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CureHD Foundation
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As told by Susan Garrett...
When I tell people I have tested positive for the Huntington’s gene, I can see they feel badly and don’t know what to say. If they really know about the horrors of this disease, I sense they are thinking about how I will be in the future.

Yes, I am HD positive and I am in the early stages. This morning I went for a checkup. We talked a lot about my loss of balance, and my doctor suggested I retire all of my high heels, as I am a serious accident waiting to happen. He said that is the last thing I should have to worry about.

I wear heels every day of the week, because they make me feel feminine. Stupid thing to be upset about I know, but it's just one more thing. I know it’s a little thing, but that’s what life is; groupings of little things that make us who we are. For me, the loss of my heels is much more than wearing flat shoes that don’t make me feel feminine. It’s just one more thing in a long string of future losses.

I was on Hunt-Dis one day and mentioned the loss of my heels. Instead of laughing at me, a friend from the list said, "The same thing happened to my wife years ago. Just yesterday, I found a pair of shoes in her possessions; they’re shiny black and have very high heels. I remember seeing her in those heels some twenty years ago and thinking, ‘Gosh, what a babe!' Now she is bedridden in a nursing home. In my mind, I see her in those heels and we’re still walking together."

If I’ve lost my heels, I’ve gained friends and gotten support from people who have shown, in many ways, how much they care.

My friend at work, Chris, reacted this way to my flat shoes. "It's so hard to know how to act, speak, and feel, knowing that while for all of us marching through these halls, sitting in our cubes, it's just another day on the farm. But for you, every day is a reminder of what lurks ahead; no reprieve and no escape from the ever-present knowledge. I see you and act like everything is normal. For you though, nothing will ever be normal again; or rather, there is a new and terrifyingly real normal."

He continued saying, "I want you to know that for me, you are a great example, and a reminder of what it means to be courageous. I cannot express the depth of my admiration for you. For as long as I’ve known you, I’ve perceived you as a person of great innocence, without guile, struggling through life's challenges as a single working mom, carrying more load than you deserve. To have this added unto you and to still function is amazing. Susan, the power of simple perseverance which you demonstrate daily is mind boggling. It speaks volumes about your power of spirit and depth of character, in spite of how insecure you might, or must feel. In fact, it is this ability to act in the face of insecurity that tells me of the inner strength and faith you have, whether or not you realize it.

I want you to know that your heels will never define your femininity, but of course you know that. It's always your eyes I see, not your heels. I love who you are, Susan, and I want you to know that you are in my prayers. No matter what happens in this life, I have a testimony of the richness of your reward in the life to come, if you will continue to step into the shadows, despite your fear of the dark."

I miss many little things that I am gradually losing, and I know there will be more in the days and years to come. If I have to choose between the loss of those little things, and having such supportive and wonderful friends, I’ll take the friends.

Used with permission; Faces of Huntington's by Carmen Leal-Pock
1998 Essence Publishing—All rights reserved.