For that we have each other…

The first time I heard Andra Day’s song, Rise Up, I immediately thought of it as a survivor’s anthem. I heard the refrain, and I thought about my daily struggles, and the effort I make to rise up and face each challenge.

Then I saw the video, and I realized that I was so caught up in my own drama, I hadn’t even noticed some of the lyrics. Clearly this is a song of solidarity, but I hadn’t heard the “we” because I was too focused on the “I”. As I watched the video, I immediately thought of all the things my husband does every day to help me find the strength to keep on keeping on.

“You’re broken down and tired of living life on a merry go round, and you can’t find the fighter. But I see it in you, so we gonna walk it out and move mountains” from Rise Up sung by Andra Day

I was very fortunate to have people to take care of me during the early phases of my recovery. I can’t imagine what I would have done without my husband, my mother, and my father.

I know it hasn’t been an easy year for them. They have had to take on more responsibilities, and they have had to make sacrifices to make sure I have what I need. In fact, even now that I am back at work and getting stronger by the day, they are still making little daily sacrifices to make sure I am cared for and comfortable. For that, I am so grateful. So I am going to post the video here for all of the people who are caring for me and my fellow SCT survivors.

We will rise up!

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A Box of Sunshine

It can be hard to know what to do when a friend is going through a difficult recovery. Many of my friends sent flowers, and those were appreciated. But then one rainy winter afternoon the doorbell rang, and when I opened the door, I saw a box.

It had been sent by a friend from grad school. While we have kept up on Facebook, we haven’t actually seen each other in almost twenty years.  As I opened the box, I felt a rush of excitement. She had cared enough to take time out of her busy schedule to send a care package to me. I had so much fun emptying the box and seeing each surprise revealed. It hadn’t cost a fortune to buy the random assortment of treats, but each one represented love and goodwill. Everything in the box was yellow or orange! How did she know that I needed a bit of sunshine in the middle of this cold, dark winter?

☀️

I truly have some of the sweetest and most creative friends on the planet!

So, if you have a friend who is in the middle of a difficult recovery, here is an idea. Send them a box filled with sunshine.

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scar(r)ed.

This is probably one of the most beautifully hopeful posts I have seen from someone who is sharing their post surgery experiences. Since having my surgery, I have wondered at the number of people posting photos of their scars – proudly, almost defiantly – on the Spinal Cord Tumor Association Facebook page. I have even noticed that I have a fascination with my ever evolving scar. I want the world to see it. I want them to know and recognize that I am a warrior. While I spend much of my time and energy trying to live my life as if this tumor didn’t change me, the undeniable truth is that is has changed me. The scar is tangible, outward proof of the changes (emotional, psychological, and physical) that I have experienced in the past six months. And here, in this blog, is a warrior who very eloquently explains what so many of us have felt. Take a minute to read her blog, and keep rocking that scar.

aperture expanding

When I first started dating my husband Luke, I covered my mouth anytime joy tried to sneak out of the corners of my mouth. This was something I didn’t realize I had learned to do over the years, but it is something Luke caught onto right away. A few weeks into knowing each other, I received the first ever coveted “Goodnight, beautiful.” text from him. My heartbeat quickened and, unknowingly, I covered my shy smile with my left hand. Seconds later, he sent a second text saying,

“Let me guess, you’re covering your gorgeous smile and your green eyes are twinkling. Right?”

What. The. What???

Puzzled as all heck, I glanced around my apartment wondering how in the world he would have known something about me I didn’t even know about myself (also wondering if this incredible, seemingly normal man I had already known would be my husband was somehow…

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There are so many things…

The past week has not been a good one for me.  I’ve had a headache on and off now for over a week. While it has frustrated me to suddenly be in the embrace of the Jabberwocky once more, what has been even harder is seeing how it has impacted my life.  With pain I may be able to drive to work, to go through the motions of teaching a class, to prepare a test, to engage in small talk, but all of these things take so much more energy than they normally would! That means by the end of the day, when I reach my house, I don’t have much to give back to my husband.  He prepares my dinner, he watches what is left of me as I eat my meal.  We try to talk, but I am distracted and unengaged. My nerves are raw. I am fragile.

As hard as this is for me, I know it must also be hard for him. I know he agreed to “sickness and health”, but I don’t think this is the life he had in mind for us. I just wish I didn’t feel this way. I wish I were a healthier, happier, painfree version of myself. There are so many things I would do…