Summer has changed the rhythm here. We stay up later and sleep in longer. We lobby for less screen time and more outside time. Beds go unmade and books are read.
With five children, the kitchen seems to be open 24/7. Dishes and laundry are the never-ending treadmill. We wash and fold and wash and fold, but there’s always more to wash and fold.
I relish in the 24 seconds a day everything is done.
Writing lately has been a challenge, partially due to cognitive issues resulting from neuro Lyme, but mostly because my four-year-old seems to believe that the best place in the world is on me. Not just beside me, but on me. I sit on the couch, in my Sheldon spot, and she squeezes into the four inches between me and the armrest. The entire couch could be empty, and she’d still choose that spot. I sit at my desk, trying to pay bills, and she’s on my lap.
I won’t admit to the number of times I have sat on a toilet with that little leech chatting away, her bony butt situated on my knees.
I know, I know. Cherish this age. It’ll go too fast. I get it. I do. It’s sweet. It’s wonderful. But it’s also unproductive and just plain exhausting, especially since physical touch makes my body sore.
I marvel at the women who are able to maintain a blog, writing frequently with children under foot. What’s the secret? Duct tape? I feel like a closet writer. Today, however, the kids are visiting their dad, so I’m stealing a few minutes to catch up with you.
With the changes of summer, I’ve had so much more color in my broken life. My quirky kids add vibrancy to my world and a chance to see things differently. Life through the eyes of a child is freeing and fascinating.
Take, for instance, this photo. We were at the Carnegie Museum of Natural History in Pittsburgh for Gracie’s 10th birthday. It was my daughters’ first time at this museum, and everything was new and exciting. I snapped lots of pictures, including this one.
Normal, mundane photo of a stuffed giraffe, right? My experience with these animals is limited to observing them at a zoo, which was a little traumatic once. Last year we visited the Pittsburgh Zoo and quickly realized it was mating season. Let’s just say once one sees a giraffe penis, one cannot unsee it. Mating giraffes are…..er, colorful.
But today, we are, thankfully, limited to a giraffe with only an erect neck.
After I snapped the pic, Izzi asked if she could take a photo. I handed her my iPhone, and she lied down on the carpet directly below the part of the giraffe that hangs over the display. This is what she saw.
My adult perspective was traditional, safe, predictable. My photo is just your everyday snapshot of a museum exhibit, but Izzi’s photo of the exact same giraffe provides an entirely different angle. It’s out-of-the-box thinking.
How often as adults do we allow ourselves to think out of the box? We do all the things we are supposed to do –go to work, pay our bills, clean our house. We play it safe. When is the last time you got down on your belly and snapped a picture? We tend to color within the lines.
A couple weeks ago, I spoke at a church camp. On the way there, I prayed hard. I didn’t know what I was going to say, and I needed God to tell me. Just as I pulled up to the stoplight and whispered Amen, I noticed the most intense sunset I’ve ever seen. I worried it would be gone by the time I parked, so I snapped this picture in my side mirror.
I was correct in my fear. When I parked, the sunset was hidden behind a hill and wasn’t visible at all from the parking lot. I felt sorry for those scurrying in Walmart and, in their busyness, missing the masterpiece. In a different life, I would’ve been one of those scurriers, marking off mental to-do lists, too busy to look up. I was grateful for this newfound vision.
About twenty minutes later, I stood with the camp leaders, discussing the agenda for the evening. One of the leaders mentioned the sunset she’d been distracted by on her way to camp. She shared this photo with us.
She was on the adjacent road, stopped at the neighboring stoplight, traveling the opposite way. The same sunset snapped at nearly the same time from a different perspective. Both are stunning, but direction of travel changes everything.
My direction changed the day I got sick. My journey with Lyme has altered me in many ways, but a big one is perspective. I see things differently now, and, like a giraffe penis, I can’t unsee it.
Last weekend, my husband and I traveled about ten hours to upstate New York for the Living Well with Lyme conference at the Omega Institute. I’d initially found every excuse not to go, but when I was given fully paid registration, lodging and meals for both of us, I couldn’t refuse. Riding in a car for any length of time is painful. My joints swell and hurt, and ten hours was daunting.
But guess what?! It was the most incredible therapy.
There were over 200 hundred participants. Dr. Horowitz, a renown Lyme specialist who has treated more than 12,000 individuals with tick-borne illnesses and author of Why Can’t I Get Better: Solving the Mystery of Lyme & Chronic Disease, delivered the keynote address. As he spoke, I felt vindicated. Air hunger, facial palsy, joint pain –he outlined the symptoms of Lyme, its co-infections, and other chronic illnesses. He discussed the need for more accurate testing, thorough research, and solid treatments. I sat with tears in my eyes, riveted.
John squeezed my hand. I looked around at the participants. Wheelchairs. Lots of canes. More women than men, but every age. Every hair color. I saw elements of myself in many of these people. Some appeared healthy. Most looked haggard, and I wondered if that’s how people view me in a crowd.
There is relief in seeing others like you. I listened to the speakers and felt a peace, finding solace in numbers. I held back tears as a critical realization set in. I’m not crazy. This is real. I’m not the only one.
A couple days before we’d left for NY, I met with a rheumatologist. I’d waited nearly six months for this appointment and was looking forward to resolving my joint issues. Specialists are supposed to provide comfort and guidance, right?
Nope. Not this one. She actually questioned my Lyme diagnosis, even with two positive Western Blot results in her hand. Her reasoning? “I don’t think you have Lyme because we don’t live in an endemic area.”
Yes, she actually said that.
I nearly imploded right there in her office. How could a specialist, particularly a joint specialist, be so uneducated?? I’ve preached to elementary school students and anyone who reads this blog that ticks reside in every U.S. state, except Hawaii. Lyme has been diagnosed in every single state, and the CDC estimates that over 300,000 are infected each year.
I left her office feeling angry and frustrated, but, more than anything, doubtful. That’s one of Lyme’s sneaky tricks. Because it isn’t popular, like cancer, people don’t understand it. They question it, and even though I know in my gut that I have traditional Lyme symptoms, the community of ignorance makes me doubt. Like so many other Lymees, I wonder if it’s real, if it’s all in my head, if it’s something even worse that I wasn’t tested for, if I’m dying of a disease the doctors have missed.
When we left for NY, I was a sad, skeptical mess, but within an hour of arriving, I was stronger and happier. I fit into this world –the whole-food eating, stereotypically hippy campus with vegetable gardens and a bookstore. No cell service. Wifi only in the cafe, which served decadent hot chocolate made from almond milk. In a twin bed in our stark 10×12 cabin with a screened ceiling and tent roof, I had the best night’s sleep I’ve had in eight months.
Being with these people in this environment soothed my soul, healing my emotional brokenness in ways no medication could. No miracle cures or treatment plans were introduced, but I felt hope nonetheless.
Perspective changes everything. Photos of giraffes. The beauty of a sunset. Chronic illness.
I choose to see the grace in the sickness. I am not Lyme; I am mom, teacher, wife, friend, writer who also has Lyme disease. There should be no doubt about my diagnosis, particularly by the medical community. It is a struggle every day, but my life is also more rewarding because of it.
I see things differently. I think my whole family does. After all, my loving husband, whose favorite week of the year is “deer camp,” voluntarily drove ten hours to sit in workshops and eat vegetarian meals. He was about 500 miles from his comfort zone, yet he embraced the new experience for me.
“When you change the way you look at things, the things you look at change.”
Perspective is a choice, and it’s one that can drastically modify our direction and transform our purpose. Willingly opening ourselves up to new adventures and unexpected change is hard. Vulnerability is scary. But rather than wallowing in the difficulties, I work to see the sunsets, the beauty, the view from my children’s eyes. I want to lie on my back and snap that creative photo, capturing original angles. I want to allow myself the gifts of vulnerability and vision.
That’s not to say I don’t have rough moments. I used the word work intentionally because that’s what it is. Intentional, deliberate, mindful work. For the most part though, I can see it’s a pretty darn wonderful life, even with Lyme coloring part of it.
After all, if perception is reality, as the saying goes, then I want my perceptions to be positive and hopeful.
So I cling to the good.