Absence

I've been feeling defeated for the last 6 months, so I took a personal sabbatical. I stopped writing. I stopped trying to find a way to earn an income. I stopped everything except caring for my daughter. I immersed myself in escapism. I simply didn't have the energy or spirit to engage the challenges of my health and life situation.

My father passed away last August. Deaths are generally sad affairs and this was no different. It was fraught with our family's particular dysfunctions. Being physically disabled didn't help me cope with it, well. I was not able to get treatment while I was away and as I became more and more symptomatic, I was more and more vulnerable to the emotional overwhelm of it all. I was left profoundly sad.

I came home and scheduled an appointment for my bicillin injection - the only treatment available to me for the past year - only to learn that the insurance company had retroactively rejected the claims for that treatment. That is, they took back the money that they had already paid the clinic. I was told that I now had a past due bill and could not receive more treatment unless I could pay that bill. Thank you, Harvard Pilgrim.

Harvard Pilgrim has never sent a single communication to me, their customer. I had no way of knowing, until the clinic sent me a bill, that any claims had been rejected. We had to go through the broker of the insurance plan to learn that they rejected the claim because they have a lifetime limit of 1 month treatment for anything related to Lyme Disease. Doesn't matter if you've actually recovered or not. It also doesn't matter that we don't acquire immunity to Lyme and you could be bitten again and have a fresh case of Lyme. If you've already been treated, you'll get another dose for Lyme Disease.

My ex, who has been an absolute angel about providing a roof over my head and making sure I get whatever care I can, also had difficult news for me upon my return from my father's death: we had finally figured out how to manage living in separate houses. Only his end of the arrangements hadn't worked out and he had to move back in. As it turns out, the housemate I had found, had life issue of her own and she informed me upon my return that she wasn't going to stay.

Additionally, the one neurologist in MA who will see a Lyme patient and knows how to deal with the other health issues that can ensue, had to cancel my September appointment. She was away on emergency medical leave. A tentative appointment was made for January. I was to see her to figure out how to get treatment for the auto-immune disorders I live with now. That would have to wait.

So, August was a just a month of "everything that can go wrong will". Everything felt pointless. I had mustered a lot of energy in the previous months to find some way to get my life back on track and it seemed that the universe was mocking me. So, why try? I didn't have it in me to be angry. Or creative. Or productive. I just stopped.

I'm not sure where I am with it all now. I have come out of the complete state of disconnect and am doing a little bit. Re-envisioning what I can do with my knitting design work. Looking at what can be done to get around the obstacles to my health care. I don't feel highly energetic. I feel somewhat dispassionately engaged.

News about what's going on with the IDSA guidelines, their testimony in the NH legislative process and the recent Supreme Court ruling allowing corporation unlimited political influence are not encouraging. Everywhere I look, I see a system based on personal greed with little concern for the vulnerable in our society. Of course, there are individuals and even groups that care, but the bigger system is entrenched in a very de-humanizing way. My losing battle to get treatment is very related to that. When you're sick, how are you supposed to face off with an entire culture?

This is the question I grapple with. I certainly don't expect to take on the big fight. Its more a question of how to create an oasis in the desert of our humanity, wherein, I can get the treatment I need and have that oasis as a resource to drink from when I make expeditions into that desert.

At the bottom of all of this, is that I am a person of visions. Of dreams. Of longings. I dream of way society could be, yes. But I also dream of a life I could have regardless of the bigger picture. And its not a pipe dream. Its obtainable. I don't care if my feet are in pain. Or I'm tired all the time. Or that the sounds of the world are assaulting me constantly. Or even if my brain is foggy half the time. What I care about is that the cumulative effect of all these symptoms is that I can't pursue my dreams. I don't need full health to get back on that pursuit track, but I need some relief. Enough that I can be self-sustaining and have the personal space to let the dreams in.

This is what is so infuriating about the debacle of our heath un-caring system. Its not that people are sicker than they need to be. Its that their souls are in despair. Their dreams are erased. This is our particular form of genocide. Its not racial or ethnic. Its a genocide of the vulnerable.