Yesterday, Dennis told me that he hated me. I was a bit taken aback, since I had been working most of the day, and had just arrived home. He had some food stuck in his mouth, and I reached in to his mouth to remove the mucky mess. That's when he said he hated me.
I just walked away, and started watching my latest TV passion - Weeds. I stream it from Netflix onto our Wii, and I watch about 2 episodes an evening. Dennis eventually asked to come and sit by me in the living area and watched an episode with me.
Then he asked to go to bed. It was only 5:30 pm. I didn't argue and put him into bed in a propped up position so he could watch football and hockey and America's Next Top Model (sports and models, his two passions). A while later I returned to give him his meds, and even later to start his nightly feeding. It wasn't that we didn't talk, it's was just that I could tell he was in a funk. I knew he would tell me when he was ready.
It wasn't until this morning, when he woke me with a gurgling throat and I needed to prop him up, one more time. Then he told me that he told me he hated me because I was normal. I could eat by myself, put myself to bed, sit up in bed when I wanted and roll over in the night when I needed.
This is a picture of Dennis propped up in the morning - every pillow type thing we own just to sit him more or less upright so he could swallow everything that gathers in our throats over night. Most of us can simply cough out a bit of phlegm , but it isn't as easy for Dennis. Of course he hates my normalcy. He wants to be normal.
Pardon the language, but shit - this just won't happen.
We do still have a life that others would dream of having. But it's not normal, not for either one of us. And it never will be again. But it is our normal, and others may be jealous of what we have. Right now, it's Dennis being jealous of me.
And there it is - life.
Until later,
Ann and Dennis
5 comments:
I'm Judy from California. It was comforting to hear the patients point of view. I have MSA with very low blood pressure so I am not able to sit up. I am bed bound with 24 hour caregivers. A friend is typing this comment for me. I am able to eat soft solid foods. I understand Dennis's comments about normal people. I am interested in your other experiences with this disease. How others interpret the illness is often not what I are experiencing. I find this very frustrating. I dislike being told I'm not thirsty when I ask for a drink of water, just because I had some recently. I look forward to a response. Judy
Judy,
Please send me your email address which I will share with Dennis. I believe he will be willing to share his perspective with you. You can find my email on this blog and I will forward your response to him.
Ann
A truly moving post. Like you, Dennis speaks the unvarnished truth. Even though you and I share some of the cruelties of MSA, we still can't fully appreciate what it is like to be inside a body that constantly betrays you.
This humbles me.
I understand Marsha. I feel as though I am living the disease, but I most certainly am not. We do our best to be empathetic, but we simply cannot by completely sympathetic - we can't walk a mile in their shoes.
Ann, just know that I hold you and Dennis very dear in my thoughts.
I can understand how Dennis feels jealousy. Life is so damn unfair.
Angelika
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