Love

It feels like the end is getting closer. Connected full time to morphine pump, but pain is still unrelenting, especially in shoulder. Breathing harder. All water and nutrition now through gravity bags — drip, drip, drip. Need assistance for every movement.

Surrounded here by so much love and care I feel I am ready for the next step. I have no regrets at all – I have had a full life, touched and been touched by such wonderful family and friends.

So if there is to be a final lesson for me it is that love is the ultimate gift — love and honesty.

I am so grateful for the messages of support I have received from readers of this blog. And for all the wonderful friends, especially fellow PALS, I have met here. I hope my writing has provided you with some insight and strength with your own challenges – ALS or whatever.

I will soon be at peace, my struggles past. But I will be here in spirit to help strengthen each of you in your lives. So if you here a little voice whispering “Love”, know it is me.

Now Comes the Pain

Up to now I have been fortunate that my symptoms have not included much pain – just occasional twinges. But over the last week or so the pain level has gone up dramatically, especially in my neck and back as those muscles have weakened substantially.  The weak muscles make it hard to hold my head up and find a comfortable position, especially when sitting up.  I can’t easily hold my head steady, so even as I type this (using a stylus with my right hand) I must stop and stretch after every few words.

Along with the weak neck I have just about lost all ability to swallow and eat even thick purees through my mouth — so no more oatmeal or VitaMix soups. The difficulty with eating is that I now lack the ability to move food (even thick purees) around my mouth and down my esophagus safely.  And weak lips means I end up with more on my chin and in my beard than in my stomach.  So all my nutrition and hydration now goes through my button.

To deal with the pain I have started taking more heavy-duty drugs regularly.  They dull, but do not eliminate, the muscle pain.  Massage has helped some, but the effects are temporary.  Because of the drug side effects and neck mobility issues I have decided that I am no longer safe to drive.  I am so glad I have had my blue convertible these last few months. Turns out losing that independence will not such a big deal for me –  I have no trouble getting a ride anywhere I need to go.  Those places are more and more limited because moving around or sitting in one position for too long is simply getting to be too uncomfortable.  Sticking close to home seems even more desirable now.  Not sure how much longer I will be able to enjoy movies or theater out.

If you are now expecting some surprising uplifting learning from these experiences I am afraid I must disappoint you dear reader.  There is no upside to these developments – except the likelihood that these changes signal acceleration in my disease progression and an end to the half living that is the curse of ALS.  It is hard to hear friends tell me I am looking good when I know I look emaciated and have become largely dysfunctional as a working human being.  The question is at what point does the effort and pain of trying to live with at least a modicum of dignity outweigh the value of the love and caring I am able to give and receive from family and friends close to me?

One of my recent gifts to myself is a marvelous new book containing facsimiles of Emily Dickinson’s envelope writings – short scraps of verse and thoughts penned on used envelopes.  These lines caught my eye today:

In this short life that only merely lasts an hour

How much – how little –  is within our power.

 

 

Getting Organized

Lately I have been almost obsessed with getting organized. Cleaning off my desk and editing file drawers. Sorting my closet to give away suits that no longer fit – either my body or lifestyle. Cancelling credit cards we no longer need. Buying desk organizers and “storage solutions”. Becoming “efficient”.

Some of these behaviors are motivated by my need to streamline my life to conserve energy as even simple movements and activities become harder.

But I realize that this behavior has also been a way of getting my affairs in order – of imposing some control on my out-of-control life. As I watch my capabilities further decline I am tempted to use much of my sapping energy on pursuits such as these – keeping me busy but producing little real value, for me or anyone around me.

In all of these pursuits I am formulating and pronouncing, often in a loud voice, “Stuart’s Rules” – the definitive statements on how everything is to be done.

And of course when in the midst of one of my compulsive organizing adventures I can become quite critical and stubborn, behaving badly to the loved ones around me who deserve better.

While perhaps exaggerated now, I realize this is not new behavior in my repertoire. I have struggled all my life with the need to be right, wanting to be in control, and often focusing on really inconsequential details I thought were “manageable” at the price of missing the bigger issues. While I thought these attitudes and behaviors had been mostly in remission until recently, my marauding ALS seems to have weakened my ability or willingness to behave well, opening the door to let these bad behaviors back in.

Learning is possible – even for old sick guys. Sometimes all it takes is to step back and look again from a different perspective – being careful of course not to stumble and fall. Fortunately those closest to me have been brave and honest to point out what they are seeing from me, offer their understanding and providing opportunities for me to learn and change. Usually with enough humor to soften what could otherwise be severe blows to my fragile ego.

I am so grateful they are helping me to see my behaviors through different eyes and set boundaries.

I resolve to be more attentive to my need to control and to try harder to stop my bad behavior.

Bah Humbug

 

I find these days that my mind is racing far ahead of my body.   Objectively my condition has declined but not dramatically.  I can still walk, unassisted in the house and with a cane for short walks out.  I still drive.  Although not speaking Iuse pen, paper and technology to communicate.  I can still feed and care for my bodily needs, although require more assistance.  I can still read and write.  Friends tell me I look good.

But this “reality” does not correspond with my mental state these days.  As I think about my future I am more and more focused on all the negatives – things I can no longer do and an even longer list of capabilities falling away.  I know my future is increasing isolation in my decaying body, less mobility, more discomfort, breathing difficulties and pain.

And I also can sense the pain my decline is bringing to the people closest to me, and want to spare them as much as I am able.

I feel so conflicted.  There is still life and value in living.  There are still many things I can do, people to hug, books to read, movies to watch and music to enjoy.  But the prospect of my accelerating decline make me want to take the “easy way out” much of the time.

Being a good decision analyst I understand the error of making a choice that forecloses options prematurely.  I awoke this morning determined to speed my process by not eating.  I have no explanation for why that idea dominated today.  Stewed in those thoughts most of the morning, started writing thispiece and googling starvation. Started making a spreadsheet in my head. 

I cannot explain the thought process that has led me to decide finally to have my breakfast at 11AM this morning.  Neither the spreadsheet nor the google were especially helpful. Somehow it just came to me that this decision was, indeed, premature.  But my family has pointed out that this is not my favorite time of year, and I should postpone major decisions until the New Year.  So I have retrieved my “Bah Humbug” hat from the closet shelf and will wear it for the next few weeks as a reminder to live my life one day at a time.

FALL

FALL

Not the time of year, but the adventure of tumbling to the ground unceremoniously. Falling has become a new part of my daily struggle with ALS. Fortunately no really serious consequences so far – no broken bones, just a few bruises – including my ego.

While the underlying cause is clearly my weak left leg and the balance issues resulting from uneven leg strength, the proximate cause in every case is failing to be attentive to my movements. A simple move turning from the microwave to the counter with a bowl of oatmeal in my hands plopped me on the kitchen floor because I was not focusing on what is essentially a complex set of maneuvers – twisting, extending arms, shifting weight, balancing the warm food dish, lowering arms. That used to be one smooth, automatic motion. Now I must concentrate on each step, or face the hard task of getting myself up from the floor – also a complex set of movements these days. Even walking in a straight line can be an adventure.

Turns out jumping out of an airplane is easier than cooking my morning oatmeal. Of course, it helped to be strapped to Sven!

Needing to pay careful attention to each movement is one of the constants of my new life. I can not even begin to estimate how many brain cycles I devote to what were once routine activities accomplished with little real thought. Each step, turn, gesture or movement requires conscious focus to avoid disaster. “Speaking” with pen and paper requires the same high attention level. All those dedicated brain cycles are clearly taking much more energy and robbing from more creative tasks. That may help explain some of the “dumb” things I have been doing lately.

Not exactly how I thought mindfulness would work.

Thanksgiving

 

Thanksgiving has always been one of the most important annual dates for our family.  Since Roz and I first celebrated with graduate school friends as newlyweds 47 years ago, the fourth Thursday in November has meant big gatherings of family and friends steeped in lots of love and food.  For the past few years it has meant days of cooking and months of debate about the menu.  But always lots of love.

This year has been special – if bittersweet.  My favorite grandson Spencer joined Simon and Irina as a full-fledged member of the cooking crew, and has more than carried his weight.  It’s a good thing we now have his hands because mine are much less useful – no more heavy chopping or slicing for me.  And I cannot even bark out directions as I have in the past – instead I scurry around the kitchen with my pad and pen offering written suggestions.  Or send gesture and sign messages that Spencer has become quite adept at translating.

But it all smelled sooooo good.

Of course, except for a few sips of Spencer’s sweet potato soup, smell is about all I was able to do with food yesterday.  But I was able to give and accept many hugs from our twenty guests – family and close friends. It was a wonderful occasion – full of love and laughter and good feelings.

It’s hard to write about how I felt about yesterday.  One the one hand it was great to see everyone, and especially rewarding to have Spencer cooking with us and sharing bad jokes the whole time.  But it was hard to not be able to be a full participant.  After a whole life being in the thick of things it is especially hard to engage in a loud setting with many people around. I can do ok one-on-one with my pad and pencil or iPad voice, but groups are too fast moving, loud and multi-voiced for me to become comfortable.  So I find myself hanging back and feeling like an outsider.

I was once quite able to just get in the middle of large conversations.  I understand that my friends and family now would pause and be tolerant of my communication deficits.  And the scariest piece of this for me is realizing that I am close to losing the limited communication ability I still retain.  Pretty soon I will no longer be able to hold a pencil or type out messages – although I am meeting with the rehab folks this week to explore new technologies I might be able to use.

And that feeling may be the most destructive aspect of my ALS, even more than difficulties walking or using my hands.  I realize it is in large part self-imposed, but as I withdraw I am finding I have less to say or share.  It’s all just so hard these days when it used to be effortless.

Discouragement

Feeling discouraged is pretty much a “normal” state of affairs for me these days.  Much of that discouragement arises from spending too much time looking back at what I used to be able to do before my ALS and projecting that trajectory into the future.

Some of what I see is physical, especially when I remember what I could do at the gym even a few months ago compared to now, or how far and fast I could walk before the days of canes and scooters.  Or typing with two hands, not just hunt and peck with a stylus.  Or really holding up my end of a conversation, not just nodding and groping for paper and pencil to write a note.  Or a thick rare New York strip steak with a baked potato — and a good red wine, a mature Cab or robust Zinfandel – not 8 ounces of Ensure though my PEG.

That inevitably leads me to comparisons with where I thought I would be at this point in my life — still working and helping to shape government policies; actively engaging with friends to cook and eat elaborate dinners; visiting far-off destinations; taking my two great grandkids on adventures.

From that perspective, as I gaze into my future, the disappointments can become prominent.  Travel to exotic locations that will not occur; new food gone untasted; books unread and movies unseen; opportunities to be of service unfilled.  No more jumping from airplanes – although probably once was enough.  Lots of sitting aside and observing, not participating.

I understand, but cannot easily control, where that kind of negative thinking can lead.  I have (or thought I did) good longevity genes from my family and had expected to live to my nineties, active and engaged all the way.   Letting go of that expectation has been hard.

My mental health depends on keeping a positive attitude – not so easy, but doable if I can remember to stay focused on the task at hand and not allow myself to drift off into cerebral masturbation that brings no pleasure and relief.

Here’s an example.  Last week at the health club I decided to try an exercise I had avoided for a while – planks on a Bosu ball.  So I got myself down on the floor, grabbed the bosu and did two good reps of 30 seconds each.  Pretty good I thought.  Then I simply could not get myself up until I got some help to stand.  When I shared that experience with my wise son Simon he responded that most men my age could not even begin to try or accomplish that plank exercise.  In other words, focus on what I can do, not on what I cannot do.

Thanks Simon.

Laughter

I had the opportunity this week to attend a meeting sponsored by the local MDA chapter that featured a speaker on common ALS symptoms of speech loss, swallowing difficulties and other bulbar disasters.   Two other PALS (persons with ALS) were there and the three of us traded ideas and suggestions about technology and other ways to cope –  of course using our various iPads, iPhones, portable amplifiers, whiteboards, notebooks and hand gestures.  But what the three of us had most in common was our ability to laugh – at ourselves and at the silly situations in which we found ourselves.

I have started to carry a small 3×5 spiral notebook with me at all times.  And a pen on a lanyard around my neck.  So I am ready at any time to communicate my best one-liners, and to have a permanent record of my witticisms.  Looking back at the last few days’ scribblings I realize you needed to be there to get the humor.  Most of these great one-liners have very short shelf life.

Hmmm – who else has very short life expectancy?

But laughing with others is a great way to connect and to share understanding.  PALS do not have to explain to each other what is happening to us.  A wink, a nod, a smile is often enough to communicate information that words alone could not convey as precisely.

I learned years ago that laughter can also be destructive – a way of distancing, putting-down, or avoiding real concerns.  I must admit I was good at using laughter as a weapon.  But I was fortunate to come to understand that I was not acting responsibly by using humor in that way, not helping myself or people around me get to happiness or peaceful lives.  I was just antagonizing them, and making myself a sad clown.

So what distinguishes “good” humor from “bad” humor?  Clearly it’s intent, but how can that be made more clear?  In our family we often “pick” at each other’s weak points with humor –  they are almost stock jokes.  But they are always delivered with an eye-twinkle and mostly followed with a hug.  They are often at our own expense.  The tone is never biting or nasty.  Its become a way of acknowledging our own foibles and strange habits – without rancor or intent to embarrass.

That’s the same way a room full of PALS can often be hilarious about the strange behaviors our disease produces. The way we talk, move around, and perform most of our daily activities is certainly far enough from “normal” to cause folks to take notice. And when we PALS see it in others it just puts our own struggle in perspective. And from that perspective, humor is an appropriate way to view our own shortcomings – it places them in a human context and reinforces the bonds that join us all together – PALS and others.

Thurber wrote that “Humor is emotional chaos remembered in tranquility.”  Sounds right to me.

Control

ALS has meant learning to give up control of my body.  My arms and legs no longer respond smoothly as I attempt to control movement.  My mouth and throat muscles no longer respond to my desires to speak, chew or swallow.  My hands no longer easily complete what used to be simple tasks – tie shoes, button buttons, pull on socks.  All the while my CPU-brain functions almost “normally”, believing itself to be in charge of all around it.

As I react to losing control I experience strong feelings – helplessness, anger, frustration, rage, and sadness.  Adjusting to loss-of-control comes slowly and unevenly, with the gift of acceptance often elusive and short-lived.

Sometimes I channel my frustration with an out-of-control body by trying hard to exert control in other aspects of my life – particularly over people close to me.  “If I can’t control my legs at least I can control XXX.”  Usually XXX is a person – especially a close loved-one.  I have a number of well-practiced routines for accomplishing this, mostly centered on playing the “sick-kid card”.

Not a pretty picture.  People who love and care for me deserve better. And it’s not even necessary or effective.  Because they love me, people close to me will respond to almost any reasonable request I make – often before I can even ask.  I don’t need to be playing control games with them to get the attention or help I think I need.

So I am learning (or relearning perhaps) that love is stronger than control.  Honesty overcomes manipulation. Openness overwhelms hiding.  I am trying to be attentive to the occasions when the urge to be in control of the people around me – whether from fear, frustration or arrogance – comes to the surface. I am trying to stop those inappropriate responses before they overwhelm my better instincts to love and respect.

But it isn’t always easy.

 

The ALS Walk

This past Sunday was the Washington DC ALS Walk – a major get together and fundraiser here in the nation’s capital. After a great deal of uncertainty about the walk’s location because the government shut down closed the Washington Monument grounds, the Congress relented, the Park Service issued the required permits, and the walk took place as scheduled.

It was just a glorious autumn day – bright, sunny, blue skies and crisp temperatures made it a great morning for a stroll with your thousand closest friends. The visible courage of my fellow PALs and the devotion of their families and friends is remarkable.

It was the first real test for my new scooter, and it passed with flying colors – no accidents, no causalities, and no speeding tickets. So I was able to “walk” with all the others.

I was so moved by the number of friends who turned out to walk with the Stuart’s PALS team — so many hugs and kisses and an incredible sense of warmth and support for my family and for me. I am one lucky guy to have such good friends. And I have the pictures to prove it.

And very generous friends – we have exceeded our team fund raising goal and are closing in on $30,000 raised. Thank you all so very much. The funds help support research to find a cause and treatment for ALS, and to help provide support services to patients like me. (If you still want to help, go to www.stuartspals.org and click on the “Donate” button next to my name)

So what attracts all these friends to support me with time, treasure and love? I could congratulate myself for having lived such a perfect life that they all feel a debt for my past kindnesses. But I doubt that my moral ledger is so skewed toward goodness. No, based on what friends tell me, giving family and friends an opportunity to connect with me not only strengthens me from their connection, but also enables them to expand their own human goodness by being able to express their love and concern.

Some neuroscience supports this observation: “in terms of our need for connection, the more that people can have a sense of inclusion or a sense of being seen, or appreciated, or liked or loved; the more that people can cultivate the traits of being compassionate, kind, and loving themselves, the more that they’re going to be able to stay in a responsive  mode of the brain, even if they deal with issues in this connection system like being rejected or devalued or left out by somebody else.” (From interview on the Atlantic website with Dr. Rick Hanson, a neuropsychologist, a member of U.C. Berkeley’s Greater Good Science Center’s advisory board, and author of the book Hardwiring Happiness: The New Brain Science of Contentment, Calm, and Confidence.)

Or as Gibran expressed it more lyrically in The Prophet:

“Your friend is your needs answered.

He is your field which you sow with love and reap with thanksgiving. And he is your board and your fireside.

For you come to him with your hunger, and you seek him for peace.”

(Thanks LH)