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Why Chronic Illness Anniversaries Can Be Bittersweet

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May 7, 2011.

Six years, eight months and five days ago. Or 2,440 days ago.

The day my doctors couldn’t tell me if or when it would happen, if it would even happen at all.

The day seven years ago when I stood up with my walker, and let go.

But this time, I didn’t fall.

I carefully put one foot in front of the other. I was walking by myself – without leg braces and heels to lock my knees in place, and without my walker.

It was Mother’s Day weekend. When my mom got home, I yelled to her that I had something to show her.

For the first time in three years, I walked up to my mom, all by myself.

For the first time in three years, I got to walk up to my mom and hug her and hold her. We both cried with happiness. It finally happened.

That night, I remember lying in bed praying. I prayed that I wouldn’t stop walking.

Sure enough, the next day I woke up able to feel my legs, move my legs and walk. Cliché as it may seem, every morning I thanked God that I could still feel and move my legs, and walk. And every night I would thank God for another day filled with walking, and would pray for it to stay another day.

This all happened after nine months of paralysis from the hips down, and three years total of being unable to walk and unable to walk properly. The journey to get to that point, through treatments for CIDP that made me violently ill, physical therapy and a plethora of different treatments (many of which failed) for the multiple tick-borne infections, was one which I cannot muster up the right analogy to help explain.

I knew in the back of my mind this was a possibility. As it became more difficult to treat my CIDP, I grew more and more eager to accomplish everything my heart desired. It was made clear to me by my doctors that I am out of treatment options. I just never thought it was actually going to happen.

But it did happen. This wasn’t supposed to happen. Call it ignorance. Call it denial. Call it selfish. Or call it simply being human. I had just gotten my paramedic license. I had just gotten through the firefighter program and had been volunteering as a fireman. I was full of such excitement for a career, yet I felt my body continue to decline. I was struggling the entire time, no matter how hard I tried to deny it or look tough, or convince myself that I could keep going despite it. I never thought I’d be unable to walk again. To re-experience this state of pure devastation.

I lost everything I’ve worked for. Not once. But twice.

Today was supposed to be a day of celebration. It was supposed to be getting a new pair of shoes, as I did every year to celebrate this day. It was supposed to be a happy day.

Instead, today is a double-edged sword. It’s a very bittersweet day. I’m sad. I am so numb from all I’ve been enduring. I feel like I’m mourning who I was, craving to relive memories and stuck in a trance of the “what ifs.”

I’m so beyond thankful of all I pushed relentlessly to accomplish in the almost seven years I was walking, yet curious to know how much further I could’ve gone. I wonder what I’d be doing right now had this not happened. Sometimes when I think of the long road I have ahead of rebuilding what I struggled and fought so hard to rebuild in the first place, it overwhelms me in waves that almost drown me. So I do not think about it. I just do the one thing that has become second nature to me for the past almost 10 years: fight like hell. I am on autopilot.

I’m thankful I had six years, eight months and five days before I stopped walking again.

I had 2,440 days walking, running, dancing, building my life and accomplishing my dreams.

They say happiness is a choice. Today, with a whole lot of courage, I’m going to try not to cry, and remember the 2,440 days that God gave me to do some pretty awesome things. I’m not going to be angry with myself or my body for something I cannot control. The only thing I can continue to control throughout this battle is my attitude.

woman wearing a blue dress and sitting in a wheelchair with her hand on her hip

And every time I catch myself about to cry, I am going to remind myself that I’ve crawled, dragged and rolled myself (literally) through this hell before and came out the other side walking. And someday I will rise from the ashes, walking once more.

Originally published: May 18, 2018
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