Caregiving.com Post: What Made Me Cry

As I mentioned, I'm going to re-post my blog posts for Caregiving.com here, so here's the one from this week:

After my introductory blog post, Denise asked “Would you mind telling us a little more about your tears? What was most overwhelming for you?”

I don’t mind sharing at all! After all, that’s what we’re all here for, right?

What made me cry? Hmm.
There was a lot of crying during our first year of marriage. Mostly on my part. A lot of it was normal we-didn’t-get-married-until-we-were-in-our-30s-and-set-in-our-ways/standard adjustment stuff. Like, what? I’m not the most important thing/person in the world and what I want doesn’t trump all other desires/feelings/plans?

And on top of all of that, was the disability stuff.

I will expand on this further in a future post, but having a disability in marriage is much like having a third person in your marriage. It took me many months to realize that this was how I felt. Crowded. Stifled. Overshadowed. Jealous. All of that. Once I figured that out, I was able to work with it, and start healing.

But up until I realized the “3rd person” thing, I kept getting hurt every time my husband’s disability would take center stage our plans, because I wanted to take center stage. I wanted to be in control of the plans.

I felt like I was being forced, over and over again, to realize that my husband was paralyzed. It kept slapping me in the face, out of nowhere, and it hit me like a Mack truck every time. Usually, it was the visuals that would bring me to tears. Like in the morning or evening, when I was draining and cleaning out his leg bag or bed bag (used to collect his urine).  I would see myself in the mirror, this young, healthy blonde newlywed standing there in the bathroom of her newly decorated apartment, draining a giant bag of stinky urine, and I would think…

Is this really happening? Is this really how it is going to be forever? Can I really do this? God, are you there? Do you see what’s going on here?

And  then, well-meaning people would come up to me or e-mail me and tell me how amazing of a person they thought I was for marrying a guy in a wheelchair. Like I was some sort of saint. It was nice of them to say that and all, but when I was staring at myself in the bathroom mirror, emptying bags of urine, and not liking it I felt like a horrible person.

I realized there was a lot of the caregiving stuff that I just didn’t like. Especially bathroom stuff. Let’s face it, bladder and bowel care is just not a lovely thing. Well, I was beating myself up. I was realizing that I didn’t like it, and I was worried that that meant I didn’t love my husband enough, that I wasn’t living up to these expectations of other people who thought I was an angel, and I felt like a fraud because I did know what I was getting into. I thought I could handle it, but here I was, falling apart.

I finally admitted to him that I didn’t like that stuff. Until I did that, I didn’t think he would understand. Because he’d been paralyzed for 15 years, he was really  used to all of this, he would literally hum while he was going to the bathroom, and I’d be just on the other side of the door, feeling so guilty and balling my eyes out! He seemed so happy, so okay with everything. I didn’t want to bring him down. But, when I finally did open up (translation: when he pulled the truth out of me) I was so free! He completely understood that it was possible for me to not like the nasty stuff, but still completely love him.

It certainly didn’t happen overnight, but things are WAY better now.

I would also cry when metro elevators weren’t working. I cried when I felt like my family was making a big deal over him, I’d cry at church when I felt ignored. I would even cry when he would fall asleep in the car when I was driving, because I was like, really? You can’t drive, so I have to drive everywhere – you can at least stay awake! I’d cry on my way out the door to work in the morning, because I had already been awake for 4-5 hours taking care of all of his needs, cleaning, making breakfast, and I knew I was looking at an hour and a half commute, plus a full work day at a new job.

Phew. Yeah. It was a lot of tears. Not all of them were because of my new caregiving role, some tears were from too much change at once (new job, new place, new marriage) but it was a dark time.

So thankful to my family, my God, my friends, and my teammate – my husband – who got me through that season.