I went to my first Huntington Society chapter meeting and found that it was totally opposite than was expected. In my family’s mind…there would be people there with HD symptoms visibly present and the conversation might be one that would drag a person down. Instead if you didn’t know what we were meeting for, you would think that it was a bunch of ‘normal’ people having a meeting. Normal has a wide definition. I came back from the meeting feeling hopeful with information overload which for me then turned into a migraine, but that’s ok. I met some new like-minded people with similar concerns and issues as myself. That over time these new friends will more than likely become a support system for myself and maybe my family in the future as well. One thing I did learn is not everyone in the group has HD, but everyone in the group has been affected by some aspect of HD which has motivated them to come and help others with their support and stories.
So we met up with our friends at a dinner party. They had a bit of time to process that I had HD and I felt things were different. Things were a bit lighter. We all know that we can tell each other anything and it is just like having a free group therapy session. But it’s with people who know a lot of your history. Everyone had time to process the HD bomb I had dropped and figured out that shit got real, and it got real….really fast! Maybe even too fast. Hugs were tighter and lingering and we left with promises of trying to get together more often and doing more things together. Maybe even starting to do girls nights again!
Everyone that I have told has been very supportive. I started meeting with friends and family more often for coffee just to get out of the house and to talk. To touch base with them and distract myself from my pain, from my thoughts. It’s a good thing because it can get really bad up there sometimes! The battle between good and evil is constant, you never know when it’s going to crop up. Happens quite randomly you can be thinking of something pleasant and then out of the blue unpleasant dark thoughts invade it trying to change it into something bad. Tears threaten to come to the surface. You have a choice, as someone once told me. You can let the ugliness come up, and you can let them circle the drain. You can let it pull you down into the looming black hole or you can choose to stomp out the ugly and move on with the good. So far good is winning and I hope to keep it that way!
So today is my dad’s birthday. The emotional roller coaster has arrived in full force but I am trying to focus on the people in our families that don’t have HD. My husband knew when he married me that my dad was sick as he was showing signs of some of his illnesses. Back then we didn’t know as much as we do now about HD and now more informed than he possibly ever wanted to be he is still here! His running shoes are still by the door and the question is why? Why are they still at the damn door? When he knows what kind of life he will potentially be tying himself down to? Same thing with my brother’s wife. She knew exactly what she was signing up for because she walked into his life when my dad was wheelchair bound, in a nursing home needing to be fed thickened beverages. The thickened beverages were the worst part for me. I could feed my dad everything but for some reason when it came to the thickened juice, wine or whatever it just made things that much more real for me. My sister in law was a champ with that. I think she just pictured him as a baby and went for it. I never asked her how she did it. Nor do I intend to, and I really don’t want to see her on the other end of a spoon feeding me thickened coffee. I think it will make me go down into the dark drain then. Needless to mention my mom who lived through all of the HD horrors. She doesn’t want anyone to go through what she did. Then, my kids and their significant others were told of the possibilities of them having HD beforehand and for some reason they are hanging around for the ride. In my mind these people are champs because they know of the possibility of the Huntington horrors that await them, some have seen them and they still choose to stay. My ever faithful team with their gear at the ready waiting to assist with the climb.
Photo Credits (Featured Photo): myEverest
My Everest... 
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