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.
