Balancing on a Pin

balance is as elusive in heart failure as it is in life and in our world.  I have to listen carefully for it. There isn’t any margin for error, such as I  had when younger, healthier. I can’t overextend and make it up. I need to think about the sodium in everything I eat.  I must measure how much fluid I consume in my coffee cup, my yogurt, my water glass. My doctors handle the complex meds, made more difficult by my very low blood  pressure. The rest is up to me.

I think about things like how to live the life I have fully.  There are subtle but powerful notes of Grace in this contracted life that heart failure offers.  I’ve written before about mindfulness as an accessible adjunct to HF. I have time to watch the trees sway in the wind today, to watch the raindrops cluster on my twinkle lights, to scratch the ears of my labrador when he nudges my hand as I write. I love love love reading near my husband in quiet companionship.  We put our books down to sing along with a favorite song on Pandora: Van Morrison’s Tupelo Honey. Truthfully, there aren’t enough hours in my day to notice all that there is in my contracted world. Yet I know that contracture can turn into an arid space. I don’t want to just whittle down my life.

I love the word abundance.  Think about how much a mindset of scarcity impacts our world and our lives.  I-don’t-have-enough-thinking leads to a posture of drawing in, protecting our borders and shutting out others.  So what can I do? How can I create an abundance mindset? Coffee ends up being a good place to start. I have a morning coffee ritual (decaf) that is dear to me.  I buy good beans and grind them fresh. I add a touch of cocoa powder and cream. I love it. Even more, I share this ritual with my neighbor, who is my dear friend.  Coffee, then, has also become connection for me: Vital on many levels.

The first thing I did was to measure  out the amount of water I use to make my giant cup of coffee.  I’ll admit I was a bit shocked by how much water this entails. I’m allowed two liters daily, and that includes any beverage or wet food such as yogurt, jello, cooked oatmeal, soup.  It goes quickly. But my coffee is JOY, first thing in the day, before that awful lasix hits, before I dissolve my potassium pills into my yogurt, before my HF pills knock down my blood pressure again.  I decide to reserve the water for coffee. Can’t put a price on Joy.  

The second thing I do is to measure my remaining water (after factoring in the yogurt), into two cups, one of which I put away for the afternoon/evening.  I’m seeking the abundant feeling of a big glass of water, minus the dreaded feeling of knowing my fluid allotment is dwindling. I accomplish this by splitting my water into those two cups.  I feel luxurious sipping my water.

Of course, I can’t figure out all of this stuff out on my own.  I hum the Beatles lyrics “I get by with a little help from my friends” as if it is my mantra.  My brilliant coffee drinking neighbor came up with the idea of asking the doctor for permission to take in a few more cups of fluid a week so that we can go out to our favorite coffee shop and indulge. I love that idea:  An indulgence instead of a failure to follow rules. More abundance thinking.

Meanwhile, my friend’s husband, who loves to cook, has been figuring out meals for me.  In truth, he’s just straight up shopping and cooking for me. Even more, I can see now that he has been teaching me abundance.  I’m not just cutting out salt, I’m adding in wonderful foods. My first thought had been to order from a medical meal service. I was so tired.  I didn’t think I could cook. He just knew. The pre-packaged meals were depressingly bad. Without his help, I would have just sucked those down.  My poor hubby would’ve been stuck with lean cuisine. Bit by bit, my neighbor is teaching me that the investment of time and energy in cooking is worth it; that he’s there to help me with meal ideas; that cooking can be entertaining even now, even when I thought I couldn’t manage. Also, cooking is now filled with connection. Now it’s true that I haven’t really cooked yet. He’s done it for me.  For instance, he made a gorgeous crockpot full of meat and veggies that I will turn on tomorrow. It should last for two or three meals. My miracle is that my husband and I have made a grocery list/ plan for the meal after that. I feel like it’s possible. What could be more abundant thinking than that?

I do still worry that this is all too much on my friends and family and that I will tire them by accepting help.  I don’t know what to do about that fear. I’m sure it stems from my longstanding tendency to overexert myself in tending to others.  I guess I have to have faith that others know their limits? Still working on that.

Speaking of limits, my daughter is bringing dinner for us tonight.  Honestly, I tried to tell her not to do this. She’s nine months pregnant with my second grandbaby.  I think about my daughter all the time, so pregnant, working full time, with a husband that travels. I wish so much that I were the one helping her.  Also, I’m complicated; bringing food to me requires such forethought. She’s got this, she says. My amazing, grown up girl.  

Meanwhile, things are always changing.  I had a good experience last night with a difficult medication.  I guess I thought that today, then, might be easier. It’s not. I’ve had to up my oxygen to 4 liters.  I can’t do a thing today. My grandbaby will be coming over in a little bit. I know I have to learn to just BE with her, rather than doing.  I won’t scoop her up. I’ll sit on the couch and let her come to me. I’m sure there’s Grace in learning this too. Being vs. doing and all that.  I’ve got to experience that one to get it, though.   

Balance.  My meds. My needs.  Depending on others. Reconfiguring how I relate.  All those pills and restrictions. Do I want to balance on the head of a pin?  Not really. But I want to be here, with my husband, my family and my friends. I want to notice all that joy that is accessible to me still.  I want to learn.

What Have We Here?

Yellow dog breathing beside me.  A special friend who knows me well enough to clear the way forward for me.  The sound of my dear husband’s squeaky chair as he writes. My Nora Jones Pandora station playing Clapton’s “If I Could Change the World.” My Candle flickering beside me.  Floor to ceiling windows allowing me to be outdoors on my inside day. My red hummingbird feeder, signaling my hopes that one or two little wonders will choose to stay with me over the winter.

Mindfulness comes a little more easily to those of us with heart failure.  We slow down. Our world contracts. We are more at home and more with ourselves.  

Over the past two years, my new specialized pacemaker has allowed my world to widen.  I’ve done things I never thought I could do again: walking downtown, eating out, paddling around a bit in the pool.  I stopped counting salt and water. I ate what I wanted.  

The shining glory and gold of this time was that I was able to be a grandmother to my  first grandbaby and to grow closer to my daughter and son-in-law. I can honestly say I took not one moment of my time with my granddaughter for granted. Not one moment. 

I did, however, begin to think that I was past heart failure; that perhaps my myriad other heart and health issues were all that was on my plate; that I could be the grandmother I wanted to be to Sam, that I could see my daughter and son-in-law through this next family transition, that I could, I could, I could…..

Instead, I’ve come home again.  My heart failure is back. And my Grandson is due to be born in November.

The timing is not at all what I wanted.  

And it all does break my heart, just a little.   

Back I go to noticing things in my small world.  I hear my dog sigh as he settles near me. I see the blues and pinks in my dining room.  I overhear my husband talking to a student who says: I always feel like a bother when I need help.  Indeed. Indeed.

I need help.

I let those words stand alone because, if I say them at all, I hurry past them.  I always feel like a bother when I need help, this young man admits. Hmmm. Turns out I do too.  But lucky me, I have people in my life who figure that out about me and who are so gracious, so kind and so much fun, that accepting help feels like the Blessing that it is.  These are some of the wonders that will stay with me over this winter of mine. How did I get so lucky?  

Maybe I’m finally going to learn to receive.  Imagine how much more I will have to give then.  Imagine what another period of mindfulness will teach me.  Imagine a world in which we all help one another, as we are able, and that what we can give without depleting ourselves is, most wonderfully, enough.

Imagine growing wise.  

Imperfect Vessels

As I have aged, I have become more appreciative of the vessel that is my body.  As time and illness and injury have each taken its toll on my physical vessel, I have come to regard my body as an imperfect, wonderous miracle.   It is with kinder eyes that I see myself now: lumps, bumps, bulges.  I can feel how hard my heart works, scarred though it is, to supply enough oxygen rich blood to get me up a short set of stairs or across the street.   It is an effort.  I notice that.  I appreciate it.  I’m thankful for it.

Conversely, as a young woman, I led a busy and very physical life.  Working.  Raising children.  Engaging in my favorite spiritual  past times:  hiking, swimming, kayaking, walking.  The list goes on and on.  I enjoyed using my body and I demanded a lot of it.  In significant ways, I took my youth, my beauty and my health for granted.  I was far to busy to THINK about it.  When I was still, I was in nature, thinking about oneness and connection.  I felt a great kinship with the land, the sea and the sky.  That meant a lot to me.  But I did not fully appreciate the vessel that allowed me to BE.

I imagine that my son and my husband, both of whom have had to contend with severe physical challenges, have long been more aware of their vessels.  Imperfection, physical imperfection, was and is something that they have to confront in every instance that they live and breathe in this world.  I will venture to say that I bet they never take their bodies for granted.  But those of us with fully functional  bodies usually do.  Until we age or until something goes wrong.

Rumi says there are a hundred ways to kiss the ground.   My way is through clay.  I make clay vessels, one of a kind, unique.  Each is meant to be a meditation on the beauty inherent in imperfection.   Invite me into your story and let me make a vessel in honor of your beauty.

Time to face the strange ch-changes…

Hanging on to the moments

Hanging on to the moments (Photo credit: demandaj)

Tonight I write as my family sleeps.  In my new life since my heart failure, sleep eludes me.  It seems I can neither sleep at night nor nap.  At first I thought of words I had heard about insomnia long ago:  “Do not fear it as everyone eventually sleeps.”  However, I find that this is not entirely true.  I do catch a few hours here and there.  Most often, I sleep as the first light of day comes, catching 3 to 4 hours.  What I have found is that there are few medications I am allowed to take and all of those make me groggy without providing sleep.  That means I am tired enough to want to sleep, but can’t, and am too tired to do anything else.  So, medication is not the answer.  What is?  Going with the flow.  I will sleep as I can and see what happens.  Oh, the ch-changes.

I have noticed that in times of hardship during my life I am most able to live in the moment.  When my son was injured many years ago, I recall realizing that I was literally living one moment, possibly one day, at a time.  I had to.  There was no other way to manage.  A rather elderly man (and boy, isn’t “elderly” a slippery term!  I’m sure I fall into that category in the eyes of, say, high school students) said to me:  “If you have learned to live one day at a time at your young age, you are doing well, young lady.”  I took that to heart.  But of course I did not keep that up.  Several months later, I was again laboring under the multitude of tasks most of us take on, most certainly those of us who are mothers of young children.  As I learned to “manage”  the crisis of my son’s health situation, I inadvertently allowed distance to creep in and obscure that one-day-at-a-time living.  Perhaps it is impossible not to.

As a child, my family moved frequently.  I believe I had lived in something like 12 places before going off to college.  These places ranged from Wisconsin to Mississippi to Long Island.  It seemed I was always pinch hitting.  When I became a mother, this served me well as I was able to respond to the ever changing ages and stages of my children.  If there was a crisis or someone needed me in the moment, I had the requisite skill set.  After I married Marc, my life settled down and I began to experiment with such things as pacing and setting limits.  I remember I used to ask Marc:  what is a normal amount to do in a day?  I had no concept of when or whether to stop “doing.”  This became more of an issue as I would head off at full  speed and suddenly my energy would drop right out from under me.  I was stunned.  I assumed it all had to do with needing to learn self regulation.  And I am nothing if not an eternal student.  So I worked on it.  But even as I gained the skills, the fatigue did not abate.  I wondered if I had simply taken on too much in life.  Perhaps I had used up all the energy allotted for one lifetime.  Too late, it seemed, I learned to hold some energy in reserve.  Some of that was no doubt at play.  But, the larger part of it, I think, was the beginning of my heart failure.  I did, after all, have a “broken heart” many times over.  But I was in no way in a difficult time of life when the fatigue hit.  My kids were in college.  My husband and I were happily enjoying our “empty nest.”  But that is when the heart condition really caught up with me.

The take away message?  Perhaps there is none.  Who knows?  But my thinking on this is as follows.  Stuff happens.  I have no idea why.  I don’t know why my husband can never catch a break with his eye situation.  I watch him fight through pain everyday.  I have no idea why my son would suffer such a brutal injury at such a young age.  There are many more such examples in my family and in pretty much everyone’s family.  But I do know that as an eternal student, and as a person of faith, I choose to try to see what such experiences yield in terms of learning and perhaps wisdom (one can hope!)  So far, I am learning yet again of the primacy of faith.  This can be as simple as:  I don’t know if I will sleep tonight or I don’t know how well I will cope with the next medication change or I don’t know when I will have the energy to post again or when will I have the energy to grocery shop or to return those items to walmart.  Or it can be as high stakes as:  I don’t know what the story of my children’s lives will be and I have to have faith that they have the tools to cultivate joy and to withstand hardship if they must  (of course, I would sheild them from everything if I could).

Now I have forgotten my other point, which is great, because the better “point” is that I am here now, living, watching, trying, appreciating, loving, some days complaining,  and learning what it means to be.