Beast of Burden

I've been reflecting lately on the concept of people being a "burden to society." The topic is in the air with our economy in the tank and the political battles over extending funding for unemployment benefits. In modern U.S. politics, one of the defining differences between Republicans and Democrats is about whether to see those who can't provide for themselves as a burden to society or as vulnerable members who deserve our support, because "there, but for grace, go I."

Being a burden is not an abstract concept for anyone who lives with a chronic, debilitating illness.  While the levels of financial, social and emotional support vary for each of us, I feel fairly confident in stating that almost every person living with illness has had to grapple, at some point, with feeling that she has become nothing but a burden.

Beyond the cultural messaging and the immediate context of illness, I was also put in the ring with this beast by my father. While some of the things I will describe are brutally blatant, I know that women, throughout history, have been handed this legacy. A legacy of having our very worth as a human being quantified by dowries and zeroed out if there is not a father or husband to claim us. Certainly, it is less so in our so-called feminist era, but the inherited psycho-social patterns aren't erased that quickly. We still see the messaging everywhere. This is a very known issue. It's Women Studies 101.  I probably can't add anything to the body of work on the larger cultural phenomenon.

What I can speak to is the impact on a personal level, both as a woman and as a person living with chronic illness.

My father had a knack for rather crassly expressing that which is generally more subtly expressed in our society, particularly when it came to male/female relations. Sometimes I'm thankful for that. At least it's made very clear what you're up against. For example, he made it very clear that he considered children a financial burden which he looked forward to being released from. He often said to me when I was a child, "when you're 18, you're no longer my responsibility." He said it as though he was relishing the day. Though he had always told me to do well in school, because I could go to any college I got into, when the time came, he paid for only one year. I turned 18 during my freshman year. In the summer before my sophomore year he told me I had to pay for it myself from then on. Later, even when I asked him to co-sign a $17,000 student loan, which I was paying, he would tell me that I had owed him that money because it was on his credit report. Somehow, I owed both the lender and him.

I grew up with only sisters, no brothers. So, I have no way of knowing if the concept of "children as financial burden" would have applied to sons. There are hints, however. As I got good grades and was an accomplished athlete in school, my father would encourage me to do anything I could to ensure that I would be able to provide for myself as an adult. That's a fine principle, until his personal motivation for that is explained. The subject of being self-sustaining was always coupled with "because otherwise you'll be a burden to a man." As adults, my sisters and I learned that as long as we were self-sufficient or transferred our burdensome selves onto another man's accounts he loved us and was proud of us. If another man would take us on, he would even reward us with financial gifts. Really, he was rewarding the man.

Here's a stark example of how my father's accounting of his children played out. About 15 years ago, my youngest sister got married. She and her husband received from my father $20,000 for a downpayment for a house and he self-financed their mortgage at a very low interest rate. It was a lovely gift and not such an unusual thing for a financially well-off father to do for his child. On the face of it it sounds awesome, particularly as he publicly proclaimed that my other sister and I would receive the same gift if we got married.

However, its not that simple. My other sister was a single mother. She had gone on welfare to survive. She was struggling, but was going to college to finish a degree in the hopes of a better life. It was galling to think that he sat in that room, with all those guests, looking like such a loving and generous father when sitting right next to him was a child in need. This man who saw welfare as an unfair burden to "those of us who earn our way" and who lived a financially comfortable life, did not offer any financial support to his daughter in need, but offered support beyond expectation to the one who would have been fine without it. The gift wasn't for his daughter. It was for his new son-in-law, to lessen his burden. I'm happy for my sister and brother-in-law, what a wonderful gift to receive. The questions and emotional complexities come from something else: why does a daughter have to get married to receive the financial support for a home?

Fast forward two years later. I get engaged. Do I receive the wedding gift? No. Why? "Because I've gone through all my checkbooks and you've cost me more than any of my other daughters." (That would be that student loan and a legal bill he helped me with when I was younger.) I have been too much of a burden. I was no longer worthy.


Until five years ago, I knew that this concept of being a burden was in my psycho-emotional makeup, but I didn't really have to face it down. I was self-sufficient. In every relationship I was in, I made sure to be an equal financial partner. I earned my keep. I was smart and worked hard and was resourceful and felt confident that I would always be able to provide for myself. The beast was caged.

Until I got sick. It might have been easier if I'd gotten something really clear and obvious, too. If I'd had a physical accident, the moment of my disabling would have been stark. I would have qualified for the disability benefits I'd been contributing to during all my working years. If I had something like cancer, tests would have revealed a tumor or bad blood cells and the travails of treatment would be more familiar.  Perhaps, just perhaps, if it were something like that, the normal social expectations for those conditions would have lessened how big the beast would be when he escaped the cage.

Instead, I got sick slowly and vaguely. I was so tired. I was achy. It came on gradually and not linearly. My knees and feet would hurt so much I couldn't walk. Later, it would be a gripping pain in my neck that would make me stop the car in tears unable to move. Was I forgetting things a lot? I had a young child and new business. Maybe it was just stress.

By the time I knew that something was really wrong, I was so far past the first stage of my illness that it took two years to get a diagnosis. Two years of sliding into further and further cognitive and physical disability. Why am I getting lost all the time? Where did those hours go? I never feel organized, I need a new system. I just did that yesterday? I can't see in the morning. My skin is burning from head to toe. Are you talking to me? Are those words? When did I say that? I did what?!

I crashed. The business crashed. My life crashed. Right into a jungle and there was a trail of debris. Like any jungle, the chronic illness jungle has a vast array of flora and fauna. When you're in it, it is a universe unto itself. It is dense and you can't even see that there is a world beyond its confines. There is the warming sunshine of friends, the nourishing fruit of caretakers, the gigantic insects of symptoms and the scary predators of your fears. When I crashed into my jungle, one of the predators was the Beast of Burden, released fully grown from its cage.


In five years, I don't think one single day has gone by  in which  I haven't worried about when and how I will generate an income again. When I eat, when I buy clothes, when I need or want anything at all, I am reminded that I am a burden. That I do not contribute. I feel guilty for having needs, much less desires. I berate myself for not having figured what I might do. I'm not reliably available cognitively. Some days I can barely walk from the pain. Others I'm too profoundly tired to move. One day per week is lost to a 6-hour medical infusion and the ensuing sleep. I have a daughter who needs what little energy I have. Who would hire me? I spend a lot of time trying to imagine what I might be able to do to earn a living.


There it is: "earn a living." Its built into our vocabulary. It is our vernacular perspective. One has to earn the right to live. So, what does that mean for those who, for whatever reason, cannot generate an income? What if you aren't earning your living? Are you no longer worthy? Are you simply a drain on society? A burden?


I struggle with these questions every day. While people might say, "you need to focus on healing", that's not really possible. A mortgage must be paid. Food must be purchased. Medical bills pile up. Its always the rainy season. The protective canopy wouldn't exist without it.


I've said this before and I'll say it again. I've been lucky. I separated from my husband in 2001. We have a daughter. So, when it was clear that I couldn't support myself, I accepted his generosity of letting me move back into our house and be financially supported. Neither of us had any idea, at the time, how long this would go on. I hadn't even gotten a diagnosis, yet. Four years later, we're still here. We both talk about finding a way to live in separate homes so we can get on with our lives. It is not fair to him to have been saddled with me, financially. He never, not once, has said anything to make me feel guilty about not contributing financially, though he is clearly stressed. We have come close to losing our house. Still, he will tell me that I need to focus on my health.


Yet, I can't. Every time I forget to do something. Every time I burn something in the oven. Every time I incur a medical cost not covered by insurance - even eyeglasses. Every time I need $5 for public transportation. Or I am gifted a book or a meal. Every single thing I do and don't do, I think about the costs and the increasing size of that beast. He's bigger than Sasquatch. The bigger he grows, the less worthy I feel. He looms there in the jungle, breaking twigs and rustling leaves so that I know he's there. His appetite his huge.


Maybe he'll eat the whole jungle one day.

Lyme is a 4-Letter Word

I had in interesting encounter last night. I was at a friend's house for a BBQ.  Her father was visiting from out of town. He's a doctor from New York. A hematologist.

In a rambling discussion of topics ranging from family backgrounds to the study of languages, I mentioned being at NYU and having a professor who spoke English with such a heavy Chinese accent that I couldn't understand a word he said. My friend's father had gone to NYU. He got both his undergrad degree and his medical degree there. He lives and practices north of New York City now, so I asked him if he still had connections to the NYU Medical Center.

I told him that I had been to a neurologist connected to NYU last year. This piqued his curiosity and we talked about the tests I'd had done there. I explained that I'd had nerve biopsies that confirmed abnormal morphology and nerve conduction exams that confirmed conduction issues. I told him that two neurologist had determined based on these tests that I have Chronic Inflammatory Demyelinating Polyneuropathy and Dysautonomia.

He started questioning: "Well, was there an MRI?", "Was the nerve biopsy definitive?", "Were there any other tests to confirm this? "What kind of tests have you had?" He was skeptical of the diagnoses. A hematologist is questioning the neurological diagnoses of two neurologists.

What struck me right off the bat, was how little he knew of me and my history and how willing he was to jab at the work of other doctors. I was not seeking his medical advice. I was relating a positive encounter with an NYU doctor.

When I explained to him that I had been displaying neurological symptoms to doctors since 2005 and that these tests were definitive and the only other tests I'd ever had that came up with definitive positives were Lyme tests, he stiffened right up and said, "So, you had Lyme once, doesn't mean its active."

Wow. I hadn't said that it was. In fact, I was explaining that since there seems to be no consensus on what all the Lyme tests mean, we were actively pursuing other explanations for my symptoms. I did inform him that I'd had a recent test that supposedly did confirm active infection, but that I wasn't left with any sense of confidence about that, either, given so much conflicting documentation.

His retort - and I say retort, because at this point, he clearly seemed to have stepped into conflict mode, when we had been simply discussing my experience with a doctor from NYU as a matter of people making connections - "There is no controversy about Lyme tests, the IDSA is just having to stand up to a lot of quacks."

Conversation over. He barely spoke to me the rest of the evening, after having been energetically engaged up to that point.

Lyme is a four-letter word. Those of us who have had to live with Lyme, know it as a kind of curse, certainly. Apparently, the mere utterance of the word is a curse, an offense. It certainly has power.

I was not trying to discuss Lyme. Nor was I at all interested in going through the history of my medical journey, since it doesn't reflect well on the profession and I had no need to cast any shadow on this man I did not know. In fact, I was relating one of my better experiences of a doctor as a way of praising NYU. Further, I was purposefully highlighting the concept that my neurological symptoms could be explained with diagnoses other than Lyme. I even avoided mentioning that the docs think having Lyme generated these disorders. Still, in response to his questioning about whether I'd ever had any definitive tests, I mentioned Lyme, just mentioned it and the conversation derailed. His entire demeanor changed.

Here we can see how progress on this topic is impossible. By generically labeling those who oppose the IDSA stance as quacks, he has summarily dismissed any consideration of their viewpoints. It doesn't matter that the IDSA admits that their guidelines are based on opinions, not evidence. It doesn't matter that there is a growing body of research which contradicts the IDSA opinions. If a proof-positive piece of research came from someone who contradicts the IDSA, it would not be given a chance at daylight, because they are "quacks".

This is how you stifle dissent. You make it clear that you are willing to be personally offensive to anyone who disagrees, rather than simply hearing someone out and pointing out any flaws in their ideas. In short, you are a bully.  I certainly wasn't going to provoke a debate about this as a guest at someone else's house. I'm not well-enough equipped to have the debate with an entrenched doctor, anyway.

While someone with this style may think he has won something, what he lost was my respect. Additionally, he left the scent of fear. The establishment is feeling threatened. That may be a good thing. As long as, the threat is out of a search for truth and not based in fear, itself.

I'll write about the fears that surround Lyme tomorrow.