The Good Times and sex

It’s easy when things are good to “forget” about Huntingtons.  It probably helps that I’d like to avoid thinking about this as much as possible.  It also helps that the symptoms vary in intensity day to day.  So some days it’s inescapable that Harry is getting worse and others he seems perfectly normal.   

If I could remain in the denial space forever—I totally would, but unfortunately/(fortunately?) I can’t authentically exist in denial.  Once your eyes are opened to the reality of your situation, you can’t stick your head in the sand because even in the stand all the thoughts you hope to avoid are crashing around your skull—and pretty much continue until you are forced to act.

I get why people try so many methods in life to escape their troubles.  I wish that there were pills I could take to abate the sadness, but life just doesn’t work that way.

I’ve felt distance between my husband and me this month.  We had a great anniversary trip in May and made love almost everyday (well once we left NYC—we were too exhausted to do much but pass out when we went to bed.) I’d say we have sex at least once a week.  But we haven’t in almost a month.  I’m not sure if he just has a lot on his mind.  Usually I am the one who initiates and I’ll I’ve wanted to do since the HD conference is get further away emotionally because it hurts so much.  I don’t love my husband less or am any less attracted to him but I want to protect myself, my heart, and spirit, even though its too late.

I know it’s too late.  And is it really fair to either us to hold back the depth of emotion that we have for each other, when our time is limited?  There’s a part of me that wants to love Harry with wild abandon and endless love, not only because I truly feel that way about him but because our time together is limited.  Yet, there’s the other part that wants to protect myself, because as his health declines I will need to be on top of EVERYTHING—my own life goals (my degree, my dreams, and interests) and his care and costs for everything, while handling household bills, cleaning, maintenance, and repair—and the emotional fallout from his continuous decline for the both of us.

I’m afraid that if I pour all my love into him and he dies that I won’t have much left for anyone especially myself.  When he’s gone, will I survive that?  I don’t necessarily mean suicide but more, will I be able to recover emotionally? Will I be able to be myself? 

Or will I just be this husk of a person?

Taking inspiration where I can find it

Today is better.  I'm glad my mother is here.  We had some seriously awful fights when I was growing up, but we've managed to become friends in my adulthood and I'm so grateful for that.  We will always have our disagreements--because we're too similar in some ways and too different in others, but we both try to listen--that's the difference.

Anyhoo, I was reading some other caregiver blogs/article and I found one that struck a chord.  She writes about caring for her husband and managing the storm of emotions that entails:

"But sometimes, a fog of black resentment fills my room and I cannot breathe. It usually comes when I least expect it. It comes when a neighbor, whose most serious and risky challenge in life is which dress to wear to which party, calls to ask that I keep her pool plants over the winter in my greenhouse. I listen to her nonsensical blabbering about the cost to keep the pool pretty and I tell myself that I will not shout out my resentment at her request. I will not tell her about the challenges of a caregiver or that there is no time in my schedule of responsibilities to water her plants. Can’t she see that? I will not tell her that I must tell Tony that it is no longer safe for him to negotiate the stairs to his television room. I will not explain to her that it must be done in a way which will not strip away his independence and self worth. I will not tell her of the little battles that I fight nor of the multi-faceted totality of my being, the anger, the pride, the frustration, the admiration, that is who I am today.

And I ask myself would I trade places with the shallow woman who becomes horrified at an uneven summer tan. I think not. And I let it go."

And also this part:

"Helen Keller, who had great reason for self pity said, “Self pity is our worst enemy and if we yield to it, we can never do anything wise in this world.” She was not content to be frozen in a soundless world of darkness and self pity. Neither am I. Like Keller, there will be days when I want to sit down and quit, days when the road is too rocky, days when the enormity of the task is too much for me, days when I would be content to add my self pity to the pity of others observing my plight. I will tell myself that I must drag myself to my feet and go on as best I can without self pity.

Self pity cannot exist without self doubt. Our negative emotions are not harmful to others, only to ourselves. We must let go. I will remember Nelson Mandela who described how he forgave, without self pity, those who had imprisoned him for 27 years, “I had to let it go. They took the best years of my life…they destroyed my marriage. They abused me physically and mentally. They could take everything except my heart and mind. Those things I would have to give away and I decided not to give them away.”

It's a good read and it really resonated with me --in some of the fears I have and the anger about the selfishness of other people.  Sometimes I just want to scream "My husband is dying and you come to me with this petty bullshit!"

But I can't blame them because they don't know.  So many of the people at my job (at least in upper level management are so cutthroat.  I'm like "You work for a bus company, not the UN! Get OVER yourself, you paper pushing arrogant bastards."  That's obviously my internal monologue otherwise I would have been fired years ago.   I don't feel particularly compelled to tell anyone.  There are a few people there I trust who know, but I've never put my personal business out there for all to see---I'm not going to start doing that now.

My family and friends that I consider family already know and have been so supportive.  I feel so lucky to have them.  I really do.  I was speaking with my stepmom today and she said something that made me stop and think.  So far I have been handling this far worse than my husband--who is actually afflicted with the disease, probably because he's had more time to process and accept it (most of his adult life-he's 39).  But my step mom pointed out how close and supportive Harry's family is and will continue to be, she said you should be thankful that he was raised in and surrounded by love.  

And that's so true, when I think of the sheer number of people out there who don't have anyone or they may have a ton of money but no one who truly cares for them---it makes me feel better that my husband has people to rally around him.  He has a ton of friends and family who love him.  At least he's led a good life up to this point.

I try to be grateful for the small positive things, because the big negative one is so omnipresent in our lives that it's easy to lose sight of the good.  And there is good here.  He's in the early stages and still able to get around.  The cognitive stuff is rearing its ugly head, but he's still himself.  And By God I'm grateful for just a little more time before it all goes to crap.

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I found a blog that looked interesting, unfortunately the last time the author posted was in 2007, 5 YEARS ago.  I'm starting to get this eerie feeling as I check out links to other huntingtons blogs.  A lot of the posts were years ago and simply stop abruptly or the website host has sold the site.  It's starting to make me feel skin crawly, are these people dead? Have they abandoned hope? Or can they simply no longer function enough to maintain it.

The search continues...


I feel better today, it's probably a combination of talking with my mother, my pastor, and the anti-depressants.  I feel more present today. I told my mother yesterday that I wanted to have hope but I just couldn't, at least not yesterday.  I told her maybe tomorrow.

And oddly enough, I do feel better and maybe not hopeful, but not as hopeless---and I will take it!  It beats crying all the time and unleashing my vulnerability for all to see.

My mother says we should be using this time to enjoy each other and that I should live in the moment.  But how can I live in the moment, when every time my husband shows a symptom of HD I'm reminded of our limited future together.  Also, we have to prepare legal and financial stuff while he's well, you can't live solely in the moment while planning for the future--those are opposites.

Decisions about the future need to be made and this is the year, before he turns 40 in Sept.
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 In other news, why have at least three people made mention of me leaving my husband?  It's totally random and completely different perspectives.  HD sucks and going through this disease with my husband is one of the most agonizing things I've ever had to experience.  That said I know in my heart that if the tables were turned, he'd care for me in a second.  The idea that I could go off and live some happy, carefree life while my husband dies alone is appalling.  I'm sure once it gets really bad I probably will wish for a long vacation, but if I left I'd just be worried about him.

I've been having a hard time emotionally and people see me falling apart and make the tentative suggestion that I may not be strong enough to handle this.  And what's up with that--if one more person tells me "What doesn't kill you, makes you stronger."  I'm going to seriously go postal.  This ain't a Kelly Clarkson song. This is my life.

And what message does that send anyway?  If you can withstand the horror of the experience you can get through anything--but not if the experience leaves you fractured.  I'm pretty sure I'm never going to be the same after this experience.  I just don't know what will be left.

Ditching my husband at the beginning of his illness would be horrible, selfish, and callous and at the end of the day I have to be able to look at myself in the mirror everyday--and I just wouldn't be able to.


Harry is a great guy and I'm devastated by this disease, but I still absolutely believe it's worth it. I guess I really am better today--this almost sounds hopeful :)

Fight?

I keep hearing the phrase "Fight HD!"  but it feels less like a fight and more like an asskicking. Do I curl up in ball to protect vital organs, while being kicked? Or try to protect my kidney and spine?"

It doesn't feel like a fight, just a clobbering.

(((SIGH)))

At the conference

I wrote this while at the HD conference:

I really want to have hope, I just can't see how.

I hear about meds that after an exposure for 3 years may/can slow down acceleration by 9 months.  I heard about clinical trials for meds that improve system functions in mice and insects but not on humans.

I feel like there's a lot of "Oh well" type attitudes at this conference (in the presenters, not the participants).  I don't think that this attitude is completely wrong, but it feels so casual--when nothing about this disease or its effect on those affected and their family members is anything but.

On whether to have kids:

I'm hearing a lot of "Just Go for It" or  "Maybe there will be a cure in 40 years."  Meanwhile we haven't cured the common cold, cancer, or even the flu. 

Look, no one knows what the future holds, but it feels irresponsible to to be all: "Well maybe it won't happen" (ignoring the evidence to the contrary) and if it does we'll deal"  That's great for the parents who want the kid, but not so great for the kids's life circumstances. 

Yet, by the same token if Harry's parents had decided not to have him--he wouldn't be here and that thought breaks my heart.

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It was a difficult weekend full of depressing news and multiple windows into the future for both Harry and myself.  We saw people at all different stages of the disease.  While it was scary for me it must have been terrifying for Harry--to see these potential futures.  So after the first day which was Friday, we went back to the room and I told him as he sat there reading a book on the hotel bed.

"Put. the book. Down. We are in Vegas and today has got to be one of the shittiest days ever. But we are in Vegas--I think we can both agree that life is short--so I say we PARTY!  Like it's our job, dammit."  I broke out the vodka and pulled up the beer menu from the bar downstairs that claimed to have the most beers on tap in the world--not sure I buy that  but my husband loves craft beers. So we hit the bar which also served great food and got drunk.  Then we gambled a little--very little neither of us are gamblers.  Drank some more and hit the resort's dance club.  We had fun.  Heaven knows we needed it.

Post Conference, Post Hope for a cure

I just got back from the Annual Conference on Huntington's in Vegas this past weekend.  When ever people ask me how the conference was I say things like,  "It was informative." or "We got a lot of really god information."

But what I really mean is that we got a lot of information on how much research and medication ISN'T out there.  We found that HD is so rare that there really aren't a lot of sources of research.  I heard that the limited research we have now is leaps and bounds more than there was 30 years ago.  Meds are in clinical testing trials and results should be completed in 15-25 years.  All I think is "Great, my husband will either already be dead or his symptoms would have progressed too far to be reversed."

Granted that is good news if you have kids affected by HD.  I am truly glad for the people this may help--because while it doesn't seem particularly helpful to us---I can't imagine watching this happen to your children, its bad enough watching your spouse suffer through it. 

So Harry is probably going to die. I hate even typing that, but it looks like that's where we're at realistically.  My heart is broken over the fact. I so wished we would have more time of him being healthy, but it's not to be. 

I was so upset after this conference, I couldn't return to work for two days.  I have to grieve for this hope that has been so completely shattered.  I also had to get my meds adjusted because as much as I'd like to crawl under my bed and sleep for the next 6 months or so---Our healthcare is from my job as the only person employed--I can't our insurance depends on me getting it together.  As caregiver I don't have the luxury of falling apart. 

When I spoke to my doctor she said something that resonated, she said sometimes you feel like your in jail, when dealing with a disease especially like this.

He's declining in front of me and neither of us can do anything but endure this and plan the best we can for the future.

Treading water with my legs bound

With everthing rapidly piling up, I'm starting to feel like I'm slowly being buried. After finding the courage to inform my husband on my observations of his behavior he always says that he is sorry and that he agrees with the statements I've made about his behavior---that lasts about 24 hours and when he does it again and I point it out to him--he says that I don't know what I'm talking about or he doesn't agree. It's draining and frustrating. It's yet another reason I'm scared to have kids. How am I going to find the reserves of patience and calm to raise a kid? How am I going to keep said kid safe, when I'm not at home? H can't keep the dog safe let alone a kid. I think that I should give my dog away-not because I don't love and adore her, but because she's one more burden and responsibility. There are no future plans to ditch her but something has to give and I don't want it to be my sanity.

It is so overwhelming. I have goals that I am attempting to accomplish that I don't even have the energy for. A job that is constantly imploding with some crisis or personal vendetta. I feel so unable to center myself and maintain any semblance of inner peace or solace. How am I going to care for my husband, compassionately and kindly? I feel stressed and frustrated and am prone to be snappish in ways that I haven't before. How do I stop this? I am on antidepressents and they help. But it's not a magic pill.

There are so many things to plan for medically, financially, and mentally. Its just so sad. And I'm so sad that I wish I could get away from or bypass it some how. But I have people who love and care about me and I've seen what kind of devestation suicide leaves in its wake. My parents would be devestated and so would some of my friends--I know because I would be. I want to be here to see how the lives of people I love turn out. I care for them and they for me but its so PAINFUL. Watching someone you love die so slowly. The specialist says that huntington's is a 20 year disease from onset. I can't imagine dealing with this for twenty years, when this is year one and it feels intolerable.

I keep finding myself looking at vacation brochures--because I want to get away from all this. The problem is that if I'm not leaving for good I would have to come back eventually and the problem would still be here. It's just a pause in my problems not a delete.

In therapy my counselor urged my to live in the moment--but when the moment is so painful--how do you just live in it?

HOW?

The Go-Round without the Merry...

I am Elle and I live in Illinois and I considered myself to be easy going and fairly upbeat.  While I would never be mistaken for being bubbly or perky, I don't consider myself to be negative. Friends would probably describe me as a good listener, funny, and compassionate--at least I hope they would.   My husband Harry suffers from Huntingtons Disease. Huntingtons is in the same family of neurological disorders as Parkinsons and shares a few symptoms, such as the shaking. It is a 20 year long degenerative disease with a predicted onset of 40 years old.  He will be 40 in September 2012 of this year. 

We have been married approximately one year and I can see the changes in him between last year and now.  He is getting incrementally worse. I love him fiercely but I don't know how I'm going to juggle everything and keep sane and calm.  I am working on my masters degree and currently work for the city in which I live.  He was a writer but got laid off over 3 years ago and hasn't been able to find steady employment.  He is smart, sensitive, ever laid back, kind, and sweet. We recently celebrated our first anniversary. 
Being newly weds is particularly difficult because any future plans or hopes seem so far away when dealing with the uncertainty of an illness.  I've been on the fence about children for as long as I can remember, but to have the realization that kids may be out of the picture of our future makes me sad.  But as his condition worsens I fear for our potential children's physical safety, emotional and mental happiness.

The worst is the round and round of my thoughts.  There's so many decisions to make and most of them are big questions.  Do I even want kids?  Maybe I will cherish my freedom at 54 to make decisions for only myself. But by the time my husband passes away I will be unable to bear children-without great risk to us both.  I also did not want to raise my kid alone.  I watched my mom do it and it looks exhausting.  I've seen married couples who are worn out completely, the idea of doing it by myself quite frankly terrifies me.  I know that I could, but do I want to? And even if I did is that fair to the kid, to never know his/her father?  Growing up without a Dad SUCKED, and I only got a taste of it because we met  when I was 13 and were able to form a relationship.  But I remember making Fathers Day cards for my grandfather, an alcoholic who barely spoke to me or acknowledged my presence.  Girls especially need a father figure because fathers teach girls what to expect from men. Girls generally will search for someone to fill the void and seek approval with men. While not all girls do this, as a fat girl with low self-esteem, who developed early and was propositioned by quite a few dirty old men--sometimes you just want to know that you are loved and cared about regardless where it comes from.  I never took any of these men up on their propositions, but if my self esteem had been low enough, my mother wasn't so strict, and I never met my father--I might have sought out one of them to fill that father shaped hole in my life--which could have been life-ruining.

But enough shoulda, woulda, couldas---Kids are just one issue.

I can usually remove emotion or hold off long enough to rationally think my way out of problems or situations, but with my husbands illness---I simply can't.  Whenever I have to tell someone about the illness I begin to cry.  I may cry at movies, but I am not a crier. Not typically.  It bothers me that I don't have the control over my emotions that I used to. 

I think it's the powerlessness of it all.  Your lives are at the mercy of this disease. I am trying to cope well, but there are so many losses over time.  Harry won't be able to walk or speak and will have to be fed by tube. He will become irritable and potentially verbally and physically abusive--though there are meds available to mellow him out. He will become confused and his mental functioning will be damaged. 

I think I have a grip on my sadness until there is a development (more information about his status, further deterioration of his condition, what other families have gone through, etc.) and then my depression flares up something fierce.

Hello

I am starting this journal because I can't help but wonder if others feel the same way I do about life, love, politics, spirituality. This blog is about opening up as an intensely private person in a way I feel comfortable.  Though I have trouble sharing myself, I do believe that if you bottle everything--it slowly poisons you from the inside out, whether its pain, shame, anger, or sorrow. This open journal is my attempt to save myself from that fate. Don't know if it will work, but here we go.