My Everest…

 Waking everyday knowing you have a new identifier to add to your list and this one being really …i’m conflicted in saying shitty, horrifying, challenging as my physio likes to term things is hard to wrap your head around. You wake up everyday and just move on, see what the day brings!  As a woman with older kids I went into a kind of “nesting” phase similar to pregnant ladies ready to give birth. However mine was getting things in order for my family in the event of my declining health. We got our wills in order, power of attorney papers, we don’t have much so it’s a simple process. For me, it was making sure I had a good life insurance policy in place that didn’t discriminate because of my family history of HD and MS.  I learned about the genetic non-discrimination act that protects anyone with genetic diseases. It has been quite busy with just those things. Emotions are up and down constantly.  

When things were still really raw and in the processing stages with the HD info, my son came over for a bit and asked me to watch his dogs.  I sat in the kitchen with both of them, “Lazy” happily snoring away and I rubbing Mr D’s belly. I was overwhelmed with the memory of my neighbour’s dog running full speed into my backyard looking for my husband.  We were having a birthday party and normally it wouldn’t have been an issue with it but my dad was in the back in his wheelchair and our only concern was that she would knock him over or jump on him.  All of us ran to the back calling her name!  As she rounded the corner going top speed, I have never seen a dog put on the brakes as fast as she did!  She sensed that there was something different there and did a full stop and proceeded to walk up to my dad, and let him pet her and calmly moved on.  As I remembered that, the thought that this could be me had tears flowing out of me. I was sobbing and the always anxious Mr D just let it happen and let me lay beside him until I settled down.

The worst part of all of this was that I felt like I was stripped naked, unprotected, and extremely vulnerable.  Knowing that this huge, horrible, evil, ugly monster called HD was going to come at you full force and there was nothing out there to stop it.   No impenetrable shield, no magic spells, no iron man suit to protect you from it was very disheartening.  So what do you do?  I cried a lot!  Then when they dried out and your headache goes away I looked around as I was by myself at home.  In my mind I told myself, “it can’t be this way”!  I needed to tell people that I was gene positive and that HD was in my future.  

I started with my close friends. Once the shock and awe wore off, I then told them that I don’t want to be sitting in a nursing home alone with no visitors! I also told them that I didn’t want my family going through it alone. I knew that they wouldn’t do that, but I know my husband has a hard time asking for help from anyone!  So I was asking on behalf of him before it happens. I realized that I felt better, my burden was lighter and that every person I told helped me build up my vulnerability.  I realize this is going to be a very rough road but none of them have turned away.  I told them if you see something off don’t be afraid to tell me as I need to know!  I’m telling you not for your sympathy but so that you are aware that there are good and bad days ahead.  I need all of them to help me climb my Mount Everest and support my family when they need help when times are rough during that climb. 

I recently went to the dentist they were updating their patient records to digital. They pulled up my file and asked me if everything was up to date. A few things needed updating and my hygienist asks me if there was anything else on file they are missing and for a second I contemplated not telling them about my HD diagnosis.  But I did and she said it’s not in the system but she will get it there.  The appointment went on, I could tell that she was thinking about something and she finally asked me with hesitation what HD was.  I told her that the easiest way to explain it is to take Alzhiemers Disease, Parkinson’s Disease, and ALS (Lou Gehrig’s Disease) put them all in a box and smash them all together shake the box and open it that is HD because it is a mixture of all of them and you don’t know which one is going to present itself first. She was shocked that I was ok talking about it.  I told her I was too, no tears, just the facts.  Then she apologized that I was going through this.  I mean it is what it is at this point.  Hop on the bus and join the ride because with me at least it’s going to be interesting and challenging just like Mt Everest! After my visit to the dentist I felt really good that I disclosed that I had HD and I educated one person about it.  Maybe she talked about it to someone else?  It made me think that maybe this is something that I need to do. Maybe while I am able to walk and talk. I need to educate people about this disease because the more I talk about it the more I see people asking what it is?