When Negative Would Be Positive
I have an appointment tomorrow. It will end almost a year’s worth of uncertainty, doubt, fear and resentment.
If I test positive for the Huntington’s gene, then there’s a good chance that I’ll be dead within the next 20 years. During that time I can expect to slowly lose my mental stabilty and my social skills, gradually alienating those who are closest to me. Most people with Huntington’s have few or no friends, and repeatedly attempt to end their own lives.
The testing has been significant. I’ve been seen by consultants and counsellors, undergone psychometric analysis and had my blood taken. Now all that remains is for me to get the result - which has turned out to be the toughest part of it all.
I thought hard about whether to write this post, and if it was necessary to let the people reading my blog into this part of my private life. I decided that I should say something, because like it or not this thing has fundamentally altered who I am, affecting me in more ways than I would like to admit. In doing so it has changed what I write, and so how I blog.
One thing that I’ve learnt is that life can be fragile. You need to cease each day with both hands, and don’t let go until another one comes along.
- One Week To Go
- Another Year Older…
- Reboot Complete
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Paul, I can only imagine the pins and needles you must be sitting on as you wait for the outcome of these tests. I spent 15 years of my life working as a Registered Nurse with home hospice as my specialty (caring for terminally ill patients in their homes) - a handful of them were Huntington’s patients. I do know, and have experienced (as a caregiver) what you and your family face, depending on the outcome of your tests.
The hours leading up to finding out the results will probably be very long, and I don’t know what to say to you about it except to know that I’m thinking of you and your family and truly hope the results are in your favor. Chin up - stay strong and keep me updated.
Sending positive energy in your direction!
Paul, I can only imagine how hard the next hours will be for you. My thoughts & prayers are with you for a negative (positive) outcome.
My thoughts and prayers are with you.
Life is full of surprising and sometime unwelcoming challenges, as long as we move with ebbs and flows and not grounded, we should able to greet every morning sun with a smile. Writing this post to share something this private is so courageous. Even though I just came to know you, I already believe that you have a strong personality, character and will.
Also, sending well wishes and prayers right now …
Paul,
I love you no matter what, if the test is positive or negative you are still the man I fell in love with and married, I will love you forever, you are my soulmate, you are my everything.
I love you more than words can say
xxx
Paul,
You are one of my closest friends, and no matter what the outcome, I will stand by you and your family.
Time is the coin of your life. It is the only coin you have, and only you can determine how it will be spent. Be careful lest you let other people spend it for you. (Carl Sandburg 1878 - 1967)
Thanks for sharing this, Paul. We do care.
All the best mate!
I don’t think there’s much left to say. As I told you weeks ago, I will pray for you - but it’s not my belief that God is a magician, who reacts on summoning.
But now that you decided to let your community know your fate so far, you have to take us all the way - and we will be there for you!
All the best for your test results, I hope all goes well.