This blog post would be a lot sexier if it was the other kind of jeans. However, today we will be covering an issue that is as close to me as my own body, my own blood, my own genes.
Right off the bat, I am half adopted. Meaning, I didn’t know my father growing up, and was adopted by my dad/Mom’s husband when I was about six years old. He is your finest caliber hero man, I am a daddy’s girl, and that is a whole other blog post for a whole other time. Stay tuned.
Back to half adopted: there are a lot of things you don’t know about yourself when you don’t know your father, especially when you only know his name, haven’t seen his picture, don’t know anyone from his side of the family, nothing about your history, yada yada. But there was a specific set of practical and biological questions that took up considerable headspace growing up. Namely, are there any genetic illnesses, dispositions, or health concerns coming down the pipe line?
In those early getting to know you emails with my bio-dad, this is one of the first questions I brought up. When I asked the question, I didn’t have any signs of disability or illness. I was recovering from alcoholism, but had already survived the worst of that. Nature or nurture was moot in this instance. So I was really asking this question with the hope of reassurance. “Phew, I can finally put that to rest!” WRONG.
Not only did my biological grandmother die of a disease, it was a horrible progressive, neurodegenerative disease: amyotrophic laterals sclerosis, commonly known as ALS. Remember the ice bucket challenge? That’s the one. And I know it’s horrible because I watched ALS run through my Grandfather on my adopted side. It affected his speech first, we thought he was having strokes and it turned out the be ALS and it felt like a rapid decline after that.
Now you might be saying, wait-wait, don’t get so worked up, 90% of ALS cases or non-genetic. That’s what I told myself too! But there’s more: not only did my paternal grandma have ALS, but her mother had ALS too! And they tested her, she definitely had the gene. I asked my bio-father what kind of risk that meant for me personally and he said off hand, “Probably 50/50.” That was really upsetting. Luckily, it’s not accurate. Here is some science from the ALS Association [full article here]:
Someone with autosomal dominant FALS has one copy of the gene with a mutation and one copy of the gene without a mutation. A child born to someone with FALS has a 50% chance of inheriting the FALS gene mutation and a 50% chance of inheriting the gene without the mutation. This 1 in 2, or 50% chance, comes from the fact that a parent randomly passes on only one member of their gene pair. Even though parents often feel responsible for their children’s health, they have no control over which gene they pass on, just as their parent had no control which gene they passed onto their child. If a child does not inherit the gene mutation for FALS, they cannot pass it onto their children. Inheriting a gene for FALS does not guarantee a person will develop symptoms of ALS.
So my bio-father has a 50/50 chance. If he has it, then I have a 50/50 chance. If he doesn’t then I have a low chance of having that gene and I can’t hand it down to my daughter. It doesn’t eliminate risk completely, but it is a lot less worrisome. This is a good time to reflect: was it better to know or not know what was coming down the pipeline? Yes, not knowing was painful, but knowing is scary! I would say knowing I’m at risk of getting ALS is worse than having a vague sense of mystery genes that could hold anything. Then again at least I am getting the chance to reconcile it.
And how much more do I want to know? I asked my Zayde if I could take a genetic test and he said that he strongly discouraged it. In fact, he has strongly discouraged all of his children, including my father, from taking the test even though their risk is considerably higher. He said it would be one thing if there was anything to prevent it, but there isn’t. He said knowing would just be traumatic and unnecessary, because anyone of us could go at any moment for any other reason. It’s not like he is just turning a blind eye, he actually raises a lot of money toward researching ALS and is an organizer who is fights the cause passionately in my grandma’s name. It’s beautiful really. This is just his stance based on the current science.
He didn’t have me fully convinced, part of me feels like it could go two ways: a. I could find out that I don’t have the gene and not have to worry about this any more or b. I could find out I do have the gene and then get to make choices in my life that set me up for living the most awesome life possible with the time I have. I would also have time to make peace with it before it hit. Enter matrix metaphor.
Of course there are less sunny ways of looking at it: it could be devastating if I find out I have it, especially as it relates to my daughter, who would be at higher risk. How would I deal? Once I know, I cannot not know. That is a big risk: what if I take the test and then regret it. Maybe Zayde is right. And this thought line is a little left field for me, but what if test puts so much energy toward ALS that I actually activate a gene that triggers it. It’s like believing yourself to be sick makes you sick, I don’t know our minds are powerful. [There’s a whole segment about this phenomenon in This American Life episode #585, ACT I]. I don’t know if not knowing or knowing is better.
My mentor’s opinion was that coming to terms with this issue is not necessarily dependent on taking a test. She said if I do the work around that, it would benefit me around all issues of health and mortality. That is what this is ultimately: fear of my own mortality. The great human question has me to a certain extent. It is something we all most reconcile in our own ways, adoption issues or not, potential genetic diseases or not. Once it was framed for me like this, it was really freeing. I have since really worked on turning the question over in a spiritual sense: when fear or sadness or dread or anxiety around this issue comes up, I just turn it over again and again.
The result has been a shift in my attachment to the results. To me, it is totally normal to have to reconcile this, but how much do I really want to feed into this fear? There’s that old AA adage, “Pain is inevitable. Suffering is optional.” Where I think a reminiscent theory is developed more fully is in Holocaust survivor, Viktor Frankl’s Man’s Search for Meaning. He said:
What was really needed was a fundamental change in our attitude toward life. We had to learn ourselves and, furthermore, we had to teach the despairing men, that it did not really matter what we expected from life, but rather what life expected from us. We needed to stop asking about the meaning of life, and instead think of ourselves as those who were being questioned by life—daily and hourly. Our question must consist, not in talk and meditation, but in right action and in right conduct. Life ultimately means taking the responsibility to find the right answer to its problems and to fulfill the tasks which it constantly sets for each individual.
This book is amazing by the way, the fact that this man survived the Holocaust is incredible. Then he goes on to develop his theory of logotherapy, which is also A. useful and B. beautiful. Sure puts my shit into perspective. Turns out, there are questions more important than making a educated prediction on whether or not I am going to get ALS. How do I live a life worth living? What is important to me? What are my values? How do I live with integrity so my values match my actions? And then Frankl takes it a step further and smacks you with, it doesn’t really matter what you think about life it matters what you do each day! Wow. Way to take it home.
My other shift, is all about Tuesdays with Morrie. Couldn’t ask for a book that was more relevant for me and my situation. For one, Morrie had ALS. He was also Jewish and a Professor of Sociology, so talk about a man after my own heart. And in the book he is a sage of wisdom and all that is good in the world, during his time where he is dealing with the ravages of ALS. Maybe my dread with these cards is overstated. I could end up like Morrie, there are worse things. At least ALS is a disease where it gives you time to settle your affairs. There’s a silver lining for you.
Does this make me a blue pill? Did I already take the red pill? Who cares? I am going to go reread Tuesdays with Morrie. But let me tell you that it has taken me a lot of heart work and help to get to this point. I am going to celebrate these small victories.
And for an aside, though I may not have been directly talking about it, this does all have a connection to my multiple miscarriage. Potential genetic testing that may or may not be in my near future to access my chances for trying again. I know there is direct teachings from this lesson that can be applied to that area of life, and I haven’t fully done that work yet. I am just making a little space for it, here at the end. It’s all a process, but my resounding feeling is once again gratitude. I’m happy with my cards all around even if not everything is resolved, even if there is both pain and suffering. There is also work to do, and so much to live and enjoy in the meantime.