In October of 2010, a friend and coworker learned that her daughter, then age 3, had leukemia. TM’s daughter was the same age as AB – we had been pregnant at the same time. I remember feeling that although leukemia and autism are not at all the same thing, we did have something in common, which was that there was a serious issue going on with our child. I felt that I should reach out to her, and so I sent her this message:
“I heard your news, and wanted to say something. But I’m not quite sure what to say, except that I’m so very sorry. The only frame of reference I have is SB’s diagnosis, which I know is a different thing. But I do remember feeling like my world was falling apart, and his diagnosis was the only thing I could think about all day and all night long. I mulled the word “autism” over and over in my brain like it was some evil, foreign word I was trying to learn to understand. And I felt like no one else in the world could possibly have any problems even close to being as big as mine, and that everyone else should just shut up about their stupid problems and complaints. And even when someone tried to say something nice, I always took it badly, like they were insulting me somehow, because of course, I was completely irrational. I can only imagine that you must be feeling some of those same things.”
I meant every word, of course. I remember going to a band rehearsal only a few days after SB’s diagnosis, and one of my coworkers was complaining about another coworker being out of tune. Or maybe he was complaining about ME being out of tune. I don’t really remember – that time period is pretty foggy in my brain. But I do clearly remember thinking, “How am I supposed to give a shit about the intonation of my throat tone G? THERE IS SOMETHING WRONG WITH MY CHILD!!!!!”
(On a side note, I have tried to shift my attitude in recent years, and try not to feel that there is something “wrong” with him. There is just something different about him, and he needs extra help in areas that are hard for him. But that’s not what this post is about.)
Of course, I felt a number of emotions upon hearing TM’s news. Sadness, anger, fear, empathy…all reasonable emotions, right? And then one emotion hit me by surprise. Jealousy.
What kind of sick person is jealous of cancer? Me, apparently. What that little girl, and her family, was about to go through was going to be horrible. No one should have to suffer through that, especially not a 3-year-old. She was about to endure more than 2 years of poisonous chemotherapy treatments, spinal taps, and other uncomfortable procedures, and all of the terrible side effects that go along with them. Why in the world was I jealous? Because her treatment had a specific END DATE.
You see, I am not one of those people who believe that autism can be cured. “Cure” is simply a word I do not use when it comes to autism. I DO believe that with therapy, hard work, perseverance, and the right supportive therapists and teachers, both of my children will probably be able to navigate this world independently someday. But they will always have difficulties with certain things, such as interacting appropriately with others. They will constantly be using strategies to overcome their difficulties, much in the same way that I try to overcome my ridiculous lack of directional ability by using a GPS, studying maps, and keeping a sense of humor. They may become so good at those strategies that the people around them aren’t even aware of their autism, or they may always present as strange and quirky people. I think that they will have at least a few friends, but I wonder if they will ever date or marry. I am fairly hopeful, at this point, that they will both be able to acquire and keep a job that is meaningful to them, and will feel that they have a sense of purpose. But I do not believe that they will ever be cured of autism. It is a part of who they are, and always will be. This makes me terribly sad at times, because no one wants to see their child suffer or struggle.
So on some illogical plane of existence, I felt jealous of this parent who had to watch her child suffer and struggle, but only for a defined period of time, and then it would be over. Then her daughter could go back to being the normal child she had been before her diagnosis. Wouldn’t that be better than a lifetime of suffering and struggling? (Yes, I realize that I am glossing over the very obvious fact that I have never once had to worry that either of my children would lose their life to autism. This is one of the facts that make autism and cancer very, very different. But we are inside MY crazy thoughts here, so just roll with it, OK?)
I also felt a (slightly) healthier version of jealousy when I learned that TM’s daughter was admitted to the hospital on the same day as her diagnosis, and began chemotherapy treatments immediately. That very day! I wanted to pump my fist in the air and shout, “Yeah! You get on it! You kick that cancer’s ass and you do it NOW!” There was an agonizing FOUR MONTHS in between SB’s diagnosis and his first therapy session, and also four months between his diagnosis and his first day of special ed preschool. Things that slow the process down are finding a provider, sometimes being put on a waiting list, haggling with insurance, and many, many assessments before school and treatment can begin. Even when you have a diagnosis of “Classic Autism” from a Developmental Pediatrician, everyone seems to want to do their own assessment, just to be sure. Those four months seemed to last years to me, because I knew that we needed to be doing SOMETHING, and that we were losing valuable time, but just couldn’t start treatment until all the ducks were in a row. So to learn that TM’s daughter was starting treatment on the same day of her diagnosis made me delighted for both of them. I felt a little bit of happy along with my jealousy that they did not have to endure months of waiting for something to start.
I did talk with TM before writing this post, because even though I am not using her name, anyone who knows both of us will know exactly who I am talking about. And I admitted, with a great deal of embarrassment, that I had been jealous of the fact that cancer treatment has an end date, and autism treatment does not. It turns out that I was somewhat mistaken. There are a wide variety of late effects of chemotherapy, which are side effects of cancer treatment that can become apparent after treatment has ended, in many cases years later. She told me that some of her family members are showing more anxiety about the late effects that may or may not show up than they did about the actual chemo treatment. I suppose this makes sense. The side effects of chemotherapy are pretty well known and expected, and the unknown is ALWAYS scarier than the known. And they will forever have the fear, of course, that the cancer may return. She asked me if any parent, whether their child has issues or not, ever truly stops worrying about their child. I’m not sure, since I don’t have any children without “issues!” But I imagine the answer to that question is no.
I realize that I have over-simplified a lot of things about autism and cancer to explain here what I was feeling, and two years later I am certain that those feelings of jealousy have long passed. What is the point of admitting all of this, anyway? I guess my point is the same as it was in my original post with the same title, Inside the thoughts of a crazy woman. If your child has recently received an autism diagnosis, or a diagnosis of any other disease or disorder, you will probably have strange thoughts that go through your mind. Thoughts that surprise you, scare you, and maybe even thoughts that make you think you are a horrible person for thinking such things. But you are not a horrible person. You are a normal person, reacting to something that is very distressing and upsetting. Your thoughts and feelings may be a bit crazy for a while, and that’s normal. Well, I think it’s normal. OK, maybe I’m not sure if it’s normal, but I CAN tell you for certain that you are not alone.