Friday, September 21, 2012


In honor of what would be my mother's 62nd birthday, please consider the alternate path her life could have taken had she been able to buy insurance with no preexisting condition exclusion. 

She could have gone to the doctor a decade ago when she first became unable to move and in excruciating pain, instead of waiting while she tried to find a policy that would cover her without a physical. Imagine how she wouldn't have waited years to start taking medicine, and could have taken it consistently, instead of only when she could get vouchers or samples from a drug company. Consider how she wouldn't have had to buy herself a wheelchair out-of-pocket when she had no income. Consider how she would have been able to keep her job, and have been able to provide for herself and her daughter, rather than caring for her disabled daughter from her own wheelchair while she waited YEARS for a broken system to finally deem her destitute enough to be worthy of assistance. 

The day before her 59th birthday, my mom was awarded Medicaid benefits. 

The safety net came too late. She was dead 20 months later. 

My mom's knees were bone-on-bone from rheumatoid arthritis, exacerbated by physical care she provided her daughter for 25 years. Both knees needed to be replaced. After her first knee replacement, as I waited to see her in recovery, her surgeon told me that my mom was remarkable, that in his experience, people in my mom's state weren't able to rally and get themselves well enough for surgery. He said he'd told her this, and she'd told him she'd prove him wrong. She did. Six months later, she was well enough to have her first knee replaced. Four months later, she walked me down the aisle at my wedding. It was amazing. That fall, she had a second surgery to fix the first after her weakened body could not heal correctly. In the spring, she was scheduled to have her second knee surgery, but it was delayed due to anemia. 

Then she died. 

In 2002, she could have just gone to the doctor and started taking medicine, and a lot of this might have been avoided. And if it was still needed, her knees could have been replaced five years earlier. She might have been able to keep a job and pay taxes, or continue to care for her daughter at home. And I might still have a mother. 

My mom pulled a bad card. She had a genetic predisposition to rheumatoid arthritis, and a very physically disabled daughter who required her constant physical care, and she did not have resources to fall back on. 

You might think that this wouldn't happen to you because you take better care of your affairs. Maybe you think she should have worked harder or saved better at some point in her life just in case she'd have a disabled child or become disabled herself. Maybe you blame her for getting sick, or even for having a disabled child. I choose to believe you don't think any of these things. 

In the wild, a disabled animal and its disabled offspring would die in the woods. But we aren't animals. We are people, and we live in a society. 

We agree that we are all equals, with the same intrinsic value and the same right to exist. And we know that it is by luck and luck alone the were born into the situation we were. We know that where we end up has a lot to do with where we start. We pay in to provide minimal assistance to those need it most. We are thankful when we don't need that support, glad it exists in case we do, and pray we never will. 

The safety net was too close to the ground to save my mom, but I hope with all my heart that if and when you need it, that it works for you. You are my equal and I wish you best, and hope you feel the same for me.

Happy 62nd birthday, Mom.


Unknown said...

Thank you for sharing lovely Lady :)

Anonymous said...

Well said. Amazing how you could write it so clearly. I'd have too much anger to relay a clear message. I Get it.

Anonymous said...

Thank you for sharing your story and that of your mother. I can't imagine your loss and I wish that things had gone very differently for you and for her. It's unbelievable that our society doesn't value everyones life regardless of ability to pay for care. I hope that in our lifetimes we see that change.

Keep speaking up! You are an amazing woman filled with so much love!


Tony said...

My favorite part of your wedding was "Book of Love," with your sister singing and your mom playing guitar. Miss you, Kim Kelly!

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