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Weeks go by like days

Forget your perfect offering/

There is a crack, a crack in everything/

That’s how the light gets in.

— Leonard Cohen

 

If you let it, writing forces you to think. And thinking, as we all know, is a very dangerous activity.

Socrates claimed that the unexamined life is not worth living.

Well, look what that got him: hello, hemlock.

But in all seriousness, not a lot has been going on in the Happy Harper household, so when I am asked for an update, at times, I am at a loss because I don’t want to think about one more loss. This disease takes and takes and takes until you think you have nothing left, and then, Lou robs you of something else. He borrows for keeps.

Activities that I once anchored myself to have sailed on: diagnosis, second opinions, gathering information, trials, natural remedies, fundraisers, travel, etc. That isn’t to say that we are hopeless.

But as life slows down, each day that I spend with Sam is wonderful and painful, hopeful and despairing.

So, yes, our life is quite boring. In the sense of ALS, that’s great! No major decline or hospital visits or illnesses or falls or challenges that we haven’t had some experience in meeting head on.

But that also means that travel has become increasingly difficult. Sam even finds that long periods in his wheelchair are miserable. So something that we’ve enjoyed so much has become limited, and we’ve been spending more time at home, finding ways to keep ourselves entertained and motivated.

I have begun to focus more on keeping Sam comfortable, physically and emotionally. That’s surprising to me because I used to hate, hate, hate when people told me that that was all I could do: keep Sam comfortable.

Four years ago “comfort” meant no hope, giving up, waiting for the inevitable while distracting ourselves from the pain. But now I view comfort as an integral part of how I love and care for Sam.

Life has a way of teaching you lessons that you absolutely do not want to learn. And I’ve always been a slow learner, in school and in life. I seem to stumble down the difficult path while others glide, blue skies and smooth sailing.

But then, I shake off the self-pity, reminding myself that we all have challenges and hurdles and mountains and upstream battles and on and on the metaphors go to inspire us not to give up. Sam and I are not unique in that we experience pain. History is filled with those who life crushed and those who crushed life.

I used to never understand when people told us that we were inspiring. I’d think, well, we’re just living our life. What are we supposed to do? And slowly I’ve begun to realize that that is the beauty of it: we carry on together, we laugh and cry together, we bicker and look for support in each other. Our love deepens as we cling to fragments of our life.

And our journey really has been amazing. We have been beyond blessed by the constant support we receive from so many of you.

Your generosity, then and now, allows me to stay home and care for Sam full-time and to buy him whatever he may need — from vitamins and probiotics to medical props that allow him to be more comfortable in bed and in his wheelchair — and even a few things he wants. Every donation of money, time, and talents allows us to remain independent, something that is hugely important to us.

And support comes in other ways, too. Cards, gifts, books, meals, offers of help, prayers, and even more ways than I can remember after four and a half years of help.

I know my gratitude has been imperfect. It’s entirely too easy to succumb to bitterness and resentment and the numbing effect of exhaustion, despite all of the goodness that so many of you pour into our life.

Thanksgiving has past, but I remain grateful for forgiveness. For me and from me. Letting go of all that weighs on my heart. Of the ability to say thank you for everyone who has come into our life, and stayed or left.

May I accept what is imperfect and cracked, so I can see the light come flooding in.

 

I got stamina.

“And if I make you happy I don’t need to do more.”

–Carole King, “Natural Woman”

I’m a busybody at heart. Although I don’t think this side of myself reared its ugly head until after college graduation, when I had more free time, it’s in full force now.

To someone with anxiety and thoughts that she may not want to ponder, free time can be disarming. It isn’t so much about structure as just having something to work on that I have the emotional energy to delve into: my blog, a craft, reading, planning endless road trips that we may or may not take. I keep myself busy. Just ask Sam.

But what is it all really amounting to? I can’t help but to acknowledge to myself that my most important job is being there for Sam physically, emotionally, and socially.

Nothing else.

Just like Carol King cooed, if I can do that one thing right, I don’t need to do more, have more, be more.

After caring for Sam for a full three years, I recognize that caregiving is so much more than providing for his physical needs. Sam’s emotional needs can be just as demanding much of the time. I’m sure that comes as no surprise to you. The emotional vulnerability of both Sam and me is great and can fall by the wayside in deference to exhaustion and just not wanting to think about it.

I have to remind myself that grief is so enervating. And my arm becomes tired from this long goodbye. So, I try to be gentle with myself when it comes to my roles as caregiver and wife. As much as I want to do everything and be everything for Sam, I can’t.

Mother Teresa wrote, “We cannot do great things on this earth. We can only do little things with great love.”

So, let me do this one little thing with as much love anyone has ever had for the person she loves the most in the world.

Awesome.

“Awe is a sense for the transcendence, for the reference everywhere to mystery beyond all things. It enables us to perceive in the world the intimations of the divine, . . . to sense the ultimate in the common and the simple; to feel in the rush of the passing the stillness of the eternal. What we cannot comprehend by analysis, we become aware of in the awe.” ~ Rabbi Heschel

 

I am the person most guilty for over-using the word awesome.

That’s awesome!

That’s awesome!

That’s AWESOME!

See? Despite the inflection, it’s even annoying to read.

I want to kick myself for being so lazy with my vocabulary. If someone did or said something that deserved this truly overused and underrated word, I should take the time to come up with the perfect (or close to it) word to let them know what I really think.

Because I want to trash this habit, I’ve been considering the root of the word: awe. At the heart of it, I know that awesome can’t possibly mean cool, but I continue to use it that way. To be filled with awe is to be filled with fear or dread. And although, images of 17th century monks or Christians cowering in the presence of something greater than themselves can be frightening, maybe some fear isn’t such a bad thing once in a while.

Rabbi Heschel phrases it perfectly: not analysis but transcendence, not the common in the everyday but the awe in the common. We may not search for it, but it rushes to us, looking to wake us up from the fog of distraction and busyness. I am just as guilty of being a busybody — but then, I take 10 breaths and see the world all new and shiny.

I often wonder if those who read my rambles question what this has to do with Sam. And I answer that it all does. When I choose to see the awe in our somewhat myopic days, I help him to see it too. And he reminds me to slow down and just be when I need to. And I really, really need to slow down and appreciate this time we have together.

When you barely leave the house, looking for the awe can become tedious if you let it. And then, I hear Sam laugh, I see his eyes shinning, the light sifts through our blinds (and the dust dances), we fall asleep together, a thoughtful card arrives in the mail, someone sacrifices something big or small for us — these are all little miracles. No, they are big miracles in our little life. And they help me to feel the awe that my analytic brain can’t find or even comprehend.

 

Some photos I love 🙂

Ella, the elephant we all live with

I hate flying.

Even driving past an airport causes my stomach to tighten and my palms to sweat.

Is it fear of a crash, experiencing the worst kind of panic for less than a minute? Distress from my lack of control? The TSA, the dogs, the crowds — all of the above?

I don’t know. I just know that I’m scared to death.

Death … no one has come back and illuminated the process in excruciating detail for us. Would that even make us less afraid? Maybe, as Kierkegaard posited, a leap of faith is required or maybe because the process of dying was treated much differently culturally centuries ago?

Death may have no sting, but he sure does have a presence.

In Before I Go, Jane Duncan Rogers personifies death as an elephant: Ella the elephant. I like that. It’s so awkward and clumsy and takes up so much room. Plus everyone hates talking about death.

In the west, we have not done a good job of preparing ourselves for this unwanted end to our journeys.

A few weeks ago, someone from hospice came over to our house to describe the process and the benefits of Sam going on hospice. It’s a difficult step to take, and, fortunately, we have discovered that we are not ready to take it. Coming from the spokeswoman of this company, this lifts some serious weight off of my chest.

Despite how much I may share about our life, none of this is easy for me. There is so much that I don’t share. But fear and pain shouldn’t stop me from acknowledging and doing what is best for Sam and for me. Preparation has always helped us — even if it has made everyone around us uncomfortable.

Still, being with Sam every minute can blind me to when that next step should be taken, and it only gets worse the more Lou tightens his grip.

For the last four years, I’ve tried to walk the line between wife and caregiver. Sam’s caregiver sees the need and wants to do everything necessary to make Sam comfortable and to be prepared for everything. Sam’s wife wants to bury her head in the sand and believe that everything will stay exactly as it is. Sometimes split down the middle, sometimes a soupy mess, I am both.

This anxiety of losing my best friend and husband, my Sam, creates a certain amount of existential dread in my head, my chest, my heart for Sam and for our future.

Yet learning to live with this anxiety turns my dread into power. We can always use our friend, fear, to our advantage. The very thing that threatens to de-ceiling your world can huff and puff and just waste its breath.

I’m grateful that Sam …

1. Sleeps well

2. Eats well

3. Has maintained his sense of humor

4. Can drive his wheelchair

5. Loves me for me

6. Makes a point to say good morning everyday

7. Is strong at the broken places

8. Has a great credit score 😉

9. Has spunk and opinions

10. Has had so many amazing experiences since his diagnosis

11. Is cared for and loved by so many people

12. Is loves fiercely and warmly by God

13. Married me

14. Married me on June 20th, 2015

15. Loves my family

16. Supports me in everything I want to do

17. Listens to my rambling

18. Goes along with my crazy ideas

19. Encourages me to write

20. Adopted our wild, wily dachshund, Conner

I’m F.I.N.E.

“Don’t do anything but wait. Everything will pass, and serenity and accepted mysteries and disillusionments, and the tenderness of a few good people, and new opportunities and ever so much of life, in a word, will remain. You will do all sorts of things yet, and I will help you. The only thing is not to melt in the meanwhile.”

— Henry James, letter to Grace Norton, July 28, 1883

 

How are you doing?

The question dreaded by all of those dysfunctional souls or otherwise.  It’s the kind of question that many people don’t make the time to listen to the answer to before they ask it — and I am not offended by that at all. I understand. I’m no different. It’s human nature. It’s a courtesy. But it, most often, is not the start of a conversation.

And besides, the people who know me best know how I’m doing (much of the time): f.i.n.e. — f*cked up, insecure, neurotic, egotistical. The last thing I want to do is offend my genteel audience, but this acronym is just too good not to share with you. Plus I think that’s how many of us feel, our little, green worlds falling apart one minute only to be spared by whatever or whomever holds us steady after each silent implosion.

This year has been rough for both Sam and me. We’re both doing f.i.n.e., thank you. And who knows why, really? Except, of course, why with a capital “W.” But it’s all of those lowercase “whys” that add up to me feeling like the mad woman in the short story, “The Yellow Wallpaper.”

“I don’t like to look out of the windows even—there are so many of those creeping women, and they creep so fast. I wonder if they all come out of that wall-paper as I did?”

There are days when I feel like everyone in the little office in my head has taken the day off and is either throwing a rager or gone home sick, leaving me all too ready to blame someone for not doing enough or not caring enough and just wanting to spend the day in bed, not having the energy to push to maintain the order that keeps my head (and our life) above water.

I don’t share any of this for pity. If you’re continuing to read this blog, then you know how difficult every day must be for us. But I believe in the power of vulnerability and in shared suffering, or suffering shared. You don’t have to be a caregiver for you husband who has ALS to feel like some days you are just going crazy or going through the motions or simply not living.

Cliche? Absolutely. Still, I can’t help but to wonder if a cliche is the truth without your emotion behind it, making it sound empty and devoid of applicability. This concept was presented in How to Change Your Mind by Michael Pollan. A fascinating book on the benefits of LSD to treat everything from anxiety and depression to a terminal cancer patient’s fear of death. If you’re looking for something completely different, it’s worth a read.

Now, back to F.I.N.E.

So, next time someone ask how you’re doing, and you respond fine automatically, remember that acronym. It will force you to take stock of what is really rolling around up there, and do what you need to do to help make your day livable.

There. That’s my tiny offering of help for those days when the world just isn’t right.

I’ve been thinking a lot about distractions and considering how Sam and I use them to leave undesirable places, like in this poem by W.B. Yeats, “The Circus Animals’ Desertion.”

“Now that my ladder’s gone,

I must lie down where all the ladders start

In the foul rag and bone shop of the heart.

“[T]he foul rag and bone shop of the heart” … I like that. If your ladder fails you, you fall back to where you started out. You sit. You sort through all of that mess that you want to avoid. Eventually, you begin the climb again.

But maybe Sam and I don’t need another ladder just now. Maybe we begin a new journey here, between musty dreams and ugly disappointments, where all ladders start, just trying not to melt until it all passes.

 

I’m in here.

Even though I am the person who knows Sam best, I often wonder what loop runs through his head.

Communication has become an increasing challenge recently. And if you know Sam, you know he is not the most communicative fellow. He takes his time to process, and for someone who needs instant affirmation, this can be frustrating to me at times. Then I think, well, he is processing the most complex, avidly-avoided subject of everyone’s life: death.

ALS continues to be a journey filled with loss, and relationships are no exception. I’ve been considering, no, raging, at the fact that during the most difficult time in his life, Sam has to lose people along with himself. He is unheard in many different ways and on many different levels by so many people. I’m no exception.

Although I am, by nature, a critical person, I never want anyone who reads this blog to feel criticized. For better and worse, I am the person who receives the brunt of my most taxing harangues. I just believe that Sam has a story that needs to be told, and writing helps me to alleviate the pain and despair and numbness that consumes both of us at times.

ALS drains Sam of the physical and emotional energy required to butt his way into conversations, and all too often he sits silently, complying with everyone’s need to be heard and acknowledged. Sam has always been a good listener with the unnerving ability to read people, and now he really is all ears.

To preserve precious energy, our communication is dominated by his needs, and Sam hates it more than me. One look up, turn the fan on. Head flick to the right, turn his feeding tube pump off. He’s full. Needs to pee. Move arms. Shift. Lift bed up and down. Up and down. I follow his gaze to guess his need.

I write this to provide a picture of how we spend many hours, not for pity or sympathy. It’s my responsibility to care for Sam, and it is Sam’s responsibility to allow himself to be cared for by me. There are no guarantees in anyone’s life, and if there were, I doubt happiness and ease would be among them. Society places too much importance on attaining happiness. I can’t help but believe that this focus encourages us to run from what is most ugly in life, resulting in completely unnecessary marginalization. I am not immune from grasping blindly at whatever will dull the hurt and exhaustion from caring for Sam. It’s just so cruel to witness.

Our relationship has always been bound by something ethereal. Even though we share fewer words now (or really, he does), I feel no loss in what has always connected us — that something beyond description. This has helped to maintain and strengthen our marriage despite the constant see-sawing in my roles. Caregiver. Wife. Mechanic. Nurse. Private butler.

As anyone who has been through the trenches of terminal illness knows, the disease can’t help but change everyone it truly touches. And yet, the person it steals remains who they are. Sam is still the funny, smart, witty, loyal, playful, goofy, strong man I fell in love with. Lou can attempt to shadow this fact by stealing his voice, but with patience and attentiveness, anyone who wants to can still see Sam as Sam.

He’s still in there.

Who am I supposed to be/who are we?

What makes a man? Without getting lost in gender theory, I want to suggest that what defines a man has nothing to do with what society values: money, status, popularity, chiseled abs. While all of those traits are appreciated and definitely helpful for climbing any corporate or social ladder, I do not believe that they make a man. Or a woman, for that matter.

I know what makes a man. I know because Sam has had all of those society-defined values ripped away forcefully. His career and income has vanished. Supposed friends and want-to-be-friends have disappeared. Lou has taken Sam’s body and made it unknown to both of us — a cage with a beating heart and a will to live.

And yet, he is still Sam. He still has that sly smile, sarcastic sense of humor, critical mind, and the ability to make you feel like the most important girl in the world. When he believes that you have earned it, he is the most loyal and generous man I know.

Maybe this should really be about what makes a person. Because ALS captures a person and makes her completely unknown to herself, her family, her friends, the world. Who are you when everything that you have attempted to define yourself by is stripped away? Your existence becomes quite cerebral, and that is a place that few dare to tread.

I used to tell Sam that I would take this disease for him if I could. Although I meant it at the time, when I ask myself today, four years later, my vow sounds a little shaky. Who would I be without the possibility of making my dreams come true? Who am I without a future? Who would I be without Sam’s wife and caregiver?

As Christians, we believe that there is more after this life. But I do not think that that takes away the pain and fear of losing out on what this life has to offer. It’s a hard life, but it can be such a good life, especially when we place value on the experiences and people in our lives that truly matter.

Amidst all of the striving for what we believe will make us happy, there are those beautiful, little moments when we just are. It may sound cliche, but we should capture those moments for all that they are worth.

A golden heart, a willingness to share what little or much we may have, and the ability to sit with the possibility that we are nothing without that career, spouse, degree, income, house, car, religion, child –whatever it may be that we believe defines us — these are characteristics that last when all else is gone. It’s uncomfortable. But by listening to those doubts, we confirm who we are or recognize the method acting that we call living for what it is.

It’s no different for me. I wonder if I would have confronted all of these thoughts and feelings if Sam hadn’t been diagnosed. I know I would be a different person. Life is like a flowchart: each decision, even small decisions to stay put when we should act, to be quiet when we want to speak, help to mold us into who we are now.

True, some decisions are made for us, and that can put us on a path that leads us to some difficult decisions. But much is in our control. God gave us a brain and a heart for a reason. We need to use both to help us grow into people that, when faced with challenges and despair, know who we are and know where our value comes from.

And that is something that we must take the time to decide for ourselves.

 

 

The sunny road

There is no roadmap for this disease. Lou just takes you by the hand and drags you to a total loss. But sometimes he lets go, losing interest for a while, and you find yourself on the sunny road.

May is nationally recognized as ALS Awareness Month. Four years and I am still trying to figure out what this means to me as a wife/caregiver/best friend of someone with ALS. I want to advocate, but I struggle with how to do that in the most effective way. I am no nurse or fundraiser or technician or speech pathologist or physical therapist or psychologist — despite the fact that I have taken on many of those roles since Sam’s diagnosis. For those of you who knew me five plus years ago, this has definitely been the most brutal path to self-growth.

But then I remembered that there is nothing I enjoy more than reading and discussing ideas. One of the more organized and disciplined ways to share my thoughts involves staring at the computer screen, drenched with angst. Until something takes shape. Then flight. I don’t have a platform, but, like each of you, I have a voice. So, I choose to write.

In her book, The Gifts of Imperfection, Brené Brown writes: “To love someone fiercely, to believe in something with your whole heart, to celebrate a fleeting moment in time, to fully engage in a life that doesn’t come with guarantees — these are risks that involve vulnerability and often pain.”

Isn’t it ironic how what is required of you can cause you so much joy and pain? Ironic seems like a callous word because accepting contradictions, and every wrinkle in your plan, leads, ironically, to more understanding and assurance. Maybe I mean that to give up what you consider to be the most valuable (your time, your youth, your money, your happiness, your silence) can lead to treasures that take some time to see the value in.

In my life, that which is required of me is to care for Sam. I have given everything, and I would do it again. But the more that I throw myself into him and caring for him, the more I let go of what I believed made me, me. Or at least would make me someday. Everything that I “should” have at this age (career, another degree, increased income, house, children, 401k) is just not in the picture. And if I’m not sure that I want it in the first place, what is there to despair or to envy? I know many people must feel this way, ALS or not: off-track and … free?

What I’m trying to say is that this life is so unpredictable, and what you think you lose is really what you gain. And sometimes what you lose is horribly painful. But with no map, Sam and I make our own road, embracing a new path. Losing everything and gaining everything.

It’s taken many dark nights of the soul to sift these thoughts — and I know there will be many more. Sam and I are being led down a path where the ending is unsure.

But with fear of being dismissed as cliche, I know the way by heart. We all do, but we have to give a voice to that intuition — no matter the cost.

 

Dog days, bird feathers

“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all –

And sweetest – in the Gale – is heard –
And sore must be the storm –
That could abash the little Bird
That kept so many warm –

I’ve heard it in the chillest land –
And on the strangest Sea –
Yet – never – in Extremity,
It asked a crumb – of me.

-Emily Dickinson

 

There are some days I just want all of this to be over. Seeing Sam suffer is way too hard. On one Facebook support group for those of us who care for someone with ALS, I often see many caregivers posting that they don’t know which would be worse: to outlive the person they are caring for or to have the person they are caring for go before them.

What a thorny fear to acknowledge. It just pricks you with guilt and anxiety and fear of judgment all at once. And only on our worst days do we even dare to type such despairing thoughts into message boards filled with strangers who feel more like friends than our friends, more like family than our family. Maybe it’s just that these people, like any good support group, understand that screaming, crying, and wanting to throw the dishes is all a part of the process. Caregivers aren’t glorified and neither are their burdens dismissed.

But I can’t claim to speak for every caregiver. Each situation, each person, each progression is completely unique. I only know that shades of my former self are being shed, willingly and unwillingly. As Sam slides deeper into himself, I follow him. We recede simultaneously but not equally.

And at the same time we are suspended by the thing with feathers that gives us the song that just won’t quit. The thing that won’t let us slide into despair — that little bird that is there when we least expect it: hope.

Hope is one of the most bewildering things to me. What it is? Where does it come from? What exactly am I hoping for? And most importantly, why do I hope despite it all?

I don’t really have hard and fast answers to those questions, but I have to believe that hope isn’t a feeling as much as an action. I may not understand the little bird that sings his song from the depths of my heart on even my darkest days, but I choose to call him back, to let him nest in the landscape of my soul. That is my choice; the rest is part of the great mystery.