Saturday, May 29, 2010

"I know"

We were in a store where I was investigating a mysterious charge on my credit card. It was one of those "hidden" charges, where I didn't opt out of something on the laptop I bought, so 6 months later I got charged.

As I was getting the information, a guy who was probably 18 was behind the counter, smiling at me like he knew me. Typical of me, I didn't have any clue who he was or if we had ever met.

He said, "I know what it's like ... (indiscernible) ... for 8 months." "8 months!" I said, thinking I would have to battle the mysterious charge for 8 months. Then I realized he meant the wheelchair - he must have spent 8 months in a wheelchair. I smiled and said "I had shoulder surgery." Internally, this pot of boiling water was just about to overflow. Just as I cannot understand his 8 months in a wheelchair, which must not have been fun, he cannot understand my time.

We have a video on culturally competent medical care for people with disabilities. It was made where I work, by and about people with disabilities (mostly employees). One of my favorite parts of it is when my friend Cheryle says "I hear it again and again from patients, that one of the worst things you can say to them is that you know how they feel. (pause) Maybe you can say 'That looks frustrating' or 'I hate it when things like that happen to me,' but don't ever say you know how they feel, (looks straight into camera) because you don't."

Recently, the CEO of the MS Society offered a column,
(go to the bottom and click on "On My Mind")
She gets it (in part that she doesn't have MS). She and I had an email exchange before this, where I contemplated whether she was "getting it right." Now I know - she thought about our emails. She listened, really listened.

What cannot be understood by many is this. Perhaps using a wheelchair is fine. It's not my ideal. I'd rather be running. But it can be fine. I can go faster. I can go more places. It has improved my quality of life. For this guy, it must have been the worst thing ever.

What could not be understood today was the invisible. I had shoulder surgery which would be minor for most. But I met with the surgeon this week and he confirmed it's going to be harder for me. So today, I took my car to the shop. Then we used my husband's car. We went to the library, then home, then to lunch, then eventually to pick up my car, and then to this place. Lots of transfers in and out of the wheelchair made my shoulders somewhat beg me for mercy. My husband's car sits lower, so it hurts more (shoulders) to get up.

There are other invisible symptoms. No one knows what I'm going through. Take that back. God knows. Likewise, I don't know what anyone else is going through. God knows.

I have learned much through this process. Surgery with MS is hard and recovery is fatiguing. Search on the Internet and post-surgery depression is common. I'm thankful my mom has been here so much to help with that. Sadness and frustration accompany not being where I was before all the pain started. But I'm getting much better. I have not learned patience - perhaps I never really will.

So, I am perhaps glad this guy at least said hello and tried to outreach. I wish we the time had been there to share our stories and discover what was unique about each one. I do like to hear stories from other people, about themselves, friends, relatives, etc. Each story is unique. Each person is unique. There is learning in each story and person, and there can be similarities.

Perhaps by sharing, we can find similarities and differences. We can discover that we each have a different journey. Likewise, we each have a different faith journey. No one really knows what anyone is going through. No one, except that person and God.

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