Tag Archives: family

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.

The Autumn Fall

I’m OK, but had a doozy of a fall today.

Not only was it a humdinger, but it was my public debut.

Ironically, it happened while I was shopping for and homing in on some sensible shoes.

I only wear level, flat, gripping, narrow shoes that don’t suggest in their design that they are going to take over the walking process or rub against each other. For the past two years, I have worn nothing but Skecher Go Walks, because they fit the bill.

But today I was on my way to visit my mother who has HD and is temporarily in a nursing facility. Nervous about the visit, I decided to first check out the shoes at the local department store.

And right off the bat I had a possible SCORE with the form factor, plus the shoes were black, soft leather, meaning that I could aspire to be dressy.

I looked around for my husband and son, but they were nowhere in sight.

I had to immediately try on the shoes, I felt, because I was already fixated on them.

So holding my purse in one hand and my cellphone in the other hand, I slid out of my Skechers and into the leather shoes, and in doing so I begin to lose my balance. I swayed back and forth, grabbing with my elbows the shoe rack for size 7 shoes for support in front of me and the shoe rack for size 8 shoes to keep me upright.

Meanwhile, and time would bear out how unwise this decision was, I stuffed my feet into the leather candidates and started to take a full stride, hands still full.

Unbeknownst to me, the pair of shoes was held together by a thick rubber band. This decreased my expected range of motion by 90% and I started going down.

It was a slow fall, as I tried to brace myself against the shelving, while holding onto my possessions while not hitting my head. After hitting the floor, I assumed a crawling pose on the store floor, but I still didn’t realize that the shoes were connected and continued to try to walk with them, which only made me bang my arms and legs and back on shelves and floor and probably myself.

I thought the mishap would never stop unfolding and when my body stopped moving enough, I lay there on the floor for a minute, taking inventory of my body parts and of my possessions. I was afraid that I would be quickly expelled from the store as a suspected drunk, but I was both pleased and alarmed that the many shoppers who were in view of the event just went right on shopping.

After a while, Randy and Mark reappeared and I told them what happened. They held my belongings and watched as I safely tried on the shoes. By this time the elastic had broken off and I didn’t pitch forward.

The shoes hugged me and felt like butter. I bought them and the checkout person remarked that the theft device bubble had been removed from the shoes as well, but they had not been stained. I felt a little stained.

I went to the nursing facility and watched my mother sleep. She looks like a doll when she sleeps. I tried halfheartedly to awaken her, but my body was starting to feel sore and I didn’t want to wake her up just to say goodbye.

I limped and staggered outside to the car and it was windy.

It didn’t feel like fall anymore.

It felt like winter.