Survivor Guilt: Turning Guilt Into Hope

Today, February 9th, 2015, marks the 8th anniversary of our son Karson’s diagnosis with leukemia. Eight years. This date is always a mixed bag of emotions for us. We feel pure elation for where we are today, and yet the moments of shock and sorrow we felt 8 years ago are still very raw and tangible. We celebrate how far we’ve come, and we remember because it’s important to never forget where we’ve been. 

I wrote a blog article about the “survivor guilt” that I sometimes feel and how I’ve been challenged to turn that guilt into hope for others. The Riley Children’s Foundation was kind enough to share it on their blog today in honor of Karson’s diagnosis anniversary. You can find it on the RCF page here. Or, you can read it on my personal blog below. 

Here’s to hope! 

 

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I tilted my head back until I felt my neck muscles had reached their limit. I was getting the best view possible as I watched my son attempt to scale an almost 30 foot climbing wall at our local YMCA.

I know nothing about climbing, so I was not there to offer advice, but to cheer Karson on and to take pictures. So, when Karson stopped about three quarters of the way up and let go of his grip, with both his hands and his feet, I wasn’t sure what to do or say.

He hung there, suspended in the air, by the rope and harness that was being carefully anchored on the ground by a trained staff member. Karson’s body drifted slowly from side to side as he shook out his hands and repeatedly said, “I’m done. I can’t go any further. I’m too tired.”

I wasn’t sure how to respond. Should I let him quit? Had he pushed himself to his limit? I really didn’t know what to tell him because I’d never been in his position and I didn’t know how he really felt.

But, the trained climbing expert who was calmly holding onto Karson’s rope and steadying him in mid-air spoke up. “You can do it!” he said. “Don’t quit. Come on man, you have strong legs, you’re tall, you can do this. It’s not much further. “

At first Karson shook his head and looked at me for permission to give up. I deferred by looking at the climbing expert who was still yelling out words of encouragement.

After a few moments, Karson turned back toward the wall and grabbed on with his right hand, and then his left, and then he found places to anchor his feet.

The climbing expert started to shout out specific commands.

 “Right hand blue.”

“Left foot yellow. That’s it.”

“Now left hand green. You can reach it.”

And though it may have sounded like a game of Twister, this man was telling my son how to get to the top of the wall, one colored fake rock at a time.

And Karson did.

I liken this experience with Karson to another we’ve faced in his lifetime. Cancer.

His diagnosis with leukemia at the age of two was a wall that stood in front of us and stretched higher than we could even see.

The climb took years of maneuvering through chemotherapy treatments, steroids, hair loss, weight gain, isolation and spinal taps.

There were times in the midst of it all when we let go of the wall and swung helplessly in mid-air without an ounce of energy left to go forward.

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And it was during those times that I heard the voices of others who had already climbed this wall and who had successfully made it to the top. Families of other children who had fought leukemia and other cancers encouraged us by saying,

“You can do this. You are strong. Karson is strong. God is good. Keep climbing.”

Then, as we’d turn our faces toward the next trial their words would become even more specific.

 “We remember the loneliness of isolation. We’re here for you via phone of email whenever you need to talk.”

“Oh, that drug was the worst! Are you experiencing that side effect too? We can relate. Here’s an idea we found that brought some relief.”

“Our daughter had the same issue with the spinal taps. You’re not alone. We’re praying for you.”

Do you see what these survivors, these “experts” in the steep climb against cancer, were doing?

They were helping us get to the top, one excruciating moment at a time.

And we did.

Karson finished his three years of chemotherapy in 2010 and he remains cancer-free to this day. He’s a healthy, strong, ten-year-old who can now go the YMCA and climb a wall like any other 4th grader.

But the problem is, sometimes I feel guilty about our success.

It may sound crazy, but as the years have ticked by and Karson has continued to thrive, I sometimes feel the “survivors guilt” trickle in. It’s second-hand survivor’s guilt, really. But it stings just the same.

And at first, I wasn’t sure what to do about it.

The feelings of guilt caused me to be silent and not share about our success fearing I may cause pain to others who were struggling and who weren’t as fortunate.

But my silence was detrimental instead of helpful.

Lately I’ve been reminded of the gift that I can now offer to others who are facing a difficult climb.

The gift of hope.

I may never have climbed an actual climbing wall, but I have maneuvered through mothering a child with a life-threatening illness.

I’ve been there.

I know what it feels like.

I can help guide others toward the next goal and over the next hurdle.

And so instead of allowing my survivor’s guilt to render me speechless and idle, I’ve been reminded to shout to those who are on the wall in the midst of their battles.

I need to turn my guilt into hope for someone else.

It’s what others did for us, and their encouragement helped us finish the fight.

Now it’s my turn.

I won’t allow my survivors guilt to silence me. Instead, I will turn that guilt into the gift of hope for someone else.

And together, we can keep climbing.

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Thoughts on Cancer and Magic Johnson

I’m not a Magic Johnson fan, but that doesn’t really matter. I am, however, a huge fan of biographies. You can put a book or documentary about almost anyone in front of me and I’m hooked. I love to learn about people’s stories. Therefore, when a documentary about Magic Johnson was on our television one evening this summer I curled up in my chair with my popcorn and watched.

I’m not here to tell you about basketball or the Lakers or any of that. Sure, there were great games and amazing statistics but it was actually something Johnson said near the end of the show that struck me.

The basketball legend was sharing about his journey with HIV. He was diagnosed at a time when many thought it would be a swift death sentence for both his basketball career and his very life. They were wrong. Johnson has lived with AIDS for 23 years and due to medical treatments he continues to lead a fairly normal life.

Johnson has been the face of HIV for almost a quarter of a century but he said that’s been both good and bad.

The good has been the level of awareness and education that many have received due to such a public figure being diagnosed.

The bad is that he’s alive and well.

The bad may seem good, and it most definitely is, but he was saying that in the fight to raise awareness and fund for HIV/AIDS many look to him and think, “He’s fine! He’s healthy! He’s had AIDS forever and still looks good. What’s the big deal?”

It’s a double-edged sword.

I can relate (though I’m quite certain this is the only way I can relate to Magic Johnson!)

k1 half kickOur son, Karson, was diagnosed with leukemia when he was just two years old. It was a possible death sentence for him. We didn’t know how his little body would respond to the treatment or if the cancer would take his life. However, we are SO thankful that Karson is not only alive, he’s healthy and thriving. He’s now almost 10 years old and has been done with his rigorous 3 ½ years of chemo for more than 4 years. The dark valley of that time is behind us.

If you look at Karson you’d never know he’d once been a bald, puffy, weak and very sick little toddler. You’d never know he went through years of chemotherapy, 22 spinal taps, 2 bone marrow biopsies, 3 years of steroids, and more blood transfusions and hospital stays than we can count. Instead, you see a tall and smiling 4th grader who pitched on his Little League team and just broke his arm being “all boy” while doing a cannonball off a swing in our backyard.

And when you see him as a leukemia survivor you may begin to think, “He’s fine! He’s healthy! He went through leukemia but look at him now. What’s the big deal?”

But it is a big deal.

Karson is alive and healthy. Karson is a leukemia survivor.

Not every story ends this way. Not everyone is healthy like Magic Johnson and Karson Cabe years after being diagnosed with life-threatening illnesses. We don’t know why we are so blessed to have this outcome when others deal with death and sorrow, but we are grateful beyond words.

And while on this mountaintop we don’t want to waste what we learned in the valley.

And that’s why we continue to share his story and many statistics and facts. Like:

 

  • Cancer is the #1 disease-related causes of death for children.
  • Every day, 42 children are diagnosed with cancer.
  • 12% of children diagnosed with cancer do not survive.
  • Children’s cancer affects all ethnic, gender and socio-economic groups.
  • The average age of children diagnosed is six.
  • More than 40,000 children undergo treatment for cancer each year.
  • 60% of children who survive cancer suffer late-effects, such as infertility, heart failure and secondary cancers.
  • There are approximately 375,000 adult survivors of children’s cancer in the United States.

 

I can’t speak for Magic Johnson, nor do I wish to, but I hope that his success story and Karson’s will champion the cause for those who are sick with these awful diseases.

If nothing else, it sure makes for a great documentary.