Do Good to Feel Good, Part II

Now I'd like to play a couple rounds of Devil's Advocate.

Let's put it on the table. Is there such thing as too much giving? After all, some of us are already helping people. All. The. Time.

We volunteer at the retirement home, we bake for the neighbors. Perhaps we run a little NPO on the side that distributes funds and clothing, or join every other community hesed committee, or run off to a wedding hall in the middle of the night to pick up and distribute the leftover food.

Or maybe we do some or all of the above, PLUS we've found our life's calling in one of those pointedly-named Helping Professions --as a social worker, therapist, nurse or charity office manager. What could be better? We are assured an opportunity to help others, every day, and often in the most moving and meaningful ways. We take care of others' bodies and souls. We sooth mental anguish and relieve financial burdens, advocate for the disenfranchised and restore human dignity. We do all of this without pitying or patronizing.

So is there such thing as helping too much? We love our life's work because it is life-giving, meaningful, significant. We believe our professional role is right and yes, a kind of moral obligation. But we often resent the conditions: Low pay, little recognition, case overload, stressful work environment.

I'm thinking about yet another phenomenon. How do you do it, how can you work here, with such sick kids? someone will query in admiration. Kol haKavod (Bravo!), that's amazing! They don't get it. I can do this work because love this work, and when I'm doing it, my life feels meaningful and significant.

The problem comes later, when I get home. Sometimes it hits me, how sick those kids really are, and I am exhausted. Weighing me down are all the patients I didn't have time to work with. The parents I didn't get back to. That uncomfortable exchange with a short-tempered staff member. The feeling of being constantly on call -- encouraging, empathic, organized and authoritative -- but not too authoritative. These things can all but wash out the day's many successes.

Worse, I often find myself unable to regroup and focus by the time I've finished my commute home. My own kids need me. They need someone to give them lunch and watch their gymnastics practice and blows their noses and help with their math homework. They don't feel my own need to go to the bathroom and then sit down for five minutes, alone, over a hot drink. Whatever went on in my day until now is completely irrelevant. They expect focused, energetic Mommy, ready to go and full speed ahead.

The work itself is not the problem, it's maintaining my strength to give and give, all morning and afternoon, and then give again into the evening. It's keeping up the required enthusiasm at home to do all the day-to-day tasks, with the patience my kids deserve from me.

Sometimes I fantasize leaving for a well-compensated, "normal" office job, or locking myself away in my studio, "arting" around all day. I imagine opening a small craft business, or private therapy work with a limited number of clients. But getting down to it, I know I would only do such a thing if I were to reach the conclusion that the price had gotten too high, that I could no longer keep up both ends of the giving spectrum, and that giving at work was always at the expense of giving at home.

And here's where I have to admit it. For all its difficulties, hospital work gives me a sense of status and accomplishment that, for whatever reason, I cannot always seem to muster at home. Maybe that's the fallout for some of us girls who grew up in the Seventies on Sesame Street and Free to Be... You and Me. Or maybe it's just that at work, I'm an experienced professional, a figure of authority, a source of knowledge and understanding, while at home, I'm "just" Mom.

Their only Mom. Full speed ahead.

Keep the balance,

ALN

____

For more on why we help one another, this is another interesting NYT piece, especially the part about the role of the sclera (whites of the eyes) in human altruistic behavior.

Long Overdue -- A Day in Their Life

(This piece is from back in August. My apologizes for the lengthy post gap, and my thanks to you, loyal readers, for bearing with me).

When in London, we like to visit friends, and one family in particular who we're pretty sure we won't be able to see on our side of the world, since they rarely travel outside of England.

Their first-born, D, is a handsome, dark-haired boy with huge brown eyes, who came into the world with an exceedingly rare condition that has left his mind stranded in early infancy, even as his body continues to grow. On our last visit, when D was five, they shared with us one of his recent accomplishments -- reaching forward to push a large button on a musical toy. Now he is seven and he is much the same, only bigger and heavier.

Our time with them this afternoon was brief, which was really too bad, but during that two-hour visit I began to understand a little more about a few aspects of their lives. Here are some of the "simple" things, things I'd barely thought about before now.

Recycling. I offered to take a couple of glass bottles out to the curbside bins, and casually remarked that I wished Israel also had a curbside recycling program. Our friend, D's mother, pointed out that since cardboard was added to their borough's list, only a few months before, their lives had gotten a bit easier. Previously, they disposed of all those carton containers housing D's special feeding and care supplies only by dividing them among their neighbors' waste bins, since London's notoriously strict waste collection laws require that all items fitwithin the bin, or else forgo collection.

Shabbat. As D's body grows, he gains weight but not strength, and his parents can no longer lift him with ease. Several rooms in their house have been fitted with ceiling tracks for an electric hoist system to aid them in day-to-day care for D. But the hoists cannot be operated on Shabbat, nor can they be fitted with a time switch, since their control requires precise adjustments in real time, or D could be crushed. If they exchange the electric hoist for a hydrolic one (their health plan will only fund one), they solve the Shabbat problem but are stuck with an awkward manual one seven days a week. (One potential solution? Ebay...).

Unplanned "surprises." D and his family have known many good days in a row, days in which D can enjoy his classmates' company, bang away on his keyboard, and lie peacefully while his siblings play around him. And then comes the now long-expected unexpected: nonstop seizures that can last through day and night, leaving D exhausted and confused, and his parents feeling exhausted and helpless. It is just awful watching your child suffer, his mother writes me, and D clearly suffers.

Food and drink. D has dysphagia and struggles to swallow. All his liquids must be mixed with starch until they form a paste, to prevent them ending up down his windpipe. All foods must be pulverized, and even then he struggles to consume enough calories, and there are days when he suffers seizures and cannot eat at all. During these times he receives his nutrition via a PEG directly into his stomach, up to four times a day.

A day off. If our friends want to go away for the weekend, or even for the day, they must book hospice care for D in advance. Since hospice costs £400 - 1000 per diem, they must remain within their sponsored allotment of 20 days a year. (Last year it was 30; just another microcosmic fall-out of the market implosion). Twenty days of respite sounds like a lot, until you start to do the math:

One weekend = 3 days of hospice

Since any trip they take requires setting up D at the hospice care (half a day, plus/minus) and picking him up (another half a day), that's nearly one full day, already gone. One short trip abroad would use up half their annual allotment. (And yes, each of them has family abroad).

I haven't even touched on their morning routine --morning time, school travel, bath time, bed time -- since I don't know much about those things. Our conversation touched on other, "regular" issues, like our satisfaction level [medium-to-low] with our respective kids' education systems. (They have other, "normal" children and work hard to make sure these children lead "normal" lives, inasmuch as the siblings of special children live normal lives).

These friends are some of the brightest people I know. They are well-educated, balanced, hard-working, and kind. They have family for moral support, some extra help at home, and a hard-earned familiarity with "the system." But this is their reality, every day, and it is exhausting. Sometimes, when I feel my own exhaustion at the end of a long morning of work and an even longer afternoon of whiny children, I think of them. I don't know how they do it. But they do it.

If, despite the crash, you still have a few shekels / dollars / pounds to spare and would like to donate them to a worthy cause, please consider a respite program such as Shalva, a rehab hospital such as Alyn, or any similar organization -- there are hundreds -- you feel is worthwhile.

Keep the balance,

ALN

Don't Have the Answers, But Glad You Asked

The Challenge:  Describe your job in one sentence or less.

My Answer:  My job is to listen to kids.

OK, so sometimes "listening" comes in the form of watching them draw, or joining them as they play, or helping them surf the net, or just sitting nearby while they read.  And, of course, the kids I listen to are sick, or are recovering from being sick, or were sick in the past, or are sick again.

Leave out that last part about the sick kids, and replace what's left with the additional cleaning, laundry, dishwashing, fetching & carrying, and we've just described the Second Shift, a.k.a. The Home Front.

I admit it:  Part of me has been waiting for years for my kids to get a little older, so we could start having some real conversations, the ones that extend beyond "Why can't I have a cookie? But why?!?"  It seems that time has arrived, and the questions have been rolling in.

Elder Princeski will be ten soon, and her questions tend to reflect her newly-developing empathy and Theory of Mind.  Always the Imp has just turned six, but her line of questioning (once she gets past all those unreasonable demands resulting from her sugar addiction) has always pushed the envelope, amplifying her imp-like attributes.

Yesterday afternoon I decided it was time to euthanize the poor goldfish who, having displayed multiple signs of illness for nearly half a year (and had long since been placed in isolation from his healthier peers), was now showing acute signs of imminent status change. 

Elder Princeski took an interest and even assisted.  We used an ice-water bath, recommended as the most humane method by Dick Mills in You and Your Aquarium (London: DK), while Always hid herself away until the deed was done.  Later, of course, there were thoughts and reflections on the matter, which surfaced today during Shabbat lunch.

Always the Imp:  Mommy, when you die, I want to keep the whole house for myself.  But I don't need the things inside it, you can give those to somebody else.

Me:  [Which Left Field did that one come out of?  Oh, maybe it was the fish...] Why?  Do you want me to die soon?

Always:  Of course not, but when you do, much later, when I'm already big...

Elder Princeski:  Mommy, I don't want you to die for a long time... but when you do, I'll keep the things inside the house.  I won't need the house itself because I will be married and my husband will buy me a house.

(Short discussion on the topic of religious vs civil inheritance laws.)

The conversation then evolved into a series of questions about Grandma (that's my 95-year-old grandmother -- see here), wondering how much longer she would continue to live, and if she wants to live much longer, and whether, were she to become very sick, dependent, and pain-ridden, she would choose to die (from what she has told me in the past, I wouldn't put it past her).   

We did our best to answer all of these clearly and honestly, with equal measures of optimism and realism.

Then there were questions about death itself.  What does it feel like?, and Does it hurt? and Do people know they're dying?   I told them about the reports I had read on near-death experiences, in which people described feelings of well-being, comfort, and being reunited with lost loved ones.  I told them that no one could prove whether these things really happen, but that many people felt and believed that this is what had happened to them.

Throughout this conversation, my internal voice was asking how much of an influence my Day Job was having here on the Home Front.  I think about death a lot, because I encounter death a lot, and so it is on my mind --  sometimes at a frequency that surpasses what I would consider to be a level of healthy denial.  

I try to keep that to myself, at least around the kids, but as they grow older they develop an awareness of what I do for a living;  Elder Princeski has even accompanied me to work events a couple of times. Sometimes they ask questions about work, and while I don't shy away from answering, I try to keep my answers short and to the point.  

The thing is, kids know about death.  They think about death.  They wonder about it, and they have questions.  At a certain point, they lose their dog, or their grandfather, or their neighbor, or their parent, and they learn that death can't be avoided.   

All of this obligates us to invite their questions, listen to their concerns, and share some answers -- gradually, thoughtfully, and straightforwardly.  Which we tried to do this afternoon.

Suppertime brought with it a whole slew of questions, this time about Down Syndrome, its causes and effects.  For another time...

Keep the balance,

ALN

Occupation As Balance

(No, not that kind of occupation.  I truly, honestly do not know how to address that topic in this forum, or with which vocabulary, and so I leave it aside).

Why I don't call my good friends more often than I do?  This evening I picked up the phone and dialed my friend N, and rediscovered how fantastic, how comforting it is to have those conversations and compare the day-to-day... The freshly-discovered gutter leak in the newly-purchased house;  the parallel laments over negligent school systems long-overdue for an over-haul;  our mutual agreement that the Obamas' extended family support system will only benefit them as a young, busy, professional couple preparing for the next busy stage in their lives... and on and on.

The conversation reaches that inevitable topic:  work, motherhood, how to do it all and keep the guilt minimal, the multi-tasking maximal, and everything in between relaxed and stable enough to keep everyones' lives together and whole and enjoyable.  

N works a much longer day than I do and gives her husband A a lot of credit for his super-husband abilities, especially in recent years, but reminds me of what it takes to reach household stability.   Sometimes one of them is down, sometimes the other.  But they know to take it in turns.  Both she and A cannot both let themselves feel drained.  

Or, as N put it, If that space is occupied in the house, then I know I can't be there... That is, she understands she has to stay upbeat and hold on to the energy level until A can get it back again, and then she can let her end drop a bit and let him pick up the slack.  

It's not always going to happen.  Within our own four walls, I know there's no guarantee that the two of us aren't going to hit some kind of simultaneous slump;  it just might happen, and it sometimes does.  We both get tired, cranky, past our peak.  Then maybe it's time, as it was last night, to just go upstairs and hang the laundry together, instead of trying to figure out whose turn it is.

Occupation as balance?  Maybe, if we can just hang on and take it in turns.  Hang in there, N.

Keep the balance,

ALN