Transformation In Process: Personal and Systemic

In many ways, my recent confrontation with the unwieldy and heartless Medicaid bureaucracy mirrors the experiences I wrote about in my memoir, A Long Awakening to Grace. I had naively believed that my daughter had achieved stability and I was past having to fight the system on her behalf.  The wisdom and trust in the Universe having our back that I wrote about acquiring in my memoir waned these past six weeks as frustration and fear arose once again. Transformation is a process, not an event, and I am only human.

I did not, however, lose my strength. I continued to fight the system on my daughter’s behalf. It took almost every ounce of energy I possessed.

I am grateful that I did not blame myself for our travails as I was wont to do in the past. And I am grateful that a manager at the Job Center confirmed that my daughter’s inaccurate reduction in disability benefits was not our fault. It was the result of errors related to their backed-up system.

I published my memoir because I hoped my journey would be of help to others … would in some way relieve the suffering of another.

I posted generously on Facebook about our recent situation because I knew my daughter and I were not the only ones caught in the morass. I wanted others to know what we were going through because our situation is just one example of how the system needs to be changed. And besides, I needed prayers and support to keep up the fight.

As difficult as it was, my disabled daughter has me as a cushion and an advocate for her. Many others do not have these resources. Their consequences are much worse than my daughters – possible eviction from inability to pay rent, inability to feed one’s family because of inaccurate deductions from benefits, inability to buy needed medications or seek healthcare, and other circumstances I can’t even imagine.

I posted on Facebook that once I understood what was precipitating the change in my daughter’s healthcare benefits, I felt like crying. Since her medical crisis two years ago, I have been thrilled with the care she received and had gone without for far too long. I relaxed. When I saw that coming to an end, I dipped into despair.

In a conversation with a woman from the Ohio Department of Medicaid, the fog cleared and I finally understood the nature of my daughter’s change in healthcare benefits. Hearing my despair, she brought God into the conversation and her hope that my daughter and I would learn what “He” was trying to teach us.

My social activist antenna sensed an opportunity to educate her. I asked her if she liked to read. She does. And so I recommended that she read my memoir to understand the challenges in seeking services for disabled children. I told her she seemed like a spiritual person and that my memoir recounts my spiritual journey dealing with all this. She said she would read it and would let me know her response to it.

I have a sneaky suspicion that God may have something for her to learn as well. I hope it inspires her to work for reform to the system.

We must imagine what God’s peace and justice look like on this earth, and we must begin the work of crafting structures, institutions, human realities that are the antithesis to division, hate, greed and scarcity, that anticipate and cultivate justice and goodness and peace.  ~Jack Jezreel

Yesterday as I wound my way through what is possible now, I did cry at the end of an interaction with a senior analyst at OSHIIP (Ohio Senior Health Insurance Information Program). He was so kind and helpful as I sorted out the next steps to take to ensure my daughter’s continuity of care. And he gave me the phone number to reach him directly, saying I could call him anytime I needed answers to questions. After six weeks of banging my head against the wall, I finally had direction and a human being who knows the system and can help. Receiving or witnessing kindness like this always reduces me to tears.

The choice we are making will make it possible for my daughter to continue to see her current providers, including the Visiting Physicians that we have been so happy with. Because her dental and vision insurance has ended, we will need to purchase those. My next step is to find appropriate providers.

Last night my stomach hurt from the stress and so today (Saturday), I am taking it easy. Beginning tomorrow I plan to resume my life after this jolting disruption. I want to thank all of you who kept us in your prayers and especially to those of you who offered concrete support. You helped keep me going. For that I am eternally grateful.