Grieving

Aside

I am learning about grieving.

I have had big losses before, but I wasn’t in a place to learn from them. I was too young, or too “not in the moment,” or too “masking my feelings with unhealthy coping skills.”

Today I was able to get some things done. Little things, but things I needed to do. I also got my son and I out of the house for a while. Which we both needed.

It occurred to me as I was sitting in Karate class with my thoughts that part of death is the living people moving forward. Moving on. And it has a lot to teach the living if they let it. Some days moving forward is simply putting one foot in front of the other. Literally moving on.

One day I will be ready to jump back into our real life. One day I will have to. I am thankful that it is our summer break and we didn’t have to come back to ALL of the things we do during the school year. It might have broken me.

For now I am thankful for putting one foot in front of the other. For moving forward little by little. That’s what I could manage today. And that’s ok.

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Dear Alzheimer’s Disease:

Dear Alzheimer’s Disease:

My mother was diagnosed with you a little over 3 years ago. We think. She didn’t actually tell us for a while. See, she wanted us to treat her the same and see her as she always had been. I had noticed a few weird occurrences, but chalked it up to stress. She had had what the doctors thought was MS, but perhaps was not at all.

She actually had early onset alzheimer’s and was only 56 when she was diagnosed. Can you imagine? Loosing yourself at such a young age?

My first thought was, selfishly, what will I do without my mom? If I have to face cancer again I can’t do it without my mom. She was there for me through every surgery, every treatment, every big appointment. My first thought was to my safety and well being.

You took her independence. She had a very high functioning job. One that she did very well and loved. One that helped her to thrive and help others who needed it. You took that from her very early into the disease. She simply couldn’t keep up with the meetings, the emails, the needs of all of her employees, students, parents, administrators. She had to take early retirement and at her retirement party she was devastated.

You took her peace of mind. From the day she told us I noticed her researching. She researched constantly, how to slow the mental decline, what doctors to see, what actually helped and what didn’t… She was constantly on her BlackBerry or her laptop, looking up articles, journals, forums, etc. She read books and she told us to read books. She sent us to alzheimer’s facilities to “see how bad they were”. She told us how she didn’t want to end up in a nursing home “with people having to clean her”. As you progressed her anxiety about that grew stronger until it was the thing she thought about the most.

You took time with her family. She became anxious in groups, to the point that she didn’t want us kids to visit. The noise and activity, especially with the grandkids around, was too much. She would have seizures the doctors thought were brought on by stress and end up in the hospital almost every time one of us was to come up for a while. She couldn’t leave the house sometimes and my dad had to go to functions and family dinners, etc alone. Several vacations she wanted to take were cancelled because the simple thought of an airport or hotel or crowds would put her into a panic. She wanted a few last fun times with her family and she couldn’t have them.

You took her memories. She made a video for us all – about 6 months ago – telling us a few stories about herself, talking about us as a family, talking to the grandkids. It was during this video that I saw some real decline. When we were around she could hide it. She could change the subject or maybe we just didn’t bring up “memories” – she could say she didn’t feel well and go lay down. Sure, I noticed when she had trouble remembering her address or birthdate at a doctor’s appointment, but I was only around for those things once in a while and most families know that memory is a funny thing – it can be wiped clean from one area but not another. On this video she said several things wrong – things about our childhood, and perhaps even her time with our dad – that were not quite right. The wrong son was mentioned in a story, the wrong event in a time line…. You know what? She cherished those memories, and you just pulled them out of her head like a string out of a sweater. Like they didn’t even matter.

Most importantly, you took her happiness. The last 2 years of her life she was very unhappy most of the time. She had severe depression that nothing seemed to help. She could not get over the imminent ending she felt pressing down on her. You took every good thing from her and made it bad in her head. In her journal she wrote the last week of her life about not trusting her children and husband. About feeling like we didn’t trust her. She wrote about the sadness she had and the anger she felt. She wrote about the desolation and alone-ness.  You took every ounce of happiness she had and you crushed it.

And I hate you for it. I hate you like I have never hated anything or anyone else in my life. I hate you so much I can’t even put it into words. I want to hurt you and to stomp you and to crush you. But guess what? You even take that. You are not a physical being we can rail against or take to the justice system to be tried for torture. You even take the ability to fight you away.

Finally, you took her life. My beautiful mother; my strong, lovely, vibrant, sassy, wonderful mother; she took her own life a little over two weeks ago. It was her second attempt and this time it worked. I knew she would do it, she had warned us all she would not let you take her down all the way. I just wanted a little more time with her. A couple weeks later my son and I were to come visit her. He missed out on that last visit with his grammie because she couldn’t hold on a couple more weeks. You took my son’s grammie – someone who had helped raise him and had been an anchor in his stormy life. You took her from us.

You are cruel. You are heartless. You don’t deserve to exist. I have no words for the pain you inflict and the hurt you cause. I don’t even know how to start to describe it. So I will end with this:

“I have decided to stick with love. Hate is too great a burden to bear.” – Martin Luther King, Jr

I hate you, Alzheimer’s disease. But I can not wallow in this hate too long. I can not let it take my happiness and peace of mind like it took my mothers. I will focus on the love I have for my family and my friends. I will remember my mother as she was before she was tortured by you, and I will remind my son of her.

Love is the answer. Always.

I just need to hold on to that thought.

 

Just show up.

Some days are hard.

I have been waking early and in pain a lot lately. I am trying to figure out what all this pain is, but have yet to pin point it. Going to several specialists in the next week or two. This morning I woke up at 5 and I was hurting from my head to my fingers on the right side, and both legs. I try to meditate when I wake up early like that, but I often have a restless body and brain.

I don’t like to write posts like this. I want to be funny and fun and smiling and bright. I hate to admit I am those things much less than I want to be. Much less, even, then I try to be. I hate to admit I hurt all the time. I hate to admit that I complain about my little ailments when there are plenty of people out there who would be happy to have mine instead of theirs.

I decided to write this post today because life isn’t about always feeling good. Or always being happy. Life hurts. Life hurts not just physically, but in other ways too. It hurts everyone and some times it hurts a lot. Sometimes life is about just showing up. Just getting out of bed and doing what you have to do. Or just waking up and doing what you have to do – if you can’t get out of bed. I know there are people out there who can’t.

It took me a long time to learn this lesson.

I had it easy in school. I got easy A’s and skipped school a lot. Told my parents I was sick and lay in bed reading. When I went to college I didn’t know how to do “show up every day, study every day” type of work. When I quit college and tried to move into the real world, I couldn’t hold down a job. I called in sick all the time. When my depression was bad, when I hadn’t been able to sleep, if I was feeling badly… which was all the time. I called in sick. And I lost job after job. Some of them I really liked.

Eventually, and with help from a friend, I figured it out. I figured out that sometimes you have to live hour to hour. You can do anything for an hour if you have to. So you get up and you go to work and you work for an hour. By that time it’s silly to go home, so you finish your shift.

All you really have to do is show up.

Some days that’s all you CAN do. So you do it, and day by day you get through it.

My son seems to have this same default setting – and I am trying to break that. Just this morning (after he got up) he told me he couldn’t go to camp because he hadn’t slept well because I won’t sleep with him at night anymore. I told him the fun things he was going to do and that it’s one of his last days, so he needs to go and have fun with his friends. He dragged himself (literally, dragging himself across the floor with his arms) through getting ready and we went. When we got there the kids were outside and when they saw him they all yelled his name and were jumping up and down to play. He smiled a huge smile and when we got in ran to play. Sometimes if I just get him to show up, it all turns out great.

Don’t get me wrong. We have wonderful days thrown in there too. We have terrific and lovely days where even if I do hurt, we have fun and we see lovely things, or just spend lovely time together.

But… some days are hard. And I just show up. And that’s ok too.

 

 

 

*Edit – AND sometimes “just show up” backfires too. Like when your mom makes you go to camp when you say you are too tired and the camp calls her 20 minutes later to say you have been puking everywhere. Poor little guy. I SWEAR he didn’t say he was sick, or even look bad when I took him. By the time I picked him up he was green.

Broken

There is a beautiful ancient Japanese method of repairing broken porcelain. It is called “kintsugi.”

The legend is: “A Japanese shogun broke his favorite Chinese tea bowl, and sent it back to the same artisans who made it for repair. The bowl came back properly repaired with glue and metal staples. The shogun could not believe his eyes: ugly staples connecting delicate pieces of porcelain – surely that was not the right way to do it. In response Japanese artisans invented kintsugi: a technique of repairing broken pottery with special gold-containing lacquer resin. Pieces repaired in that way became even more beautiful and valuable than when they were whole.” Apparently the stories say that rich people in Japan would purposely break their favorite tea bowl in order to get it repaired using this technique. Many museums now have these beautiful pieces of art.

Image

I feel broken a lot. My body is broken in a lot of ways, and I feel broken inside some days too. Not to the point that I did as a young adult – unable to function at times – but still, broken, sometimes worthless, sometimes unhappy with how my life has turned out.

I try not to complain about my circumstances. I know many people who have it worse off than I, and I know there are many more out there who suffer in ways I can’t imagine. I try to remind myself of this a lot. I actually have a very good life and lots of love and kindness in it.

So, on the days I feel especially broken, I look at some of the pictures of these lovely bowls – you can google “kintsugi” and find dozens of pictures – and I feel better. Sometimes being broken doesn’t mean the end of things. It can mean the beginning of new things. IF you are willing to let yourself be stronger and more beautiful with your broken pieces.