HD awareness month: why nobody cares

I no longer know what to say.

I have said it, shared it, linked to it, begged for it to be read and shared, and wept bitterly when it was ignored.

All of it was ignored.

Less relevant than yesterday’s lunch specials. 

My soul deflates when I am in this valley. The place I come to mourn the world’s inability or refusal to acknowledge Huntington’s disease. People see that I am here again, but they step politely over me, because everyone else has.

I saw a video today of a starving, traumatized, feral dog who was running down a war-torn road, hoping against reason to sneak into an oncoming Jeep. The dog had strained and ruined those lower, adorable vocal registers that would have instinctively caused humans to love it. 

Instead, its voice was so repellent that it scared itself and everyone else. The dog was both horrified and horrifying. And so unlike a dog. The opposite of a dog. 

The situation in the video seemed so unfamiliar until it didn’t. It became my oversharing, misunderstood pleas to strangers to validate my existence by lifting the HD battle flag. The familiar smell of their revulsion. The bittersweet scent of escape trails to happy places. Another sideshow by the unbearable but unavoidable me:

The antidog.

But let’s say your wife won’t leave home without noise-canceling earplugs. Or maybe you have spent the perfect amount of time curating interviews that show the gifts we get from HD.

Enjoy it.

Work it until it stops working.

Until you, like me, hit the cold, inexorable truth that underlies it all: invisibility is inescapable.

There’s just no way of knowing whether people see your world at all, much less in the nuanced way that you crave.

But invisibility is powerless without its buddy alienation. 

To cast off alienation, simply let yourself wonder how many other invisible folks are out there.

Packs of antidogs leashed together by a diagnosis. We can take comfort in each other, whether we’re stepping off on the good foot (you) or wallowing in surliness (me).

***Note: This post was originally pitched to HuffPost Personal, where it was overlooked especially for the occasion of HD Awareness month.

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.

 

 

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.

Greetings from oblivion

Bad people are doing mean things in the world.

I sense it only as a faint tugging at my heart.

A feeling of homesickness for a place that never existed.

I hurt like I have been pulled by an angry ocean wave.

I am dazed as if I’m riding a two-day hangover.

I want to see my friends.

I can’t talk to any of them.

I want to be alone.

There is none of me left.

So, even alone, I’m left with no one.

If a fleck of me flickers by, I’ll grab it.

And try to mold it into my game face before it dissipates.

Until then I will pile sleep upon itself.

Folding away the danger of being understood.

The elephant in the room is me: Fat with HD

I gained a lot of weight with my first two pregnancies and I made the effort to return to my previous size after each one. But I was 39 when I had my third child, and this time it was different. I felt too tired to do anything about it. All of my attempts to change my lifestyle failed and, as the pre-testing problems of just living life day-to-day ensued, I used food as an escape, a comfort, a drug and a weapon.

When I found out I was HD positive, I had a lot of negative reactions and eating and inactivity were among them.

I spent years wondering if I was punishing myself with food, or if what I was doing was giving myself one last hurrah every night because who knew if that tomorrow would be the day I descended further into hell. Now I realize it doesn’t matter why. What matters is what I do next.

For a long time I avoided being photographed, but realized that an important part of shouldering HD, for me, is the obligation to leave behind ways for my kids to remember me when I was a participant in their world. Being fat does not disqualify me from leaving behind a record, so I have pictures of my (fat) self all over the place. When I look at them I am stunned.

My kick-ass therapist got really basic with me a not long ago about my weight. Intervention basic.

She knows that doctors don’t mind if HD patients start out a little heavy, but I was stuck on a seemingly unstoppable conveyor belt of gaining weight. I couldn’t wear the fat clothes I had bought to replace the fat clothes I had bought to replace my real clothes.

She told me she was sure that I didn’t want to be someone who could not get out of bed due to excess weight.

I immediately thought of myself as the mother in the film, “What’s Eating Gilbert Grape?” and suddenly the fact that I ate ice cream every day was not a joking matter.

That was about a month ago and I am making some changes. I have found an alternative way of eating that binds me to a routine, which has been very helpful. I have one Facebook friend who lost a lot of weight and, while we’ve never met face-to-face, she has been inspirational by sharing her journey and through offering unconditional encouragement.

So far I have lost about 12 pounds! That is about the size of 2 toy poodles, and I still need to lose a German Shepherd dog’s worth of weight.

My cholesterol and triglycerides had been sky high even with a high dose of statins, but now they are low normal, so my doctor has cut that dosage in half!

Activity has been harder, so I have lowered my initial goals for myself to engaging in exercise at least twice a week and actually walking my toy poodle around when he must relieve himself instead of standing on the porch holding the leash.

I realized that, even though the fat might have protected me and helped me hide, I don’t need it anymore. I have been fat all of Mark’s life. That’s eleven years that I didn’t chase him around and Randy had to take up the slack.

This isn’t the last time I’ll write about my weight loss journey.

I am sure I will do a lot of naval gazing, especially when I can see my naval again.

 

Knowing my enemy

I waste a lot of time wishing that I didn’t know I had HD.

As soon as I learned I was positive, I wished I hadn’t heard.

During the months that followed, when I decided whether I was going to stay in bed forever or attempt to live, I wished I didn’t know.

And even now, years later, after it feels like I’ve crawled on my hands and knees over shards of glass to attain some semblance of an ordinary life, I hate knowing the truth.

Why? Because ever since I found out, I have not NOT thought about it.

Before I found out, I guess I must have had a background hum of thoughts that assured me of who I was. Something that provided a backbone for the meat of living. I remember when I was a little girl, going through a period of recognizing me and realizing that I was me and that I was a separate entity from any other entity and how cool that was. And later, beneath the tapes that developed through life’s trials and errors, I had that base note. That bass note. That assurance that I was me. It was comforting in that it was intransigent. Unchangeable.

Forever and ever. AMEN.

But then this new reality overtook me, all the way down to my frame.

It replaced the small still voice.

The one so subtle that it lies underneath my inner monologue.

That part of me was killed by knowing my enemy.

Now, because I did not grow up with it, the truth leaves me chronically uncomfortable. Like always having to wear shoes that don’t fit. It sounds shrill and impatient in my head.

Meditation does not stifle it. Prayer doesn’t drown it. Screaming only makes it louder.

Because knowing is now a part of me.

There is nothing I can do about it except accept that I will not live a second without being reminded by myself of the person that I really am.

There’s a lot to be said for denial.

 

Happy anniversary, Randy!

Dear Randy,

Today marks our 11th anniversary and I could never be happier than I am now.

We just shared the observation that pretty much everything has changed since we’ve been together.  We had a child together, found our dream town and home, and learned that I have Huntington’s disease.

I don’t know how you stuck with me during the years before we knew why I wasn’t doing things that obviously needed to be done. When I was paralyzed by apathy and confusion. But I thank God that you did.

When my genetic test results came back positive for HD, you stuck with me while I grieved much longer than we all thought possible. While I was sucked in by darkness. While I still wasn’t able to do the things that obviously needed to be done. When I was still paralyzed by apathy and confusion, compounded by depression. But I thank God that you did.

You’ve been by my side at every opportunity I’ve taken to help myself. And as a result, I’ve grown in ways I never knew I could. And so has our marriage.

Together we take the good that each day offers. On bad days, we use the tools we’ve been taught to get through them.

I look at the years to come and intend to cheat HD from taking away the happiness we share now. I know that if I fight HD, you’ll be there, fighting with me.

And I thank God that you will.

I love you so,

Sarah