Tuesday, October 15, 2013

"Joni and Ken: An Untold Love Story"

My mom and I recently finished reading Joni and Ken: An Untold Love Story written by Ken and Joni Eareckson Tada. Joni (pronounced like the man's name "Johnny") was injured in a diving accident when she was 17, leaving her a quadriplegic. Joni started a charity called Joni and Friends and she travels the world with her Christian ministry sharing hope and the message of Jesus Christ with others. Her charity does retreats for the families of people with spinal cord injuries. Wheels for the World is a division of Joni and Friends in which teams of volunteers go around the world (especially to poor countries) and fit disabled people with refurbished wheelchairs. (Many of the people who receive a wheelchair have been housebound or confined to a bed, so getting a wheelchair is completely life-changing for them.)
Joni (whose 64th birthday is today) has written many books over the years and my mom became familiar with them after my accident. When I heard about Joni's new book about her relationship with her husband I thought it sounded really good, so I asked my mom to get it for me for my birthday. She did, and it's been on our stack of books to read for the past few months. We've been busy reading other books, but finally got around to reading it recently and made quick work of it.

I really enjoyed the book. I can definitely relate to Joni in so many ways since she and I are both quadriplegics. (Although, Joni's only paralyzed from her chest down, so she has some use of her arms, whereas I'm paralyzed from my neck down, so I don't have any arm movement.) Joni has been paralyzed for more than 45 years, so I found it interesting to read about some of the different things she's had to deal with, like pressure sores, pneumonia, hospitalizations, a broken leg, chronic pain, etc. Thankfully I haven't had to deal with most of those things, but I suppose I might face things like that as I get older.
I really enjoyed reading about Joni and Ken's relationship. I'm in awe thinking of a handsome, successful, able-bodied man showing interest in a woman with such physical limitations. It's extremely rare since most people wouldn't give a second glance to someone in a wheelchair, even if they ARE an amazing person. (I personally don't know if I'D be able to get past that.) I think this really speaks to the kind of person that Ken is. Joni and Ken married in 1982 and are still married. Their relationship has had it's ups and downs, like any relationship, but they are committed to each other.
The book addressed some of the issues Joni and Ken faced in their marriage. Joni talked about her struggle with depression, and how she and Ken have both had to battle chronic depression over the years which was hard on them, and their marriage. They also had to work on blending their two individual lives together, which wasn't always easy. When Joni and Ken married, Joni was already pretty famous/well known. She was a best-selling author, and had even starred as herself in the 1979 movie based on her life. She was also very much involved with her Joni and Friends charity and traveled all over the world with that.

Here's an excerpt from the book that sheds a little light on what things were like for Ken:

"When he first pursued a relationship with Joni, he hadn't given a lot of thought to the idea that she was famous.

"She was beautiful. She had an exciting life. She loved Jesus. She cared deeply about others. She seemed interested in him. And yes, she was in a wheelchair. What else did he need to know?

"Looking back across twenty-plus years of marriage, however, he had to admit that Joni's celebrity status was one of the forces that had shaped their lives together. Because of who she was, Ken had found himself in a supporting role through much of his adult life. It was Joni who had been the up-front public figure, the author, the artist and the TV and radio personality--the one who had spent time with Billy Graham and President Bush and leaders all over the world.

"At first,  to be honest, he'd felt a bit like window dressing when they were out together. People always recognized her or crowded around or wherever they went, wanting their picture with her, wanting to touch her, wanting her autograph… and generally ignoring him completely.

"Not that she had encouraged any of that. No, quite the opposite. She had always been good about trying to introduce him, include him in the conversation, bring him forward. She was proud of him, and she bragged about him every chance she got. But he also knew who they really wanted to talk to. Of course they did. Who wouldn't want to talk to Joni?"

One of the things that surprised me was just how much time Joni and Ken spent apart, and how they were content to do their own things. Not that there's anything wrong with that, but I think that I'd want to spend more time with my husband. I know having alone time is good for relationships so that you don't get sick of each other, but it's almost like they were living separate lives while living together, if that makes sense.

In 2010 Joni was diagnosed with breast cancer. Although that was a tragic thing to happen to the two of them, it actually brought them closer. Where Ken once enjoyed going on fishing trips as a little "escape," he now wanted to be by Joni's side all the time. She was going through chemotherapy and he wanted to be the one there to care for her. Joni is now in remission, and although it didn't specifically say this in the book, I bet the cancer really transformed their marriage in a positive way. They had a good marriage before Joni's cancer, but I bet they how a great marriage now.

My mom and I don't have the same kind of relationship as Joni and Ken, but we are extremely close, so it was interesting getting Mom's take on what it's like to be my "significant other" so to speak. I thought it would be interesting to include her feelings in my post, so I asked her to write something for me to add to my post. Here are my mom's feelings in her own words:

"In November of 2003, I was in graduate school, and had just gotten a scholarship. I was gaining confidence, learning new things, and making new friends. It was exciting! It was the happiest time of my life. Then Heather had her accident, and all of that changed. I had to quit school, which was extremely disappointing. Being a nurse did NOT appeal to me. Learning about spinal cord injury and care was a very steep learning curve. I basically went on "auto pilot" and was emotionally numb for about two years.

"Life looked pretty bleak each day when I got up, and also as I contemplated the months and years to come. I felt like I lost all my dreams, my friends, and even myself in the early months. Every morning there were hours of work caring for Heather, before I could even think of doing anything for myself. Then, when I got a break, I might just sit down to a hot meal when Heather would need something. She didn't call me for little whims, she always needed me when she called. My sleep at night was often interrupted as well. I couldn't really plan ahead much, because I didn't know what things would be like from day to day.

"Of course, I would never consider putting Heather in an institution! I knew she wouldn't get good care and wouldn't live long there. As time went on, things got easier. I became more skilled. We developed a good routine. Heather was happy, grateful for the care we gave, productive, and her health was usually pretty good. She took some college courses (which I attended with her as her note taker) and began serving in church. She made some new friends, and loved going shopping and out to the movies. I was her companion through many of these activities--but I felt like her invisible companion. Everyone wanted to see and talk to Heather; I was only her mother. Not that I wanted to be in the center of attention, but I also didn't like feeling invisible. 

"There were many things to adjust to along the way, both on my part and Heather's. It took some time, but I finally came to realize how blessed I was. Heather was my best friend, and she was able to live at home. So I got to spend my days in my own comfortable home with my best friend. I began to feel this was an important mission my Heavenly Father had given me, one that not many people would be able to do. He must have known I could. Knowing the Lord had confidence in me brought me great joy and the determination to fulfill this mission valiantly. No, my life is not what I hoped it would be, and it is very hard. But I am quite content, and have found happiness in caring for my wonderful daughter."

I really liked this book and would recommend it to anyone, especially someone who's dealing with a family member or friend with a long-term injury, illness or disease.


Jen@Because I can said...

Heather I hope you and your mom know how much I love you guys! Thanks for your amazing examples! Miss you!

jo said...

Brilliantly written, both of you. I love all of Joni's books and have been very blessed by her writing. We are used to Heather sharing honestly about her life and its good to hear from 'mom' too. It is great how you both face and accept the hard but also see your blessings in that. X

Emily Ann said...

Thank you and you mom for posting this. People often do not realize the caregivers role in our lives(paraplegic since Nov 17 2004 following a spinal for a c-section). My husband and older children are my primary caretakers. I love your blog. Thank you for being such an amazing example to me and so many others.:) God Bless

Renea Taylor said...

I've listened to Joni on the radio before and loved hearing her speak. You and your mom are both blessed to have each other!

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