Thursday, March 3, 2022

Less is More

It's been almost two weeks since we came home from Jeff's most recent hospital stint, and his recovery has been slow. He hasn't even felt good enough to get out of bed and into his wheelchair, and that's taken a toll on all of us.

We've been through a lot of rough patches during our time living with Jeff's spinal cord injury, and this is one of the tougher ones.

I feel numb, like I'm just alive to try to make him feel better, but nothing I do works. And when these patches crop up in our life, I find myself wanting more.

I want a better life for us. I want something different for us. Something happier, something easier.

 Something that isn't this.

I was thinking about it in depth last night, and after some self inquiry, I discovered that while I might think I want more, what I really want is less.

Less pain for Jeff. Less worry for me. Less time alone for Evie while mom is busy tending to dad. 

Less heaviness for us all.

Because less of all that would mean more life for us.

More time to spend outside. More smiles to share.

More living.

People often tell me how strong I am when they hear our story and how I've taken care of Jeff for the last 9 years. But the truth is I've been hunched over crying in the bathroom alone lately because this is all just too much to handle. Right now it's just piled too high. 

More than once over the last several weeks, Jeff and I have looked at one another with exhaustion on our faces and tears in our eyes from the constant toll of trying to get to a better place and have said quietly to one another, "This is no way to live."

What we need is a little less.

I haven't blogged much lately because this feeling isn't new. It's not always present, and not always quite so heavy, but it's always there. And whenever I write about heavy stuff, I inevitably get comments from people who seem to have all the answers at their fingertips.

You need to get someone to help you. I'm sure your insurance would cover caregiving for someone like Jeff. It won't. We've checked.

You need some time away. Why don't you just go to a nearby hotel for a weekend to recharge. Great idea. Do you want to come take care of my husband while I'm away?

Everyone has an easy peasy solution when it's not their problem to solve.

And while I always strive to maintain a positive attitude even in the face of so much adversity, I am sick to death of seeing bullsh*t sayings like "The only disability in life is a bad attitude."

I get the meaning, and it's probably a little more applicable to someone who has the ability to achieve even the smallest level of independence. 

But really?? Try saying that to my husband's face.

My husband, who relies on everyone else for everything he needs. My husband who depends on a machine to breathe for him. My husband whose privacy is non-existent because he can never be left alone. My husband who will live out the rest of his life unable to touch his face or feed himself or hug his wife and daughter.

He's supposed to just slap on a smile and his disability will melt away?

F*** that.

Even people with the best attitudes and outlooks on life have dark days. 

And right now the days are dark for us.

This isn't one of my happier blogs. It's not a good example of picking myself up from the depths of despair and trudging forward. It's not a reflection of how you can get through any situation with a positive mindset.

But my god it's truthful.

We've been through the darkness before, and we know there's light somewhere ahead. Even today I went outside for a few minutes to put my face in the sun and soak up a little Vitamin D the old fashioned way. And it felt good. 

And that's what we need. 

Less darkness. More light. More warmth to feel good again.

It's coming. I know it.

Saturday, October 16, 2021

Lil Herbie and His Shopping Cart

If you're a fan of the Los Angeles Chargers, you might have heard about one of quarterback Justin Herbert's pet peeves: abandoned carts. I'm not talking the virtual kind. I'm talking about the real, physical shopping cart that people push out of stores, unload the contents from into their vehicles, then oftentimes ... just leave right there in the parking lot - or push into those striped lines next to the accessible parking spaces thinking it'll be out of the way (it won't - and I'll get to that in a minute).

In an article for ESPN, analyst Mina Kimes wrote about a time that Herbert's teammate Gabe Nabers saw his usually low-key quarterback's temper flare while they were out shopping. Nabers was manning the cart, and after they'd unloaded their goods, he gave it a gentle push, planning to abandon it in the parking lot. The story goes that Herbert addressed the abandoned cart issue and told Nabers, "No. Take it all the way back."

This story was eaten up by Charger fans - my family included - highlighting another reason to love our new quarterback. He does the right thing - the decent thing - and helps to make sure his teammates are doing it too.

And if this story doesn't make you love this guy even more, then I seriously question if there's a heart beating in your chest.

But beyond the fact that it's the right thing to do, I liked this story - and more importantly this characteristic in our young leader - for another reason.

Abandoned carts are a big deal in the disability community, namely for wheelchair users. And my family happens to be a part of that community. My husband Jeff sustained a spinal cord injury in 2013 and now uses a wheelchair. 

I'm the driver in our family. My husband doesn't have arm function, so he sits in the middle aisle of our accessible van in his power wheelchair. I can't tell you how many times I've tried to park in a space, only to have an abandoned cart in the way.

I'm going to be super honest here. Since I'm able bodied, this type of thing - while frustrating - falls more into the "inconvenient" category for me. Because I can hop out of the car and move the cart.

But I know so many wheelchair users who drive their own vehicles using adaptive controls. And when they encounter an abandoned cart in their way, what is inconvenient for an able-bodied individual simply becomes impossible for them. They don't have the option of "hopping out of their vehicle" to move the offending cart. 

Wheelchair users who drive have vehicles with ramps so they can enter and exit. And oftentimes those ramps are located on the side of their vehicle making it impossible for them to park in a regular spot, hence why they must use an accessible parking spot - the ones I mentioned previously with the striped lines - they're called hash marks - like in football. And like in the sport, they're there for a reason - in this case, to make it possible for wheelchair users to access their vehicles safely.

But what if there's an abandoned cart in those hash marks? What if that cart makes it impossible for a wheelchair user to deploy their ramp and exit their vehicle? What if the hash marks that are often in between rows of cars leading to a store entrance are littered with abandoned carts blocking the path for wheelchair users who can't simply roll around them?

I think I've asked enough questions at this point to drive home my message.

Abandoned carts are a big deal - a huge one really.

So when I saw Justin Herbert's stance on them, it made me like him even more.

I've recently crocheted a Justin Herbert doll for my husband for his birthday, and he's become somewhat of a sensation among Charger fans. It's not something I anticipated, but I've embraced it. People love Lil Herbie because people love the real deal. And it's been a blast to share Lil Herbie's adventures on social media.

I was reminded of the cart story this week from a comment on Twitter, and it prompted me to see if I could find Lil Herbie his very own shopping cart. Amazon came through, and now Lil Herbie stands proudly beside his cart. The cart he's returning. The cart he's pushing back to the store or to the designated collection areas in the parking lot.

It stands next to him as a gentle reminder that taking a few moments to do the right thing - the decent thing - doesn't just benefit you, it helps others as well.