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  • Jeanne Lee

Post 73: A Personal Note - An Unexpected Connection

Updated: Oct 11, 2022

Writing this entry is a means of letting out and letting go of one of my frustrations as an advocate.

I consider any of us attempting to find help in any form - information, service, guidance, financial - on behalf of another person - child, spouse, neighbor, mom, granddad - an advocate. I imagine many of us have acted as an advocate at some point in our lives and will likely act as an advocate for various loved ones throughout the course of our lives.

When I imagine "fighting" the system - a behemoth with gaping jaws swallowing reams of paperwork filled with redundant information - for my loved one, I have to admit I feel intimidated at worst and exhausted at best. I try my best to imagine myself "coaxing" the system - a behemoth with a voracious appetite for forms, but perhaps more responsive with soothing caresses along its back - and I feel a bit more patient towards the system.

Of course, once I start interacting with "the system," it takes active mental, emotional, and sometimes physical work to maintain this patience.

For several months, I had driven around town paying the required $10 fee at this or that specialty clinic for copies of my loved one's medical records, calling a rotating group of clinics every several days to learn when these records could be picked up. I visited (multiple times) two hospitals and seven clinics. I then scanned the hundred or so pages in small batches to send them via email, each email limited to three to five attachments, to an out of state clinic that specializes in my loved one's medical condition. The clinic coordinator at the receiving end had told me that they did not receive all the records via fax and that they were not able to open the link to the medical record PDF files, hence my taking on the tedious chore of sending these records over six emails. With a few additional requirements for me to complete, the process of obtaining a new patient appointment at this out of state specialty clinic took about four months of active advocating.

I feel troubled when I think of someone who is not familiar with technology, who is not able to drive around town, who may not be able to afford $10 for two sheets of paper with a doctor's signature - how much falls through the cracks and how many advocates give up because the system is so difficult to navigate?

I am now in the process of advocating for speech therapy services through our public school system for one of my children. I initially made the mistake of expecting a simple one day process to request an evaluation. I could feel my shoulders slump as I learned over the next hour that I would have to complete numerous questionnaire pages and obtain multiple physicians' signatures, as the first of several steps, even prior to obtaining a speech therapy evaluation appointment time.

The principal of this school took the time to walk alongside me as I walked from one area of the school to the other, from one office to another. He looked at my disheartened expression and tense posture and echoed to me the same words my palliative care colleagues and I (read Post 1: What Exactly Does a Palliative Care Specialist Do?) say to encourage patients and caregivers on their advocacy journey.

He said, "Don't think you're asking for favors! Your son has a right to this service, so you should be demanding this service! You already paid tax dollars for this. There may be some upfront work, but it will be worth it in the end when your son gets what he needs. Here's my card. Call me if you have questions, and let's avoid delays."

I was surprised to find encouragement and a kindred soul that day in the form of a friendly bureaucrat.

Truly, we can find connection in the unlikeliest places, even during especially trying moments on our advocacy journey.


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