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“What I found was that behind my fear lived hope.”

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By Kristen Steele

I have been bingeing on books that focus on finding hope in the face of pain. While in the Richmond, Virginia, airport coming back from a trip to visit my brother, I stumbled upon the book Originals by Adam Grant. The foreword was written by Sheryl Sandberg. I had it purchased and downloaded from Audible before the plane even took off. By the time I reached Boston, I was completely drawn in. It made me think and be proud of the original I am and yet challenged me to grow. When it drew to an end, I began to wonder how I could possibly follow that. It was then I saw the interview with Sheryl Sandberg on CBS Sunday Morning. I knew immediately who she was from the foreword she had written. I knew exactly what book would be next.

As I listened with tears and cheers, I heard her reference a name more than once that rang a little bell in my mind. Could it be … ? It wasn’t until I finished listening to the book and scrambled to the Option B website that my suspicions were confirmed. Yes, I did know that name: Allen Rucker. I had not read his book yet, because I hadn’t been ready to read it. I hadn’t made peace with myself. You see, I was a new member of the transverse myelitis club.

When I first received the MS diagnosis, I was relieved. That may sound crazy, but I was supposed to be getting better and I wasn’t.

It was transverse myelitis that stopped me in September 2016, seven days into in a new teaching position in a small district in northern New Hampshire, a position to which I would not be able to return. My TM left me learning to walk again with a walker. I tried very hard to be grateful because I knew I could have been in a wheelchair. I did my PT and waited for my legs to return to a more normal gait and strength. They didn’t. A follow-up MRI in December revealed I also had multiple sclerosis. By January, optic neuritis joined the party. I made jokes about collecting Latin names. The joint condition I had fought against for sixteen years (mixed connective tissue disease) stopped being suppressed and jumped into the pool as if to make things more interesting. Life as I knew it came to a screeching halt.

When I first received the MS diagnosis, I was relieved. That may sound crazy, but I was supposed to be getting better and I wasn’t. There was now a reason for the insidious brain fog that robbed me of my days and mind. Its partner in crime, fatigue, was never far away. I was someone who used to juggle classrooms and caseloads, paperwork, family, activities, pets, and home. I had started my own children’s museum. I wrote books for my students. I even put a new roof on my mom’s music studio. Okay, that last one I could have done without, but when the job was complete, I was mighty proud. Now I struggled to do the laundry and put it away. How on earth had I done it all before? How do you learn to reach out for help when you used to be the one doing it all?

She’d say, “I know you like your Supergirl cape, but you need to take care of yourself. You don’t always have to push so hard.”

I have gone through a difficult marriage, divorce, cancer, single parenting, and other heartbreak, but I have always pushed through. This time, however, it was different. My new life changed me in a big way. Being physically strong was no longer an option. I have a friend who used to caution me. She’d say, “I know you like your Supergirl cape, but you need to take care of yourself. You don’t always have to push so hard.” It was like she was foreshadowing what was to come.

My Supergirl cape quickly took on a whole new significance as I learned to move through life at a much slower pace. I had to figure out how to find new meaning in all I did. I had to re-create myself. It was a delicate balance of holding on and letting go as I tried to merge the old and new me into someone I could recognize and respect.

I couldn’t bear to end my stories on a negative note. Always the teacher, I had to look for the lesson and the chance to grow. 

It wasn’t hard to find stories of despair and pain from others fighting similar circumstances. It was easy to get sucked into the heartbreak. I turned to writing to help cope with my changes, and what I found was that behind my fear lived hope. I was still a fighter. I couldn’t bear to end my stories on a negative note. Always the teacher, I had to look for the lesson and the chance to grow. Out of that came hope4life180.com. As I preached to myself, I began to share my stories. I discovered there were others struggling and looking for encouragement and hope as well.

It has become my goal to try to bring hope to others fighting discouragement, to come along beside them and offer a hand. I want to reach out and share the encouragement I have found along my journey. Finding the Option B site now, with its wealth of like-minded thinkers and warriors, is a blessing indeed. Knowing someone else has faced the same fears you have and risen above them becomes an inspiration.

I know now what book I’ll read next. I’m ready for your story, Mr. Rucker. I will take your lessons to heart. I promise to do my best to pass them forward to those around me. 

Health, Illness & Injury Building resilience Chronic illness Finding joy Overcoming permanence Rare disease Supporting others Hope
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