Tag Archives: relationships

Mean living

I get angry then I get mean. It tastes bitter and I try to keep it in but I can’t. Then it’s too late and I’ve ruined something.

A reputation, a conversation, a relationship, an evening. A family.

The thing that made me angry and then mean is gone, but I am left alone with my meanness.

Nobody wants to be around someone who is mean, not even me. But I can’t get away from myself.

I am lonely and I want to be around other people but I am afraid of what I will do to them. If this time will be the time that I go too far. That I break a heart or burn a bridge too completely.

Being mean is the part I have feared the most. They told me that lots of people with HD aren’t mean. They told me that just because my mother was mean doesn’t doom me to meanness. They told me that my true, kind nature would be exaggerated.

They were wrong. And now I’m mad at them too because I bought into their wishful thinking.

Every time it happens, it is harder to bounce back. Every time it happens, I feel less of myself left.

I think back to when I was twenty-something and I laughed and jumped from rooftop to rooftop with my friends in our platform shoes.

That girl can’t ever come back, and I miss her.

 

 

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Stamina, or lack thereof

Mornings are when I function the best. I work better. I am more likely to leave the house. I am usually in a good mood.

Things have a tendency to change after lunch. At first I thought it was because of the heavy meals I was eating, but then I stopped eating heavy meals and was still pooped after lunch.

Then comes the question: To nap or not to nap? Usually I nap, but sometimes I don’t. Either way, by four o’clock I am spent for the day. Ready to take some prescription to head off the inevitable irritability. My brain is tired and my body doesn’t want to move.

And then everyone comes home.

That’s no way to spend a life, I think. I am spent before I get to be with the people I want most to be with.

And what have I left them with? No dinner. No clean house. No accomplishments to show them.

Only a tired, cranky shell who wants as little stimulation as she can get.

That’s no way to be a mom or a wife.

If only they could go to work and school while I’m sleeping at night, like real world elves.

They could come home and find me at my best, and, because they are elves, they would never be tired or need to sleep.

And we could frolic the way we used to.

It will be just like that split second years ago.

The joyous, resonant moment that I still base my “normal” on.

 

 

Reconciling a life and a disease

The days are tumbling on top of each other following the death of my mother who had HD. I never was able to visit her as much as she wanted me to. Even when I visited her every day she would barely let me out the door. Even when she was yelling at me, she didn’t want me to go. She wanted the connection. I moved away, my own HD progressed and I became less capable of making the 90 minute drive.

Then she started calling me, literally hundreds of times a day. She would sit for hours and hit the redial button and when I would answer, she would ask me when I was coming to visit. When my support system got wind of this, they insisted that I block her calls so I could try to get something done during the day and not have my heart broken every time I heard the despair in her voice and felt the specter of what could befall me. I told her I was having trouble with my phone. She sent me a few letters begging me to help her, but I confirmed that she was safe and being well taken care of. The letters stopped and I visited as often as I could.

At a certain point, long before her final days, she had decided that she wanted to consume me. I don’t know if it was the same dynamic as the time I was drowning and as people kept trying to save me, I climbed up their bodies, plunging them further down into the water. But for years I have felt her sickness manifested in a need for something from me that I could neither identify or satisfy.

Until she died, I carried an enormous weight of guilt because I thought that I wasn’t there enough for her. That I couldn’t see her or help her. That I had failed the one who had failed me the most, and by doing so, I had blown both of our chances for redemption.

Now even though she is gone, I still have a sense of her being. The memory of her unforgettable presence lingers and, more and more, I remember snapshots in my life from the times long ago when she showed me love.

But the oppressive guilt has lifted. I am realizing that I did the best I could based on my own condition, and that is more satisfying knowing that she is released from her diseased body and mind and no longer desperate.

Now it is my turn to live out my days and, while I have plans, I have adjustments to make to improve my health. I am formulating safeguards to protect my kids from what I went through. I am already having conversations with them about blocking me if I perseverate on the phone calls. And I am conveying my unconditional love to them the best that I can.

But I mete it out in small doses, because they are teenagers and I do not want to freak them out.

HD, grief, and The Gilmore Girls

(No spoilers) I started watching The Gilmore Girls on Netflix about a week before my mother died. I didn’t know it then, but I was setting myself up for some good grief therapy. At the center of the show is a relationship between a mother and daughter. It’s a superb relationship. The kind I dreamed of having. Since my mother died, I have watched about half of the original series.

In the first days after her memorial, it was all I could do.

Now I am starting to work my part-time job again and participate in life, and my consumption of the show is something I look forward to fitting in each day.

It seems like watching the perfect mother-daughter relationship would sting, because that is not what I had. Instead, it shows me how abnormal my situation was and I realize how much of it was because of my mother’s illness. And the happiness that I generate for the characters lingers and I feel happier all around.

The big lesson that is forming concerns what I want to do going forward. I want the people I love to know that I love them, so I am making it a point to tell them more often. It’s not eloquent like Lorelei Gilmore, because I don’t have my own writers. But it is not perfunctory either, because I mean it.

I also want to participate in the world around me. That means fighting inertia when it good for me and going out with my family. It means showing Randy and Mark New York City. It means travelling as much as I can and visiting people I love. It means enjoying every moment with Randy and making plans together.

Every now and then, it will hit me that my mother is dead. I will forget and remember again. I will remember the younger, healthier version of her. “My mama is dead,” I will say to Randy and sometimes some tears will come out.

Then I will remember how her brother who had HD writhed for years in a nursing home bed, unless he was strapped down or given paralytic drugs.

Because my mother was the stubbornest person I’ve ever known, I had every idea that she would share the same fate as her brother. But I am glad she did not spend her last years that way. She was only in a nursing home for a few months and was alert most of the time. But one day, she refused to engage in physical therapy and within weeks she succumbed to what we thought was a minor respiratory infection. I like to think she made some decision to let go…

Because of the way my mother died, suddenly the process of dying doesn’t seem so daunting and scary.

And because of The Gilmore Girls, the process of living suddenly holds the promise for fun, adventure and love.

So I am putting away the fears of dying and getting on with the living.

When the mundane intersects with the sublime

When I was a young, active alcoholic it was my obsession, whether I was drunk or not, to interpret the ordinary as the profound. This was an easy intellectual exercise for a drunk, and doing so made me the creator of endless epiphanies that, despite my frequent dissemination of them in the bars to anyone within earshot, were significant only to me.

A lot of my material came from advice I got from my dad (I adored him) when we drank scotch together. I hung on the words he uttered as if they were his last. Perhaps parts of what he said might have been profound. He was an intelligent, thoughtful man. But the things I fixated on were quite ordinary. A lot of the things he told me became my mantras during my drinking years. I went to him because I was having  a great deal of trouble letting go of some emotional event and he said, quite seriously:

“Erase it from your mind.”

Ironically, whatever I shared with him that inspired him to say those words is collected in that ever-expanding universe that contains everything that I forget.

The alcoholic me latched on to the magical qualities in what he said. From now on, this was how I dealt with disappointments and kept traumatic events repressed. This, with a chaser, was how I ignored the possibility of HD being a part of me. But then I stumbled into sobriety.

When I got sober more than twenty years ago, I had to deal with some of the things that I had repressed. Life was very hard in early sobriety until I accepted that it was OK for my ideas to be ordinary and that they were, in fact, ordinary thoughts to begin with. I learned to avoid magical thinking.

For the past six years, I have known that I have HD.  When I am in a place of gratitude, I elevate the ordinariness of being able to function in any capacity to a higher level that, intellectually, I value more than I used to.

I can hold down a job.

I can maintain relationships.

I can swallow food.

I don’t wet the bed every night.

Enlightened by HD, I view these activities as far more than mundane.

And the sublime?

I listened to Itzhak Perlman play the “Theme from Schindler’s List” the other day and I believe that my spirit will be transfixed in this elevated place until I forget that I heard it. Could having HD can make such enormous beauty more impossible not to succumb to?

Anyway, my dad ended up having a stroke that decimated his short term memory. We were forced to have the same, simple conversation every five minutes for what I thought was too many years.  What I didn’t know was that kidney failure would finally claim my father and the toxicity of that disease makes people say strange things.

I stood at the foot of his death bed four years ago this fall. I was still struggling with my diagnosis and I was losing my dad. Some of the final words he said were directed at me.  He said:

“Be sad or be glad.”

Given our history, and given my history, how could I not make this my mantra? It is a simple choice that I remind myself I have when I sense that HD is overshadowing everything.

And I will always regard his words as quite profound.

The sting

It starts out innocently enough.

I am usually congratulating myself for following a routine.

Feeling success in my own complacence.

Building a wall that separates who I think I am from the damage that I cause.

Then I do the exact thing that causes disaster, as if I had been planning it for months.

I do something I had promised mere hours ago to never do again.

I am listening.

I am really trying to listen.

I really thought I heard it.

But in truth, it takes an ice pick to chip away my wall, so I can hear and register what is being said to me.

 

Then I am exposed and the truth stings like the hard flick of a wet towel on a baby’s cheek:

The person I love the most is choosing to have his life destroyed by me. That is not only his conscious choice for the future, but that is what I am doing to him now.

I can’t stand to be inside myself and I tell him to leave me, to let the world scoop me up and put me elsewhere. For him to start over and be happy.

But (thank God) he won’t. He stays and I feel guilty that I am happy that he chooses to continue to suffer. I wish that HD could impact only me and realize that most of the time I am under the misapprehension that it does. Only occasionally does my wall of denial crack sufficiently to let in the truth. The disease will suck me back to oblivion before too long. The lack of awareness that is part of HD will return and I won’t realize what I am doing to the love of my life. To the most important relationship I’ve ever had. And it won’t sting anymore because I won’t remember.

But I’ll keep hurting him, just the same.