Friday, May 10, 2013
This week alone I have spoken directly with 3 families regarding rehabilitation facilities for brain injury. Unfortunately, their loved ones, with serious injury and facing long recoveries, have no options within our state. And so, once again families leave these familiar borders. Sadly, what those in the “industry” fail to realize is that once families leave for rehab and establish themselves within a system and within a nurturing environment outside of the confines of little Rhodie they are not likely to return to care within.
While there are many exciting things happening in the area of brain research in Rhode Island; Brown University holds a substantial purse, is making huge advancements in robotics and is collaborating with the VA – the general affected population cannot avail themselves of these services.
As an adult, Tori is fortunate to have a wonderful physiatrist and outpatient team at Vanderbilt Rehabilitation through Newport Hospital. As her mom and primary caregiver I provide and contract her day to day pt, ot and speech services. Her neurologic services are provided out of state because we do not have access to state of the art facilities and university level research in Rhode Island. We were told as much by the powers that be. It doesn’t mean it doesn’t exist – it just means it is not available in Rhode Island. So we went elsewhere to find it.
Soon we will travel to New York to be part of a major study regarding altered states of consciousness. We will be admitted to a hospital as part of a program delivered through a major university. It involves brain mapping and observation for Tori. I will also take part in a medical ethics study for family members. The portal for our entry into this program is our neurologist in Massachusetts. Had I not ventured outside of Rhode Island we would not have this opportunity. The phrase “If you build it they will come” for me transposes to” if I can find it we will go”.
Recovery is difficulty enough when tissue and tendons and neurons are ripped apart. It is even more so when families are ripped apart by distance.
Administrators from top notch facilities in our state continuously ask me for advice in reference to what families need and want. They also ask for my support in a physical, emotional and financial presence. I simply ask them to listen.
