I have read a small bit of the threads of conversation that are woven on this page, and I feel very blessed to have stumbled onto it at all.
Katie I read your outreach and you are truly wonderful, I wanted to address you specifically, but I just feel the need to hear from as many people as possible on this.
It's funny. I just read the post on God, and I am sure that all of you Christians are wondering if Agape is my given name. Yes, it is. For those of you who don't know, Agape is a greek word that means unconditional, or Godly love. All of my life I have tried to live in a way that reflects my name. I am not an overly religious person, as a matter of fact, I don't ever go to church, and I usually get really ticked off if people impose their beliefs on me, but I found myself, last night, knelt beside my bed praying fervently to God to help me understand what he just laid on my plate.
Let me tell you all the story of my life.
I am a 24 year old college student. I have lived a blissfully ignorant life up until this Saturday, February 17. A day that i will remember with astonishing clarity until the day that I die. I have always been a hypochondriac. Every sniffle, every headache, every bruise, every EVERYTHING was some indication that I was going to die. You see, I love life more than anything else in this world. I think that I am probably one of the few people (and I am being very presumptuous here) that remembers to look up at the colors of the trees. Remembers to breathe deep and take notice of all the little miraculous things around me. I just love life more than I could put into words.
My sister came home this weekend from visiting our estranged father. I was 2 when my parents divorced and my birth father has chosen to be a father only when it was convienant to him. I don't know how much to blame him though. He came from a very poor, very uneducated family. In fact he was the first, and only person in his family to graduate from high school. So it was no surprise that when his father was diagnosed with HD at death, that he didn't see any cause to investigate it further. To tell you the truth, I don't even think he had an inkling then of what HD was, and I can sure tell you that he is completely ignorant of it now. My father is 51 years old. My sister came back from visiting him and told me about his behavior. Crying all the time, inappropriate affect, forgetting things.....you see, I am one semester shy of my bachelors in nursing. Having already completed my psychiatric rotations, I started to think of the possibilities of things that could be causing him to behave this way. I briefly thought of Huntington's, but I said to myself, 'Agape, if there was HD in the family, your mom or someone would have told you.' I ran a few things by my sister and she said, "Well, now that you mention it, he did say that his father had some sort of psychiatric illness, but I don't remember the name, it was long though." I looked at her and could already feel my stomach tying into a million knots. I said, "Was it Huntington's Disease?" She looked at me and said "Yeah, that's it." I became frantic, panicked, I said, "Are you SURE?". "Yes," was all she said. I flew from the room to my mothers room and asked her whether HD was a sex linked or autosomal trait. In my minds fury I couldn't think of anything. She sat up and said, "It is a Mendellian trait."
My life fell to pieces in that moment. I ran to my room, gathered all of my nursing books that would give me clues to this disease and ran back to my mothers. I looked in my medical dictionary and started screaming, "if he's got it, that means there is a 50% chance that I've got it. Oh my God! I've got Hungtington's Disease!" (and I do overreact sometimes, but that was all I could think of. That I MUST have it.). I was unable to function really. I was trying to gather myself and compose myself, but this news made me physically ill. Everything was rushing through my mind all at once. I came up to my mother and said, "Oh my God Mom, I could have Huntingtons!," the tears were streaming down my face and I was shaking beyond control. She looked at me very sadly and said "I know," and she started to cry. I looked at her and said "YOU'VE KNOWN????? YOU'VE KNOWN MY WHOLE LIFE AND NEVER TOLD ME????" She started crying even harder and said "Yes, because I know how you are, and how you would react, and I wanted you to be able to live a life free from the knowledge for as long as possible, and there was just never a good time to tell you."
So, in addition to the horror of finding this all out, I felt utterly betrayed by my mother, my family, EVERYONE. I had been planning a life for myself, never including the possibilty that I may have HD. I can remember learning about it in school and thinking 'Those poor people. That is so awful. I am so happy that doesn't run in my family.' But all that time, it was always there, just unknown to me.
I continue to be terrified. This is only the 3rd day that I have known this, and I am amazed that I have only cried once today. I had a test this morning and didn't do as well as I would have like, I couldn't concentrate. My whole body felt like it was on fire. My heart was always pounding in my chest. I am a runner. My heart rate is normally in the 40ies. NEVER pounding. I am a straight A student. I NEVER miss stupid questions, but today I did all of those things.
I am lucky to have a very supportive boyfriend who has been my rock from the moment I have found out. Many times over the past 3 days I have felt like he is the ONE person that I can trust not to lie to me, but he keeps telling me things like, calm down, it will be ok. That isn't good enough. I need to hear from someone else who is feeling the same way I am. Uncertain as to whether or not I may have it, whose life has been turned upside down with fear. I want someone to tell me, "don't worry, you don't have to calm down right now. I KNOW what you must be feeling." I want to know that I am not alone, because right now, more than anything in the world, I feel more alone than I have my entire life. Please, if you can write me something back tonight, I vigilantly check my email, and have added this site to my list of "favorites". If someone can extend a hand that I might be able to hold onto for awhile until I can find my own feet again, I would be forever in your debt.
Sincerly,
Agape