This is going to be on a more personal note today. I rarely share anything very personal. Many people know of RM’s Huntington’s diagnosis, but I went very quiet after that. What many people did not know is that we had decided to divorce before he had even thought about getting tested for HD. So for me, it added a whole new challenge. Not only was I dealing with a failing marriage, now I was also dealing with his Huntington’s diagnosis. Any one of those things would have been difficult. There was no book out there to tell me how to do both and how to do them well.
I have not felt ready to share any of my journey…until today. As I was journaling for myself, I realized I was now ready to share a little of my story. It wasn’t that I wanted to hide it. I never wanted to drag anyone through the dark times. And honestly, it was not what I needed to process.
Sometimes, God puts into our hearts the intuition to know what we need. It whispers quietly and gently, and if we are still, we can hear it guiding the way. Follow that.
If I have learned anything from this, it’s that. Learn to trust yourself. Learn to trust that God is guiding you.
I have become a very private person during this time. In many ways it’s because I have gone inward and closer to God to find my strength and peace. I also did not want other people telling me what to do. I knew that only I would know what is right for me. I’ve gone the route of listening to others too many times, and it never turned well for me. I had to find my own strength and peace. It could not be drawn from my circumstances or from someone else for it to be lasting because those things are continually changing, although many people have inspired me in different ways, and for that I am grateful. And I am also grateful for friends who have commented on my blog, checked on me over the last couple of years, listened and not judged the times I have needed to talk, distracted me with fun trips, made me laugh, great conversation, and wonderful dinners. You are all angels.
Nothing could have prepared me for the last two years of my life. I remember someone making the comment in a Bible study years ago about how grace to go through a trial is given when we need it. Many times people will say they could never go through what someone else has gone through. God gives us what we need when we need it.
Because of this experience, I am not the person I once was…in good ways…and in bad ways. I’ve lost some of what I once loved about myself. I see glimpse here and there of some of the parts of me that I loved and lost, so I readjust my sails, knowing that she is still in there and will find her way. The ultimate challenge is to be who you are no matter what is happening around you, not letting your circumstances dictate who you are. Again, it’s a journey. But I have also gained a patience, understanding, and a grace that I never had. And for that, I am grateful. I like those qualities. They make me feel more grounded.
After 20 years of a bad marriage, a separation, trying again, a decision to end the marriage, followed by a diagnosis of Huntington’s disease and the two years of hell that followed that, we became what we should have been all along instead of a married couple…really good friends. This friendship did not happen overnight. It was birthed from not a few hours of labor but years of hard labor.
Being there for him while not destroying myself is a balancing act. We are still legally married and still need many questions answered to do this the best way with his Huntington’s. He’s actually still very protective of me. We are both protective of each other. Friends are like that. But we will get all of that figured out. I’ve often wondered how some people divorced and could be such good friends. I often wondered why they couldn’t make the marriage work if they could be such good friends. Now I know. And while I was tempted to try to make it work after he was diagnosed, that would be like the couples who think a baby will save a marriage, only worse. If it wasn’t already broken, this sure was not going to fix it.
No one wants to be the person that leaves someone under these circumstances. But then again who wants to be the person that stays with them just because of it when you both already knew it was over and had already had that talk? After two years of struggling and living as roommates, I concluded that there had to be something in the middle, something I could live with and do right by both of us. There was. We are family because of a shared life, and we became friends. It never had to be an all or nothing choice. There was another solution that had been staring us in the face the whole time.
Most decisions do not need to be made right then and there. Many times, we need to be still and wait.
God puts into our hearts the intuition to know what we need. It whispers quietly and gently, and if we are still, we can hear it guiding the way. Follow that.
It’s been a journey for him too. It’s been a struggle adjusting medications, but today he is doing well. In many ways, he is doing better than he has for years, but in others it is painfully obvious he has this disease. The chorea is worse. That is the next area that we will begin focusing. His mind is still sharp. In many ways, more so than mine. I guess I won’t worry about that until he catches up with me. He worries about it a lot though, as do I with mine. I reassure him that we are just getting a little older. We can’t possibly both have Huntington’s. It’s not contagious. His mood has improved greatly through medication, all natural except for his blood pressure medicine I might add, and much better than the Zoloft he had been taking. He has also learned better coping skills. In all honesty, this was a big issue for him long before he was diagnosed. I do not even think this began because of the disease as much as it may have been because he was raised with someone with the disease, who was raised by someone with the disease. That’s the thing about this disease, not only do you have it, but you are raised by someone who has it.
In the beginning, I had a yellow sticky on my desk with the words “just breathe” and “one day at a time” and if I remembered those two things, I considered the day a success. We have to start where we are. That was two years ago. I no longer need the yellow sticky. Yes, there are still bad days, but mostly good days. Most days, there is laughter, joy, and growth, and there is always gratitude.
I took this picture and wrote this quote in the darkest time of this journey. Even then, I knew I wanted to bloom. I love how God met me there and spoke these words into my soul. This gives me hope…hope to be the best person I can be, hope for now, and hope for the future. My story is not a tragic story or a sad story. My story is that of a woman who learned to show up for life even in the middle of a storm. This is just the middle of my story. We do not know what amazing things might be just around the corner. I love that we can continually edit our lives for the best story possible. Isn’t that such a wonderful thing?
Keep blooming, my wonderful friends.
Blooming is possible even when your world is turned upside down.
Note: The background in the shown art was designed and painted by Simply Topaz for Wonderfully Made Fine Art. Flower and text were added for the digital print.