“Courage is not the absence of fear, but rather the assessment that something else is more important than fear.”
I've been thinking a lot about courage lately. I love the quote from FDR, "Courage is not the absence of fear, but rather the assessment that somethings else is more important than fear." To say that the past few months have tested our family would be a vast understatement. At the same time, I've never doubted our ability to do what needs to be done. That isn't hubris on my part, it's extreme pragmatism. What is the alternative? Alex can't get well without us. And we've been tested before. If I've learned anything in the last thirty years, it's that whatever is thrown at us, John and I will be able to face it together.
But I'd like to put this idea of cancer and autism in some context. Imagine getting a cancer diagnosis and you understand what you're being told, but you are unable to ask any questions, express your fears, or talk about your feelings or concerns in any way. You are completely at the mercy of those around you to make your decisions for you, interpret what you're going through, and attempt to meet your needs. Maybe they guess right, but maybe they guess wrong. We operate under the assumption, as we always have, that Alex understands everything we say. And we do our best to interpret and guess what he wants and needs. But we don't know. We never know for sure. Are we explaining things to him in enough detail? Too much? Too little? Are there questions he has that we aren't asking for him? There is tremendous responsibility in trying to be Alex's voice.
Doctors and medical procedures have always been a source of anxiety for Alex. I remember when he was a toddler and we'd have to go to the doctor for routine illnesses. It was quite a challenge to keep him calm and occupied in the waiting room. We would play, sing songs, and try to distract him. And he was like the Tasmanian Devil in terms of his energy level. Just keeping track of him was a full time job.
As he got older, it was easier to keep him corralled, but his anxiety increased. A trip to the doctor resulted in a full-blown panic attack. We didn't realize what they were at first, but we learned. His pulse would race, his breathing was shallow, and he'd break out in a heat rash.
Other than routine illnesses (and he has always been a pretty healthy guy), his only doctor's visits were related to his autism. That meant sitting in a room with everyone talking about him and picking apart all of his behaviors. Let me tell you, Alex is not a fan. He has learned to tolerate it, but he struggles. There is lots of rocking and vocalizing during a doctor's appointment, even with his psych who has been his doctor for ten years.
John and I have always worried about a major medical issue with Alex. How would we know if he were sick? How would he handle treatment? Someone we know would get appendicitis and we'd think, "How would we know? Would Alex be able to tell us?" It was a worry that was always in the background.
He had a few minor things over the years. He had wisdom teeth out under general anesthesia and a benign bone tumor removed from his knee. Both were out-patient procedures and Alex did well. It was just enough, we told ourselves, so that Alex had some idea of how hospitals work. Maybe then, if something major happened, he wouldn't have to be so frightened.
But cancer? I never, ever let my mind go there. Who does? The day I found the lump in Alex's neck, my heart sank. I knew it couldn't be good, but I tried to hold the panic at bay. Don't panic until there's something to panic about. Over the next four weeks, we kept telling ourselves that.
Surgery was the first hurdle. How would he handle surgery? How would he handle the pain, the IV, the stay in the hospital? He was amazing with everything. Every step of the way, he did what needed to be done. Anything that was within his control, he did. And more, really. The two biggest components of Alex's autism are his communication disorder and anxiety. All of the medications he takes are to regulate mood and help him deal with anxiety. The only thing he was unable to do prior to surgery was the needle biopsy of his neck. But really, would you be able to lay perfectly still while a stranger stuck a huge needled into your neck, where you couldn't see what they were doing?
The surgery went beautifully. They got all of the tumor. Alex was a champ. We just had to wait for the results of the biopsy. At first, we were able to convince ourselves the news would be good and we'd put this challenge behind us. It turns out, we weren't going to be that lucky.
The day they said, "cancer," was terrifying for the obvious reasons, but also because of his autism. How will his disability affect his treatment? How will the medical professionals be able to adapt to and understand his needs? Will he be able to get the treatment he needs? There were so many questions, and no answers. Try and Google "cancer" and "autism." You'll find nothing. We'd have to blaze this trail ourselves.
In discussing and planning Alex's treatment, his doctor has been fantastic. Each decision that has to be made follows the protocols and guidelines that have been established for Hodgkins Lymphoma, but then we have to take Alex's special needs into account. We feel that Alex's doctors have done a great job listening to us.
Chemotherapy is the treatment for Hodgkins. We weren't sure in the beginning how Alex would do, but we felt that this was something that Alex would be able to manage. PET scans were necessary. We told the doctor Alex would have to be sedated. That's not common, but it could be done.
Radiation is sometimes part of the treatment plan, especially with "bulky" disease, which Alex has. In learning about radiation, it just doesn't seem like this is something Alex will be able to do. He can't be sedated (the treatment is daily for 30 days) and he can't be still enough for the 30 minute treatment for it to be safe. If he moves, his heart, lungs, or neck would be irradiated. In consultation with the lymphoma specialist, he said he wouldn't recommend radiation anyway, because of the risks to Alex later in life. He said this would be his recommendation, even if Alex would be able to stay perfectly still for the radiation treatments.
Now, we have five chemo treatments completed. We have more information from a second PET scan. We know that the treatment is working. And we also know what Alex is capable of. Alex exemplifies FDR's definition of courage. None of this has been easy for Alex, but he does it anyway.
In the past three months, he's undergone surgery, two sedated PET scans, weekly blood draws, numerous doctor's appointments and consultations, and five chemotherapy treatments. I think he's been stuck by more needles than I have in my entire life.
When he walks into the oncology office, he's anxious. It's an interesting mix, actually. He's less anxious than he was at first because now he knows the people, the environment, and the routine. He now has a clear understanding of exactly what will happen to him. At the same time, there is clear anxiety because he now has a clear understanding of exactly what will happen to him. He has to get poked to have blood drawn, and he has to get poked for a peripheral IV. (We haven't done the port and at this point don't plan to because of the risk that Alex will pick at the port and damage it or cause injury to himself.)
It's amazing to watch him get the IV. It usually takes two or three sticks to get the right spot. Alex twitches prior and pulls his arm away, but as soon as Ben is really trying to put the needle in, Alex doesn't move a muscle. He is absolutely still, and watches the whole procedure intently. Alex needs to be very still, and to not pick at the IV, for the whole four to five hours of chemo because the medications that we are pumping directly into his veins could ulcerate his skin if they leak out of the vein.
Alex also knows that for about three days after chemo he'll be tired beyond belief. I'm sure that is part of his anxiety as we begin the treatment. He's very patient all afternoon, until about the last hour. That's when we all start getting antsy. Last time it took a little extra anti-anxiety medication to help him through. Alex started vocalizing rather loudly at one point, and the doctor peeked his head in the door, concerned. "Is he okay?" We assured the doctor that Alex would be okay, but that he was just stressed.
Make no mistake, this is hard for Alex. It isn't that he doesn't understand or doesn't mind. Personally, I think it's proof that he does understand and he knows what is required of him. Just like the quote from FDR, Alex has "made the assessment that something is more important than fear." I admire Alex's courage.
I like to think that trust is a big part of how Alex is making it through of all this. When he was first diagnosed with autism, my greatest fear was that he wouldn't be able to love us or to know that we loved him. Everything we did in terms of working with his disability was driven by the idea that we wanted him to understand love, and to know that he is loved. I didn't care if he could tie his shoes by himself (he can't, by the way, and it's no big deal) but I wanted him to know that his family loved him and would be there for him. Alex has to have a lot of trust right now - trust in his family, trust in the doctors and nurses who are helping us, trust in his caregivers and housemates. We all have to trust each other.
And then there's resiliency. The smile that we see so often. His positive attitude is there, every day; even on his hardest days. That, to me, is courage.
Now, when I think of courage, I think of Alex. I think we all could learn a lot from him.