Friday, July 17, 2015

It's the little things that matter.

I wish schnauzers had innate gardening skills. 

I was sitting on my duff underneath one of our apple trees picking up fallen apples and pulling weeds yesterday when I heard the 'ding' of an incoming text message. So I took off my gardening gloves and dug my phone out of my bra.

Yes, I'm still storing it there. Don't judge me. Old habits die hard....

It was a simple message saying "Hey. How are you today?" from a friend that has just been given a diagnosis that could only be described as horrifying - progressive supranuclear palsy. This information is from the NIH:
Progressive supranuclear palsy (PSP) is a rare brain disorder that causes serious and progressive problems with control of gait and balance, along with complex eye movement and thinking problems. One of the classic signs of the disease is an inability to aim the eyes properly, which occurs because of lesions in the area of the brain that coordinates eye movements. Some individuals describe this effect as a blurring. Affected individuals often show alterations of mood and behavior, including depression and apathy as well as progressive mild dementia. 
The disorder's long name indicates that the disease begins slowly and continues to get worse (progressive), and causes weakness (palsy) by damaging certain parts of the brain above pea-sized structures called nuclei that control eye movements (supra nuclear). Continue reading here. 
Oh my gosh. This is so unfair, I thought back when I heard of her disease. She's only in her '50s. She has a family and friends that love and need her. And to be aware that one's cognition is going to slowly slip away seems so cruel.....

She's in the early stages of the disease and is understandably shocked and anxious. But she's also feeling isolated and lonely. "Nobody knows what to say to me. I understand why, I get that. My speech is weird and I sound like I have no emotion...But it means so much to me to keep in contact with people," she told me once. "Even though I have trouble saying things, I can type or text easily. I love getting email and texts." And after that phone call, I resolved to do my best to stay in touch.

I wish she didn't live a few thousand miles away.

So yesterday I sat in my garden and with dirty fingers replied to her text in an exchange during which we just chatted about our day's plans and sent silly photos of our dogs to each other. Just ordinary, friendly conversation.

I couldn't quit thinking about her as I shoved my phone back into my bra. I can't imagine what my response would be if it would have been me, instead of her, that was forced to face such a devastating disease. Yet it seemed that although it's impossible to compare our situations, still there was one thing that we had in common: that even though our lives have been changed by disease, we both still want to participate in life - not only those big life events, but more importantly the little day to day events.

I remembered back to an earlier conversation that I had with one of my relatives shortly after I became disabled due to autoimmune disease. She earnestly told me that she loved me and was concerned about me, "Because you look so sick! You just aren't the same person you were before this! I wish there was something I could do. Tell me what I can do for you!"

After I recovered from the shock of someone telling me you DO look sick instead of the skeptical but you DON'T look sick, I considered what she had asked of me. She really wanted some kind of list of things that she could do. But what I told her seemed to perplex her.

Of course it didn't help that we were having this conversation over some wine; she having had far more vino than I. (I love those kinds of conversations with her.) So I repeated my request:  I told her that I just wanted to know what was going on with her and her husband and her kids. I wanted to hear those little incidental things that happen in daily life. I told her that I wanted to know about her daughter's dance team meets, her son's college escapades, the cool new cookie recipe that she had found, and just stuff. Just little ordinary things.

So that's what I'm trying to do for my friend. I sent her pictures of the big nasty weeds living next to my hydrangea today and her reply told me that even though she couldn't convey the emotion in her speaking voice, she was able to text her laughter to me.

Made my day.

Ew. Glad these awful weeds make SOMEONE happy. Certainly not me. 

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