STRUGGLING WITH SERENDIPITY
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no need to wish

10/12/2016

4 Comments

 
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(This blog tells my family's story. To see more, click "blog" at the top of this webpage.)

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I convinced Beth to take a day off of school to go to the Shriners Hospital.

Two volunteer drivers met us in Toledo early in the morning. We left our car there and boarded their van for the four-hour drive to Chicago. The friendly drivers lived in our hometown, Tiffin, and one was the grandfather of a friend.
 

The Shriners Hospital made a colorful first impression, effectively designed to be welcoming for families. Beth and I met individually with each member of a large team at the spinal cord injury clinic, including a urologist, orthopedic surgeon, social worker, occupational therapist, psychologist, and physical therapist.
 
A bubbly nurse took us on a tour of the hospital, pointing out a display for the Make-A-Wish Foundation for children with life-threatening medical conditions. She casually offered to make a referral for Beth, and introduced us to another quad and her mom who recently returned from a cruise in Alaska through Make-A-Wish. My family had rarely traveled.           
 
However, the offer bothered Beth. Between appointments, we talked. Make-A-Wish clashed with her wholehearted belief that her “condition” would get better, not worse, based on the one scale that mattered to her—decreasing dependence. She knew that cut spinal cords did not get better, and the medical miracle of re-growing cut cords might not happen in her lifetime. The frightening severity of her recent pneumonia and other risks of quadriplegia did not factor into her decision. Beth turned down the nurse’s offer, certain that others needed Make-A-Wish more than she did.

​I trusted my daughter’s judgment over my own.

The entire team at the Shriners clinic convened with us at the end of the day to make recommendations. We learned that Beth’s damaged back muscles changed the spinal column and worsened curvatures. She acquired two new diagnoses. I had never heard of kyphosis, an outward bowing of the back, but I understood scoliosis, a curvature sometimes resembling the letter S.
 
When I was a teenager, way back when, I had worn the Milwaukee back brace, an antiquated treatment for scoliosis. The brace covered my pelvis, with a metal bar that curved out in the front and connected to a chinrest, making three years of junior high and high school more awkward for me than usual. If the curving and bowing of Beth’s back continued to worsen, her organs could be damaged and major surgery would be needed to straighten the spine with a metal rod.
 
I added back surgery to my ocean of anxiety. I worried for Beth, for the rest of our family, for friends, and for the whole world. The relentless ache in my head dug in deeper, filling the space behind my eyes. I talked to my psychologist every week about pain, guilt, and depression. She told me that guilt could resemble grief and offered rare advice: find things to look forward to. In other words, stop waiting for the next tragedy or health crisis.
 
Easier said than done.

4 Comments
Bill
10/12/2016 11:50:23 am

I really feel for you Cindy. I have many times had that thinking pattern myself; worrying about and waiting for the next crisis or tragedy to eventuate with my health, a family member or anything in general and it so does wear me down. I've found it's a very solitary and isolating mindset that is hard to verbalise with loved ones or anyone. I must say, while it is, as you say, easier said than done, I will try the strategy of looking forward to something. Thank you Cindy 🙏😊

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Cindy Kolbe link
10/12/2016 01:00:32 pm

Thank you, Bill! :-) I completely agree that anxiety is so isolating and exhausting. It seemed to worsen my depression, too, since it was really difficult for me to believe that everything would be okay. I'm happy to say that I'm in a better place now. And happy to connect with you on Twitter! I love your photographs!

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Bill
10/13/2016 08:16:34 am

I'm so pleased you're in a better place Cindy. I'm working hard on getting there myself. I love reading your posts and having connected on Twitter as well. It helps give me a better perspective on what is important in life and how you deal with it. Thank you so much about my photography as well. I'm so pleased you like it and to have you say that makes it very worthwhile. It's the main outlet I have and has been the best therapy I've known.

Cindy Kolbe link
10/13/2016 10:01:17 am

Bill, it's so nice to have your support, especially on days when I wonder why I have a blog. I wish I had a cure for anxiety for you and all the others who struggle with it. My experience was a gradual tapering as other things kept getting better. I just read a book by Matt Haig titled Reasons to Stay Alive. It is very emotional, but I thought it was interesting how it describes depression with anxiety. Photography sounds like the best therapy, though! All the best to you!

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    Cindy Kolbe

    I'm a mom on a mission to share the power of hope and connection! For signed copies of my memoir, click BOOK.   
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    ❤  Cindy

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