I Am Learning to Embrace Sadness
I put my car in reverse and looked at my wife, Jill, in the back seat, trying valiantly to stay positive. I looked at my daughter, Alexus, in the front seat. She looked like she’d just lost her best friend, but she was talking and acting like everything was fine.
I put the car in drive and realized how sad I was. How sad we all were.
Alexus recently came for a weekend visit. When it was time for her to fly to Boston, where she lives, Jill and I drove her to the airport. During the ride, I came to the conclusion that our worlds have shifted and, in a way, shattered over the past two years. My wife and daughter both tested positive for the Huntington’s gene. We try to remain optimistic, but I know that we need to be sad as well. We need to mourn the lives we could’ve had — the lives we would’ve had if the tests had come back negative.
Jill has never been a dreamer. She’s happy with pretty much whatever life gives her — except for the fact that our daughter has Huntington’s. There’s no way to find happiness in the suffering of your only daughter. There’s no bright side to Alexus’ pain. But it’s hard to say that. It’s hard to face that. It’s hard to accept that you’re sad, but we have to learn to embrace it.
Whenever we talk about Huntington’s as a family, we feel like we have to put a positive spin on the conversation. Making others comfortable has become an unconscious habit. I think we forget that it is OK to be sad. The world will keep going if we take a moment to be sad and angry about Huntington’s and its repercussions.
I’m sad I can’t make it better. I’m angry there’s no cure. I’m sad that Jill and Alexus have to struggle with the knowledge that their lives are forever altered. I’m heartbroken that I’m unable to take their sadness away, but I understand and accept that Huntington’s has become a part of who we are.
These feelings of sadness will continue, and it is normal for us to wrestle with them. But that doesn’t make things any easier.
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About the Author
FRANCES SALDANA
I love this article, my friend. I have also learned to embrace sadness. I lost the father of my children and all three of my children to Huntington's disease. My three children were HD patient advocates and remained positive in their outlook about life until they took their last breath. I continue to stay positive and work relentlessly to create awareness about HD, to support research and to educate both HD families and the public about this devastating generational disease. I will never rest until we have a treatment for Huntington's disease. We are one big family, our HD community. God gave me a very noble calling. It has been a privilege and an honor to have had so many wonderful HD family members become a part of my extended family.
Carlos Briceño
Mrs. Saldana,
First of all, my condolences on all the loss you have endured in your immediate family. May they all rest in peace and may perpetual light shine upon then.
I really appreciate your comment. Your passion, your eloquence, your intelligence, your courage, your laser focus, your love for your family and for others with HD are all incredibly inspirational to me. Thank you for all that you have done and are doing for the HD community. On the one hand, what you have lost through the disease has also, paradoxically and on the other hand, given you purpose and life. Many people would have crawled into a hole when facing all your losses. But, through the grace of God, you have decided to fight the good fight. You're awesome! The world needs more hearts like yours!
Best regards,
Carlos
Gail Crisp
Dad died at 49 we had no idea what it was except drank too much got nasty, years later many conventions,met Nancy Wexler love her I'm the only one left Jan died 2 week ago 60 , Pam 50 nursing home 8 year s Mom died last month through a blood clot 90 and took care of us my daughter 32 tests negative for the Shit Gene I'm 66 getting my butt kicked spent a fortune for research and pill that slows it down sure wish they'd send me a bucket full night gc
Mary Turk
My dear friend and one of her brothers has HD. I am so sad for what she and her sweet husband go thru, but I am truly grateful that her children tested free of the HD gene.
Carlos Briceño
Hi, Mrs. Turk,
That is so sad about your dear friend and one of her brothers having the disease. But, I'm so grateful to hear that her children are free of the gene. Thank you for sharing all that.
Best regards,
Carlos
Ginny
Thank you both for sharing your life with all of us affected by HD. I love the thought of embracing sadness. I never realized I’ve been trying to suppress that feeling and be “positive” for everyone around me. But it is a legitimate feeling and one that may render ways to move forward as well, as Ms Saldana has. Thank you for bringing it to my attention. Blessings and grace to both of you.
Carlos Briceño
Hi, Ginny,
Thanks for sharing those beautiful comments. I'm so glad this column resonated with you and was helpful. One of Jill's goals is to make sure that, despite having the disease, she can help others understand it better or learn from what she is going through in order to help them cope. So she is grateful to hear that this column helped you.
Best regards,
Carlos