When I first started writing this blog last year I thought it would be easy to keep up to date with. I didn’t think it would take up too much time to put a few words together and post them online. It’s now been six months since I have sat down and even tried to put pen to paper (or fingers to keyboard). I read a quote once that said “Life is like toilet paper-the closer you get to the end the faster it goes”. Never a truer word has been spoken in my opinion. The last six months have passed in a bit of a blur. A blur that has nothing much to do with Huntington’s Disease.
If there’s one thing I have come to realise (or at least been reminded of) over the last six months it’s that you never know what life is going to throw at you. As cliché as it is, sometimes you just have to make lemonade out of lemons. But…
.… Sometimes life just hands you the lemonade!
“Such fun!”
Keeping busy with study and relationships definitely helps keep my mind off HD – yet it’s still always something that crouches in the corner of my mind ready to pounce on any insecurity or doubt or joy it feels like devouring. So many times this past six months I have changed my mind about wanting to find out if I have the gene for Huntington’s disease. Sometimes I’d change my mind several times within the same day. Once you find out you can never go back to not knowing, you can’t change your mind and take it back.
If I knew I was going to be negative of course I would want to know- all that doubt, fear, pain and anxiety would be gone…what a sense of relief and peace you could have.
I don’t know if I can have that peace in not knowing!
But if my result was positive for the HD gene then I wouldn’t want to know. I am scared that this knowledge would take away my hope and without hope I don’t know ….
It’s such a balancing act: To know or not to know- that is the question! Should I be doing a pros and cons list? Argh!!!
Looking back on these last few sentences, I’ve written some form of the word “knowledge” nine times. I don’t know who said it, but they were right- Knowledge is Power. I just don’t think I am ready to have that kind of power yet.
Earlier this year I decided that I would definitely find out before getting married. I believed that the other person had the right to know, (deep down I knew I didn’t want to know) because then they could make a decision about whether or not they wanted to be with me if they knew I was going to get the disease someday. It was never about what I actually wanted, although because others kept telling me I needed to decide what was best for me, I tried to give it selfish reasons. I tried to claim it really was for my peace of mind (knowing that my future husband loved me unconditionally and to quell the fear that they would run away if they found out) and maybe to begin with that was kind of true…but I think I’ve discovered something new about unconditional love that I didn’t know before. You never know what lemons life is going to throw at you…and HD is a pretty big lemon. Unconditional means not being afraid of the unknown. Yep, it is scary if you know the future is going to be horrible, but I think it takes a different kind of courage and love to face an unknown future. There’s something about that that gives me hope…hope for a future no matter what it looks like.
Does love like that exist in today’s world?
Yes. Well I think I’ve found it anyway…
“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.”
― J.R.R. Tolkien, The Lord of the Rings
If there’s one thing I have come to realise (or at least been reminded of) over the last six months it’s that you never know what life is going to throw at you. As cliché as it is, sometimes you just have to make lemonade out of lemons. But…
.… Sometimes life just hands you the lemonade!
“Such fun!”
Keeping busy with study and relationships definitely helps keep my mind off HD – yet it’s still always something that crouches in the corner of my mind ready to pounce on any insecurity or doubt or joy it feels like devouring. So many times this past six months I have changed my mind about wanting to find out if I have the gene for Huntington’s disease. Sometimes I’d change my mind several times within the same day. Once you find out you can never go back to not knowing, you can’t change your mind and take it back.
If I knew I was going to be negative of course I would want to know- all that doubt, fear, pain and anxiety would be gone…what a sense of relief and peace you could have.
I don’t know if I can have that peace in not knowing!
But if my result was positive for the HD gene then I wouldn’t want to know. I am scared that this knowledge would take away my hope and without hope I don’t know ….
It’s such a balancing act: To know or not to know- that is the question! Should I be doing a pros and cons list? Argh!!!
Looking back on these last few sentences, I’ve written some form of the word “knowledge” nine times. I don’t know who said it, but they were right- Knowledge is Power. I just don’t think I am ready to have that kind of power yet.
Earlier this year I decided that I would definitely find out before getting married. I believed that the other person had the right to know, (deep down I knew I didn’t want to know) because then they could make a decision about whether or not they wanted to be with me if they knew I was going to get the disease someday. It was never about what I actually wanted, although because others kept telling me I needed to decide what was best for me, I tried to give it selfish reasons. I tried to claim it really was for my peace of mind (knowing that my future husband loved me unconditionally and to quell the fear that they would run away if they found out) and maybe to begin with that was kind of true…but I think I’ve discovered something new about unconditional love that I didn’t know before. You never know what lemons life is going to throw at you…and HD is a pretty big lemon. Unconditional means not being afraid of the unknown. Yep, it is scary if you know the future is going to be horrible, but I think it takes a different kind of courage and love to face an unknown future. There’s something about that that gives me hope…hope for a future no matter what it looks like.
Does love like that exist in today’s world?
Yes. Well I think I’ve found it anyway…
“It's a dangerous business, Frodo, going out your door. You step onto the road, and if you don't keep your feet, there's no knowing where you might be swept off to.”
― J.R.R. Tolkien, The Lord of the Rings