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FEAR -> FTA

The world recently put to rest a great fighter... I'm not talking about Mohammed Ali.  As the world was mourning over the loss of a well know fighter, Mohammed Ali... in a small, picturesque town in Iowa there was much mourning over a lesser known fighter that some say rivaled that of Ali. She fought half of her life battling a rare condition that most people don't even know exists. Her loved ones planted her body into the Earth knowing that her memories will grow into something special. They will grow into awareness and eventually lead to a cure. A cure for a disease so tragic and yet so little is known about.

1975-2016

The dates aren't important or significant. What's important is the dash between that matters most. How one woman made such a large impact on so many lives and so many more yet to come. From what I know, their story begins sometime in the late 1990's. Again, the numbers aren't important, it's the story that matters. They met in a small town, in Iowa, where he just started teaching and coaching. We'll just call him "coach". She just finished college and was a new teacher herself, but she grew up in the town. She went to college on a basketball scholarship but had to stop playing because of her disease. She didn't know what it was at the time and was told she just had a "virus" or the flu. Two weeks after they started dating she reserved a place for their wedding. She knew they were going to get married. Coach proposed to her a few months after they met. There were married only one year after they met.  They got married at the place she reserved, on the date she reserved, two weeks after they met. It was meant to be.

Early 2000's

Not long after they were married she got pregnant. At one point during the pregnancy they thought the baby was lost, but the ultrasound said he made it through. Shortly after birth she developed endometriosis and had to have her uterus removed. All the while she was fighting off the "mystery virus". Some days and weeks it would go into remission while other times it would not. These were the early years. They didn't last long and every year it would be less in remission. Their son never got to know his mom without her "mystery virus" and in 5th grade wrote that all he wanted was for his mom not to be sick anymore. On the day of her funeral Coach told his son "she won't be sick anymore".

2016

It was the most I've ever cried, and laughed, at any funeral. It started the night before at the wake. It was 90+ degrees in the shade and very humid. There was a line outside the funeral home for hours until the sun went down. They said over 1,800 people showed up that evening, in that small town, to pay their respects.  Most waited outside in the heat for an hour before they could get into the building. Inside the funeral home was warm because the doors were held open by people filing in and out, non-stop. There was a video playing with music, people telling stories, laughing, and crying.

The next morning they had a final viewing for the family, after which they closed the casket. All of the family got into their cars and drove in a procession to the church. Their family is pretty large, so there were quite a few cars. The procession of cars was so long that it shutdown all of the major roads in town as it weaved from the funeral home to their church. Everyone in town stopped on the sides of the road as they drove through, to pay their respects. There were workers along the route that stood by the side of the road to pay respects. The mail carrier, who was working her route, stood at the edge of the sidewalk solemnly with her hands crossed in front as the cars drove past. When the procession arrived at the church, lead by the herse, they had to close the street in front to park all the cars of the family members. They put the cars in four rows filling the street for the entire length of the block. The family lined up outside the church behind the casket waiting to enter.

After a few moments they walked single file into an already full church and sat in reserved spots in the front. A pastor stood casually up in front wearing jeans and a nice shirt. Once everyone was seated he began speaking. He spoke about the family and how he knew them for quite some time. After that he read a quote and then a man came to the front with a microphone. He sang the most beautiful song I've ever heard. There wasn't a dry eye in the place. The next thing that happened surprised everyone in the place. Coach walked up to the front and spoke about his wife in the casket directly in front of him. He had a slideshow that he spoke from which had exactly 22 slides, her basketball jersey number in college where she played before her "mystery virus" made her have to stop. He spoke about many life lessons. Many things that he learned from her. He talked about her strengths and even cracked a few jokes. Everyone in the room was sobbing and laughing at the same time as he spoke. There were strong, grown men balling with their heads in their hands. You could hear people letting out loud muffled sobs into tissues. All the while Coach kept his composure and continued speaking about the slides. A few times he would pause for a moment and then continue speaking. This went on for more than half an hour.

Shortly afterwards six men walked down one of the isles, up to the casket. They put it into the herse and everyone got into their cars to follow. At the cemetery there was a tent and everything else setup similar to other funerals I've attended. We all crowded around and under the tent as we stood sweating in the 90+ temperatures. The pastor gave a great talk and then the funeral conductor said the ceremony here was finished. He invited everyone back to the church for food and beverages. No one moved. We all just stood there waiting. Then Coach walked up to the funeral director and whispered something into his ear. The funeral director announced that Coach wanted to close the grave. I don't think he could just leave there, so he made them take her away from him. The funeral director rushed off and got the man who dug the grave. The grave digger came over wearing his dirty jeans and tank top with tattoos on his large forearms. He was sweating, probably from opening the grave site a short while before. The funeral conductor, in his suit, helped the grave digger crank and remove straps to get the casket into the concrete vault. All you could see were tears streaming down the faces of everyone from behind their sunglasses as Coach kissed the casket and pressed his hand into the wood which surrounded his wife's body. After it was lowered to the bottom, he walked over and shook the grave digger's hand "Thank you very much", he said.  Then he walked over and grabbed his son's hand "come on, let's go". They walked back to the vehicle that brought them to the cemetery and left.

FEAR -> FTA

There were so many important things that Coach said in front of everyone that day. The most important for me was to keep her spirit alive, which is why I decided to write this. Everyone in the world needs to know how terrible this disease is and become more aware of it so a cure can be found. Thinking of this disease makes me very angry. I was once talking with Coach about the disease and he said all they wanted was for people to spread awareness and to donate for research. They were suffering like many who suffer with "rare" conditions because there isn't enough money to fund the research.

I know there are many conditions out there that need funding for research. I know there are many people who suffer from terrible diseases. I feel for all of them and everytime I read a personal story it helps me understand them even more. Sometimes the story touches me and I find a site to donate for research. I hope that anyone who reads this finds it in their heart to spend some time looking into the lesser known diseases, which are severly underfunded. The more people hear real stories about people suffering from them, the more they might be willing to help. I didn't include any names or detailed information about the family because they aren't aware that I wrote this. They like to keep to themselves and spread the word by their actions. They never complain about anything that happens to them. They give their time and their lives to help others. When I was helping unpack the flowers and memorial stones at their house, I saw a letter from a student who graduated from the school where Coach taught. He wrote "Thanks for the gift Coach. But, especially thank you for teaching me all of the important life lessons and being there for me." I'm sure that he has received hundreds of these same letters from past students and athletes.

The disease that Coach's wife suffered from was called Gastroparesis, in its worst form. Please take the time to research it and donate to help find a cure. Gastroparesis Sucks!!

2 likes, 10 replies

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10 Replies

  • Posted

    Wow, what a lovely thing for you to do, I read this and cried for the lady I did not know but who had a lovely family and lovely friends and apart from her illness a great life.  My heart goes out to her husband and son, nut as her husband said is not sick or suffering anymore.

    I had never heard of this disease before and will take time to research it, I have just been diagnosed with a rare disease called callagenous colitis, and although it is no where as bad as Gastroparesis is I had still never heard of it untill I heard I have it!!

    You seem like a very special person and you mentioned the Dash in between, I dont know if you are aware but there is a lovely poem called The Dash by Linda Ellis if you have not read this then please check it out, it says it all.  Take care. xx

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  • Posted

    This is absolutely a beautiful story. And soo many of them told every day. No , I've never heard of this desease either. But since it does have a name we have a lead. My wife of 40yrs. Died last year from undiagnosed causes. She was sick for two years. I don't know what to research in her case but I've found hundreds just like hers. But if I can help just one person I'll do everything I can. Thank you so much for bringing this to light.
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  • Posted

    What a sad sad loss, I lost my sister aged 35 and just like the lady above, she was loved by everyone, she had years of different illnesses, and didn't have much of a life, and I still miss her everyday, her funeral was also big, the world lost a beautiful lady inside and out, however heaven got a beautiful soul, her name was Sandra and myself and other sister now have illness after illness and don't have much quality of life, however I am not scared. You cannot change your future, I just always think there are loads of people out there worse than me.
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    • Posted

      Yore absolutely right. I'm 70 now and my wife passed away 13 months ago. I'm not doing so great health wise either. But I'll alway remember my wife te lying me when I would mention that my leg or arm or whatever was hurting. She would always say , we'll just be thankful that you have an arm , leg or foot to complain about. Many people are without any. Love her dearly.
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    • Posted

      Telling me , not lying. Should have read a little more carefully before sending
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  • Posted

    @jackie30304 - Thank you all for taking the time to read this!  I was unaware of The Dash poem.  I read it, and it's exactly right.  You are right about her, she lived a full life and never complained!

    @David23673 - Since you mentioned the doctors... originally (around 20 years ago) they told her that it was "all in her head" and that nothing was wrong with her. After fighting with them for years, they finally found a diagnosis. It was called Idiopathic Gastroparesis, they never did find out how she got it... She had IV's all of the time for nutrients. As time passed, her vains shriveled up from malnutrition and they couldn't put in IV's. They put in picc lines as well when they couldn't get in IV's. Sadly, she died from starvation over the course of many years. Her body couldn't handle it anymore and finally shut down while waiting for a cure...

    Thanks again for reading and help spread awareness!!

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