a walk, the Guggenheim, thoughts, on 15 Sept 2014 (belated post)

This is a walk around town and trip to the museum that I took a few weeks ago. Routine apologies for the amateur camera work – although some of it is the result of dodging the security men in the museum. (They’re really serious about the no camera bit!) As before, I made this little movie to share the day with my husband.

Included are my thoughts on “pop / postmodern art” and it’s, er, import to culture.

a few decisions, finally

Yesterday was a day of overdue progress. We don’t have any more answers or even any reassurances, but together with our physicians, we are confident that we have done everything that can be done — and that it’s time to go home.

After two unplanned months in New York City, we are finally packing up and returning to our daughter and dog in a few days.

Sometime — several weeks, perhaps even months — after we get home, our last chance / best and only idea for treatment will arrive. Although we still aren’t certain of a precise diagnosis, we do know that it is a fast-acting, aggressive demyelinating disease like MS – so we’re going to try Copaxone.

Copaxone doesn’t always work even with traditional cases of MS. It may do nothing at all. If that is the case, there is a real possibility that Geoff could die from this. After already having had Chronic Lyme Disease for 30 years, I don’t know how much more his body can take. Then again, maybe Copaxone could help.

Knowing all this, we agree we would rather be home, together as a family, enjoying whatever we can, and hope for some kind of reprieve.

There were a few hours of terror yesterday. Even with Medicare, the copay for Copaxone is almost as much as our income. I wasn’t sure we would even have the chance to try this treatment. But it turns out that there is an organization that steps in for people in our situation — and gives a grant to cover the balance that Medicare doesn’t cover. There’s a group of philanthropists who simply take care of it, just because they can, just so people who need their medication can get it!

I am in awe.

These past several months have been truly horrifying, and we aren’t strangers to the difficult or absurd. But there have been other moments like this, where strangers or friends perform amazing acts of generosity, thoughtfulness and kindness. I am so humbled, and so grateful. I hope that I too may someday be able to help someone in this manner.

Meanwhile, I’m trying to pray through this dark night of the soul, through the confusion and terror and loneliness. I’m trying to not take out my anger on fear on others. Perhaps, for now, all I can do is be grateful.

hurry up and wait

I thought we’d get word on which course of therapy we’d be trying today; instead, we just learned more logistical challenges. We did get confirmation that we will be “aggressively” treating whatever this is. And, we did get confirmation of which doctor will be leading the charge (a choice we fully support). But we also learned that due to a few circumstances, we will only be in NYC for up to another two weeks.

Now, on the one hand, I’m very happy to hear that within two weeks we will be back home in Maine; one the other hand, even the doctors in Maine acknowledge that they are not equipped to handle a case like my husband’s. There are doctors in the Jacksonville area, near where my in-laws live, who are properly trained and skilled, but first, we need to get to Jacksonville.

For that to happen, we have to close up our home — i.e. get it ready to sell — and pull our kid out of school and move in with my in-laws. And set up treatment in Florida.

No one – in NYC at least – pretends that we aren’t playing for keeps. We don’t have the luxury of time or preferences. It’s time to just make it happen.

a half-step forward, and the best fans in the world

Today, we had two big appointments with the neurologist and the primary internist caring for my husband. We expected to get final word on whether or not my husband has MS in addition to chronic lyme disease.

As in all other things in his life, it turns out that my husband is unique, and while they can clearly state that there is some sort of demyelinating disease, it presents so strangely that they are not absolutely sure it is MS.

That said, everyone agrees that this has gone on long enough, and it is finally time to begin treatment. We’re going to evaluate risks and what we know and don’t know, and go from there. My husband says, “As long as it isn’t sure to kill me, I’m game.”

We hope to begin some kind of treatment within the next week.

In the meantime, we continue to be stunned and humbled by the kindness and generosity of our friends. My husband is able to spend time in NYC seeing doctors because of the generosity of Geoff’s friends from college. During our stay, both Geoff’s friends and mine have been in touch with us, sending us messages and care packages from all over the country. Geoff’s parents have put their entire lives on hold to care for our daughter in our home so she can go to school and be with our dog. And today, a couple of my twitter – pals, whom I have never met, but who are fellow Rush fans, messaged me today to say that they’re coming into town, and would we like a “distractionary cocktail?”

This is one of the scariest times of our lives; it is also one of the most humbling and beautiful. The amount of effort people go to to show their support and kindness is beyond my dreams. I am so grateful.

Hopefully, tomorrow, I will be able to provide some information on how we are going to move forward through the next few weeks. For now, let’s just enjoy the promise of decisions being made and the kindness of friends!

Tomorrow and tomorrow and tomorrow

Tomorrow, we see Geoff’s neurologist. Later in the afternoon, we meet with his primary doctor. We will get more test results, and this may finally provide a diagnosis for the changes that have been happening to him. He’s had Chronic Lyme Disease for decades, so at first we thought the numbness and tingling in his legs and the vision changes, cognitive changes – we thought these were just part of the regular ebb and flow of Chronic Lyme and Chronic Fatigue Syndrome.

But now it looks like MS has come to play, too. Not only is MS highly variable between people, but no one knows what MS and Lyme together will do. There’s still a chance that MS won’t be confirmed, but it that happens, we’ll fall into the category of “unknown neurological issue” – and likely proceed with MS-related therapies anyway. We’ve done all the tests that can be done and it’s time to begin trying treatments.

So, I’m both excited and scared for tomorrow. Excited because we might finally get some news that we can use to make decisions. Scared, obviously, because it’s not only possible but quite likely that the news will be bad. After two months in a strange city in someone else’s apartment, though, we really need to get some information we can use to make plans for our future, whatever it may be.

digital life for an analog girl, or trend-busting the past

I’m going to be adventurous here and talk about personal stuff I don’t usually discuss without making jokes and dissembling. I’m just going to be straight about it. Eek.

Currently, facebook and twitter and email are my connections to my friends, to my “support network.” In daily life, it’s just Geoff and me right now going on two months in New York City, searching for a diagnosis and some sense of what the future could possibly hold.

I don’t want to tell Geoff’s story, but I need to pay attention to mine. And that’s hard for me to do – it feels self-centered. But I also know that if I don’t start figuring out how to care for myself, too, then… well, As bad as things are, it’s going to get worse.

Most of you know, I think, either from knowing me in real life or through my other blog MermaidsSinging.wordpress.com, that I have PTSD. So I have bad-ass triggers, most of which I manage by avoiding things that remind me of stuff. I avoid so much that I’m considered disabled. Which sucks on so many levels I don’t even know how to describe it. I was misdiagnosed for years and subjected to sub-par medical care, resulting in several unnecessary hospitalizations and lasting, severe side effects from medications I should have never been on. I miss working. I miss contributing. I miss the adventure of the bigger world.

It’s been very hard to dig out from underneath all this. But I had been doing a really good job of it, until about a month ago.

It’s hard to be around people. It’s hard to socialize. In fact, one of the gifts of social media is that I can “connect” — but behind the safety of my computer in the security of my home. Studies have noted that as damaging as social media can be, for those of us with disabilities, it can be a life-saver.

My history is filled with stories of my parents wrenching me out of schools, towns, friendships – any of my own connections – without warning. I was very isolated, and the consequences for disobeying them, even when I knew they were wrong, were so severe that I couldn’t risk it. The chaos and upheaval, not to mention the violence of these years is indescribable, and it didn’t end until my early 30s.

It only ended because they tried to take my daughter from me. See, my girl and my husband are more important to me than my parents, and they found that unacceptable. So they tried to take my family away – in court – so that nothing came between them and me.

They lost.

My first husband was even worse than my parents. And I had to take him back to court again in 2012 because despite the passage of time, he still follows me when he thinks he can get away with it.

So, what happens historically is I build a life and it gets taken away.

And, although the circumstances are very different today, it’s happening again. My in-laws are doing a great job taking care of my daughter and my dog – but still, someone else is taking care of my family. They are also doing projects on our home – so it can be sold. So again, I’m losing my home. My husband’s health is getting worse by the day. It’s not a figure of speech. I can watch him deteriorate. My best friend is barely able to be “present” with me anymore.

Now, this may change with therapies. And selling the house and moving to an area with better medical care is clearly a good thing. And my in-laws are being – let’s call it what it is – rock stars right now.

The situation is very different from the past. There is no malice, no power-play, no domination game, no bad guy. In fact, not only are the “bad things” not present, there are a TON of wonderful things that are present that I’ve never had before. My in-laws’ support. Friends -! I didn’t know I have so many friends! And everyone has been quick to help in ways beyond my imagination. I’m stunned by the generosity I’m receiving. I actually don’t know how to handle it.

But the loss, especially the loss of any amount of control at all, feels the same.

I’m trying to remain in the present. I’m trying to care for myself, but it’s hard. One of the awful things about living with trauma is that you always know that “it isn’t in your head.” These things happened, and there’s nothing preventing them from happening again. The ugly underbelly of life is a real thing, and there’s very little separation for any of us between safety and calamity.

I need to remember to do the things I enjoy, to nourish my soul so I can care for others. So, today, I forced myself to marinate some beef for shawarma. It felt good. I made myself sit here and write. Okay, that’s not bad. I might take a walk. That might be okay, too.

Baby steps. Always. Just with bigger feet.