Today I had great plans. I was going to write a post about Jean Vanier and then spend the morning volunteering with a local not-for-profit. Neither of these things happened. Sadly my son had other plans. As I sit down to write this post it is 1:30 in the afternoon and I have only just been able to safely transfer my son to his wheelchair.
You see, when my son is in pain he becomes irritable and disorganized. He thrashes around, and since he weighs about 120lbs he can pack a punch. So much so that it is impossible to provide care when he is like this, and he has been like this more and more lately. During these times it is difficult to change his brief, connect his feeding tube, change his clothing, or to safely transfer him to his wheelchair. During these moments I primarily supervise him in the safety of his bed to ensure he doesn’t injure himself too badly. I say too badly because he inflicts minor injuries. He scratches his face, bites his arms, and bites his lips and tongue. I usually have to change the bed linen and clean the bed rails of streaked blood. (Sorry, about being graphic, but this blog is also about making the invisible challenges and pain of caregiving visible.)
This morning it was worse than I have ever seen and I have seen a fair bit. We’re not sure if this is related to puberty, rapid teenaged growth, or some internal pain. It sucks. We have a call in to his most responsible physician and are hoping to sort out some sort of pain management strategy. To say it was a morning from hell just doesn’t seem to capture the last few hours.
There is a substantial body of research that suggests that children’s pain is often poorly managed. Pain cannot be objectively measured like heart rate, or temperature, and is a highly subjective experience. Physicians, according to both research and my own personal experience, struggle to treat something they don’t well understand, particularly when they have concerns about the reliability of the reporting source. We know this is particularly true for non-verbal children with significant intellectual impairments like my son. This population tends to have pain that is poorly managed largely because it is poorly understood.
I have had physicians tell me point blank that they will not treat my son’s very obvious pain until they understand the source. I understand their need to locate any underlying medical concerns, but their inability to rapidly identify my son’s pain should not translate to his suffering. They really don’t like it when I point that out as they seem to think I am isolating a failing on their part rather than simply advocating for pain relief for my son.
Add to this the fact that my son’s body is very different from what is seen in medicine as the “normal” body and isolating pain can be challenging. My son has deformities related to his disabilities that can lead to pain. He has highly disordered muscle tone that can cause pain, particularly during the rapid growth of the teenaged years. The upshot of all this is that his pain, while very real, may be difficult to locate on an MRI, CAT scan, x-ray, and so on. And in the absence of these findings it means his pain is often untreated, or very poorly treated, by medical professionals.
What I find particularly fascinating is that physicians, while paying lip service to the value of a parent’s expertise about their complex child, often are hesitant to accept a parent’s interpretation of their child’s experiences, pain being one. I am my son’s primary advocate and a key source of interpretation of his experiences. As his primary caregiver who has journeyed with him for 17 years I can read him well. In fact I would argue there is a porousness to our respective bodies that allows me to become his voice when reporting symptoms. At some level physicians seem to accept this. For example, I have had a physician offer my son pain relief to address what he perceived as my discomfort with my son’s behavior. How it was lost that my son’s behavior might have been an expression of pain is beyond me. But it seemed that if the report of pain did not directly come from my (non-verbal) son it could not be trusted. Interestingly, by treating me via my son this physician implicitly communicated that there was a strong symbiotic relationship between the two of us, and that I understood and experienced my son’s pain in some clear way.
The medical model still struggles with this idea of the enmeshment of bodies. Or at least it seems to when played out in many physician’s offices. In science, bodies are seen as discrete entities despite emerging discussion of our intercorporeality – our deep bodily connection.
While I think this offers great promise for future research, today I simply hope that my son’s physician will hear my concern and will propose a plan to address my son’s very real pain.