Maine Is Still My Best Medicine: An Update on the Path From Sibling to Sibling–Parent

Abstract

Three years ago, I wrote about my relationship with my sister Amelia, a person with mild intellectual disability. Specifically, I wrote about my struggle to accept, but more important to implement, the social model of disability in my life as her combined sibling–parent figure. At that time, we were doing well. In many ways, we are still doing well...but life has changed a lot on my own path from sibling to sibling–parent. How different things are now compared with 2 years ago when I wrote, ‘‘The Maine Effect, or How I Finally Embraced the Social Model of Disability’’ (Cameron, 2008). Our family coined the phrase ‘‘the Maine effect’’ when referring to Amelia’s enjoyment at the Maine camp each summer. In my essay, I noted that ‘‘the self-inflicted bloody noses, hair pulling, skin-picking and otherwise violent tantrums that we feared on a moment-by-moment basis at home were but rare visitors at the lake, replaced instead by what felt to us like ‘a clear sky and a calm soul’’’ (p. 56). Since that time, our father’s disability has worsened significantly and all formal parental roles and responsibilities are now mine. I am the agency contact, the underwear buyer, the doctor’s visit companion, the health care proxy, and the representative payee. It has been a rough adjustment for everyone involved—my parents, my husband, Amelia, all of the social service system workers involved in our case—and for me too. Our father’s worsening health is very hard for Amelia to cope with and has made the transition into this new phase of our sibling relationship all the more difficult (e.g., ‘‘You’re not Daddy!’’ has become a common refrain). Dad’s illness is Amelia’s selfdescribed reason for a number of new psychiatric hospitalizations, despite an uptick in therapy appointments, more time with my husband and me at our home, and maintenance of the formerly magic level of Risperdal. Recently, I sat with Amelia in the psychiatric emergency room, waiting to hear if her group home would be taking her back in after a particularly bad incident. She had landed there after engaging in an impromptu home invasion in her group home’s neighborhood, replete with the entire police department of her town showing up. Amelia looked at me sheepishly and said, ‘‘But you are still going to take me to Maine, right? Maine is still my best medicine.’’ Making the connection between bad behavior and consequences has never worked in the long term for Amelia. I also cannot stomach the thought of denying her the happiness and fulfillment she seems to find in the Maine wilderness. Although my father cannot travel with the family to our camp anymore, the Maine camp is still in place, still wild and remote, and still ripe with the possibility of living life one’s own way. However, both the tax burden and the upkeep of the ramshackle, ‘‘off of the grid,’’ more-than-rural hideout are fast approaching the realm of what is financially and emotionally impossible for me to maintain. I have accepted the reality that I am not able to continue this tradition for Amelia, at least not in the exact vein of the way my parents did. Sitting at her bedside in the emergency room as she dozed, I took a moment for myself, thinking ‘‘I need to find a new way to keep her ‘Maine medicine’ going.’’ I reflected on our last summer in Maine. At the start of the trip, I had spent the best part of a day in the local emergency room as a result of her pneumonia on top of both a vaginal infection and a nasty intestinal infection. The doctors and nurses we met with had urged me to do my best to keep her very clean to reduce the chance of reinfection. * Note. ‘‘Liz Cameron,’’ PhD, a pseudonym, is an assistant professor of social work. ‘‘Amelia Cameron,’’ also a pseudonym, lives and works in her community. Both sisters hope to continue enjoying Maine and its medicine—the Maine effect—for as long as possible. INTELLECTUAL AND DEVELOPMENTAL DISABILITIES VOLUME 48, NUMBER 6: 478–479 | DECEMBER 2010