live as healthy and as fully as she can, in spite of ongoing challenges. I feel blessed to know her story.

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