Shout Huntington’s Aloud

Some words from Therese,

I once read, “If you have one true friend in your lifetime, you are lucky”. With that said, I have been extraordinarily lucky! When I met John in 1976 and we became a couple, I quickly learned that being with him meant having his three older sisters in my life as well. The four siblings had had a difficult upbringing and were exceptionally close and I was thrilled when they welcomed me into their circle.

Like their brother, Lora, Marcia and Cindy were kind, positive, unselfish individuals and I became closer to them than I was to my own sisters. Through the years, I would count my blessings for the loving relationship the three sisters and I shared, as they became tried and true friends. These brave, gentle souls would inspire and teach me many lessons that would enrich my life.

When the sisters discovered the Marin family secret in 1978, their mother had Huntington’s disease, I struggled with my commitment to John, broke off our engagement and walked away from the four of them. But, after much soul searching, and deciding life was too short to walk away from the man I loved, John and his sisters welcomed me back with loving arms. John and I married in 1980.

Thus began our journey into the uncharted world of living AT RISK for Huntington’s disease. Though we didn’t speak about living in the shadow of Huntington’s, I acknowledged the possible consequences of my decision to marry into a family where four individuals had a 50/50 chance of inheriting the mutated Huntington gene.

In my mind, based on statistics, this inherited neurological disease with horrible odds, translated into the fact that probably two of the four Marin’s would eventually show symptoms of the disease. It was a coin toss that we all tried to ignore.

Through the years, John and I shared many good times with his sisters playing softball, having barbecues and parties, camping, taking vacations together, and just hanging out at Lora’s house in Citrus Heights.

Unfortunately, in 1984, Huntington’s began its attack on the Marin women. Lora was the first to fall prey to HD with severe, deep depression that led her to self-medicate with alcohol, and she was stolen from us at age 41 in 1989. Marcia was diagnosed in 1986 after a terrible car accident that seemed to trigger and exacerbate HD symptoms and she died at age 49 in 1999. Cindy, who we thought was free from the disease, began showing symptoms at age 41 and died at age 54 in 2008. Because of our close relationship, all three sisters lived with John and I at particularly hard times in their lives and I cared for Marcia for many years until I needed to return to fulltime work.

John and I miss them terribly and we wish we could have grown old together, celebrating birthdays and the holidays together and sitting on the deck at our cabin in Lake Tahoe sipping wine and watching the sunset. Forty years ago, I took the biggest gamble of my life by keeping these people in mine, and it has made me the person I am today.

I have published a memoir, Watching Their Dance: Three Sisters, a Genetic Disease and Marrying into a Family At Risk for Huntington’s” to accomplish several goals. My hope is that the book will heighten HD/JHD awareness, as it will be promoted around the world.

To learn more about Therese, please see her Author Website: www.theresecrutchermarin.com

HOPE. This is what we have all felt with the news from the Ionic trial. Living with HD as a family member is always having that black cloud just over the horizon, looming angrily to remind us all that time’s winged chariot is zooming along. But now we have light…not a lot, but it’s there. How good is that?

It reminds me of the famous expedition by Apsley Cherry-Garrard (what lovely name, Cherry to his mates) who was on the Antarctic expedition with Scott at the beginning of the 20th century. Off he went with 3 colleagues in the depths of the Antarctic winter – which means total dark 24/7, plus -50 degrees and a howling wind, to go and find out how the Emperor penguins reproduced. Nobody then knew.

They travelled for several days and then disaster struck. Their tent blew away. The men faced the fact that without it…they were doomed. It was too cold to survive. They couldn’t cook without its shelter or sleep or get out of the devastating wind and cold. They were miles from help and no way of summoning any. When HOPE… they found it snagged on an overhang.

I feel HD is a bit like that journey. Because it’s dark and cold and you know disaster looms. And now we have found the metaphorical tent in front of us. We can travel forward.

Cherry’s team didn’t know if they would get the precious egg. They didn’t know if they would survive to get back to Scott’s hut. But they knew they had a chance.

We all now have that precious chance to conquer this disease with its cruel progression. We can get back to the hut. And so we enjoyed Christmas. We all played games, and drank and ate enough for several expeditions. We went to the alternative Cinderella at the Citizens Theatre and laughed. We walked along the beach and took photos, just discernible in hoods and jackets. The teenage two argued and emptied the dishwasher ( it’s YOUR turn, it’s not, I did it last time…) and the dogs had a go at each other, and 3 of the adults did the Turkey Trot with Euan coming in at a fast time, and we ate Boxing Day Buffet and drank some more.

It was fun. And if January is now a bit dank and dreary and dry…spring is on its way. And at least we are not shuffling round in a circle with an egg on our feet- the fathers that is. Mums are off in the oceans swimming and fishing. When Cherry came back to London he took the hard won egg to the Natural History Museum where he had to wait in the corridor for some time, and was treated with less than courtesy. Poor guy!

We have our egg, and it needs nourished, and money, clever clever people, and HD+ve people who are brave enough to go on the trial. We will get there I am sure of it…and it’s so good to have that hope.

Barbie Short, January 2018