Home-A Journey of my life, in a family with Huntington’s Disease

This is me, Jenette Anderson…I live in Stillwater, MN

“Change the energy you are offering the world,” is something I read by author Carol Tuttle. When you walk in a room, people can feel and sense your energy. They can tell that you are an angry, sad or happy person just by the energy you are offering. I made a decision when I was a teenager that I was not going to let Huntington’s Disease bring me down, but that has been harder then I had imagined. I decided after the passing of 2 of my siblings, and my older sister being admitted to a mental facility in Pueblo, that I needed to deal with this disease and actually tell people that Huntington’s was in my family. For I am the Soul Survivor of four children, born with 50/50 chance of inheriting the Huntington’s Disease Gene. Each of my siblings  was diagnosed in their early to mid 20’s, giving them little chance to travel and see the world as they had dreamed of. This blog will bring you through my travels and as I share the most amazing places, I will reveal and interweave the stories of myself and my family. I promise you will read things that will be hard to believe, and be amazed that so many things can happen to one family. But it is all true to the best of my recollection. I hope you follow my blog and look forward to each post, where new places and stories will be revealed.

Machu Picchu…amazing energy! Sitting here wondering if my family up there can see me and feel the joy I have in this moment?!!

I was so fortunate to have a best friend from high school help start me on this quest of dealing with Huntington’s! I had been making many trips home yearly to see my family and I would always make some time to stop and see Eric when I came to Colorado. Over the years he saw the tole that had been taken on me,  watching my family slowly being taken over by Huntingtons. He had known all my siblings and saw the destruction it had taken on their lives and slowly on mine. But one particular trip stands out above all.  I had flown into Colorado  May 23, 2010 and headed to Pueblo to go visit my oldest sister in the Pueblo Mental Health Institute. I had come to visit Christy many times over the past few years, but for some reason this particular time was different. I had never cried or allowed myself to be anything but strong when I would see Christy, because I had never felt that close to her. I would say growing up, her and I were like oil and vinegar. But, I still felt horrible seeing her in this institute, unable to have a normal life like most young women her age. She could rarely even go outside. So when I drove away that day, I had a major shift in my emotions. I was overcome with sadness and had to pull over several times to get control of myself and be able to clear my eyes of the tears, so I could make it to Boulder to visit my friend Eric. This drive took a lot longer then it would have normally been, due to all my pull overs! When I finally got to Boulder I was in a funk unlike Eric had ever seen. He probed and fired questions at me that no one had ever done. He drew on a sheet of paper all of my family, then we talked about each of them and he gave me advice on how to talk to all my nephews and my own children about this disease and how we as a family need to talk about it and go through it together, etc.  I was heading to Rifle and I needed advice on how to get a grip on myself. He gave me stern, hard evidence of the destruction it could take on all of  us, and unconditional love and support that only really good friends can give. I dreaded heading to my home town to see all my family, because I was suppose to be the strong one and I just couldn’t pull myself together. Why had I become so emotional after all these years? Why this trip? Nothing was out of the ordinary when I visited Christy. Had it all just built up to this meltdown?

Rifle is about a 4 hour drive from Boulder and again, I had to pull over many times to get myself together. Something was pulling at me stronger then it ever had! Why was I so out of control and unable to get my emotions in check?  I had never allowed myself to let my emotions go like this and didn’t have the coping skills to deal with it, but Eric had given me strong advice…it wasn’t just about me any longer. I needed to step up and help this family through what laid a head of us all. I needed to find a way to let all this pent up emotions out and it had finally boiled to the surface. So, I called him while I was pulled over in Glenwood. Now, he was guiding me to take time to be mindful and set myself up for ways to cope. He had a list of helpful tips and suggested I take a little time for myself in Glenwood and go to the hotsprings before I see my family.

When I got to Rifle, I took my nephews and dad out for dinner and discussed my youngest nephews birthday, which was the next day. Did he want to go visit his mom in the Palisade Nursing Home, (my younger sister, Carri)as I thought she would love to see him on his birthday. But we had plans to go see her the following day when his oldest brother got into town and he wanted to do something fun for his birthday. My nephew decided he wanted to go to the Glenwood Springs HotSprings pool for his big day! So I picked him up in the morning and we went out to eat and then spent the day at the hot springs. We got back into Rifle around 4:30pm, and my middle nephew was waiting for us on the front porch. He had his hood over his head and head down. No direct eye contact. He said Grandpa had been waiting for us and had something important to tell us.

When I walked in, my dad had told me that my youngest sister(15 months younger then I), the mother of my 3 nephews,had died at 4pm that day!

What? I just couldn’t believe it! We were suppose to go see her tomorrow. How could this have happened? I fell to the floor, crying. Unable to even look at how everyone else was processing this news. Was this in the air when I was visiting my older sister in Pueblo? Did I sense this energy coming? The reason for all this emotional breakdown all this time had more to do with my younger sister then my older sister? She knew I was coming and would be with all her boys. Did she choose to pass before we all got there? She knew her boys would be with me and be ok?

I took Eric’s advice and brought my nephews out to eat and talked about a lot of things…

A few days later, I had to drive back to Pueblo  to tell my older sister  Christy, that Carri had died. This was not something I could do on the phone. This awesome friend then offered to drive with me and tell her that Carri had passed. He was just what I needed during this difficult time. Like God had put him there to be my rock. He was the person that not just listened to me, but was guiding me through this destruction, that no one else in my life did, or could do. They didn’t have the means, knowledge and insight. He has intuition, strength and knowledge in this area that was extremely helpful to me when I needed it. To this day, much of his advice and encouragement keep coming back to mind, and I am always up for his opinion, thoughts and direction in so many areas of life. Eric has put the work into his own life and has come through it like a champ. You have to work at being mindful and present in others lives and your own. That is how he is your friend. He doesn’t let things slide because you are in a bad place. He made me face these issues and I am extremely grateful. Each friend brings something amazing to a friendship, and Eric was my sounding board,mentor, guidance counselor and friend through all those hard years when each sibling was being diagnosed and treated for Huntington’s. He is family.

I am so grateful he  has helped guide me on my journey in so many ways! I am also thankful to his wife, Stacy, for being so gracious and tolerant of me asking him for his advice. I am also thankful to my husband Todd, for letting me lean on my friend Eric through this difficult time in my life. One person can not be your only support system through every part of life. Todd had never gone through anything so hard and found it difficult to understand what I was going through. I leaned on many people for direction and support, as it takes a village if we all care and want the best for those around us.

Eric and I, 2017

I also decided to get some help in how to manage my sadness and change my energy. Change the energy I am putting out and change the world I am creating for myself. I found many different spiritual, holistic people that somehow just entered my life when I needed it!

What I knew I could do, to bring me joy and feel as though I am fulfilling some kind of spirited relationship to my siblings was see the world. Travel was one thing I knew had been pulling at me since I was a child and we would all dream of where we would travel to and what we would see and do! It helps me to feel close to them, even if it is in spirit.

I remember being overly curious of traveling when my older brother was able to go on a school trip with his french class to Europe. My sisters and I would wonder what he was seeing, eating, and experiencing. We would talk about our own dreams of where we wanted to travel. Top of my list was Hawaii! I remember being in lala land when I actually booked our trip to Hawaii, always believing that it was so out of reach for me, never really believing I would go!!

I will be the only one of us four that gets the opportunity to travel extensively. BRING IT ON!!

Through my travels, I will bring a little of each of them with me, reflection of each, and tears for each sibling. There are so many stories of my family to tell that are just so hard to believe happened, and I will find a way to interweave as many as I can to tell our story. I want each sibling to be honored and have their story told that is the truth as I experienced watching it unfold. As hard as it was through all these years, and still is, this is my family! It is quite the accomplishment for me to be so vulnerable and open regarding this subject that has been so sensitive and personal. I have not talked openly about so many of the stories I hope to share with you as I blog about them and incorporate my travels, that help me feel connected to them. I hope I can capture some of the raw emotions I feel and yet show you great tips and amazing places you may want to travel to.

Belize…so fortunate to have my nephew Zach want to come travel with us

My 2 sons(Connor and Dalton) in Tamarindo, Costa Rica

Life can bring on extreme challenges for so many of us, but it is up to the individual to make a choice and find some kind of light in the darkness. For me, it has always been remembering our childhood dreams of traveling, and acting on them. My siblings and parents would be happy to know that I am enjoying the dreams we as children fantasized about while watching The Love Boat, Fantasy Island’ and The Price is Right(always gave away luxury trips)! Who didn’t dream of seeing those exotic islands and countries, right?

My siblings and I, 1980…myself, Christy, Bob and Carri

“We travel, some of us forever, to seek other states, other lives,other souls”-Anais Nin

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