Thirsty Girl

Thirsty Girl

I light my candle, from my neighbor whom I can no longer see.  I pour myself a portion of my allotted water allowance for the day.   It tastes so good that I realize I am now drinking as an act of prayer.  Water. Life. Taste. Joy.

But the water is never enough to slake my thirst.  And it won’t be. This is now my life and I must come to bear thirst.  I am not so self absorbed that I do not recognize that I am blessed to have a supply of clean water.  The water is here. It is my body that cannot tolerate the water. What a strange, strange time.  

I cannot be with water as I used to.  And I love water. I love to drink it.  I love to be in it. I lived on an island for many years, surrounded by the sea; In those days, I pushed the season of swimming (both lake and ocean), trying to get into the water from the end of May to the first of October.  Six hours north of Boston, this was quite a feat. My first novel was entitled, “Water All Around Me.” I always had a tall glass of water or green tea beside me. Coffee each morning. Water, water, water.  

But, no more.

Also No More is life as we knew it.  We are inside, save for walking the dog.  (Thank heavens for the dog; he and his kind are perhaps the sole beneficiaries of people staying home.)

I have been startled by how difficult this time is for me.  I’ve been isolating longer than others, yes. So that could be part of it.  Yet, I am trying to figure out the rest of it.

A couple of weeks ago or so, I gave up my morning coffee; to benefit my kidneys, I switched to water only.  I missed it. It had been my morning ritual for so long, albeit decaf since heart trouble began. No problem.  But when I had to stop seeing my coffee-drinking-writing-compassionate-intelligent neighbor, that hurt. I told her:  turns out I can give up coffee, but not you. We now take short walks, six feet apart. It’s better than nothing, but it is also akin to my water allotment:  it is never enough; it does not slake my thirst for connection. I miss the rest of her family, too.

And then there is the behemoth of my loss:  I miss my grandson and my granddaughter. My Grandson is an infant.  At least I can content myself that he doesn’t know I’m not there (though surely he does know when I am).  But I miss his smiles. Oh I do. My granddaughter is old enough to miss me and to ask for me. She is not, however, old enough to understand why I’m not there.  She asks for me. She longs for me. As I do, her.

The only reason I don’t go see those children is that I want to be there for the long haul.  Otherwise, I would risk all for them in a heartbeat.

So there’s that.  Reason enough to be handling this isolation with difficulty.  But, there are many grandparents who don’t live near their grandkids, and they find a way.  I know this. What’s really going on here?

I think what might be happening is that I was already employing all of my coping mechanisms to contend with my illness.  As my physical illness has worsened, I’ve been really skilled at adapting and finding joy. I guess I mistakenly assumed that I had an unlimited reservoir of coping.  A reservoir. There’s that water imagery again. It now appears that my coping reservoir, like my water allotment has shrunk. I was dipping into it time and again; now there is not enough left to slake my thirst.  

I must learn to be thirsty, emotionally and physically.

Back to the basics I go.  Counting my joys and there still are many.  My steadfast husband, my great love. My dog.  My water allotment. Walking six feet apart from my neighbor.

I will weather this, I think.  But I am not at all sure.

Between Your Heart and Mine

My heart and my mind keep turning to M., my darling little neighbor.  She doesn’t speak often and when she does, it is in a high, childish voice; one that belies her eleven years on this earth; one that sounds more like a little, tiny girl of, say, six or seven years. M. has selective mutism.  

Speaking, except when in the safety of her own home, is not her thing.

I’ve been thinking of how it feels to spend time with M.  Here are the words that best describe that time: Companionable.  Nurturing. Easy. Calm. No pressure. Peaceful.  

Moreover, I notice that as I spend time with M., I speak less.  But we communicate more.  

Commune, is the word I would use to describe our non-verbal time together.  Commune means intimate communication, rapport, and often means a spiritual communion that is without words.  Interesting. Does removing language from communicating enhance our heart connection?

This leads me to consider other  times I use my heart and not my words to communicate.  Presence. Being with. The way that we are in support of another’s being.  I think of my granddaughter. My Mom was observing us and commented: “You’re so calm with her.”  I thought about that. She’s right. The calmness comes from the energy I so want to transmit to S.  I’ve got you. There’s nothing more important to me than you. I love you. Additionally, S. must feel my heart truth:  There’s nowhere I’d rather be than with you. Surely when we are aligned with our being’s purpose, calm is the resulting energy.

When else do I feel that pervading sense of calm?  When my husband touches my back as I’m driving and I feel my being flooded with relaxation.  When I snuggle up with my husband at night. When my sweet yellow lab lays his giant head on me.  When I’m near the ocean. When I listen to music. When I read. I used to feel this all the time when I walked through the woods in Maine.  Swimming in a pond. Creating art with my studio mates. I used to feel this when I was doing crisis family therapy, using all of my senses to read the situation and to respond in a way that brought people together.  Doing hospice work. When I am with my granddaughter.

And when M. and I hang out.

So clearly M. is both eliciting and responding to sacred space.  That is REALLY valuable stuff.   

It might also be that language inherently puts a demand on us, both in speaking and listening.

Why, then, do I care about M. being able to speak with more ease?  I don’t care about it for our time together. I care about it so that she can more readily manage her contacts with our world.  We live in an extroverted, loud, speech dominant world. For women, finding our voices is NOT a given; for this child, even more so.  How can I assist M. in being able to speak up while also valuing her intuitive language, that which elicits communion for herself and for others?

I think about differences.  My spouse is severely sight impaired.  My heart is failing. My neighbor has cerebral palsy . My friend’s parents are both deaf.  If they speak at all, it is accompanied by signing; the spoken word is never going to be their first language.  My Bobah immigrated from Russia and had to adopt a new language, painstakingly. My nephew is non-verbal and autistic.  My son has a disorder of written expression. Our nation of immigrants struggles to find words with which we can reach one another.  

I value diversity so very much.  Being able to HEAR the unique experiences of others is exactly why I loved being a therapist.  It is also why I love jumping into other worlds via books. It is also why I love this big, crazy, noisy, speech centric world.  

And it is also why I treasure quiet spaces, why time with M. reminds me of the inherent value in how she intuitively communicates.  

Here’s another little snapshot:  My granddaughter is a little over two years old. She’s besieged with instructions to use her words.  At daycare she has had her share of biting and hitting. I observe her working so very hard to decipher her world, figure out expectations, figure out her feelings and respond appropriately- which means with words.  What a tall order. And what a relief for her when she comes to play with M. M. allows S. to play quietly , both of them near one another. No demands. Just close proximity. This is, in part, the classic parallel play that toddlers engage in.  It is also more than that because M. is older and is therefore able and willing to share. M. is also attuned to what S. might need. She is a nurturing and non-demanding presence. S. thrives in this context.

But what of M.?  When does she experience such a non-threatening interaction, besides with her parents and perhaps for the hour a week she spends in play therapy?  M. works so hard to communicate at school and with her friends….even with me as she finds the need to employ her high voice-whisper. I frequently have to ask her to repeat herself.  I try to tell her I have old ears, to spare her thinking it is her speech.  

I’ve been reading up on treatment for selective mutism. I consider myself to  be a card carrying member of Team M, which includes her extremely able parents and a cadre of grandparents.  I think I can come up with some fun activities that might also help M. expand her speaking repertoire. But I hope that I will never, ever lose sight of the intrinsic value of M.’s native communication style.  She adds to the color of this world, inviting us to stretch our sense of how we can interact.  

It never hurts to let this question sit alongside all that we do:  Should M. be working to adapt to the speaking world or should the speaking world be working to adapt to her?  I know the PRACTICAL answer to this question. But I raise this more for the apriori preconceptions behind the question.  What are the inherent assumptions? That M. can grow in the spoken word (as opposed to insisting that the blind learn to see or the wheelchair bound walk); That the spoken word is somehow superior to other modes of communicating; That the dominant culture gets saliency; That diversity is not as important as conformity; That we’ve got to “fix” M.  

What do you think?

I’ll leave you with a few words from Alison Krause’s song:  “When You Say Nothing At All,”

It’s amazing how you can speak right to my heart.

Without saying a word you can light up the dark.

Try as I may I could never explain what I hear when you don’t say a thing.

You say it best when you say nothing at all.

Heart Failure Half Life

Today I went out for coffee with one of my favorite people, R.  It has been one of those weeks for us both; she has a dog with a stomach virus, which forced her to operate on disrupted sleep for the week, a tall order for someone who expends extra energy on EVERYTHING due to her Cerebral Palsy.  Moreover, she was battling bureaucracy this week, attempting to undo an oversight at her medicaid agency that rendered her daughter’s behavioral health prescription invalid. R. is one of those people who problem solves as easily as some people breathe, but even she couldn’t penetrate the bureaucracy this week.  Still no prescription and it is now Friday. Sigh.

As for me, I made it through a week on my new heart failure prescription, which is, actually, one half of the pediatric dose; I have about five more jumps before I get to the  target dose. I realize, as is typical for me and R, our lives mirror one another in intriguing ways: We are both tired this week and we are both ruled by meds, one way or another. 

I’m just sitting down to write, finding, as is often the case, that time with R. helps me to process what I’m experiencing.  Either my half-dose or my heart failure, or perhaps both, is tiring me in ways I notice only gradually.  For example, I’m out for coffee today, which makes me acknowledge that I’m tired by the time I walk down the hall, let alone get to the coffee shop.   I need to balance my indoor life with my need to enter into the greater world. Yet, even as I write this, I am realizing that the pleasure of getting out was, I think, too heavily undercut by my physiological response; I’m better off right now just having coffee at home with R.  But what of the other losses this week? The heavy drop in my blood pressure necessitated changes in small pleasures I might have otherwise had (such as a bath at night to relax), but even more than that, I now know, after time with brillant R, I’m exhausted from problem solving.  

I can’t suck in enough oxygen, I just can’t.  From there, I’m slowed down by meds and I’m slowed down in consuming these life saving meds by my paltry blood pressure; all of it is fatiguing in synergistic ways.

So what have we here?  This is the same question I asked the last time I wrote.  I have a half life. I think it is important to name it as such.     I have residues from my fuller life, much as a medication might remain in our bodies as a lingering echo. 

I know first hand that my condition can, and probably will, take a higher toll before I can get better – if I get better.  I know what it’s like to be so depleted that I cannot read ( a favorite half-life pastime of mine); that I cannot write; that I cannot cook.  I try to remain grateful for what I can do; however, in listening to my problem-solving friend recount her challenges this week, I am moved by how much energy she puts into working around obstacles.   There is a cost to this. There’s always a cost to being brilliant at work arounds. What happens when I am working so very hard to cope? It’s tiring, yes. It’s also an obscuring activity, deflecting from loss, from full acknowledgment of how hard something is.  

I have to be brave enough to name this.

What do I miss this week?  First and foremost, I miss being with my granddaughter fully.  I miss having the energy to go out with my husband. I miss the spontaneity of running out to do an errand.  I miss having a glass of wine. I miss walking downtown. I miss traveling. I miss sleeping without oxygen and a ventilator.  I miss baths.

Heart failure is gradual and it is acute.  I’ve let go of many things. In this respect, the acute phase is easier for me this time.  Things that I regained were always clearly just on loan to me. I never ask doctors that question:  How long do I have? I know I’m on borrowed time. I just want to eke out all that I can. I’d love to beat the odds and get another five or ten years or more. 

Even half life years.  

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.