On My Mark –

Ready….

I had a pretty good routine developing by mid-2014. I was hitting my groove with a combo of DIY household renovations, cooking, writing, exercising, and learning the guitar. I figured out that all of these things were doing far more for my health and well being than years of therapy and whatnot. Something about getting out of my head and using my hands, making something, doing something, sharing anything — this was far, far better.

 

Then, we went to New York City. We were stuck there for two months seeing specialists, undergoing every test known to man, surviving the ER at Mount Sinai and several days of hospitalization. And life hasn’t been remotely the same since.

Life has been hell, watching my husband’s health erode and evaporate quickly and permanently. Watching his specialists begin to not return calls. To give up. To leave. Watching his heart and spirit break. Waiting, dreading the only apparent outcome that will end this suffering.

An outcome in which the world — is one in which I have no interest.

Set….

But, we are still here. The sun still rises and I’ll be damned if it isn’t still lovely. There is still baseball. There is still good music and better friends.

There is the surprising kindness of strangers, sucker punching me with its generosity, spontaneity, and selflessness.

And there is running. There is the MDI Marathon for which I am training. I, who have a well-documented loathing of running, will run the MDI Marathon in October. It is damn hard, and the first person who did it *died* — and yet, it is also beautiful.

Life is, and I’m not the first to notice, an endurance event. There will be injuries and there will be suffering. There will be triumphs big and small. Mostly, there is putting one foot in front of the other, and persevering. And encouraging the others running the route.

So, that’s great. Yeah. Yea, me, I’m crazy enough to sign up for 26.2 miles when I’ve never run more than 6 — and that was only once. A few of my friends have run marathons, and all of them responded to my registering for MDI with

  1. good for you!
  2. no way will I ever do that again! that was effing crazy!
  3. you *must* cross-train.

Go….

I’ve started cross-training. Right now, this consists of these brutal but awesome Interval Yoga classes on YouTube by Ali Kamenova. I’m trying to maintain a streak of practicing everyday. I know myself well enough to know if I don’t do something everyday, entropy happens and I end up…. not doing it at all.

 

 

What I know is this:

If you want to help your heart and mind heal, start with your body. The mind will follow.

This Way

This morning I went to a cafe a few doors down from work for breakfast. It’s decorated with paintings by local artists and shelves crammed with used paperbacks — highbrow and classic, all — and tucked into a beautiful garden down an alley.

cafe this way

The leaves are already changing in Bar Harbor. The weather is still warm; the grass is still green; the flowers still bloom, but the leaves are falling. Tourist season winds down. It’s stunning.

It hurts to see this without you. I drive onto the island each morning and look at the ocean, and you’re not here. It feels disloyal to be somewhere so wonderful while you’re still at home, alone, and suffering.

I know. We’ve talked about this. Your condition makes it that much more important that I go out and do things, see things, for both of us. But none of it is full without you.

cafe this way table

You should be here to smell the food. Listen to the techno-reggae-jazz and the conversations of international tourists and local seasonal workers. We should be sharing bacon and coffee.

leaves on stairs

Winter

Sometimes, there isn’t much to be said. Sometimes, there is too much. I haven’t written since October because a world of things have happened and yet very little has changed. A world creating and dissolving, and yet constant.

We returned from New York. There were editorial comments made by people who have not actually read my work themselves but felt compelled to speak about it. They didn’t like not being portrayed as heroes? Overwhelmed, confused, and frankly quite angry, I stopped writing altogether. I had hoped to pause for a conversation about it, but it never happened.

There are no heroes. Winter was harsh and long and dark. Geoff got worse.

Most people vanish in conflict. They fear saying the wrong thing. They feel useless. But mostly, I think people are just afraid. And despite the many sincere expressions of concern, very few people actually try to connect with us now. Dismayed perhaps by what Geoff has become, they stay away. Preferring to remember him as he was, younger, unstoppable, dauntless and fearless? To not see him as he is now? But, he is still here – and it is just us now. We three and our dog.

No doubt, I will hear protests about this comment as I did just a few weeks ago. “We haven’t abandoned you!” I was told. Yet, they don’t call. They don’t email. And even though they were here – they never spoke to Geoff about anything other than baseball. How is that not abandonment? It feels like it.

I don’t think that any reasonable person expects to be rescued from their life. Love, however, be it familial or friendly or passionate, hopes for presence. We hope to not be left alone in the dark, even if all there is to do is to be present.

That is what we have left. Presence. The three of us and our dog, together. For as long as it lasts.

 

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!