I never fail to be amazed at what people will think and actually say when discussing a situation about which they have no experience. And how perfectly comfortable they feel in sharing their thoughts without a hint of a filter. I’ll admit, sometimes I lack a filter- but it’s usually when facing a dirty house that forgot to have chores done, or a driver on a bad day in a bad week in a bad moon. It’s not usually making observations about another adult’s life or the pain they are experiencing. Maybe it’s the social worker in me, but I would like to think that is the way human nature should be. Kind of like the walking a mile in someone’s moccasins or sandals- wait until you can say you might have been there even a little bit.
I was so very blessed to have had Casper catch me in my grief when I lost Linda. No, the grief didn’t magically go away, and no, I was not in denial. But I was blessed to have a hand to hold and arms to surround me and eyes that smiled for me once again. Until you have watched the person you love more than the entire world slowly slip away, so that even talking is difficult and going for a walk means a wheelchair and oxygen, you can’t know what it means to lose someone bit by bit. When I let on that Casper and I were an “us” there was much criticism and talk. Her friends were worried about her. My friends were worried about me and the kids. We understood it and withstood it. Her friends are now our friends. Many of you attended our wedding, which was a day of so much joy for both of us. It was who we are as a couple- our music that we share, relaxed, informal, all about good food and good friends. And Hawaiian Shave Ice of course!
We thought we would have the rest of our lives to enjoy new adventures. We joined two families. I have sisters in law I love and who check on my. I have new nieces and great nieces and nephews, and a brother in law. I am blessed. Casper got my crew. Mom loves her, and she has managed to learn who most of the rest of you are. Casper has learned to smile at our niece swimming in her mermaid tail in the pool and to listen with eagerness to Natalie, which at times can be a lot to listen to. She’s helped get two through school, one into her senior year, and kept me on track as a mom while we fought for sobriety for one. She took wild calls from mom when she was in the hospital and making no sense whatsoever, and calmed her down. Gail and I were on the floor laughing, while Casper kept her senses and simply listened. It gave us the break we needed right at that point. Casper and I thought we would have so much more time when the schooling was done and the careers were winding down.
I remember one day Linda called me while I was at work. It was about two months before she died. She and I talked, and I promised to be home as soon as I could. She said she loved me, and she would like to see me when I could “find the time.” I was so busy trying to guard my time for when she really got sick that I missed that time. She was only really sick for a week. I promised myself I would never do that again if this ever happened again. I have talked with other widows my age, and they had the same experience. You work to save time, and then suddenly you have too much time and no loved one to share it with because you guessed wrong. And there are not rockers on the front porch to watch grandkids because some stupid disease got there first. And here we are again.
Parkinson’s Disease. It could be worse- it could be ALS, or even Myasthenia Gravis. All those symptoms. All those tests. And three neurologists who denied there was anything seriously wrong and told me to allow the big experts to tell me there was nothing really wrong. Who were we to say they were not listening? Yeah. Two years later, and now beyond much of the treatment. We finally have a doctor who seems to care, but we have a disease that is going to win eventually. It’s so far advanced already. Do not start inundating me with hopeful ditties and cures. Been there. Done that. We know this disease. We are fighting the good fight. But we have seen it so many times, and we know the odds. And yes, we are talking about them. Poor Casper- she’s married to a social worker. She’s going to talk whether she wants to or not!
So here’s the thing. Casper does not smile because she can’t. PD takes that away. It doesn’t mean she’s unhappy or mean. She simply can’t make the muscles work most of the time. She talks in hushed tones because it’s taken her voice. She moves slowly because her muscles can’t go faster. She falls. A lot. She may not recognize you. That means when you see her you remind her who you are. Me- she won’t forget. The rest of you- remind her. If she says she will do something, call me. She may not remember. (I may not either, but I don’t have an excuse). She won’t want to eat in front of most folks. That’s because she has trouble swallowing. If she seems sleepy, it may not be that you are boring. She sleeps a lot. If you come over and she doesn’t come downstairs, it’s because she can’t do it safely right at that moment. Feel free to socialize upstairs. You can even hold the rabbit. Petersnoot is lonely. If you go somewhere with her, please keep an eye on her. She went over sideways at a store tonight with no warning, and she can’t catch herself when she falls or leans. She is still very butch, however, so do not hover.
Here’s the other thing. Karma did not make Linda sick or Casper sick. My karma did not make them sick either. I have no important lessons to learn from this from a bad prior life. I promise. I am sure I was naughty in previous trips, but not enough to warrant this. I get the life isn’t fair thing, and I am all done with that one. I actually think some of you who are living without drama owe me a thank you, because I am absorbing your share of drama too. You are welcome. Please no more helpful noises that I should have been more careful. I was careful. I gave my heart to Linda, and she helped me pass it to Casper. I could not be more blessed to come home to her blue eyes, and what is left of her smile. I could not be luckier to know she worries when I work late and that she uses every bit of her energy to stay awake to make sure I am on my way home and in the door safely. I wake up with a hand to hold. A shaky one, but if I hold tightly enough it can make it still for a bit. This sudden and awful challenge was not caused as a cosmic payback. It’s just what happens in life. It’s not fair. And I am not sorry we took this chance together.
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