Chronic pain is part of life for many people. We have a genetic collagen disorder in our family that causes migraines, muscle cramps, IBS and severe joint pain, amongst other things. I, am relatively pain free most of the time. Unfortunately, the same could not be said for my mother and cannot be said for my son Mark, my daughter Jennifer and for her children. This was something that was relatively accepted in our family until my grandson Rory became virtually incapacitated from pain as a young tot.
When Rory was an infant he was very calm and quiet. Any amount of activity was followed by a nap. He did not complain or act as though he was in any particular discomfort. He was just a very sweet baby. As he got a bit older, it became very obvious that he had major issues. He had trouble speaking, walking, climbing stairs, his eyesight deteriorated, he had poor dexterity and he had very little stamina. During the day, it was obvious that he was always suffering from some degree of pain. At night, he would wake up screaming in pain. Jennifer started taking him to doctors looking for answers and relief for him.
For several years, Jennifer took Rory to their family doctor, who in turn sent him to one specialist after another, who ordered one test or procedure after another. When tests came back negative for potentially fatal conditions, the doctors would advise Jennifer to give Rory pain medication and more pain medication and to be grateful that he was not dying. The fact that the quality of his life was no great hell did not register as an issue with them.
Eventually, it was determined that Rory suffered from some form of a genetic collagen disorder that he would eventually outgrow – not that my mother, who had lived to be 95, or my siblings who are in their 70’s, or my children who are in their 40’s had ever outgrown their chronic pain – but Rory would.
When Rory was about twelve, he was accepted as a patient by a physician who specialized in pain management. With his help, and a lot of work and encouragement from his entire family, Rory was able to work through his pain to the point where he was able to start building up muscle tone, which helped to make the pain manageable.
This spring, Rory graduated from elementary school. This fall, he started high school where he has been managing fairly well despite ongoing issues. He does extremely well academically. We are all happy for him and for how far he has come in managing his pain. However, it is still an issue and it remains to be seen how well he will function as life goes on.
The thing is, how long are medical practitioners going to obsess over the length of one’s life with no concern for the quality of that life? If medical practitioners and medical researchers do not feel that severe chronic pain is an issue worth addressing, who does?
Seclusion 101 with AnneMarie 