My Family and Mental Illness (Part 5): Whoever Created Neurontin Deserves a Nobel Prize

Sheldon’s note: If you haven’t read any of the previous post in this series, please do so, starting with post 1, before proceeding to read this post.

In post 4, I talked about my father’s massive seizures, one of his doctors started prescribing the medication Neurontin for his seizures. It made a big difference immediately, the seizures slowed down dramatically, though they didn’t stop completely for about 2 years, and there was a good unintended consequence to it, slowly, but surely, his mind gradually started to clear.

We were happy to see this progress, though it would be years before he returned to a state somewhat like we knew him before. Life was finally starting to look up for us in many ways, but finances were still a problem. We started out with about $20,000 that was left from my dad’s 401k, what was left after taxes, early withdrawal penalties, and losses on the stock market, and about $3,000 in savings.

We didn’t realize it then, but this would have to last us around a year, paying our normal bills, and the leftover medical bills. Some doctors were cooperative, accepting our requests to just simply accept what the insurance gave them for the tests and doctor’s visits, and not pursue us for any more money.

Once they heard about our situation, most were very willing to do so, since they were still receiving 80% of what they would normally charge from his insurance (I wonder if some of them wrote the extra amount off on taxes as a loss, knowing how the US tax code works). We still had to stretch the money, though, our house and cars had been paid off several years before this happened, which was a big help, but we were used to having about $40,000 a year to spend, and we didn’t know how long this money was going to have to last.

We tried reaching out for help from government agencies, first starting out with Illinois’ Department of Human Services, which oversees programs like Illinois Link, (which used to be commonly known as “food stamps”, and many people still call it that to this day), Medicaid and other government aid programs.

Illinois has an awful state government, it’s always had a well deserved reputation of being mismanaged, slow to act, and also very corrupt (our last two governors are convicted felons now, look up George Ryan and Rod Blagojevich). Unfortunately, mismanagement and incompetence is what we ran into there. No one would hardly answer the phones when we would call, we would leave voicemail messages that no one would respond to, for up to a week, if at all.

Often times, we would have to wait in an hour long line, in person, just to get an appointment with a caseworker, and they often weren’t much help. We filled out the piles of forms that they needed us to file before they would even review out application for aid, which had many questions about our finances, and very personal questions about the family, and our family circumstances. The application was filed, we meet with the case worker, who could really care less about his job, it seemed, everyone was just a number, no sense of compassion or willingness to help people.

As we went into the offices to talk to him, we quickly figured out why we could never get anyone on the phone, we saw worker after worker ignoring their phones ringing incessantly, while the people just stood around gossiping.

Looking back now, it reminds me of the scene from the movie The Blind Side, where the mother, Leigh Anne Tuohy, played by Sandra Bullock, tells off a social services worker who was too busy gossiping and doing nothing, and wouldn’t get the foster care records for the teen who would end up becoming her adopted son, so that he could attend school with her kids.

In the end, the case worker told us later that the only help they would give us was putting all of us on Medicaid, which was a big help, to their credit, but we needed much more than that. He was explaining to us that they felt we had too much money in the bank accounts (Hello! We had no income coming in, and that money wasn’t going to last long), and had too many assets (a house paid for, worth about $35,000 at the time, and they even counted life insurance, of all things, as an asset in their formula).

I kind of hesitated to talk about this, because it all sounds like an old right-wing cliché/stereotype of how government agencies are, but that is indeed what we saw and experienced. Perhaps some states are better at this than Illinois’ broken system is.

Little did we know that a few months later, another government agency would step in to help, in a very big way.

To be continued in post 6