Unlike my husband and daughter who are gifted with exceptional directional ability, I am non-directional. Thankfully I am equipped with other skills to navigate the route of our life, especially with Be The Change.
My life has been infinitely altered by Michael, his SIOD diagnosis, treatment courses and markedly the day he died March 10, 2005. There have been countless days of confusion and unknown direction because of it. Although Be The Change was born from that season, its purpose was clear and mapped long before the title became reality.
Be The Change represents the patient family perspective in healthcare using our real life experiences to strengthen relationships and create partnerships with healthcare providers, outside of medical crisis. Be The Change defines the patient-family-provider relationship and sets a course to a patient family perspective view of the provider perspective.
It took me a long time to realize that as a patient and family member, I came into the healthcare environment with a narrow scope. Despite my vast experience I was only considering what medical providers could do for me. Now much more humbly, I consider what we can do together. I wanted healthcare providers to see beyond the diagnosis and see me, Michael, and our family as real people, but was I willing to see them as real people too. It wasn’t until a unique experience with a neurologist did I fully comprehend what that meant.
Michael and I had been waiting over an hour for his neurology follow-up. Finally, the doctor came in apologizing for the long wait and briefly explained he was detained by a pediatric emergency in the hospital. Outside of words, his face communicated this had been a traumatic experience. I offered him a few minutes to regroup but he respectfully declined. The appointment continued but I knew we needed to alter the normal course of our conversation.
I am a “lets talk about our feelings” kind of person so I asked the neurologist, “What do you do when you leave this place after having a really tough day?” Without warning giant tears escaped from his eyes and he said, “I should ask you the same question, what do you do?”
The direction of our relationship changed instantly after that short emotional conversation. We saw each other in a different light and became partners not only in Michael’s healthcare decisions, but in life choices. Because I began to see him more humanly than medically, it gave way for him to do the same. My initial impression of, “I don’t like this doctor very much” changed considerably over the course of time. In the end, this neurologist profoundly impacted the days I had to resign to Michael’s life course.
Here’s the bottom line. We all have the same basic needs, whether you're a doctor or a mother of a sick boy and we are more the same than different. Each of us whether patient, family member or provider requires human understanding layered with compassion and is made vulnerable by medical situations.
Risking emotional connection might lead to a detour, but it's sure to Be The Change!