Friday, September 11, 2015

Empathy on recovery road

Mr. PNU's eval three weeks ago with Matt Hansen at Neuroworx

While Mr. PNU slaved through the rigors of Matt Hansen's prescribed therapy, I sat for a few minutes yesterday with, Dale Hull, the white-haired, shockingly blue-eyed executive director of Neuroworx

Dale, himself, is fifteen years post spinal chord injury, walking with two canes, continuing his life in medicine as he'd intended prior to paralysis, although down a different path of patient care.

I gave him the basic details of our story. I told him about growing up with a parent with traumatic brain injury, and my experience with the emotional and physical changes neurologic incidents can induce. I recounted waiting for Mr. PNU's prognosis, telling myself I could handle anything as long as the stroke didn't cause him to become violent. I told him about being married only six months before Mr. PNU's stroke, and how after what I'd been through with previous spouses, being the wife of a stroke survivor, one month from my first anniversary was the happiest I've ever been. I shared the frustration at seeing my husband's substandard level of care when I'm not doing the work myself in the nursing home.

Dale listened and then discussed the need for a redefinition of time, and for patience in the recovery process. His own recovery spanned three and a half years. We talked about the trade-off of ability for the personal growth and insight Mr. PNU is gaining, and Dale confided that if possible, he would reverse his spinal chord injury, but not at the expense of losing everything he's learned in the past fifteen years. 

I admitted to him the sad shape of financial prospects for our future, and our desperation to find a way to bring my husband home. He agreed that sadly, with Medicaid restrictions on income and saved assets, the circumstance of being trapped in poverty is predictably common with severe neurologic trauma. He also expressed deep frustration that the government is willing to spend thousands of Medicaid dollars each month for nursing home care, but unwilling to help provide accessible housing for family members willing to care for disabled loved ones at home at a fraction of that cost.

Dale passed along the names of a few authors whose work addresses neuro-plasticity and recovery from neurological trauma, including Norman Doidge. He directed me to apply for a financial aid scholarship for continued therapy from Neuroworx, based off of Matt's evaluation of Mr. PNU's potential gains and our income. And then he told me something that took me off guard, something I've thought to myself privately—felt deeply—but that I'd never heard from anyone since the stroke. He said I needed to know that besides my husband, no one will ever understand the scope of what we're going through. And that even fifteen years out, he still has bad spinal chord injury days where the loss weighs heavy, regardless of how far he's come or the difference he's making in the lives of paralysis victims like my husband.

I looked at him squarely and said, "And Dale, that's okay."

His blue eyes glistened in the light, and he nodded. "Yes. It is."

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