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On Death, Joy and Tattoos (And Where I’ve Been)

February 16, 2015

For the last week I’ve been trying to figure out how to begin this post. I haven’t been writing much for the last nine months, and for very good reason.

(No, not THAT kind of reason.)

Nine months is ironic, though. It has been a time of waiting, anxiety, sleeplessness, and more physical illness than I’ve had to endure in years. Quite a lot like pregnancy, in fact. But without the bonus at the end.

You may recall that my mother died of Huntington’s Disease – a genetic illness that strikes down the body as well as the mind. In 13  years she went from a vibrant, loving, generous woman in her mid-forties to a living carcass of what once was. Mental illness, dementia, and physical disability. She was the youngest patient of her condition by forty years when we checked her into the convalescent hospital. She was dead of heart failure a year later.

Now, let me repeat a couple of things:

  • Genetic illness
  • Mid-forties

Huntington’s Disease (HD) is hereditary. It is a genetic mutation that occurs 50% of the time in the children of parents who carry the mutation. My mother inherited it from her mother, and my grandmother inherited it from her father, who inherited it from his mother, etc.

For the last thirty years or so – since my grandmother became ill from HD and I knew what it was and where it came from – I assumed that I would inherit it as well. Why wouldn’t I? I’ve inherited just about every other trait from my mother save her gentle and easy nature (I get the feisty from my Dad).

It was just before I turned 41 that I realized I needed to know for certain. My mother was showing signs of mental illness when I was a junior in college. She was 45.

As such, I’ve spent the last nine months gearing up for the genetic screen that would tell me whether or not I had 3-5 good years left in my life, or 50.

I stopped writing, I stopped accepting speaking engagements. I went to work, I mothered the boys, and I waited. That’s pretty much it. I will write about it all, someday and soon, but during that period, the words would simply not form.

I think they were too tied up in fear. The emotions too raw. What would you do if you had but 5 years left of living?? I tried to cherish the moments that I could (let’s be honest, it is impossible, even in the face of imminent death, to cherish EVERY MOMENT as a mother. I have boys, you know.)

Genetic screening is not a speedy process. It takes months, required counseling, over 900 questions about your personality and emotional state, and whether or not you have ever been tempted to steal your best-friend’s sunglasses, until finally they determine you are sturdy enough to bear the news.

The day before I went in to receive my results, I did something I had wanted to do for a long time. Something other than sitting around waiting for my future to be determined. Something that would declare how I would handle the results, positive or negative. Call me foolish, call me heedless, call me cra cra…whatever.

I went out an got a tattoo. *gasp*

I’m nearly 42 years old. At what point am I going to grow up and regret it? This time of my life, these past nine months, they will NEVER not be a big deal. They will ALWAYS be a big deal. And I wanted  a permanent declaration of how I would deal.

In four generations I had only seen devastation as a result of HD.

My mother lived in absolute horror of the disease. I lived in horror of the disease. But, in the weeks leading up to my results, I came to a decision. I serve a big God. He tells me that all things are possible for the two of us together. Thus, I chose to believe in a positive outcome regardless of my results. Positive, or negative, I will choose joy. I don’t know how, I really don’t. But I choose joy, and I choose to believe that He has the power to make that happen.

So the night before my results, I had this permanently engraved upon my ankle, so that I could never, never forget. It’s taken from a translation of Proverbs 31:25b, and the design is mine.

Just like Shadrach, Meshach and Abednego, I was finally ready to face the furnace without fear. I wrote this a few years back:

There is some Bad Stuff in my past. Hurtful, horrible things that I have had to cope with, deal with, overcome.

I’m fairly certain there is Bad Stuff in my future. Why? Because Bad Stuff happens to nice girls. It also happens to mean girls and tall girls and short girls and those who deserve it and those who don’t. We live in a broken world, but it’s not our home. It’s not our home. And this isn’t all there is.

How do I know I’m going to survive when the Bad Stuff happens? In the words of Freddie, a wonderful dame of wisdom in my neighborhood; Freddie, a widow, 2x cancer survivor and surviving her own son. “Because I’ve lived it, I’ve experienced it and I’ve survived it. There isn’t any magic potion that is going to get you through it all, but I’ve got my faith, and I’ve got God. That’s all there is to it.”

In the words of another wonderful warrior, “God is my Plan A. I have no Plan B.”

This post is officially too long. You’ll have to check back later for more on this journey (and photos). XO

Read the backstory:

Grief

My Story: Why I Write

That Which Is Good

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18 Comments leave one →
  1. Bethany Fitelson permalink
    February 16, 2015 6:21 pm

    I love this. I love that you got the tattoo before the results, no matter the outcome. With bad results it may have been more of a command than a natural outcome – almost forcing yourself to will it to be true. I love that kind of faith and positivity and supernatural peace.

    • February 17, 2015 7:23 am

      Exactly. If the results had been positive, I had no idea how I was going to live out that command, but I was determined to try! Love you back.

  2. February 16, 2015 11:57 pm

    You inspire me. I remember when you told me you have always been praying for me. I couldn’t imagine what God has in store. I can’t imagine or begin to understand what you’re going through. But I’m so inspired by your faith and your outlook on the future. I love this post and your realness. I am on the edge of my seat. Love you Adelle!

  3. February 17, 2015 11:10 am

    I want you to preach this from a pulpit. So powerful 🙂

  4. KK Brown permalink
    February 17, 2015 11:23 am

    I am so excited to have you back blogging. You have always been my favorite blogger. You just seem to tap into me. I knew there must have been a big reason that you weren’t writing. I can’t imagine going through this unknown. You always have such a positive outlook on life. You inspire us all. Glad to have you back.

    Blessings,
    KK

  5. February 17, 2015 2:51 pm

    Powerful words ….and way to stamp that body of yours with Truth.

  6. February 18, 2015 10:00 am

    Wow. Such a strong reminder that the people around us are all dealing with what life throws at them too. And sometimes the feelings are too raw to share; I understand that all too well. I am glad you are feeling up to sharing and I look forward to your next chapter. I hope it’s a long one, full of laughter!

    • February 18, 2015 10:07 am

      Thank you Carol – this is one reason I love Humans of New York. A daily reminder that everyone has a backstory! Thanks for commenting. XO

  7. Dana permalink
    January 17, 2017 9:13 pm

    Do you know of a place called mission lodge?

Trackbacks

  1. What Not to Pray (Unless You Really Mean It) | Adelle Gabrielson
  2. The Waiting: On Fear, Friendship, and Snorkeling | Adelle Gabrielson
  3. Huntington’s Disease – Facts, Not Fiction, about the “Worst Disease Known to Mankind” Part I | Adelle Gabrielson
  4. Huntington’s Disease: Losing Karen, Part II | Adelle Gabrielson
  5. Huntington’s Disease: Part III, Now You Know, What Can You Do? | Adelle Gabrielson

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