A Ride With Matt – Her Take – Now It’s Personal!

Pal-Mac Cheerleading 1984.  It’s not a great picture, but it was the 80’s.  I wanted to share a “face”.
Earlier this week, I shared with you my personal account regarding my plight for awareness for Huntington’s Disease because I have been moved to share this with y’all! The reason this is personal is because I “know” this disease.  My family does not suffer, my family does not feel the sting.  But my ties to this “story” are very personal.  I want YOU to support A Ride With Matt because this matters.  There are names, and faces, and human lives behind this disease and it takes so much from the families that suffer!

I went to school with one such family.  Their mother was my English teacher.  I had classes with, cheered with, and graduated with a woman who I am proud to call “friend” (above 1st row, far right…how cute is she?  Doesn’t she LOOK happy?).  It is moving, it is personal, and you should WANT to help after reading this.  

Without further ado, my friend, Annaliese, tells her story about living with the demon that is Huntington’s Disease.

“Before HD, my dad was an amazing man. He was the class president and total athlete! Football, basketball, baseball, and track – he did it all. His track records stood for a long time at Pal-Mac! He played trumpet in the drum and bugle corps in Palmyra. He served our country in the Navy during the Korean War, and he came back and went to RIT, but failed out. He became a Quality controller at Mobil Chemical which was the job he held until his retirement in the late 70’s. He coached at the Palmyra community center, basketball and baseball too. 

He was a volunteer fireman which caused him to have second degree burns on his hands and frostbite all at the same fire when trying to rescue children in a fire. He ran right to the scene instead of going to the fire hall to get his gear. 
He took us on amazing camping trips to the 1000 Islands, Jersey Shore, and Canada. He bought me my first brand new pair of skis, my first new ice skates, and he came to all my home softball games. I still have the doll he bought me (I’m sure my mom made him do it!). I made his coffee in the morning before I went to school and sometimes toast. But truth is, I was embarrassed by his disease, I was hurt by his disease, and I was robbed by his disease. 

HD was not understood and basically unheard of back then, especially in Palmyra. So yes, the general misconception was my dad was the town drunk. I didn’t know how to defend him. No one else’s dad had this issue.  There wasn’t a support group to go to. I wanted to ignore it, I wanted it to go away.  I wanted the pain to go away!  

See I didn’t get to know the guy who was once one of the town’s heroes. I knew the guy who seemingly argued nightly with my mother and occasionally beat her, who was constantly depressed, who often spent his night parked in his recliner smoking and saying nothing or went out with the guys to play poker on Friday nights and Saturday was golf. He often choked during dinner, fell down the stairs and stumbled down the street. He frequently crashed the car until he lost his driver’s license which just sent the depression in a downward spiral. It destroyed him. He took to driving our riding lawn mower around town because they didn’t have nifty scooters back then. 

HD robbed me of having a typical father-daughter relationship, yet I clung to every bit of sense of emotion and belonging I could get from him. I didn’t know then how badly the meds and the disease affected his ability to show emotions. I don’t remember him ever telling me he loved me, but I can remember forcing myself to kiss him goodnight and telling him I loved him in hopes to get a little bit of acknowledgment in return. 

I took up skiing and softball, not because I was interested in it, but because he was. I grew to love them both.  I still ski and I coach little league baseball.  I still have that doll, the skis, and the skates. I can’t seem to part with them.

Right before Freshman year, my dad beat my mom so bad that she kicked him out. If Adam hadn’t have been there, he probably would have killed her. He went to live with his mom across town, but he came over all the time, hung out in the garage, took care of the yard, rarely came in the house but attended all our games. 

The tension in the house was cut in half, in part because he was gone and in part because Andy was too. He wasn’t diagnosed yet, but he had a wickedly violent temper and often put holes in the walls and doors at our house. 

Sophomore year I attended the Junior prom with Scott, and Dad came for pictures. He gave me five dollars in case I needed to call a cab if Scott “got fresh” or drank too much and couldn’t drive home. I can’t tell you how much that stupid $5 meant to me.
By Junior year Dad was moved to the VA center in Canandaigua and our holidays always included the dreaded visit there to see him, gifting him with soft, simple clothes that he could easily put on and take off. Having to hold his cigarette for him so he didn’t burn himself and struggle to create conversation with this now shell-of-a-man.

The day of our high school graduation, he couldn’t be there. He couldn’t see me cross the stage as he had for all the others- he didn’t get to hear my graduation speech or see me receive my awards. 
During my college years I studied HD, tried to develop alternative means of communication for him as his vocabulary was reduced to “yeah, no way, and beautiful”. I was always 1 step behind his needs, racing to catch up, to stall the declines, fighting for speech and feeding therapy for him and then advising the feeding tube. I made up a photo album about his family, high school, and Navy days for his room so that when people came to visit, they could look at it with him and have something to talk about. The day after I graduated from college I went to show him my diploma and award. He said “beautiful”. It’s the last word I remember him saying to me. He said so much in that one word.

At graduate school at Penn State, I took more classes that I hoped would help give me the tools to help him.  Augmentative communication was new on the scene and I was a star student. Too late, I couldn’t get the VA center to support my programs for him and he couldn’t do it without daily support. My Master’s Thesis was on treatment options for HD patients in each stage of the disease. I got an A, but I failed to help my dad.

The day I was married, my dad could not be there.  After the reception, we went right to the VA center so that my dad could see me in my wedding gown and hopefully realize that his baby girl was all grown up and taken care of, and that he could die in peace knowing his job was done. I don’t know if he had any clue who I was, but I know I shared my wedding day with my dad.

Dad died the following year.  He was finally at peace.  I truly am so proud of my dad!  He was an awesome man, I wish I could have lived more of the healthy years with him.”

You see, I knew Annaliese, but I didn’t really know her.  I am now AWARE and ready to help!  Are you?  Please consider donating to this worthy cause.  Support this family..and so many more families like the  Austins that are misunderstood and battling Huntington’s Disease in the shadows!

About Christy

Christy Gossett, managing editor of SoFabFood and creator of the healthy living blog, Insanity Is Not An Option, is a WAHM of 6 kids ranging in age from 27 to 8. She enjoys sharing her heart-healthy, low sodium recipes to help others with dietary restrictions enjoy a flavorful life while maintaining a healthy diet.

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  1. @MimiBakerMN says:

    Wow, that’s a powerful story! I can’t imagine having to live through that. Thank you for sharing!

  2. clgossett says:

    Thanks Mimi! I know it was hard for my friend to share but it’s such an important message that really needs to be heard!

  3. Oh my gosh Annaliese, I want to hug you so bad right now!! What a heartbreaking, yet beautiful narrative of your father and your family. Your Mom was one of my favorite teachers, and yet I had no idea she (and you) dealt with such pain. I knew your dad was sick (not the town drunk) because of our talks, but had no idea the depth of the pain you endured because of this disease. What a sweet story about the prom and Scott getting “fresh”! As I told you a few years ago, you were always one of my role models at PM, and now that I know more of your “story” my admiration grows more. I love you girl!