Tag Archives: Huntington’s Disease

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.

 

 

The slow fade

It doesn’t feel slow to me.

It feels like I’m being pulled in by the undertow over and over.

Miles out.

Into a dry ocean.

My thoughts are duller and they no longer fall over each other. There is starting to be space between them.

The level of oblivion I have towards daily life is something I have to try to sneak outside myself to measure. I have stopped cooking. I seldom use the car. I have stopped engaging with others unless I am directed to or am scheduled to. I know that there’s a lot of home improvement that I want to happen, but either it can’t happen soon enough or I don’t have faith it will happen at all.

The emotions I feel the most are impatience with myself for not being able to do anything right and regret when I hurt people.

The collection of memories and facts I’ve forgotten has outgrown its habitat. It needs an island of its own.

I sound like I’m drunk and people on the phone who don’t know me are put off by it.

And my brain is too thick with obstacles, too sick with HD, to be written about with any great insight by its owner.

What other people see is a slow fade.

But I can’t describe how fast I am becoming an empty vessel.

A remnant of myself, clinging to stay, bobs up every now and then.

Like a cork in a turbulent, empty ocean.

 

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.

Getting on with life

There has been a nagging feeling of things that need to be done, but exactly what those things are swirl around my mind and it is hard to capture them, so I am left with this constant undertone of confusion.

This morning, I was able to communicate some of them to my husband. In some cases, they are simple things, like “I need legal pads.” But when I have previously thought about buying legal pads that thought was also accompanied by the desire to not go back into Staples, where I have had an HD meltdown. So the legal pad need has been going unfulfilled as I write on the back of every lined piece of paper I find. There are some other things I needed that I could pull out of my head to tell husband.

One item is a small pad of paper and pens so I can write down the other things as they come back around!

I fell out of bed a few nights ago. I was sleeping like a rock and landed like a rock, too. It scared me, but I wasn’t hurt. I have been sleeping with a fortress of pillows around me or on the couch ever since. My husband is going to buy a baby gate to go on the side of the bed. I hope that will keep me from taking flight again. A friend of mine sleeps with his bed on the floor so when he falls off, he won’t have as far to fall. I think that is a pretty good solution, but like having the bed up, just because I am used to it and heaven forbid I try to change anything I am used to because I will stress over that.

I have discovered that being around people who I don’t know well is exhausting and I am very averse to it. Because I have an invisible disease, I wonder if and how many times I have met people. I wonder if I have told them about me, or if they already know. Yesterday, I dropped off some stuff at a neighborhood picnic and the difference in my level of comfort was so dramatic between the people that I knew well and those I knew by sight. It was a stark contrast. I was stressed out being around strangers in a setting where my reactions to their questions might make them uncomfortable.

In general, I am moving forward and am trying to do so positively. I have lost over 40 pounds (I am overweight) and each day I pretty much wake up cheerful. It just gets harder as the day goes on.

Sometimes, if something that is not routine occurs or something suddenly annoys me, I will take an extra mood stabilizer to prevent HD’s irritability from taking control. I had written “my irritability” but decided that I am not going to claim it. It is the disease that has installed the pressure cooker into my emotional center.

There is a woman who I wrote about in a blog about a year ago who introduced herself to me again and again until I finally started remembering her name. Her name is Vana, and she has become a beloved friend. She is headed off in the next few days to spend a year in St. Lucia to pursue some dreams and my happiness for her outweighs any sorrow so far because I am proud of her gumption and courage. I know it will hit me later.

Vana, I wish you the greatest adventure of your life, and thank you for becoming part of my family.

Thank God for the internet, right?

Closer to fine

After a few dicey days

or maybe they were weeks

or maybe it was the whole summer

I see a bit of light.

If I follow it, I think it could help me escape from where I’ve been trapped, an emotional cage that has felt like the hot, dark trunk of a stranger’s car.

I’m taking the extra, discretionary pill. I’m doing the exercise. I am following suggestions.

And even though I forgot to wash out the conditioner, I took a shower.

As recently as last night, it could have gone either way. But I am feeling some clarity that I’ve missed for a long time and I’m holding on to it. I am thankful today to be alive and to be able to have another pass at enjoying life.

So many people I know have lost one or more family members to HD recently and there are also some families that are winding up for that final unraveling.

To the Valvano family and the other families who are preparing either to memorialize their loved ones, or to bear down and stay with them through the end, I have thought about you and prayed for you often. I’ve remembered you, even while in the trunk. My thoughts have often been about you and the love that you feel for your loved ones and about the love the HD community itself emanates.

And somehow, wanting to stretch my arms across the miles to hold you has helped bring me closer to fine. 

https://youtu.be/HUgwM1Ky228

Me to HD: It’s not you, it’s me

I person I trust has told me that I have been manifesting depression and anxiety, not as part of my symptoms, but because of them.

It’s hard to wrap my mind around the fact that a departure from depression and anxiety will reveal that I am functioning better than I thought.

And that my brain is not melting.

I have to cut myself some slack and realize that living at, for example, 75% of my functioning capacity with a good attitude will yield a better me than freaking out over, say, 95%.

During the past week I have learned a little bit about what it takes to get me to do what it takes.

I’ve learned that I need to play a bigger role in my expectations for myself. I have made a schedule for myself consisting of the things I want to do every day that would make me happy.

I was as surprised as any one that I conjured up such a list. It’s a list of things that a happy person living a good, balanced life would do every day.

It is not my visual reminder.

It is not my promise to others.

It is not my tool for self flagellation.

It is something to work toward. I know that there are medicines that must be changed because I am still having difficulty, but I have to make the day to day success my responsibility.

Who else is going to be responsible for it?

If you didn’t listen to WeHaveAVoice’s  “All About CAG” radio show, I recommend it. It’s one of those recordings that I will be able to get a lot out of for years to come and I plan to listen to it under a variety of circumstances.

But what Dr. Lange said that spoke to me the most today was that the best thing I can do for myself, as a person with a CAG of 40,  is to lead a happy lifestyle and aspire to go to bed each night thinking that the preceding day was pretty good.

I am going to try this approach and while letting the HD do whatever it does.

Sort of like we’re taking a break.

 

 

What it feels like when things go wrong

I have been having severe psychiatric symptoms and have been asked to describe them, and am finding it to be difficult.

Yesterday I told my husband that it felt like the emotional equivalent in intensity and horror to the pain I would feel if one of my eyelids had been pulled around my head, down to my neck, leaving behind my skinned, painful head, unable to see anything.

I know that is not physically happening to me, but it’s the emotions and the pain that I suspect I would feel if that happened to me that I am trying to encircle with words.

It’s really important that I describe it in a way that make sense so the doctors will know what kind of drugs to give me. I guess whether I need to keep taking anti-psychotics or switch to mood stabilizers.

There are at least two parts of this emotional crisis:

One is this emotional pain described above. Another way to describe it would be to compare it to how I might emotionally feel if my fingernails were being pulled out slowly, one-by-one, only worse.

So this is constantly going on, and it manifests as my own screams and shrieks filling my head. I want to go through the house screaming and shrieking out loud, but I hide myself away from everyone else and it feels like my head is going to explode with the constant suppression of the screams of emotional pain.

The other part of this crisis is like a cloudy, smoky feeling of doom that washes in and swirls about while the first part is going on. It does not use words, but it communicates to me that I cannot handle much more of the first part, but warns that it may never stop. In fact, it could get worse and I could spend my life trapped in the first part with the second part swirling around. And that adds more panic and hopelessness.

Since I have been in crisis, these two parts have always been actively going on but I notice that it is quieter and easier to tolerate in the morning. It gets louder and more painful and harder to bear throughout the day until the evening when I run up to my bedroom, strap on the bipap (sleep apnea) machine and take deep, deliberate breaths until I fall asleep.

I hope that this description, along with a doctor’s visit, will result in some new meds and an end to this crisis.

 

 

Risky business

If you knew me in high school or college, no, I am not engaging in any of those antics! Instead,there is a disconnect in my brain that I’ve  been noticing, which can be best illustrated by the fact that I used my fingers instead of utensils to fry bacon in hot grease this morning.

The HOPES page on HD behavior symptoms shows in Figure W-2 the way the caudate relays information to the frontal lobes. Two women look in the mirror and think “My hair is long.” The one with the normal brain soon after thinks, “Get a haircut,” while the woman with the impaired brain thinks nothing about it.

I am the second woman.

This morning, to start things off, some of the plastic I had removed from the raw bacon had fallen into the heating pan and I reached for it and grabbed it out before the heat melted it. Then I just continued to use my fingers, because I they were already being used for that purpose, to arrange the raw bacon on the hot, grease-filled pan and to move it around. I used my fingers to rearrange and position the bacon until hot grease was splattering on my face. So I reached into the cabinet and pulled out one of those screens that you put over chicken when it fries. It was only after this point that the thought entered my mind that I needed to use a fork or some tongs to finish cooking the bacon.

Now, a few hours later, I have shiny fingertips where the fingerprints are less pronounced.

This disconnect plays itself out in different ways in my life. I will walk by a piece of trash and not think that I am supposed to pick it up. I will see my stringy hair and not think that  I need to wash it.

The odd thing is, I’ve realized that this is going on before, but because the part of my brain that realizes such things is not related to fixing the disconnected part of my brain, I continue to engage in the same risky behavior, or don’t do things that are apparent to others need to be done.

Just because I am aware that my behavior is inappropriate does not mean I can alter that behavior.

But maybe I’ll skip the bacon next time.

 

Flipping the HD switch

Yesterday started out like any other day, with the potential of being a day filled with hope, productivity and love. But for me, with HD, all it takes is for something to flip a switch, and everything is overtaken by the worst feelings of despair and foreboding.

The smallest negative thought yesterday morning flipped my switch, stole my day of promise, and rammed my will into what felt like a barbed, cramped metal container. I spent all day trying to break out, to outsmart, to out-wait the sinister captor.

No sleep came to provide respite. No arms were available with the exclusive purpose of holding me. The only voice that I could hear was my own, and the best advice I could give myself was to wait it out.

It would relent at some point if I just waited it out.

Towards the end of the seemingly endless day, I sat on the same couch where the switch had flipped twelve hours before.

This time I was medicated for the evening and was prepared to distract myself with television images until I was sedated enough to go to sleep. An end-of-a-bad day  game that had worked plenty of times before,  but failed this time.

Instead, I acted impulsively and inappropriately then lashed out at my family. I stomped upstairs and flung myself into bed. My husband was at my side shortly, and I acted out some more.

Then I felt so ashamed about everything. I had spent all day trying to fight my way out of the metal container, and was only then hanging my head out to draw in desperate breaths of the reality I had so longed for.

But in my quest for it, I had tainted it.

Today I am tired.

My brain is like a floor filled with mousetraps and I’m afraid to take a step.

Not my day to die

Yesterday I was thinking, as I often do, about how much better it would be for people who love me if I wasn’t around.

Sometimes just trying to function day to day with HD, I screw up things around me so badly that the only way I can see to make the pain and shame of it stop is to end my life.

But then my son texted me.

A troubled friend of his (who I will call Jake) had spent some time in a psychiatric hospital. Four days after being released, Jake was able to buy a shotgun. (Welcome to the U.S.) After an agonizing, nightlong search, Jake was found in a car– where he had killed himself.

Suddenly everything became real.

I set aside mentally minimizing  the impact my suicide would have on my children.

Thoughts of how Jake’s family and friends will be permanently scarred by his death edged out the rationale behind my plan.

I know that, despite the many roadblocks in his life,  Jake had a life ahead of him that had worth and now that is gone forever. So now I grieve for Jake who, through his own pain, may have bought me some time.

Because, even possessed by a monster, I am forced to admit that I am still worth something to someone.