Bearnaise Sauce Dogs, Ministry, The Inner Landscape

Visibly. Invisibly.

Invisible Illness Awareness Week, or something along those lines, just ended, and I am thinking a lot about the things that show and the things that don't. When I got home tonight, after a pretty long Sunday at church–a very good day, but long–I wanted to take Sam for a walk. LP had given him dinner, and the window of opportunity for being outside before dark was narrowing. He seemed excited to go with me, but when he realized I planned a neighborhood walk instead of a ride in the car to more exciting places, he balked.

This happens often. It's got nothing to do with his cancer. 

But my desire to stay in the neighborhood had to do with my invisible illness, Rheumatoid Arthritis. After a long day, and sometimes after a regular day, I have joints that complain. My right rotator cuff is the worst, so I did not want to get back in the car and take the kind of short car ride that involves a lot of turns. 

I find it sort of hilarious, in an awful way, that the joint I find most bothersome is one I never knew anything about, except in other people's stories. I'm not sure I even knew exactly where it was.  A friend refers to it as my "old football injury," and that entertains me. It's surely true that the only throws I make now are gentle, underhand slow pitches of a cookie into Sam's mouth. 

But to look at me, you wouldn't know anything was the matter. 

Sam, on the other paw, now has a big lump on his back leg. It was invisible, at first, because black and rust-colored fur covered it. I found myself talking about his diagnosis at the Farmer's Market the other day, and then hearing someone else repeat it to the person she was with, pointing out the tumor as if I could not hear her though we were only a few feet apart.

A histiocytic sarcoma is pretty awful. The sarcoma interferes with limb function, so when it appears in the extremities, the limb needs to come off, which was not really an option for Sam in the opinion of our vets or, frankly, our family. He's 7-and-a-half, which is beyond the average life span for a Berner, and he has arthritis in both elbows and one wrist, and it all sounds like too much trauma when there is no guarantee it will extend his life. 

Though of course it might.

But then he's left with one adult in the house to rehab him after surgery, one adult whose invisible illness makes her less able to help a big dog who might require if not lifting then support for walking. 

This makes me sad and not a little angry. I felt the same way as Molly declined, and we discussed her care and recognized that as she needed to be lifted in and out of the car and had trouble even with the ramp, I would not be able to manage her by myself. It was a hard, hard situation as we got ready for my husband to go away for work and weighed her enthusiasm for life against her increasingly crippling arthritis in three legs. 

Her visible illness, my invisible one.

My tendency to take the blame for everything, to take full responsibility, probably sounds a lot like what my own illness does. In Rheumatoid Arthritis, your immune system attacks your joints. Because it's a disease found primarily in women, books are written that speak the self-blaming, self-attacking language in ways that hurt even more. The medicines that are effective suppress immune response, so the system stops freaking out.

As the person for whom The Onion headline "Area Mom Freaking Out Again for No Reason" may have been coined in the first place according to my kids, I get this. 

When the groundwork has been laid so effectively, so deeply, so invisibly, how do you stop blaming and attacking yourself for everything?

I'm going to say that one of the biggest growth steps for me has been working as a pastor. Somehow in my pastoral life, I can see the difference between things that are actually my responsibility or fault, and things that are not. I may not be able to do it 100% of the time, but it's a vastly larger percentage than the one in my personal life. Over the past eight years, I've experienced a slow-growing understanding of the distinctions, and maybe someday I'll be able to apply the recognition, visibly, to heal the invisible wounds long since scarred over, the wounds of self-blame.

7 thoughts on “Visibly. Invisibly.”

  1. I mailed the box just now — look for it in a couple of days. Zoey’s nasal chondrosarcoma tumor was invisible for a while, just long enough to get her Longshots taken… And then it bloomed. How cruel to distort that beloved face, but now I have no memory of it, except in pictures. And that’s okay, because it was only a brief part of her life. Whatever happens with Sam’s tumor, you and I know that it is only temporary.

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  2. I am finding more and more as I get older that what my mind thinks it can do and what my body can actually handle are two distinctly different things. Not that I don’t ignore my body way too often and end up in pain later. It’s a hard lesson to learn, and I can imagine doubly so when you have an invisible illness which really lets you know you are not in charge any longer. We all have to learn to be more gentle with ourselves. I am so very sorry to hear about Sam, and hope that all goes as well as it can for him… and you my friend. Warm, gentle hugs to you today.

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