by C.C. LeBlanc
Relocation would be very exhausting.
I was desperate to gain economic respite (relief). Rent would be half the price for 3 times the space — plus a fireplace, storage and garage. At first glance, moving to Wisconsin from the Boston area had everything I needed; hospitals and clinics, a bus system, near-by food co-ops, yarn store, libraries and lakes. It all felt so promising as my son and I drove westward, chiming, “New opportunities!”
I knew the actual move would be very exhausting, but did not anticipate the tsunami of post-concussion symptoms that would surface during the move: vestibular issues worsened, irritability, migraines and fatigue with a vengeance. Whenever we got lost this brought back panic attacks, mind going blank, incorrect words confusing my listener and eventually, another close friendship collapsed.
Working through healthcare system roadblocks
The dominant health care system’s gatekeeper (the one who controls access to care systems) wanted to review all my mild TBI medical records (from all the providers and sites) before scheduling me to even get to see a specialist — I sustained two concussions, about two months apart, in 2009. I started the report requests for all the previous providers, then realized the absurdity and expense of having to do this in order to find a primary caregiver or doctor that would address my TBI. No way was someone going to spend hours reading all that!!! Finding a primary physician accepting new Medicare patients is tough at any time, but having to condense my 6 year history created extreme nausea, left me physically shaky and quite sad. I mourned for doctors who understood and knew my history.
The way mild TBI affects me didn’t fit their categories of awareness, agency rules, and fiscal responsibilities. There was always some type of roadblock or something. I was fearful of riding the bus in my new location because I knew about the legality of concealed weapons and escalating racial tension. My TBI exaggerated the fears.
Reality and necessity choices
Once the cold arrived, I developed a dependency on my son, or a friend or a taxi to take where I needed to go, rather than a bus. The reality of spending the winter in my room hibernating with the denial of my dependency on others to function, my hatred of being disabled, and the reality of economic dependence, brought clarity and acceptance. Acceptance didn’t mean a total surrender or giving up, just giving up unproductive fighting. It meant developing a sense of peace within myself that I was not in the right place, then taking steady, manageable steps to increase the meaning and quality of my life by returning to live in a location that understands my mild TBI condition, and provides economic assistance as I work on achieving full independence. I moved back to Boston.
Before you move, carefully examine your needs for a meaningful quality of life. It’s priceless.
Creating a Checklist and Questions to ask before moving
- Can my current medical specialists refer me to comparable providers? If not, how far away are they?
- Are there equivalent support services available? If not, how will you cope without them?
- Map out ALL activities for accessibility and realistic energy/cognitive requirements: Doctors, dentist, therapists, drug store, laundry, bank, groceries, library, spiritual center, post office, haircuts, coffee shops, internet shops, and thrift stores, etc
- Can you stand or sit for an hour outdoors if you miss your connecting bus? Is there someone you can call ? Or, can you afford a taxi to give you a ride home? What back-up plans are available if you get stranded — missed bus?
- Is there a reasonably priced veterinarian in town? How will you and your pet get there?
- For non-life threatening emergencies, is an ambulance your only option for transport to the nearest urgent care or ER?
- How many nearby friends or family members are close by or able to come to you quickly? Are there accessible support groups or meetings, or social networks? Can you work on your passions and hobbies easily?
- Is public transportation disability friendly for your diagnosis and level of functioning?
- Do you know another person with similar needs who already lives there? How do they deal with all of the above?
- What are your top quality of life requirements? What is Plan B if it doesn’t work out there?