Category Archives: Uncategorized

Frosted

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Yesterday I had two slices of chocolate cake for lunch. And yet another for dinner. This is so not my usual behavior, but then again, desperate times call for desperate measures.

Sigh. Desperate is surely an exaggeration but then again, this is undoubtedly an interesting moment in history.

2017 started off with a bang when I tried to pay my health insurance premium for January. To great consternation, I found myself locked out of my own online account. Never, ever, a good sign.

It was a holiday weekend so I had to wait until January 3rd to speak with a representative at BeneDirect, the company that manages my health insurance through COBRA. The pleasant young woman on the other end of the line confirmed that due to non payment in December my policy had been terminated.

Isn’t that an awful word–terminated? Right up there with terminal. No good has ever come of either one of them. Were I Queen they’d both have their heads lopped off.

Speaking of heads, what’s inside mine is nowhere near as sharp as it once was. I’d never knowingly miss a COBRA payment, understanding only too well how much is at stake. I am undoubtedly any health insurance company’s worst nightmare–having been in treatment for lung cancer for almost twelve years now. And being denied health insurance is my worst nightmare.

Fuck, fuck and more fuck. My only option was to file an appeal. Well of course I got right on that and faxed if off that very afternoon. And just to make sure nothing fell through the cracks, I call BeneDirect when I returned home to see if they’d received the fax. Confusingly, this representative told me that no, I had not in fact been terminated. That due to the holiday weekend lots of people had been late with their payments. And if I overnighted payment for December and January, my policy would remain intact. One more trip to FedEx and a big sigh of relief.

Until two days later when I received an email from the human resources representative at my ex-husband’s place of employment (they administer my cobra) informing me that in fact, my policy was kaput.

Many phone calls, emails, a few tears and several days of additional anxiety later, I logged on to see that my policy had been reinstated.

Man oh man oh man. I only have one more year of COBRA before being thrown to the free market (or the wolves, depending on how this administration sorts things out) but I’d rather not have to deal with that shit yet. Of course that doesn’t mean I can relax either. Like everyone else dealing with a chronic condition, I am nervous as hell that preexisting conditions and lifetime caps will in fact be reinstated.

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And if that happens, we can always just eat cake.

xo

Going where I don’t really want to go

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There is very little that makes me anxious any longer. However, I am parking phobic. I will drive anywhere, in any sort of weather, but having to search for a parking space causes me undue anxiety. And so I generally avoid situations where parking is an unknown. Which of course means I miss out on certain things.

However….these days I am all about embracing challenges. Yesterday I was meeting a friend in Cambridge for lunch. I also needed to stop by my son’s dorm at MIT as I’d finally located my missing electric toothbrush charger (it had gone to college along with my son).

When I left my loft in the morning I was feeling incredibly scattered and rushed and was doing my best not to get stressed out by the fact that I was leaving late and also that I would need to find a parking space when I got there.

Traffic was a breeze (thank you traffic god) and as I approached my destination I decided that it was high time I faced this ridiculous apprehension of mine head on (of all the things to be afraid of!). And I would do this by approaching the task calmly, assuredly, and with the end goal in mind. No big deal.

Well I immediately passed by two empty metered parking spaces (the ones I was looking for) but they were on the wrong side of the street. It was too narrow to negotiate a u-turn in my SUV so I decided I’d keep driving until I was able to turn around. As I waited at the light one of the spots was taken. I got a little sweaty as my anxiety started to rise but I talked myself down. Two lights and one (probably illegal) u-turn later, I was on my back to what I hoped was still a vacant parking space.

To my relief, it remained unoccupied. To my exasperation it was, thanks to the construction vehicle parked in the space to the front, not quite a full space. And said construction workers were sitting on the steps of the neighboring building having their lunch. Oh goody, an audience!

This is probably a fine time to mention that the only thing I didn’t pass with flying colors in Driver’s Ed was parallel parking. And this, of course, was a parallel space. However, I put myself in the ‘I cannot fail’ zone and after positioning my vehicle just so, I cranked that wheel and eased on in before the watchful gaze of all those construction workers. One more tiny adjustment and I was parked, mere inches from the curb with not much more distance between my bumpers and those of the adjacent vehicles.

Damn, that felt good. Confronting something I was afraid of.

Later in the day I had an errand to run in Lowell. With my confidence running high, I settled on yet another tight parallel parking situation. This time an elderly gentleman walking by stopped to watch my progress. This space, tighter yet, required several wheel cranks and adjustments before I was in. When I glanced up, the gentleman was giving me the thumbs up.

When I got out of my car I looked over my shoulder. He had walked several yards but he turned around and gave me a second thumbs up. “That wasn’t easy, you know” I said. He smiled widely, waved and nodded his head in agreement.

I smiled back, outwardly and inwardly. One more bugaboo, banished.

Because magic can be in a moment

I’ve gotten an adventure or two under my belt since my last post (with more to come) and I plan on divulging in detail. But before I get to all that I’d like to share a truly magical moment. On Sunday I accompanied my friends/neighbors Machiko and Koichiro Kurita and their dog Momo to Mill No. 5; an enchanted space if there ever was one. The four of us were wandering about and came across this most perfect of props. I whipped out my handy iPhone for an impromptu portrait of two of my favorite photographers and their little peach Momo. Serendipity.

Koichiro, Machiko & Momo.

Koichiro, Machiko & Momo.

Me and my hero

 

Linnea (me!) and Dr. Alice Shaw

Linnea (me!) and Dr. Alice Shaw

Just thought this was as good a time as any to post a recent photo of me with my personal goddess/oncologist Dr. Alice Shaw. She is a rock star and with Alice by my side I feel as safe as a person with stage IV lung cancer can possibly feel. Better than that, actually. I know my doctor will do everything within her power to achieve the best possible outcome in regard to my future. That when she says we are a team, she really means it.

Her role is to watch my cancer like a hawk and to stay abreast of any developing treatment options. She’s got that. My task is to work on being as strong as I am able–emotionally and physically–so as to better bear up under both changing health conditions and new treatment regimens. To hang onto optimism and to keep the faith. And, perhaps the most challenging of all, to continue to sit with uncertainty.

It takes commitment and an incredible amount of confidence; on the part of my doctor but also myself. Alone, I don’t believe I could manage. Together, we’re a formidable team. Cancer better watch its back.

This matters

For me, the meaning of life is life. I place such a high value on living that all of it (the good, the bad and the ugly) is a privilege. I would do just about anything to stay alive.

As a young woman, my immense respect for life extended to the unborn, as was demonstrated when I became unintentionally pregnant at the age of twenty-four. My parents put enormous pressure on me to have an abortion but I refused and my daughter Jemesii was born nine months later.

I abhor capital punishment and am a fervent pacifist; believing that neither war nor violence is ever justifiable. However, even given my strong beliefs if I needed to kill another person in order to protect someone I love, I wouldn’t hesitate (a personal amendment to never justifiable).

So what does this have to do with anything?

The events of the past week. Two more young black men slain by police officers and now five officers killed in supposed retaliation. Tragic all the way around.

Much hurt, lots of questions and more anger to come. However, if history is any indication, one thing is certain. The killing of the five officers is undeniably homicide–an ‘atrocity’ according to the New York Times. I don’t disagree. Had the sniper not already been killed by a police robot, he would almost certainly face capital punishment. But the police officers who shot the two black men? It is unlikely they will face any charges whatsoever.

A badge should not be a license to kill. Anyone who has watched either of the videos should be shocked and appalled; this too is an atrocity.

I don’t condone the killing of the officers in Dallas and my heart goes out to their families. Knowing that they were targeted, police officers across the country are probably feeling pretty vulnerable right now.

However, there’s the rub. That’s exactly how young black men have been feeling for, well, as long as they have been in America. Vulnerable, disrespected, disregarded and certainly not protected. Profiled. Targeted. It sucks. The situation needs to change stat and frankly, this time love is not the answer.

 

It ain’t over ’til it’s over

Several weeks ago I got a call from a friend who is also battling stage IV lung cancer. He’d gotten bad news; very bad news. His cancer had spread in such a way that his oncologist felt he had only three months to live with treatment but half that long without.

My friend was devastated, as was I. We talking openly about dying—something he couldn’t do easily with his family. I told him that our connection would remain no matter what happened next. He said he loved me. I had the feeling that this might be the last time we spoke.

But I also reminded him that there was really no way to know if this was it—that I too had once been told I had come to the end of options and yet here I was. That he should hold onto hope, because his situation could still change.

Yesterday I got a text message from him. His latest MRI and CT scan had showed reduction of tumor throughout his body.

We spoke again last night–this time the mood far less somber. He was still in a tough spot, but could once more see the horizon. A return to chemotherapy had reduced his tumor burden but he was already looking for the next potential therapy. He sounded like a man with a future.

Home & family

When I made the bold but also long overdue decision to leave my marriage, I had to find a new place to live. Working within the constraints of a limited budget, my options were few. However, I had a hunch that being an artist might just play to my advantage and I began to look for live/work spaces in old mills.

And damned if I didn’t find exactly what I needed. Big enough (1500 square ft), open floor plan (one large room), huge windows abutting water (the Pawtucket Canal) and within my budget. However the very best part about my new home would turn out to be the community.

There are fifty lofts at Western Avenue filled with an incredible assortment of people employed in creative endeavors/vocations. Painters, photographers, writers, musicians, actors, fiber artists, dancers, teachers, metal smiths, ceramicists, glassblowers, jewelers, clothing designers, sculptors, printmakers and a resident drag queen (our facilities manager)…we’ve got it all.

It is a wonderfully funky, fun and supportive crew, and sometimes I feel as if I’ve landed in Oz. We even have a Toto, although his hame is Luke. Besides Luke there is a supporting cast of cats, more dogs of all sizes, a turtle and a rabbit too (oh yeah, I inherited a fish from one of Peter’s classmates).

The one thing we’ve been missing is a baby.

However, my friends/neighbors J. and Joelle took it upon themselves to address this issue and Miles Franklin Haley was bestowed with the title of First Loft Baby on June 16th.

Joelle and Miles

Joelle and Miles

I love my home and the people in this community have become an extended family for me. J. and Joelle, who used to live across the hall from me, have a special place in my heart. One day, about a year into my living here, I impulsively knocked on their door. Joelle answered and I burst out with ‘I just want to tell you that I love you and J.’ Joelle, who is incredibly serene, calmly responded ‘We love you too.’ Five minutes later there was a knock on my door and her husband J. (who is not serene) rushed in and gave me a big hug. Didn’t say a word but we both knew what it was about.

Now I get to be an honorary auntie to the newest member of our community, Mr. Miles. And my family just got a little bit bigger.