How to live hopefully when you have a chronic illness

I’m desperately hiding outside on this gorgeous fall day to avoid my precocious 10 year old who hasn’t stopped talking for 45 minutes. By haven’t stopped talking, I mean he has barely taken a single breath, and certainly hasn’t allowed me to get in a word besides “oh wow” and “that’s cool.” This is my life. I love it, but sometimes one needs to escape to the back porch even though it is under construction and a total disaster. Yes, I see the piles of stones that need to be removed and the grass that needs to be mowed and the weeds that need to be pulled. But all that really matters right now is the silence.

Okay, not so much silence. The neighbor’s dog is barking and she is yelling at it, someone is listening to “Hamilton,” an airplane flies overhead so loud that my ears start ringing, and somebody is hammering in their backyard. I relish it all. It’s the sound of other people, the sound of people who don’t live with me. It’s a reminder that life still goes on, and that everyone is outside either enjoying the beautiful day, or at least taking advantage of it to get some work done like I am.

The piles we make

The stone in the backyard was put in piles by yours truly and company for a patio and path we are building. The company did not appreciate the labor, and in fact their was some complaining about how child labor laws, but we sweated through it and got all the stone off the driveway.

I’m struck by how different all the piles are and how they’re just like people. Some are tall, some are short, some are lighter, some are darker, some are sharp, some aren’t balancing very well, some are easy to carry, and some are not, and some are breaking into tiny pieces. We as human beings tend to make piles of our own. We judge people instantly and put them into categories instead of appreciating them for the individual pieces they are. I like to think I’ve got something in common with every piece and that each is valuable in their own way. Even the pieces that are breaking apart are essential and will be joined together with the strong pieces to make a studier path.

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When we’re breaking apart

Sometimes we all feel like the pieces that are breaking apart. We’re trying our best to hold ourselves together, but somehow everything is crumbling. What I try not to forget is that people who are told they need fixing are often fine just as they are. The world can’t function with just huge strong pieces who take up all of the room and attention, but never connect to other pieces. The world needs the broken pieces to make up the difference. As Earnest Hemingway said:

The world breaks everyone, and afterword some are strong in the broken places.

You can feel broken, and still be strong in your brokenness.

Building a path that fits together properly can be discouraging, boring, and vexing all at the same time. Just like these piles, people don’t fit together easily either, they have too many hard edges and too many soft. That’s where the broken pieces fit in. When you put all the pieces together, you make a stronger and easier path for everyone to walk.

My disabled life is just as important and integral to the world as a non disabled person's. Share on X

Staying connected with chronic illness

There are times when having a chronic illness has made me feel small and alone, but it’s times like this when I feel that I’m connected to the pattern. The pattern of all our lives intertwining with each other. Every one of us is needed to play their part, and I’m happy to be integrated into the pattern. My disabled life is just as important and integral to the pattern as a non disabled person.

Because I have bad days, I never want to take the good days for granted. I rejoice that today I can have a normal boring day and appreciated the small joys that gives me. Share on X

Because I have bad days, I never want to take the good days for granted. I rejoice that today I can have a normal boring day and appreciated the small joys that gives me.

My day has been mundane:

• help kids with virtual school
• run to the grocery store
• take a kid to the orthodontist
• make a phone call to the school
• talked to by a 10 year old for 45 minutes.

It’s just so normal. And after 6 months of living in a pandemic, I thrive on normal.

Small joys

Life is made up of small joys which are all part of the pattern. Today a cucumber appeared in the garden I thought was dead, I played a joke on a friend and we laughed about it, my son spent 45 minutes telling me about a show he cares about, I brought my husband a diet coke and he was grateful. So many beautiful things amongst the trying and frustrating things.

Fall brings me hope. Hope of Christmas, hope of pants weather, hope of my favorite cookies (Carmel apple cider cookies) that I’ll finally get to make again when my daughter gets her braces off. Hope that the future is better.