People have very different reactions to what I write and what I do.

Yesterday, for example, I got a note about the piece I wrote that complained I was being too much of a downer. Someone suggested I need a dog.

A couple of weeks ago, someone else complained about things I do and write elsewhere–saying I focus too much on politics. People want me to relax and have more fun and not worry so much about things over which I have little control.

Some of you may want to stop reading at this point. I am about to become both political and more bitter than sweet.

In 1968, the United States government declared the budget needed to be cut. While the overall budget continued to grow, there were cuts made in a number of programs in order to increase funding for other programs and create funds for new programs. That budget was signed into law by a Republican president after being passed by a Democrat controlled House and Senate.

One of the casualties of that budget was funding for a little-known form of cancer referred to as carcinoid syndrome. It was one of a number of rare cancers and rare diseases de-funded that year.

Jane was 14.

In 1980, Ronald Reagan was elected president, promising to lower taxes and decrease federal spending. He brought the phrases “zero-based budgeting” and “cost-benefit analysis.” With virtually no money being spent by anyone on CS for the preceding dozen years–that is what happens when you are reduced to relying on charity–we were still diagnosing very few cases of neuroendocrine cancer compared to other forms of cancer. Federal funding of NET/CS research failed the cost-benefit analysis test. We invaded Grenada instead.

The Democrat controlled House and Senate gave Republican President Reagan the tax cuts he asked for, as well as the increases in military spending the president said we needed to beat the Soviet Union.

Jane was in her late 20s and experiencing the initial onslaught of the disease. She was told it was all in her head and that she had IBS and that she should go home and either tough it out or find less stressful employment. A handful of major hospitals had equipment that might have revealed the tumor developing in her appendix, but few doctors would have known to order the tests–nor that the equipment they were hearing about might see something most of them had never heard of.

The Soviet Union collapsed. Suddenly there was a peace dividend and the budget found its way into the black. The “tax and spend” Democrats took part of the surplus and started paying down the national debt. Republicans entered into a “contract with America” and won the House and Senate. With  the help of Democratic President Bill Clinton, they passed NAFTA–sending American jobs to Mexico and elsewhere–and gutted welfare programs. But the budget continued to grow.

And nowhere in that growth was there money for research into NET/CS.

Jane and I were married by then. I watched the strength of her IBS attacks increase in frequency and strength year after year. I tried to get her to see doctors, but even when I succeeded they came back to the same diagnosis she had received in 1980–and each repetition of that diagnosis made it harder to get her to go to the doctor the next time.

George W. Bush came into office in 2001, pledging to lower taxes and make government smaller and more efficient. Even before September 11, it was clear that the federal budget would continue to increase. And after September 11, the country moved to a war footing. I truly expected, though, that  taxes would at least remain where they were–if not be increased–to pay for the war effort.

Instead, we lowered taxes and took the wars in Afghanistan and Iraq off the books, creating the illusion that the deficits we were running up were actually smaller than they were. And research money for obscure cancers and diseases with a mere 10,000 cases a year being diagnosed–that were not funded at all in the best of times–were unlikely to see much action under those circumstances–not when there were infidels to kill. President Bush said the best thing Americans could do to support the war effort was shop and go away on vacation.

By the time Barack Obama was inaugurated in 2009, no amount of new research money likely would have helped Jane beyond giving her a few more months of life. The tumors were growing rapidly in her liver. The insomnia had become chronic. The stomach cramps were increasingly debilitating. The H1N1 flu in October of that year nearly killed her.

But the truth is that political decisions made when she was 14 years old–and renewed every year for the rest of her life–bear responsibility for her death–and for all the suffering that preceded it.

Those decisions were made by both Democrats and Republicans–some of them people I voted for and respected. I want to believe that they made those decisions innocently and with the best off intentions.

But the more I learn about the political decisions of the last 45 years–the more I discover about the kinds of gross manipulations both parties and their allies have been engaged in over that time period–the more difficult I find it to believe in either group’s good intentions about anything.

We had a phrase back in the 1960s and ’70s for what has happened not only with NET/CS but also with neurofibromatosis, pulmonary fibrosis, and a host of other “minor” zebras: benign neglect. It was used originally on matters of race–and from the start it dripped with irony.

For those with these diseases, that neglect has been anything but benign. Rather, it has been a virtual death sentence little mitigated by “the kindness of strangers.” There is a grave on a hilltop in Fall River that stands witness to that statement.

But for now, charity is about all we have to work with.