I Look Like I’m 23, but I’m really 52

Often times when I talk about advancing into the later stages of Huntington’s Disease, people (for a reason I will never know) think that it is comforting to tell me that I might die by getting ran over a bus, or inheriting breast cancer, or tripping on a rock and cracking my head open. They tell me this to say, “Hey, you never know what the future might bring. You might die from something else before you even progress in the disease!”

Okay…what? Almost every person that I confide in tells me things like this. Let me be the first to say that it is not comforting at all. The fact is, I know that I have HD; I know that my brain is degenerating and that someday, it will destroy my mind and my body.

I may look like I’m 23, but in reality, I’m 52.

On a timeline, that is. My clock is ticking faster than yours, whether you want to believe it or not. I don’t have a potential long-life span. This is it. It’s inevitable. And I’m okay (for the most part).

What most people don’t understand or refuse to believe is that I am sick now. With a CAG of 43, I didn’t think that my symptoms would start showing until my 40’s, but after doing some research, I found that most people with a CAG of 43 begin to endure emotional problems within their 20’s.

This is where my depression, anxiety, paranoia, and mild OCD come in. It’s so hard to deal with it all, especially when people believe that it’s “all in my head.” I am speaking for all the other HD victims who are waging the same war. And it is, indeed, a blood-shedding battle that we fight every day, while everyone else goes about their routine business.

On the days that I cannot get out of bed and I have to keep the curtains shut, I am not being lazy. I am fighting the demons in my head that tell me that dying would be better than progressing, and let me tell you, I cannot imagine this mental degradation getting worse, but it has to.

When I don’t answer my phone calls or talk to my friends when they want to hang out, it is not because I’m being anti-social. It is because I have days when I’m afraid of crowds or going outside. I’m afraid of the sunlight because it reminds me of a happiness that is slipping further from my grip every day. I’m almost always afraid of something, but it’s just that word: something. I don’t know what it is or when it will hit. It comes and goes as it pleases, and it steals every ounce of will and inspiration that I cling so desperately to on the good days.

I know there are others who are going through the same thing, and I’m so thankful for the fellow victims who take my hand and suffer with me.

I just want to announce that this is a disease, not a choice. I can only control so much, and it kills me.

My brain is like a big jigsaw puzzle that loses more pieces as the clock keeps ticking. Sometimes, on rare occasions, I think that the puzzle might be complete, but the euphoria only lasts for so long, and then the pieces become lost again.

But I’m going to embrace it. The manic depression, anxiety, paranoia, bipolar disorder, and slight schizophrenia–they are all a part of me, and though they may appear as enemies, I like to call them my friends when they allow me to relate to others who are wading through similar waters.

So, I am going to call them my friends for as long as I have the will, and I plan on having the will for a long, long time. Maybe until my very last breath. Only time will tell.

14 Comment

  1. Amy says: Reply

    This Hits home.

    1. Thank you!

  2. The cure is arriving, Medication to rats and monkeys is curing them. Trials on humans are beginning. Don’t talk about dying, talk of the wonderful things you are going to do with your life………All these instrucdtions are confusing to me. I just wanted to tell the lovely lady that there is hope so she should start getting ready to live,love and be happy.

    1. Very true! 🙂

  3. JUST TELL THE LOVELY LADY, THAT A CURE IS ON THE WAY, SO START LIVING!

  4. Hey,

    It really sounds like you need to find a support network to talk about HD with, maybe HDYO would be a great option – http://en.hdyo.org/. I would question how long you have had your test results because it sounds like they were recent and sometimes it takes a while to come to terms with the uncertainty of the future.

    Cheers,
    Chelsie

    1. I already work with them! Great organization. Thank you!

  5. You nailed what so many of us have trouble articulating. Thank you for sharing!!! Love, luck and so much strength to you! xo

    1. Thank you so much! Xoxo

  6. Darla says: Reply

    Everything is so honest!
    My husband has HD and as we look back the symptoms started in his 20s when he would get so angry at nothing and everything!
    The diagnosis of bi polar and ptsd!
    It’s a hard labored journey the only thing different is this baby is not being birthed to live it’s being slowly aborted by disease.0

    1. I’m so sorry to hear about your husband! Yes, you are correct about our journey, but we have to find ways to stay strong. Much love.

  7. alicelee says: Reply

    I know how you are feeling since i have HD too. Both my brother and I inherited from my mom. Just like your friends, I have been telling my friends that no one can predict what will happen to him or her the next second. That’s how accidents happen and I will cherish every day with my love ones while I can. I need to write my letter to my daughter so that she will understand me. I am divorcing now. I know the feelings of wanting to give up your life. I do have such though sometimes and wonder why should continue to live when there are so much challenges and I get exhausted with life. But i am blessed indeed by God that I am blessed with even more. My family and my friends including my facebook friends whom I know for ten years. Recently, I manage to get in contact with my Godsisters and they are very good to me. They know the whole story of HD and JHD and the cag counts. One of them told me that they will always be there for me. As such, I am now thankful of each day. You are a HD warriro and you will never give up! xoxoxoxo

    1. I am so impressed by your positive outlook! You are an HD warrior too! XOXO

      1. alicelee says: Reply

        XOXO❤❤❤

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