I recently read, A Million Miles in a Thousand Years by Donald Miller. It is a book about what makes a good story. I loved the book. I have to be honest, though. I could not help but wonder what his real story was. If his story is what is in the book, I want his story.
He rode a bike.
He met his father.
He started a mentoring program.
He wrote a book.
They made a movie.
He wrote a book about making a movie.
If that really is his story, I am so impressed at the insight in his book on what makes a good story. You would think that type of insight would have only come from the pain and heartache of a difficult story, which is what he says makes a good story.
By that definition, my story has the potential to be an epic novel. Even a movie. It is a good thing I already know who will play me.
But even still, I find myself yearning for a story like the Pioneer Woman’s story. Now, THAT story will make a great book! Who would not want THAT story??? Even if she has to get up at 4 o’clock in the morning and has to deal with a cow’s private parts. She still has an amazing love story and an amazingly beautiful life. I don’t know about everyone else, but in my mind that is what makes a good story.
Fairy tales have ruined us all. Isn’t that what we all want? Some of us clearly did not sign up for the stories we got.
But the one thing we can all be assured of as believers is a happy ending, no matter what our story. But the happy ending that God talks of is when He comes for His bride, the church. When once and for all we are with Him for all eternity. This life is not where our happy ending lies. It is just the journey. We are only sojourners here.
Now some of us may have some happy stories here. It’s just not “the end”. That comes later.
Through each trial in my life, I have grown. At the age of 46, I am not the person that I started out as at 20. I am wiser because of painful mistakes. I am more forgiving and loving as I have realized my own imperfections and limitations. But as I face the trial before me, I find myself thinking, “Good grief, how much more do I need to grow? How good does a person need to get???”
What is ahead will put me through the press like no other trial I have yet to experience. I am still just in shock when I look at my husband and realize what he has ahead of him. What we have ahead of us. What we are already smack dab in the middle of. It’s been two months since we found out that he was diagnosed with a disease that will change our lives forever. I am still in shock a little. In one moment our story completely changed. All of a sudden we became a story about a rare and tragic disease, a disease that is devastating as the person’s brain cells waste away. We are still trying to find our parts in this story. Once upon a time our story was about buying land with our grown children and living out the life of our dreams. Our story changed in one brief second.
A good story, though, isn’t always about the cards you’re dealt. It’s about how you play them. That is the real story.
And you know what? Hard story and all, in this moment right now, my cup runneth over. I am blessed. That is how I have to walk lately, moment by moment. Five minutes from now I could be throwing myself on the bed in tears of despair.
Definitely read Don’s book. It has a lot of amazing insights. While we do not get to choose our story, it will help us to see the opportunity and challenge to make the story we have a good one.
I am, after all, the leading lady in my own life.
Some days, though, I may just stay in bed and not take any chances of screwing it up.
~T
Hello. I’ve really appreciated your comments on your blog. You are so right when you say a good story is about how we play the cards we’re dealt. I’m having a hard time playing the cards I’ve been dealt. My husband too was diagnosed with Huntington’s disease a year ago. Things have been rather dark for me. Thanks for your willingness to share your thoughts about all of this.
Hi Teri,
I know. Every day, every moment is a struggle. It takes everything I have to not get lost in the darkness. This disease has wreaked havoc on our marriage for many years. It is honestly one of the ugliest diseases. I am not even sure what normal is anymore.
I’m glad it’s been helpful to you to hear thoughts from someone else going through this. It’s a very isolating disease. No one can usually even begin to imagine what it’s like and no one else you know has it. I hope to share more, possibly even some videos. I talked with him about that this weekend. I don’t want to do it, but it might help someone else, and he’s okay with it.
How is your husband doing? Is he showing symptoms?
~Tammy
Tammy
It’s so good to talk with someone who knows first hand about this disease. No, my husband has not started showing symptoms but his brother has been dying from it for the past 20 years. He’s in the last stages of it. We’ve seen what the disease does to a family. It’s heart breaking. I’m so sorry that it’s wreaked havoc on your marriage.
I picked up from reading your blog that you are a christian believer. Is this correct? I am too. I’ve found myself being angry with God quite a bit this past year. I’m trying to figure out where God fits in all of this Huntington’s stuff.
Do you have children? We have three, and I’m terrified about finding out which of them have the gene.
You are lucky that your husband is not showing symptoms. There is still a great deal of hope that they may be able to treat/halt it before he does. I know it’s hard to imagine that now when you feel like your whole world has been rocked, but there is definitely reason to be hopeful, plus it’s really good if he has some sort of hope to hang on to.
Mine was slightly symptomatic for years, but we didn’t know what it was. We knew it could have been this, but it advanced so slowly that neither us or the doctor thought that it could have been hd. The last year or two, his symptoms just took a major jump. I have no idea if they are going to plateau at this level like they did for all the years before or keep progressing at this rate. There seems to be no two cases alike. Five years ago, the average person would have looked at him and probably wouldn’t have noticed anything different about him. Now, it’s very obvious.
We do have children, but they are only mine biologically. He never had any biological children of his own. I know that must be so hard when you have your children to think of, too. And the fact that you both have watched his brother go through this. It is an ugly disease. I’m so glad that your husband isn’t showing symptoms yet. There could still be hope. Do you know what his CAG count is and what his brother’s was? Sometimes there isn’t rhyme or reason to it all, but sometimes it will follow patterns with the CAG count. Was it their father who had it?
I am a believer. It can sometimes be hard to understand or see where God is when we or people we care about are suffering or when we’re afraid. I just know we can’t go through this or anything else without him.
I agree. It is good to talk to someone else. It’s hard for most people to understand without having to live through it. It’s a hard disease to even describe. I tell people it’s like Parkinson’s and Alzheimer’s put together with a little schizophrenia thrown in just to make it fun.
My husbands CAG counts are very low that’s why he hasn’t shown symptoms yet. He’ll probably have a mild case of it. But I’m mainly worried about our children. Two are married. My son and his wife want children of their own but with my son being at risk it makes things complicated. Yes, my husband got it from his dad. We had never heard of the disease until his brother was diagnosed with it 15 years ago. His dad has a mild case of it but his brother started showing symptoms at 35 and he’s now 60. One of the hard things about this disease is that it progresses so slowly. Did you know it was in your husband’s family?
So tell me, as a believer how do you approach God with all of this? How do you make it through the day?
I didn’t realize your children were grown. So they haven’t decided whether they wanted to be tested yet or not? That is such a hard decision. I’ve questioned many times if it would have been better to know sooner. It still seems to hang over your head one way or the other, but there is definitely some sort of finality to hear the words when someone tests positive for it. I cannot imagine what it would be like as a mother to watch my children go through this, even the uncertainty of it all is so hard. I would never want to see my children go through what we have gone through. My heart hurts for you just to think about it.
Last time I researched hd, it sounded like they might be on the edge of some great things. I sure hope for everyone with this disease that they find something to halt the progression of it soon. Having that hope is so important to the human spirit. Even as far along as my husband is with the disease, I always tell him that you never know what tomorrow might bring.
We found out my husband’s dad had it shortly after we were married. It was actually right about the time they came up with a test for it in the early 90s. His dad didn’t live here, so I think in some ways it didn’t seem real. We missed the real crazy stage of it because they basically had to keep him sedated by the time we saw him again. He couldn’t be controlled. When we would see him, it was just for him to come out his room to eat. He hardly said anything. I honestly don’t know how anyone attempts to do this without medicating them. He was so agitated and unreasonable, but maybe everyone is different. I can easily see that being the way my husband would be. There is no reasoning with him once he gets something in his head either. He’s already said that he would prefer to be sedated than to live in that turmoil every day.
You know, I think I am at a different place than many spouses. We were already maritally bankrupt before he even decided to get tested. As a matter of fact, I had already told him I was leaving before he decided to get tested. The Huntington’s itself wasn’t what was as much of a struggle for me as feeling like I was now forever trapped in a marriage that had been long dead and over. So now, not only have I lost the last 20 years, but the next 20 will be even worse. While I am very compassionate toward him and will be there for him, I struggle with knowing what I should do for me. That is what I struggle with on a daily basis and really lean on God to get me through. Every. Single. Day. Each morning it starts all over again. I cannot believe this is my life.
I am sure if we were closer, I would also feel like I were losing a spouse. I had already come to terms with that, though. We were over long before he was diagnosed. I think my struggles and how I would be approaching God would be different if we had been in a different place, or if I had children who were at risk. I would be hurting and mourning in a much different way. I can’t really relate that to my marriage. I do hurt for him, though. I hate to see him or anyone else go through this. If I could change this for him, I would. It’s just that I care for him in a different way than a wife would, I guess.
I have had people who asked me if I thought the HD was what the problem was with him all along and was why we had so many problems in our marriage. I don’t know. What I do know is that after twenty years of it, does it even matter why anymore?
I did go through a lot of emotions when my brother got sick and died, though. That was the biggest test of my faith that I have ever gone through in my life. I really thought he would be healed, and I felt so betrayed, and my faith was quite shaken, and I was angry. I didn’t know what to believe anymore. It was a very dark time in my life. I journaled a lot. It was the only thing that helped me work through it. It helped more than talking with anyone or anything else. Through my journaling, I realized I had not been looking at my life and his as the blessing and gift that it was. I was looking at it from a place of lack and want instead of the gift that it was. He could have been born into any family, and I could never have been adopted into the same family. But we were together for a reason, and God had placed us together. My brother was amazing and left a hole in my life that no one else on this earth will probably ever fill, and he was my best friend. People would come to me at the funeral and after his death and tell me how I was his favorite and how he loved me the most. He was a gift, and I was so very blessed to have in my life. But ultimately he was God’s and His to take home when He wanted. But he was such a gift while he was here, and I was so very blessed to have in my life. But it took me a year of struggling and journaling for me to get to that point. I think that is the only time in my life that I have ever been angry with God. I’m not the first sister to get mad at God for that one, though. At the end of that year, when I had that revelation, all anger completely left. It was like I had spent the last year in a dark cloud where I could hardly breathe, and all of a sudden, the cloud was gone.
The only advice that I can give is to journal and pray, and God will meet you there. Every day I struggle. Every day is hard. I don’t even come close to having all the answers for myself much less anyone else. All we can really do is be there for each other and share the highs and lows so that we don’t feel so alone on the journey.
Tammy
Thanks for your words and for sharing so candidly. I can tell that your life is hard and that you struggle on a daily basis. You are right in saying that God is the one that gets you through your days; one day at a time. I do believe that God meets us right where we are in the midst of our pain. It must be hard to know what to do as far is your marriage is concerned especially with your husband’s illness. I’m so sorry about your brother. To lose someone so close must be very painful.
Yes, my children are all grown and in their 20′s. My daughter, who just got married, wants to get tested in the next year. My son, who has been married for 5 years, is scared to get tested. It’s such a hard decision. Because my husband hadn’t shown any signs of the disease, we really thought he was negative. It was a shock when he tested positive. I too have read that research is progressing and hopefully there will be medication to slow the progress of the disease in the next few years. Like you said, all we can do is hope. I’m scared for my husband and how he’ll react when one of our kids is diagnosed with HD. It’s been extremely difficult for him to see his brother with it for the past 20 years. His brother was his best friend. But my husband has a very strong faith that has helped him get through all of this.
I agree that journaling helps. Though I look at my past entries and many are my cries to God with words of despair. A book that has helped me a lot is Where is God When it Hurts by Phil Yancy. I’ve read it several times and I think it’s time for me to read it again. I really appreciated your post on the steps to finding joy. I wrote them down in my journal. I feel that I am in a dark cloud and I pray that some day it will be lifted despite the fact that HD will always be in our lives.
It’s been good to “chat” with you.
Teri
Teri,
Thank you so much for not judging me. It’s really the first I have written about it publicly. I may blog about it at some point. I just hardly know where to begin.
I can only imagine how sucker punched you both felt when he tested positive. I am sure at that point the test was just something done to give you peace of mind. You know, I have read many stories where so and so died at an old age that everyone thought was a little eccentric or quirky (and who doesn’t have a few of those relatives, right?), but nothing anyone could put their finger on because they weren’t THAT bad. With your husband not showing any symptoms, I would think that is a really good sign. Judging by the ages of your children, I am assuming that we are all pretty close in age, and to not be showing symptoms at his age has got to be a good sign. From everything I have read, the later you start to show symptoms, the greater your chance of living a very normal life. I would almost worry that the stress of knowing, plus our mind’s ability to manifest symptoms of diseases, would be the biggest concern right now.
I agree. It’s a hard decision for your children. I don’t judge anyone or would never for one second tell anyone there is a right or wrong decision. It is a very personal decision. I can imagine it weighs heavy on them if they are thinking of children, plus having seen their uncle suffer through this disease. Even though we were spared the worst of it with his father because he didn’t live in this state and had been sedated by the time we did see him, we know it was bad before then, and it was honestly very little life after then.
I can completely relate to those type of journal entries. Just journal wherever you’re at. God will meet you there.
I can also relate to the dark cloud. Every day is a struggle. I remind myself, though, that I have only one life to live. This is it. It’s not the practice run. I just don’t want to live it under the dark cloud. I want joy. I want humor. I want life. I remember once when I was at an especially low point after David was diagnosed. I had hit rock bottom. I remember posting a status update on facebook that simply said: Jesus take the wheel. I had a friend who called me immediately. While we talked about hd for a bit, she of course, couldn’t relate or offer words of wisdom, but she did something for me that was nothing short of miraculous. She got my mind off of it and on something else. I cannot even begin to tell you how much I needed that. I try to always remember what I learned that day. It’s hard when the cloud likes to follow us wherever we go, but I have never forgotten how healing it is to take a break from HD. It’s hard sometimes because the reality of it stares me in the face every single day of my life when I look at him. The weight on my chest can be so heavy at times that it makes it hard to breathe.
That reminds me. After he was diagnosed, which was barely a year short of when my mom had died, I had a yellow post-it stuck to my desk that said:
“Just Breathe”
“One Day at a Time”
That was all that I could do to get to the next moment. I really had to just get back to the basics, which was remembering to breathe and at this time not to not think any further ahead than the present moment.
Oh, and don’t forget to take time to create. It’s healing to the soul. The day he was diagnosed, we planted a vegetable garden. We didn’t plan it, but it just kind of happened. It seemed to help to have done something that day and it gave us something else to focus on over the next few months. Of course, I really suck at growing things, so now I primarily focus on taking pictures and writing. At least I don’t kill anything in the process.
But tomorrow is a new day. And I choose life and light over the dark cloud. Even if I have to choose it every second of every day, I still choose it. And I hold tight to the promise that it will all be okay. It will be okay.
I have really enjoyed chatting with you, too, Teri.