So I’ve been pondering … what caused me to lose my equanimity with a doctor’s office while advocating for my disabled daughter? Why did having to push buttons, be put on hold, be cut off, having to call again and push more buttons only to be told I’d have to get a referral from a PCP who is almost impossible to reach? Why was I weighed down by the absence of a promised returned phone call?
During my pondering, I discovered it is about more than this:
- Poor customer service
I worked in the healthcare industry when managed care took over. I witnessed firsthand the decimation of the addiction services we provided. Our in-patient program shrunk to the point we had to close it down.
The educational component of the family program I worked in was cut in half as was group therapy for family members. I could do little more than introduce them to and beg them to attend recovery meetings. More of my time was spent making calls to insurance companies advocating for extension of services, which too often were denied.
This I believe contributed to the opioid epidemic we experienced in our country, especially in Ohio. After retirement I witnessed program after program shutting down, including the two programs where I once worked.
When healthcare transitioned into a for-profit industry, money became more important than people. As money became the priority in so many industries, disconnection from care and concern grew exponentially. It makes me very sad.
This disconnection from care and concern led to chemically dependent families becoming sicker and sicker. And at a time when family therapy was needed most, my beloved career as an addictions family therapist died a slow and painful death. And I am still angry about it thirteen years after retirement.
Advocating for Nicole stirs up upsetting memories … and the fear that she will be denied as so many of my previous clients were.
My pondering led me to even more:
I: Being of Value
Because I now have a comfortable retirement, I can afford to purchase a Medicare Supplement that gives me the right to go to any doctor I chose. I don’t have to go through insurance companies and doctors to ask permission to see the doctor of my choice. I don’t have to face denials. It gives me some sense of some control over my destiny.
I am grateful that my daughter was approved for Social Security Disability and I resent that she had to fight so hard to get it. I know of others with Nicole’s disease who still don’t have it despite years of making application.
I am grateful that Governor Kasich approved Medicaid Expansion and Governor DeWine has made no moves to deny it. And I fear that on a political whim, it will be taken from her.
Everything becomes larger during a pandemic. Frankly, I could better handle decision-making just for myself. But handling it for her, as well, becomes overwhelming at times.
Her gynecologist not following through on addressing the issue identified in 2019 becomes weightier during a pandemic.
In this time when doctors are sometimes forced to choose who will get a ventilator and who won’t, my daughter is a low priority. I’ve heard other disabled people on TV naming their fears. As with other marginalized populations, people with disabilities are of low value in our culture and have had to fight for every bit of recognition they deserve.
I am also aware that at my age, I, too, would be a low priority. Elders, which I aspire to be, are also not of value in our culture.
So much for my illusion of control.
Under all that is an even more self-centered reason for my lack of equanimity.
I resent that my daughter does not have the same privilege regarding healthcare insurance and doctor selection that I enjoy.
But truth be told, why should either of us expect to benefit more than anyone else?
- Millions of people are without healthcare insurance in this wealthiest of all countries.
- Including children
- All racial groups have higher percentages of uninsured than Whites like us … with 20% for Blacks, 33% for Hispanics, and only 13% for Whites
- Racial and ethnic minorities tend to receive lower quality of care than nonminorities and patients of minority ethnicity experience greater morbidity and mortality from various chronic diseases than nonminorities
- For infant mortality, the U.S. ranks No. 33 out of 36 of the Organization for Economic Cooperation and Development countries
- Infant mortality among Blacks is more than twice as high as among Whites
- Pregnancy-related mortality is more than twice as high for Black women as for White women
- David Miliband, President & CEO of the International Rescue Committee reports that there is one doctor for every 300 persons in the USA. In Africa, there are 5000 persons for every doctor.
The list could go on and on.
And so my White American entitlement raises its ugly head.
Living with and caregiving my disabled daughter forces me to experience what so many disadvantaged people among us live with every day … some in dire circumstances the likes of which we can barely imagine.
My disabled daughter living with me gives me an opportunity to get a small taste of what it is like to be a marginalized person in the wealthiest country in the world. And I don’t like it when I have to interface with systems in search of services. As difficult as it is in my privileged situation, I can barely imagine what it is like for people of color in our country and even worse for those in developing parts of the world.
It is said that if you dig deep enough in a pile of manure, you might find a pony. My pony is that this situation forced me to open my White eyes and put my privilege in perspective … a good reminder the next time I’m faced with pushing buttons, being put on hold, being cut off, having to call back and push more buttons. It is possible to learn and grow from every detail in our lives and for that I am grateful.
I still believe that we ALL deserve to be treated with care and compassion. And so I need to find a way to put that belief into practice in order to address ways to change inhumane systems of disconnection and disempowerment.
Pauline Boss who I quoted in my last blog piece titled “Double Whammy” says we need to find creative ways to add meaning to the daily stress of living in a pandemic that saps our energy. She says it will give us the strength to endure.
Writing is the way I express my creativity and serves as a meaningful outlet. Posting it is my way of giving voice to my journey of becoming more conscious … what I believe the spiritual journey is all about.
This is where my pondering took me after posting “Double Whammy.” Today I interfaced with another medical office in preparation for my daughter’s appointment next week with her pulmonologist. (We still haven’t heard from the new gynecologist.) They had our appointment all screwed up … wrong doctor and wrong office. Good thing I called. And despite it all, I maintained my equanimity! The only thing I can control! Success!
My soul awakens. It’s a process and I’m on the journey.