as read at a vigil for Ted Kennedy, Sept 2, 2009
This past January, when the first call for collecting healthcare stories came out, I tried to write down my own experience. At that time, I had just begun to get feeling and strength back in my right hand and was too overwhelmed with Pain and Confusion to even begin to wrap my mind around what I had been going through.
Some months later, I am happy to say that I am recovered enough to be moving on with my life, but some things that I went through were so unfathomably inhumane, I am compelled to fight for Reform to prevent others from having to endure it.
The details of my health challenge would take hours to explain as with any major injury or illness, the experience is complex. But the challenges to getting the care that I needed is what I would like to share with you.
For most of my life, I have been Basically Healthy with a minimal use of medical interventions. This is part of why I was so shocked at what happened when I entered into the medical system. I knew there were many problems with the system, but I didn’t know that it was designed to, quite literally, destroy your life.
I call my story a Nightmare in Triplicate.
In April of 2006, I was 5 months from completing Graduate school. On my way to school one day, a woman missed a stop sign and t-boned my car. Later that day, in the hospital, I would never have imagined that it would take more than 3 years to put the pieces of my life back together.
At first my recovery was smooth. I spent the first 6 months learning to walk again and recovering from the head injuries. I plugged away at school, slowly, finding what used to be my daily tasks were taking a week or more.
By October, I had used up the entire $15,000 of personal injury protection from my car insurance and was shocked to discover that I was expected to accrue a balance for the remainder of my treatment until I was recovered enough to reach a settlement between my Auto Insurance and the insurance of the woman who hit me.
9 months after the accident, the pain in my right hand and arm which had been bothersome, but not overwhelming increased. I started losing sensation .leading to weakness, numbness, intense nerve pain and loss of function. My secondary insurance, a minimal policy I had through Grad school kicked in to cover the neurology appointments although the wait for the first appointment was almost 3 months.
It was 6 months before it was apparent what was wrong. After trying a number of modalities, it became clear that the damage was so severe that it would require a surgical intervention. Insurance covered all the tests/MRI's and Prescriptions during that time or so it appeared. I would discover later that they were actually waiting for their payment from the settlement as well.
The surgery would require I be taken care of for 4 months. Already I had used up all my savings and ran up two credit cards waiting to find out if I would ever get the use of my hand back again. I scheduled surgery and moved out of my apartment to be cared for by friends. 2 weeks before the surgery was scheduled, I got the first letter: Denial for coverage. Completely confused, I initiated the paperwork for a review…then an appeal… Then, on Dec 24th, Christmas Eve, I was sent a letter saying that I no longer Qualified for Insurance coverage.
It took 4 months of paperwork and negotiating, sometimes for 20 hours a week, to get back onto insurance. All the while, I was moving from friend to friend as I had no family in the area. I explored all my options, talked to all the groups and organizations I could find trying to understand how it was possible that in America, the only resources available to me was a list of women’s shelters and the local food bank. And even more than that, that my story was only one of thousands, many involving death and permanent disability all due to lack of access to care.
Once back on insurance, I pushed through with 3 layers of appeals until I finally reached someone who claimed in the end that it had been a "clerical error." 2 months later, I finally had the surgery.
The surgery was invasive and a long recovery in and of itself, with only a 50% chance of complete return of function. After already accumulating 9 months of expenses, staying with friends the whole time I had been waiting, the uncertainty and inhumanity of it all were almost too much to bear.
9 months of pain and pain killers
9 months of not-knowing if I would ever get my hand back
9 months of being treated as some kind of leech on society
9 months of wondering what I could possibly do in my life without a right hand that could pay off my debts.
The amount I had owed for student loans had been doubled by medical and personal debt since the accident.
6 months after the surgery, this past January, slowly at first and then more quickly, function began to return, the pain began to subside and I was relieved to see Obama push healthcare to the forefront of the national consciousness because it had been at the forefront of my consciousness for nearly 3 years already!
In April, at the 3 year mark, I had recovered enough to begin the settlement process. The
reckoning with the Auto Insurance company of the woman who hit me. Came to find out that there wasn’t enough money in the policy to cover the medical debts and legal fees, much less my personal debts.
3 years after the accident, I was finally recovered enough to finish school and start a career, but still headed for bankruptcy.
In closing I would like to share the two main lessons I learned in those three years:
1. When you are sick or injured, you don’t know what you need, so you need lots of help figuring it out.
2. Your close personal relationships are your most valuable resource.
So whomever you are standing next to tonight, whomever it is that you talk to most regularly during the week, be sure that it is someone who will take care of you when you are sick or injured because those are the relationships that need the be fostered and nurtured. Those are the jewels of your life, be sure to treasure them.
I am honored to be standing with you tonight.
Thank you.
