An Anniversary and a First

This photo was taken at the National Museum of American History.

Everyone has defining moments. Moments you may not realize are monumental when they’re happening. But later — days, weeks, months, or even years later — you look back at that moment, that significant event and see it for what it is — a distinct, neon-yellow line dividing your life into before and after.

Thirteen years ago, I woke up on a Sunday morning, but I couldn’t get out of bed. My left calf had ballooned, and I suddenly couldn’t do the thing I had done for years — stand up. Next came a visit to the emergency room, a hospitalization, and what would become the beginning of my life as a chronic illness patient. 

Last week, on the anniversary of that defining day, my family and I were on a summer trip visiting Washington, D.C. 

It was a vacation of firsts — the first time we had visited our nation’s capital, and the first time I rented a wheelchair for the duration of our stay.

As I told my son, I don’t know if all future trips will require use of a wheelchair. But this year, it was an absolute must. (I also requested wheelchair assistance in the airports.)

Initially, I didn’t think I would need a wheelchair at all. Then I thought I could just borrow one of the wheelchairs most museums have available for guests. Finally, I admitted the truth — my pain has been incredibly intense, my leg incredibly weak. If my family and I wanted to take this trip, I had to use a wheelchair.

There was one part of me that was heartbroken. All I could think of were the negatives — I’m 47 years old and, for this trip anyway, an ambulatory wheelchair user. My mind went down that scary, dark path — thinking ahead to future trips, picturing myself with increasingly limited mobility.

I made an effort to reframe how I thought about the facts — I’m 47 years old and not letting this chronic illness and my chronic pain stop me from living my life the way I want to live it. I wasn’t going to stay home because I needed a wheelchair. I adapted and figured out how to make this trip work for my body as it is now.

I don’t know. Maybe we’ll look back at this D.C. trip as one of those defining moments — the start of travel requiring a wheelchair. 

But maybe not. 

We’ll have to wait and see next year.

P.S. Lots more to come about this incredible trip. We spent 6 days, 5 nights away from home. We visited museums and memorials. We admired and appreciated. We listened and learned.  

Still Going

One year ago, my family and I were in Maui. (If you missed it, you can read my post about our fantastic trip by clicking here. My son took this photo during our zip lining adventure.)

This year, we’re in the almost-done-planning stage of our summer trip, happening later this summer. (I’ll be writing about this summer’s trip in a blog post next month. Stay tuned!)

If I’m being honest, I do have to admit that I am a bit worried.

The truth is I’m very good at keeping it all together, of making my life, my family’s life, look like everything is under control. Because it is — in many ways. But I’m also dealing with incredible amounts of daily pain. I’m trying to get through my days while struggling with high levels of fatigue, unexpected muscle twitches, and knees that make bending painful.

Will I come home feeling more intense pain than I did before the trip? Maybe. But also, maybe not. 

Will I have hours during our trip when my left leg will feel wobbly and shaky like Jello on a dessert plate? Maybe, but maybe not. 

Two family members have voiced their concerns about the trip. “Won’t it be too much for you?” I was asked.

“Probably,” I answered.

But we’re still going. I am not going to let my chronic illness stop me.