Making it “Normal”

Over the last couple of weeks, I’ve had some great conversations in person and online with other spoonies about illness, particularly invisible illness, and interacting in public. What’s normal?

I’ve noticed the reactions when I go out since I’ve had the broken foot. I feel like I take up a considerable amount of space and time on my knee scooter. My husband, a friend, and various cab drivers have pulled this device in and out of cars for me. Others on some sort of wheels or walker commiserate with me. People who have been in a similar situation are very kind and considerate. Those with no such experience will bump my protective boot, dart dangerously in front my scooter (risking becoming my own personal speed bump) or rush the elevator door before I can exit. I’m unsure if the offenders are clueless concerning their surroundings or self absorbed.

For some strange reason I’ve taken to apologizing for the space I consume.

I note the women are the only ones who apologize. It’s like it’s a bad thing, to take up space. A girlfriend yelled at me for it. “Stop apologizing! You are just as worthy of that space as anyone else is!”

It’s the same advice I’ve given other women: take up space, get loud about what you need, and for G-d’s sake, stop apologizing! Why is it so hard to take my own advice to heart?

With the invisible stuff, it’s difficult. Our invisible illnesses are challenging for those who interact with us. One point made to me was how difficult it is when the decline is gradual. One day you can do ALL THE THINGS, and the next day it just ain’t happening. You look the same on the outside, so others can’t see the difference. They don’t get why you can’t do what you did before. I can’t understand it myself.

Case in point: my weekend. Yesterday we took the kids to the Science Center. It’s absolutely huge, and we walked (more like rolled in my case) 2 miles around the place. My boys had a blast and complained when we headed to the door 3.5 hours later. Today I’m wiped out. It was quite a bit warmer outside, so we decided to just kind of crash on the couch and play LEGOs. My kids are down for a nap and I still need to hop into the shower. I don’t regret going hard yesterday, but I pay for it. To me, it’s worth it to spend the time with my family and make memories.

I decided to make it a point to talk about it, particularly my own struggles. I want to normalize all of this. No one escapes this life unscathed. There is no shame in needing to do something differently or needing help. My hope is that maybe another young spoonie feels comfortable in her own skin, taking up exactly as much space as she needs, no apologies.

This January, I took a class on disability inclusion. In a wicked little twist of fate, a month later, I needed to ask for an accessible parking hang tag for my own use. It was sobering, to say the least. I’d spent years on and off as a caregiver for various family members. I had a knowledge and awareness of accommodations. I hated that I sometimes needed to park closer or sit down more frequently.

Just a few weeks prior I ran on the elliptical at the gym. Now I could barely catch my breath walking across a parking lot. I looked the same on the outside. I needed no cane or oxygen tank. Every time I use the parking accommodation I brace myself for the nasty comments I know will eventually come my way.

20% of the population will become disabled at some point, either temporarily or permanently. That’s huge. Why should we hide or apologize when we need a little help?



On the wall at the Science Center is a sign: Adapt. Nothing is Permanent. This is true in sickness and in health. Right now, my life is in flux. I’ve had to turn down a few awesome offers because of my health, and accept others with full disclosure that I’m on the kidney transplant list and am battling to keep myself off dialysis. It’s heartbreaking when you see something you’d love to try, but know the timing is all wrong for it. Yoga teacher training is a post-op goal for me, but it makes no sense enrolling when I’m waiting for the call and watching my eGFR bounce from 18 to 14 to 20. While I’m a believer in just jumping in the deep end of the pool before you feel ready, sometimes timing and circumstances matter. I tell myself this is all temporary, that nothing is guaranteed, that all things must pass.

In the meantime, though, I’ll continue loving my family, taking care of myself, and speaking out for all of us. This loud mouth has a purpose.

Okay, enough for now. Time to get that shower before the kids awake.

Keep it renal.

J

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