The Hillhouse

The Journey of a Mother and Son

Lung Leavin’ Day February 2, 2014

The past few weeks have been incredibly stressful and frightening for me, but hearing someone else’s story has quickly put a new perspective on things. Today Heather Von St. James celebrates another year of life, another year of victory over Mesothelioma. I myself had a friend (luthier, Jim Norris) die of this cancer years ago. It broke our hearts to learn that our friend was diagnosed with this particular cancer, as Mesothelioma is usually thought to be a certain death sentence. Heather, however, has shown the world that it is not. Heather is a shining spokesperson for hope. Please learn about her story, and watch her video. Here is Heather’s story. May you take from her experience inspiration to face the challenges in your own life. And please, if you’re able, donate something to help fund research into fighting this disease.

1266854_685378121502165_639066134_oHeather Von St. James and her family. Gorgeous, glowing and glorious is she.

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Woke up with a dull headache already nestled in between my temples, just waiting for me. I wondered how long I was doomed to live with this now. Now that the corner had been turned, and I’d foolishly declared before the world that a) I had been an idiot and ruined my father’s Studio and b) had been stupid enough to announce to the world that I was going to make it all better. What kind of spell had I been under? What the hell had I just gone and done?

Last night, as I stood at the sink (washing dishes for the third time that day – my kingdom for a dishwasher!) a realization came over me in a rush, and I literally felt as if I would vomit into the soapy water. Oh fucking no – the whole thing just presented itself to me in an entirely different light. This was no opportunity! This was a trap! And I’d fallen into it! Worse yet – I’d made the trap to begin with! The ‘if onlys’ came at me fast and furious, and I almost thought I would pass out. Instantly, I was terrified at my future.

I tried to settle down, tried to break the situation down into the few things I knew for sure. Ok. I knew these two things: that if I didn’t do anything about the Studio, one day profound regret was a great possibility, and that if I at least tried to do something about the Studio, then I would never face that outcome.

I have always longed for a quiet, under-committed life, with low stress; a simple, beautiful home in which to live, occasional international travel, visits from out-of-town friends and long, lingering dinners with good wine; musicians with whom to make music, friends with whom to laugh. I’ve long imagined how my little life might pan out here in Greenfield, and it was the great consolation for having lost the possibility of a life shared with my husband and child. But if I took this on – good Lord, my life, at least for the next ten years, didn’t show itself to be any of these things. Crap. I want to be anonymous, I want to be left alone. I want to relax. I just want to be happy.

I suppose I’ve already blown it about the anonymous thing. And some mornings I wake up with a similar dread as today, and wonder just what have I gone and done? More than a thousand people are daily peering into my life, and I have almost nowhere to hide now. I can’t take any of it back, either. It’s all out there, forever.  And all of my own doing. Man, I guess I just never thought…. And that’s the problem. Never thought… How many of us truly do think carefully about things?

It seems to me that there are two ways you can live your life; you can tune out and fill your existence up with distractions (career, sports, shopping, activities, living through your children, food and so on) and never truly think very critically about your life, or you can face that awesomely frightening question of your very own purpose and potential here in this world. And should you find yourself contemplating that second question, you can either go back to that first, comfortable route (I really, really want to go back to that one, but I’m afraid I’ve screwed myself out of it) or you must plow ahead into that alternate, murky future. Fucking scary. Or maybe not for some of you, I’m sure many of you don’t share my way of thinking on this – Lord knows this planet is made up of all types; I’m continually amazed at how differently people approach things. You think you kinda understand how someone’s feeling, after all, we do share the most basic needs and wants, but then you learn that they feel something quite different from what you’d assumed they did. And we all know what happens when you assume….

And I myself had always assumed that life would be fairly easy. That all that yack yack yacking about how tough life was and how ‘youth was wasted on the young’ and such – all that was nonsense. All that Buddhist four truths stuff, all this inner exploration and contemplative journey crap – what a waste of time and energy. Enjoy what you got, help out a little when you can, and just shut up already! Ok, that was a young, middle class girl who had the world in her front yard but had no clue. This was a young person who hadn’t yet faced a lump in her breast or a set of knuckles inflamed with arthritis, or the death of her father (or the ruination of her father’s work at her own hand). So, things change. Or maybe things just wait for you to catch up with them. Maybe these little atmospheric whorls of potential events lie in wait somewhere before us in time, and it’s our tiny steps in between that determine which of them we ultimately enter into.

So as I stood at the sink last night, fighting the urge to throw up into the dishwater, I remembered a woman who’d recently contacted me. She’s a reader of this blog, and she wondered if I might not help her in her own journey. For just a second, my own distress diminished as I considered the fear that Heather must have known. I think I’m afraid – but of what? My issues are external, they do not hold my life in the balance of their outcomes. They are nothing, really, compared to the challenge that Heather faced. Ok, Elizabeth, see? There are far more frightening prospects in the world. You, (saying this to myself, of course) are a wimp. You are being cowardly. How dare you? I remembered also my promise to Heather, and if I never came to fixing the Studio, I could at least do one thing I’d said I would.

Here is Heather’s story. Of course, it’s inspiring. This woman’s courage is impressive, but so too is her follow-through. Ok, so she made that mind-numbingly difficult decision to have a friggin lung removed in order to save her life, and she survived. Wouldn’t that be enough, you’d think? No, apparently not – because Heather has the drive and focus to continue to spread the word about Mesolethioma. She’s still taking action, long after she did her part. She had to face a kind of fear the likes of which each one of us prays we never, ever have to face. Ok, she did that, then she took care of it. Then she goes and does more. (Plus she’s a wife and mom. Cannot underestimate the time and energy that role represents.) Alright. My situation may feel dire, but I can temper my fear just a bit when I realize that it’s external, and that it is not a life or death situation like hers. Thank you Heather, for showing us that nothing is a done deal. I am known to say that this is a pain-in-the-ass planet we live on, and that life here is tricky. Heather, you clearly already know all of that – but have gone far beyond worrying about things and bitching about how hard it all is (that would be me doing that). Thanks for teaching us by example. I’m going to try my best to live up to my own challenges as you have yours. I’m not sayin I’ll do half as well, but you’ve inspired me to at least try…

As Heather says, “With hope, the odds don’t matter”. Thank you for your inspiration, congratulations on all your achievements, and most of all, happy Lung Leavin Day!

 

The Other Shoe August 8, 2013

Thursday morning

We’re going to take dad to the hospital today as he’s been complaining of stomach pains for a few days now. While mom and I think it might be good old-fashioned constipation, and he’s been drinking more fluids to help things along, the pain hasn’t really gone away. Mom suspects all he needs is some hydration by way of an IV. That, and the overall stimulation that another atmosphere and new people might provide. I’m not so sure this will have a happy ending. Martha, the other matriarchal figure in our lives, is also in the hospital today. She awoke around four this morning because she was having difficulty breathing. Martha knows the drill well. She pushes the button on the pendant around her neck, calls her friends Doreen and Mike, and shortly an ambulance arrives. She’s been in the hospital – admitted through ER – many times over the past couple of years. Sometimes things appear dire, yet she always ends up returning to her large, historic farmhouse in Greenfield. And every time she enters the place, I pray she makes it home again. Above all things, Martha is a woman who must die in her house. And no matter how infirmed her state, it seems she always has the resolve to make sure that one day she will.

My father, on the other hand, might have a different story. If admitted, he might be considerably disoriented by an extended stay in the hospital. Mom’s hope is that he ends up staying for a few days. She’s even posited his going then to a rehab facility in town (Martha’s done that herself several times). But if he can be made well by a simple round of hydration, then why would he need to stay there? My suspicion is that mom isn’t even aware of her own secret wish to be relived of her care-taking duties, if only for a couple of days. I’ve been lobbying hard for a weekly visit from an private nurse, but mom continues to say ‘we’re not there yet’. ! A few days ago she began to acquiesce, and told me her intention was to call the office of the aging and schedule an in-home interview, yet every manner of obstacle has prevented her from doing so. She doesn’t work, dad doesn’t get up til way past noon. What on earth could be preventing her from calling, save her own, deeply-embedded fear of entering this next phase? This is all a sad new territory for sure, and it’s made even harder to navigate by virtue of my parents’ values and upbringing. They are not a generation that discusses their feelings. And my mother is definitely not one to accept help. This creates a challenging environment when it comes time to deal with these issues of aging. Man, if there’s one thing I’ve made good and clear to my own son, it’s that he should do what he needs to do when the time comes. If I don’t know who he is and I can’t wipe my own butt – then  by all means ship me off. And honestly – you may think me morbid, I do not care – I am all in favor of assisted suicide (however loathe that term) if a person should face an irreversible, debilitating disease. It’s even my hope to be able to sock away enough money to have that be a viable option one day (one possible place is in Zurich, Switzerland. It’s legal there). After all, looking to my father and paternal grandmother, the genetic possibility for growing old with dementia is a potential reality for me. I cannot pretend it isn’t.

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Thursday, early evening

I’ve been at the hospital for much of the afternoon with mom and dad. The staff at Saratoga Hospital continues to impress me, and I’m so very grateful for their service today. Turns out dad just had a hernia. Not a big surprise, he had one on the other side years ago which he had fixed surgically. The doc massaged it back into place, and dad felt relief right away. He had a CT scan which showed some ‘white matter’ around his brain; the ER doc surmised that it may have been many ‘tiny strokes’, but mom and I wonder if it might not simply be evidence of his memory loss and the related diminishing brain volume. Either way, my feeling is that it doesn’t so much matter. In my eyes, it’s my father’s quality of life and comfort that is most important now. Little prevention can be done to stop the progress of what’s probably inevitable. Guarding against falls is another concern of mine now too (mom and dad have a tile floor, argh. Knock on wood). In the end, dad’s cheerful, as well as he can be, and most importantly, feeling better. And I for one am relieved that he didn’t need an overnight stay in the hospital. (Although mom might feel differently.)

Martha was just down the hall, and on the way out, we wheeled dad into her room for a visit. It only just occurred to me right now – that it might have been the last time that dad and Martha will ever see each other in person. On Martha’s 87th birthday, just a few weeks ago, it took dad nearly fifteen minutes just to get inside her house. It was a huge production. I think we all knew as we watched his incredibly slow progress to the car afterward, that this was probably his final visit to the farm. This whole chapter is bizarre and bittersweet. I realize I’m lucky to have both of my parents alive and doing relatively well. So many of my friends are in that stage of life when they’re losing theirs. I watch, I wait, I worry. Nothing to do but try to savor the time remaining.  It’s tough for me, yes, but I think of my folks. My dad is actually blessed by his dementia; he can’t truly appreciate that his life is reaching its end. And my mother, while she herself is actually doing ok (in spite of bad arthritis and chronic back pain), I can’t help but I wonder if there’s not a low-grade worry present in her thoughts about how her own end will come. An occasional passive-aggressive aside will come out every now and then which betrays a darker side to her concerns. On the face of it however, she jokes, she makes light… There is a mildly haunting sense to this time in all of our lives, although none of us ever says as much. But even if we were to talk, what would we say? I’d like to think that Elihu and I will face these tough conversations with absolute honesty when the time comes, but I can’t know that for certain. I cannot begin to assume that I will behave any differently, or approach the last years of my life with any more candor than my folks. I just don’t know how it will feel to be in that situation. I’d like to think that I’ll be able to face it, but it’s been a bigger challenge than I’d thought just turning fifty!

For now, I cherish the little things that have been so familiar to me all of my life. That certain, charming way my father has of laughing. The way my mother always shows concern, the way she always takes care of things, and makes me feel in the end like everything will always be alright. I can’t grasp in this moment, today, that one day they will be gone. And as frustrated as they can make me, they are my only parents, and I love them so. Every remaining moment is important, because you never truly know when the other shoe will finally fall to the ground.

ER 2013 126I am a fan of Saratoga Hospital. The staff there have all been so kind and gracious.

ER 2013 063Dad was in good spirits all afternoon.

ER 2013 053There’s his gallbladder. All looks just fine.

ER 2013 078Now we’re in Martha’s room for a visit. Note how she raises her hand for emphasis as she speaks. She is still in control! And she remembers the name of every last person who comes into her room – not only that, but she remembers where they live! Martha always inquires where people are from. That’s signature Martha Carver. !

ER 2013 091That profile I know so well.

ER 2013 097You can see what a production it is to move dad.

ER 2013 101Aaron was so kind and patient.

ER 2013 105Mom needs a cane these days – she can’t walk far without it. Even so, she’s the rock in the duo so far.

ER 2013 113So fragile looking.

ER 2013 122What a relief. I asked mom if she needed help on the other end – getting him back inside the house – but she insisted she didn’t; she said it simply took a long time. I can’t help but wonder each time he leaves the house if this will be the last time he does. You just can’t ever know for sure.