The main thing I am afraid of is being trapped inside my own head, my own body. Already I am a slave to my thoughts caught inside a whirlwind of anxiety and emotion. I could not imagine what it would be like to get HD and realize that I am losing control of myself, my control, and my life. Life is short and sweet, but what if your morality now was held right in front of your face waiting to spit you in the eye. Now everything I do hangs in the balance of time, whether or not I have enough to complete all I wish to do. It's easy to say to oneself that if this was their situation they would live life to the fullest and sieze every moment. But how could you really know how you would react until the plan is set infront of you. When I heard the news about my father my whole life shattered. You see your life through a reflection in your mind, I saw my parents being grandparents and living down the street. I saw my father and best friend spoiling my children far beyond the reaches of anything he has done before. I saw him living to be a little old man, retiring somewhere with a golf club in one hand and a beer in the other. Someone came and threw a brick through my subconsicious and shattered all of my expectations and dreams. Now when I look into the future I see nothing but terror, fear, and unhappiness. I see my father, the best man I now, unable to care for himself, unable to golf, unable to function. The man who was the rock of my childhood and the backbone of our family, sentenced to die a slow, degrading death. When you get past the idea that this is happening, you realize with sudden terror and revulsion that this could happen to your body too. There is no way to cure it, no way to run from it, and no way to change this sudden blast of destiny. Suddenly everything you see for your life slows down, you think of your children, the person you could marry, friends and family, all watching you die from this disease. You feel utterly alone, for who could understand the true feeling of being chased down by your morality and a death that no one deserves dying. So I stand paralyzed, afraid to know, afraid of living in doubt, wanting more than anything to turn back time when this wasn't even a possibilty. I am dying to know the answers screaming to just know one way or the other if I have this disease. How do I come to a decison so earth shattering it will change my life? I know that I couldn't marry someone without letting them know whether or not I have it. I would never want to hold them back or ruin anyone's dreams because I am going to die slowly and need more care than most people. I fear loving at all, I fear having kids, I fear tomorrow. Things I onced revelved in I now run from. It is so hard to vocalize these feelings when they are flying through your head a million miles a minute. The people you want to understand only get a fleeting blast of the feeling, one that is jumbled and confusing, leaving the person who is listening to me feeling uneasy. How can you make someone understand when they don't have a black cloud calling to them queitly in the distance. I am 23, HD can start showing signs as early as 30, if I have it I will slowly start to lose myself and lose my ability to be me. I am so angry at the world for giving me this burden to bare, but I am happy it's on my shoulders because I would never wish this on someone else. I have ten cousins, out of the ten of us, how many are going to be given this cross to bare, this life so short? Here I am, in my head, trying to let the thoughts go only for new ones to arrive. If anything, I hope it allows someone to understand where I am coming from.. a place of fear, a place of uncertainty, and a place of desperation. A place where no one can save me.

Welcome to the forum.
There are many here who have been where you are. It is shocking to discover the HD gene is in your family, however, the shock and all of the feelings and thoughts will eventually come together.
Fears of the unknown are especially hard to deal with, but you will. Take some time to come to grips with what you have just learned. There are many reasons to stay hopeful, read some posts on this forum and you will find people living well with HD. There are some promising new therapies being developed. Staying active helps discharge some of the energy and anxiety you are feeling.
Is there a Center of Excellence near you?

Take care, I'm sending you hugs. {{{fhcutie}}}

Carla

I am very close to your situation, and it is SO great to read your post. It's exactly how I feel. I'm 24, engaged and afraid to get married not knowing whether I have it or not, but at the same time....this time in my life is a time i'm supposed to ENJOY. I'm torn. The thoughts in my head don't ever stop, they never got away. I do my best to talk myself into having better days, I hope over time it'll become easier. I've found a quote I've been living off of on a daily basis since finding out "let your dreams guide you, not your fears" I find some peace in it, but at the same time I get mad at that quote because I feel like my dreams have already been shattered.

Stay positive, lean on the people in this forum as much as you can--they are full of great knowledge.

PM if you'd like.

i feel this way sometimes too.

somehow, the only thing that makes me feel better is to know that what you describe is essentially the human condition, HD or no HD. Looking around a crowded street, you begin to realize, everyone ages, everyone has pain, and everyone has losses. not that this diminishes the suffering in HD, but it made me realize that there is a universality of it that made me feel less alone.

in some ways, those of us at risk or pHD have to confront these realities alot sooner than others, but take heart- i believe that we value the good times more than most.

take care, and remember that your life is not over, it has barely begun.

fhcutie546,

Thank you for taking the time to express yourself; it is healing. Reading your post was like I was reading my own terrors. I accepted my mortality many years ago. My baby boy died when I was 22 yrs old. I haven't feared death since. But then HD came into my life. And this disease is more than about death. It's about be a prisoner inside your own mind. Having your brain play tricks on you. Not simple forgetfullness; but interpretation, sanity, emotions, relationships, resentment, paranoia etc... All of these leave scars on every individual in the family. I have scars from the effects of HD decades before we even knew about HD. There is power in knowing the cause. I always thought I would end up "losing my mind" just like certain other family members (since I was 5, really: we didn't learn it was HD until I was 26...)

This discovery explained many things in my family history (an uncanny string of suicides, mental illness, abuse...) This disease put my worst fears in my face. I never thought I would ever come to terms with it. One thing I've learned is that everyone takes their own path in coming to terms with HD and I don't think it's ever over. Just like my son's death, I healed but there are still days I want to tear my heart out. HD is similar, but it's in your face everyday (living it new over, and over again). In that way it is much more tragic: I know my son is at peace and there is joy in that. But when I see my family in ruins, torn apart: I want to scream. Then we have a wonderful moment and it makes it worth while.

Remember, this generation is lucky. Our family members, years ago: many didn't know what was causing the "issues," some hid it, some denied it,etc... and because there wasn't any hope. We have it. We are so close to a cure, treatment... We know certain lifestyle changes help, we have people to reach out to anytime of day (internet is amazing), We have so much that can help that has NEVER been here before! I ended up being HD neg. but I wasn't able to test until I learned how to love life (my situation). HD is still apart of me. I pray for a cure every night: for my sister, my dad, my brother, my neices, and every other family out there. It is scary to watch my sister become a shell of who she used to be, but then I live with hope that a cure/treatment will come in time for her! I imagine the talks we will have and seeing her be her full self again! Fully expressive and alive! That will be the day! And it will happen!

You are a powerful writer! Keep it up, get all those emotions and real feelings out! You do have people who understand you! Use your pain/passion to give you the fuel to do whatever it is that drives you; art, writing, advocate....

Most people on this board disagree with me, but my family's mantra has always been whatever happens, happens. Just live your life and if HD devestates you, well, so be it.

I don't live quite that free, because many of them fall into the "tomorow trap," planning for a future that may not come while forgetting about today (something people of all walks of like do, really.) I took out the LTC and life insurance which will help should my fate be bad and I take my Blueberry and fish oil suppliments but other than that, I do my best to focus on what I do have, not what I might have.

You're able to articulate so well how truly horrible HD is! I'm so sorry you're going through this. My son is 19 (soon to be 20), and although he doesn't talk much about his at-risk status, I know he feels just as you do. He doesn't want to be tested right now, because he's afraid he'd 'give up on life' if he knew (his words) . . . so he just lives each day to the fullest and tries to be as positive as possible. Your post really touched me in a very deep way. I wish you some peace and happiness and HOPE, there is a chance you don't have HD and even if you do, there is so much more hope for your generation than in the previous generations, so I say live your life, have no regrets, take chances and love all those closest to you!

I apreciate hearing what you are feeling. I am in love with a wonderful man with HD. Some days he just seems to be crazy - talking about planes he has flown and trips he has taken and having been in the military. We have only been together for 3 years but I believe a lot of what he says he has done is just some sick mind trip this disease is pulling. I try to be there for him and help him enjoy life. I am a single mom with 4 kids (20, 18, 15 and 13) - he is divorced also and has 2 kids (18 and 17). I really just want him to be happy and enjoy the things he likes to do as long as he can do them. His family has pretty much turned their backs on him - they cannot handle the "lies" and "angry times". I just listen and support him. There is no point in really arguing the facts. Some days I just want to cry it is so overwhelming. It is not fair that anyone be forced to go thru this and I will never let him go thru it alone. I am rambling now. Time to go.

fhcutie546 i want to thank you for posting your feelings . i have 2 daughters 14 and 21 neither really talk about HD but i have more of an undnerstanding how they feel thanks to you. you do write very well. my husband has hd hes 47 and diagnosed when he was 39 but i saw symptoms when he was prob 35 which means most of my childsrens life my husband had hd and his symptoms are hard hes verbally abusive always yelling and has no relation with his daughters we all live in the same house tho.ok what i wated to say he lived everyday thinking he was going to be positive and ruin his wholel life he never got to enjoy me lol a great person lol or his 2 daughters hd ruin his life and ourbefore he was even diagnosed..of course you will think about it everyday but think about how you can destroy the disese first what can you do to stay healthy for you rself . read marshas articles on the homepage i think it is and their very positive on a cure or slowing down the progression of hd sorry i went on and on but your post really helped me a very worried mom your in my prayers

Thanks for sharing this...words can be very powerful and you've captured your feelings very well. I have felt many of the same feelings and thought about the same things you've mentioned (I'm married to a pHD). I wish I had an easy answer for a way to give you some comfort. I remember the person who told my husband his positive results said something like, "We all are going to die from something." That really helped my husband, but for me it didn't help with the fears of how he will change. But it is true that HD is different for everyone and that there have been many advancements in research. I think it's great you are taking time to express your deepest fears/concerns, but also remember to take time to find the joys in life. Keep writing.



Edited 1 time(s). Last edit at 08/18/2012 08:14AM by eve.