A couple of months before I got married, I had an experience that not only changed my life forever, but made it very clear for me that I was making the right decision. Don’t get me wrong. I never doubted that I wanted to marry Erik, but this was sort of a test that made me really search inside myself and make one of the hardest decisions of my life. Whether it was God, if you are a believer, the universe, if you are spiritual, or sheer coincidence, if you are an atheist, it completely shook me to the core of my being.
It started when I went to Mexico for the second time to make all the arrangements for the wedding, which at that time was going to take place in the beautiful town of San Miguel de Allende. I talked to Erik on the phone and he told me he had punched the dresser in his sleep and was worried about it. When I returned, we talked about the incident and he said that he thought his grandfather had died of Huntington’s Disease, but had to ask his parents. I had no idea what Huntington’s was but he said he was going to make an appointment with his doctor that week.
The next day, I typed it up on Google and this is what I found out via Wikipedia:
Huntington’s Disease is a neurodegenerative genetic disorder that affects muscle coordination and leads to cognitive decline and dementia. It typically becomes noticeable in middle age. HD is the most common genetic cause of abnormal involuntary writhing movements called chorea. Symptoms of Huntington's disease commonly become noticeable between the ages of 35 and 44 years, but they can begin at any age from infancy to old age.
It is also incurable.
Suddenly, I felt I was on a quagmire and I was sinking. I was shocked so I kept searching for articles about the disease. I read countless horror stories from the families of victims, of the quick decline into dementia, and how, as the disease was passed on, it got worse and the symptoms appeared at a younger age.
I couldn’t believe it. I sat behind my desk at work in complete despair. I had to leave the office and go to the bathroom to cry.
“How can this be? How can Erik not know the horrors of Huntington’s? How can he not have told me before?” All these thoughts rushed to my head, then came the realization that he must know and I felt terrible.
“How was he feeling? Was he afraid of finding out? Was he more terrified than I?”
I drove home that day in silence. I couldn’t even turn the radio on. All I wanted to do was see him and hug him and kiss him.
When I got home and he was there, cooking dinner, like nothing. “How are you? How was your day?” he asked. All I thought about was his strength and how he must be putting up this happy front for me, so I acted like nothing was happening. I needed to be strong for him.
The next day was the same. I got home and he asked me how I was. I said fine and then very politely and sweetly asked him if he had made an appointment with the doctor. He said he forgot, very matter-of-fact. My heart skipped a beat and I understood that he might be so scared of finding out, that he was putting it off. I changed the subject and tried to make conversation and talk about happy things.
I couldn’t stop researching the disease, I began to think about his family. Was his dad showing signs of dementia? Did his brother have the disease? Were they aware of the level of care they would need in the very near future?
That evening Erik told me he had not made a doctor’s appointment again. I swallowed my anguish and reminded myself to be strong, to smile and to be his rock.
My drive to and from work became a time for thinking, for imagining the worst, for crying, for meditating. At work I was barely functioning and my level of productivity was nonexistent. All I did was read about the disease.
There was an article in the New York Times about a woman who got a DNA test to see if she had the disease at 24, which she did. At that moment she knew she had an expiration date. She sacrificed herself to raise money and awareness for the disease. She fought with her mother who was against her taking the DNA test because it only meant that she had it too. She didn’t date because she didn’t want to fall in love and then have him take care of her in the end. She made arrangements for her ultimate demise into dementia.
The fourth day came and on my way home I thought of this woman and how there was a very real possibility that this was going to be his future and of the very real impossibility of having children. Suddenly I was in a rage. I was so angry at the world, at the universe. Why him? Why me? Why couldn’t we have a normal life, have kids and dogs and cats and grow old like everybody else? Is love like ours not allowed to exist?
I got home and I was a mess. Before he said anything, I asked him if he had made the doctor’s appointment. He said no and that was it. I had had it.
“Please make the appointment with the doctor. Please! Stop torturing me in this way. I have to know!” I yelled at him with tears in my eyes. He looked at me like I was crazy and said that he would, first thing in the morning.
I went to the bathroom and cried some more. He asked me if I was ok, and I said I was fine. I needed to keep it together, I thought, for him, for me.
This went on for five days. I would sit on the couch and stare at him as he watched TV. I wanted to cherish every moment because I knew our time together was limited. When it was obvious it was making Erik uncomfortable, I would stop and just hold his hand. At night, I would stay up watching him breathe, in and out, in and out, rhythmically and beautifully.
After one more unproductive day at the office, on my drive home, I didn’t think of anything. I took the Colorado exit on the I-5 and as it curved I said out loud “Ok God. If this is the way it’s going to be, fine. Let it be. Because I love him, I will accept not having children. I will accept caring for him, and I accept that he will eventually succumb to the disease. I just ask you to give me the knowledge, the strength and the patience I am going to need because this is going to be very hard.”
Then a miracle happened. I got home from work and found him in the kitchen. The first thing he said is that he had made the appointment and that he was going the following week.
I hugged him and kissed him and sat quietly on the couch. I waited a couple of minutes and asked something about his grandfather.
“Does your family ever talk about Huntington’s?” I asked.
“Huntington’s? Why would they talk about that?”
“Didn’t your grandfather die of Huntington’s?”
“No. He either died of Parkinson’s or Hodgkin's. I have to ask my parents. I told you that.”
What???? I realized that I had made a terrible mistake. Somehow I had misheard and combined both Parkinson’s and Hodgkin’s in my head and came up with Huntington’s - a disease I had never heard of.
I didn’t know whether to cry or laugh or bang my head against the wall or what. Five days I thought he was going to die! Not just pass away, die of a horrible disease that takes your mind, your thoughts, your physical abilities, everything. For five days I cried, I yelled, I played out all sorts of scenarios in my mind. For five days I was in total chaos.
And at the end of the fifth day, I realized that I loved Erik so much that I was willing to put myself aside, sacrifice not having children, and take care of him for the rest of his life. I loved him so much, I still wanted to marry him and spend my life with him.
Think of it what you will, but to me, it was a miracle. To me, it had been a test that I passed and in return, I was given clarity and the assurance that what we share is true love.
We laugh about it now. He still thinks I am crazy, but it doesn’t matter. We have a long life ahead of us, together.
(the word 'quagmire' was provided by Jessica Hopkins. Thanks, Jessica!)
(image by Paulina Merekiova)
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