Trouble in the Parking Lot

I know what you're thinking. You see me getting out of the van at the mall. You see the handicapped tag around my rear-view mirror. I see you waiting there, sizing me up, wanting to make eye contact to see if I'm someone who actually needs this spot or if I'm working the system somehow.

And here's what I need to tell you:

I wish you are never the person in my orthopedically-therapeutic shoes. I wish that you never know, hour-to-hour, much less day-to-day, what you will be able to do or for how long.

Today, I probably need the cane. Will I use it? Probably not, because I'm having a bad wrist and hand day, too, and leaning on the cane only exacerbates the issue. I know I have two hours tops to be productive, and you are witness to this bit of my struggle.

I often park far back, at the end of the line of cars, and make myself walk the extra painful steps, even when I am hurting. If I feel like I have enough energy that day to get it done, I will force myself to do it the way a lot of people make themselves go to the gym even when they feel lousy or fatigued, because I know this is probably the most exercise I will get today. Maybe for a few days.

Today is not one of those days. Today, every single part of my day has been a struggle.

But you go on and keep staring and mumbling and pointing. Shake your head. Tell your friend about the person at your workplace who uses her mother's old handicapped placard even though it's wrong, because it's too hot to walk so far to the main building in the summer heat, or because the cold weather makes her knees hurt. Wonder if this is the same kind of situation as you point to me with your chin. Wonder if anyone checks to make sure the system isn't being abused.

I realize I'm judging you, too, assuming the worst, because it's happened often enough that I'm trying to justify to myself, even as I try to lever myself out of my seat, whether or not I could have parked farther away today and just avoided this.

And as for the lady who honks and yells from inside her air-conditioned car because it's taking my teenagers too long to cross the road with me? Maybe consider that they're slowing down for my benefit. Just because I'm not using my "rollator" chair or my cane today doesn't mean I'm not struggling just to get across the road. That half hour sitting in place in the car was enough to freeze up my hips, knees, and ankles, and it's going to take a while before I'm able to move easily.

RA is more than joint pain before a rainstorm

This isn't discomfort that I'm dealing with. Rheumatoid arthritis isn't simply joint pain before a rainstorm, or an old volleyball injury acting up. It's the fluid in my eyes and lungs either drying out or becoming inflamed. It's joints swelling as if they are all broken or red and hot as if they were infected. It's my body trying to "help" me through a misguided and over-active immune response. It says I am the enemy. It's fighting things you can't see. And the whole time, I can barely think straight for the pain that never ever goes away.

I won't stay at the store for long, and I planned my whole day around this one trip because I knew this would probably happen. We will rush our selections and the kids will help me through the line. At that point, though, I'll be so exhausted I will beg to leave the store so I can sit down again.

Yes, was just here yesterday buying shoes. I didn't stay long then, either. I was almost crying over the fact that I knew I'd have to return to the store today to exchange them, because I can't just casually run to the mall when I feel like it. I have to measure out my hours and decide who and what gets the tiny bit of me I can spare, when I can spare it.

Be happy you aren't the one who needs that handicapped spot, and that you can cross the road at a brisk pace. Be happy for me, that I have kids who don't complain about not being able to hang out with their friends at the mall because I won't be able to leave the house again to pick them up later. Be kind and don't honk the horn at us. I'm doing the best I can.

I know you might think me lazy. You might have even seen me earlier at the grocery store, pushing my own cart and moving my things into the trunk by myself. Today I had an okay morning. I pushed myself way harder than I should have. I'm paying for it now.

I'm under 50, but I look older, don't I? I know. The RA, the meds, the lack of sleep, and the pain have taken their toll. Old age is something that used to scare me before I had kids. Now I'm just hoping I make it to middle age on my own two feet, and that RA complications don't prevent me from seeing those later years of life. Enjoying them? I will do my best. That's what I'm doing now -- or, trying to, anyway. It's hard.

It's the little things that help

I could be the person who leaves the shopping cart wherever my car is parked, but I won't. I'm going to move slowly while I deliver it to its proper place and return to my car. I know what it's like to have to stand around waiting for someone to bring the carts back inside the store when it takes forever to collect them. For me, that shopping cart is kind of like a rolling walker. I don't want the next person with RA or some other physical challenge having to walk all the way back out to the parking lot to get a cart when I could deliver it to the collection spot myself. Want to help? Do the right thing. Deliver the cart back up to the front. Offer to take it up for someone else, even if they don't look like they have a physical limitation. They might be a mom with little kids in the car, and not want to leave them alone. That makes sense, right? You wouldn't judge them for it. So, help. Do what you can and extend the same benefit of the doubt to someone who doesn't have an obvious handicap. I know what it feels like to be the person for whom getting food for the table is the hardest thing I do all day, and I don't want to make someone else's day harder.

I know it takes me longer to back out of my parking spot than you'd like, once I get going. I'm a very careful driver. But turning the steering wheel hurts fiercely. So, does twisting to put on that seat belt. So does turning my head. I'm doing it anyway... just more slowly than your patience can tolerate. Tomorrow, I will stay at home. I'm hoping I didn't forget anything important at the grocery store. It happens. It's hard to remember little things. My short-term memory suffers these days.

I'm slow. My days are unpredictable. Mornings are usually painful. Midday is often easier. Evenings find me completely out of every kind of energy -- mental, emotional and physical, most of the time. I am not the face of rheumatoid arthritis. I am a face of someone -- one person -- with the autoimmune disorder. There are so many others like it, and so many others that are vastly different.

So I hear you and I see your expressions of doubt. I try to not let it get me down.

Be happy these things come more easily to you. We all have struggles at some point. Mine makes every day hurt. Every single day. It never stops, and it will only ever get worse. It's a progressive condition. It doesn't care at all about whole-body pain, and fatigue, and a hurt that nothing can reach, so I don't even try.

Just... be patient with me. Be kind. And, maybe, if you or someone you love is in my ugly-but-comfortable shoes someday, you'll be more likely to extend compassion and patience, and less likely to judge.