New Wheels

Thanks to the local ALS chapter, I now have a bright red scooter from their lending closet.  Since walking more than a short distance has become a challenge, my mobility is greatly extended and it’s easier to get out around the marvelous neighborhood where we live.  I will be riding my scooter in the DC ALS Walk on Sunday – hope to see many of my readers there.

Starting to use the scooter is just the latest in a string of major changes to my lifestyle and capability resulting from my ALS.  I pretty much no longer “eat”, but take almost all my calories through my feeding tube.  Impromptu speech is a thing of the past, but I manage to communicate with a combination of nods and smiles, hand and finger gestures, writing on paper or a convenient iPad app, or using another iPad app to actually “speak” for me.  That last app is so terrific I can chair meetings and make speeches with it.  Even if I can no longer walk as easily as I could a few months ago, I can still get around when I need to – and I have lots of help when I need assistance.  Luckily I can still drive safely, but that is just a matter of time I believe.  But I did get one last great summer with a convertible.

While I miss all those capabilities, I am realizing they are not all that essential to what is really important – staying connected to family and friends and living every day as fully as I can. As long as I can get my nourishment, move around, communicate and give and accept hugs, I can live a complete life today.

I am still able to appreciate beautiful music and art that stimulates the senses.  I can smell wonderful food even if I cannot swallow it. I can read and write. I can be out in the bright autumn sun and cool breezes.  I can wonder at a rainbow and the bright harvest moon. I can cheer when the Red Sox win, and sulk when they lose.  I can have a workout and massage at the gym and feel stronger and more limber.

And even if I am unlikely to jump out of an airplane ever again, I can relive that experience and the exhilaration (and perhaps a moment of fear) every day – and usually I do.

So my new wheels may represent a transition, but not a sharp break from the past.  I will be easing into my redefining life as gradually as I can, saying goodbye to things that used to be part of my repertoire – but were not my real true essence.  That I hope is unchanged, and only grows stronger as it is constantly fed by the immense stream of love and care always heading my way – and that I am trying as hard as I am able to return in kind.

In the end its all a matter of accepting the passage of time, as these lines from Philip Larkin remind me.

Truly, though our element is time,

We are not suited to the long perspectives

Open at each instant of our lives.

They link us to our losses: worse,

They show us what we have as it once was,

Blindingly undiminished, just as though

By acting differently we could have kept it so.

Last stanza from Philip Larkin, Reference Back

HEARING

Learning to sit quietly.
In a meeting.  At home.
Living with my thoughts –
It can be lonely.
But think of conflicts avoided
And loves not strained
And listening without plotting.
Now I hear.

ANGER

A friend asked me recently if I was angry about my ALS.

Good question.

The honest answer is that a year ago anger was one of the strong emotions running rampant through my head and limbic system. I have gotten past that intense anger now and can avow, with regard to my ALS, that I am mostly anger-free.

I say mostly because as I typed this a very strong image from earlier this week came strongly to the front of my mind.  We were meeting with my Hospice care manager Priscilla, a wonderful caring nurse who visits every week.  We were discussing a mixed up order for my new breathing equipment, and my frustration with not being able to speak clearly was making me very agitated – yes angry.  I soon was literally yelling at her and Roz and anyone else within a three block radius. And given my speaking ability these days, my yelling is a real piece of work.

I was not angry at the medical supply company or Hospice – it was a simple mix-up that was soon to be fixed.  But I was angry about my inability to communicate effectively in that situation.

Fortunately my outburst provoked by this anger was short-lived, although recalling the incident is very powerful for me right now as I write.

So that pretty much disrupts the high-toned philosophical essay I was planning to write about how anger is not a useful emotion to be carrying around.

Well, maybe not completely.  It is certainly not helpful to be dragging lots of anger around all the time. That in my experience only leads to resentments and further anger, without resolving problems or strengthening relationships.  But feeling and expressing anger as it happens (as appropriately as possible) is different.  Get it out, let things cool down,  apologize if the expression was inappropriate, and get on with life.

People give me lots of leeway these days – behavior that would have been unacceptable a year ago now slides by.  I try not to take advantage of that lower standard for my occasional verbal excesses – unlike my slow walking where more tolerance seems appropriate.

So back to the question “Am I angry about my ALS?”  “Not angry” is my answer.  The emotions I feel most these days are sad, disappointed, frustrated – not with my disease but with the effects of my disease on my ability to live my life as I had imagined I would.

Imagine that, I am not in control.

But there are other feelings these days that are even more powerful.  Gratitude for all the excellent health services I am fortunate to receive.  Love for the family and friends who bathe me in their thoughts and actions every day.

Now, since I have made a new commitment to read poetry, here is a short work by the 18^th Century British poet Charles Lamb.

Anger

Anger in its time and place

May assume a kind of grace.

It must have some reason in it,

And not last beyond a minute.

If to further lengths it go,

It does into malice grow.

‘Tis the difference that we see

‘Twixt the serpent and the bee.

If the latter you provoke,

It inflicts a hasty stroke,

Puts you to some little pain,

But it never stings again.

Close in tufted bush or brake

Lurks the poison-swellëd snake

Nursing up his cherished wrath;

In the purlieux of his path,

In the cold, or in the warm,

Mean him good, or mean him harm,

Whensoever fate may bring you,

The vile snake will always sting you.

On Timing

When I have fears that I may cease to be
Before my pen has glean’d my teeming brain,
(Keats)

My reading this week has included two wonderful novels by Nicholson Baker – The Anthologist and The Traveling Sprinkler. The main character in both is a not-so-successful poet (who’s lady friend is named Roz) struggling with writers block and a collapsing life. But in the course of his struggle he reveals a profound understanding of and sensitivity to poetry, rhyme, music and, as the metaphors deepen, a real insight into the basic struggles of life itself. I have not paid as much attention to verse the past few years, but my old interest has been piqued and I will be turning back now.

The lines above from Keats that Baker quoted particularly resonated with me this week as I went about about saying goodbye to my Mother who moved away to assisted living, meeting with Hospice to begin planning for my future care, and thinking about how and when I shall say goodbye. I had not until now really known how to frame that question, but thinking about the Keats lines made me realize that the key test was whether I had more left in my brain to get out. I had been focusing more on the mechanics of communicating as my voice, fingers and other “tools” leave my kit. I was intrigued by all the new technology becoming available.

But I now realize that “what I say” is much more important than “how I say it”.

As I have been thinking about my “mental bucket list” over the last few days, I have begun to better understand what I still have undone or unsaid. I think it will not be a long list, as I have not been shy about sharing up to now. And I hope to not become obsessed with checking people off the list. But even more important, I now realize, is not to become so focused on dredging up old buried thoughts that I lose connection to the present. I want to be fully attentive to what is happening around me, to the dear friends who write and visit, to my family and to my service responsibilities. All these activities take much more energy than before, leaving little time or space for dwelling on or reinventing the past, and not much more than that for usefully writing future scripts.

That is the gift of my disease – it forces me to live in the present.

So, having started this little piece with one English poet, let me end with some lines from another, Philip Larkin. I shared these lines with my friend Willie a year ago as he was struggling through his last days, and he took some sweet pleasure from them.

This poem is titled Days.

What are days for?
Days are where we live.
They come, they wake us
Time and time over.
They are to be happy in:
Where can we live but days?

Ah, solving that question
Brings the priest and the doctor
In their long coats
Running over the fields.

Saying Goodbye

This week we moved my mother, soon to be 94, to an assisted living facility in Massachusetts near my brother Bob.  She has been living near us here in Reston for almost 10 years, but the combination of my ALS and her growing fragility made staying here too hard for her and us.  It became especially hard as my speech deteriorated while her hearing was getting worse — communication, which could be hard under the best of circumstances, became literally impossible.

We had great help to sort, pack and transport her stuff to her new home. So on moving day my son Simon and I picked her up and drove her to the airport to meet my brother and fly north.  She was very talkative with Simon on the trip up – a little confused and forgetful, but in good spirits.  I was sitting behind her in the car and unable to really participate in the conversation.

When we arrived at the airport we only had opportunity for a quick curbside goodbye.  I realized it was probably the last time I would see her, held her hand, and tried to say goodbye.  Not sure how many of my words she understood, but she could clearly read my eyes and face.  Her eyes were full of sadness, but I was not sure if she understood that this was goodbye forever.

You can see where this is going for me – my goodbyes are not so far in the future and this was an opportunity to rehearse.  Much like my bout with pneumonia in Turkey a year ago was a taste of being unable to breathe for me and an opportunity for intense caring for Roz.

I hope I did ok yesterday.  Even if I were capable of speaking clearly, I had nothing left to say beyond goodbye and I know you will be safer, and perhaps even happier, in your new home.  I know I have done everything I could have done.  I have no regrets – just sadness.

So I am filled today with sadness, gratitude and forgiveness.  As I take my inventory I am passing on items I can no longer use – clothes too big to fit, books I will not read again, electronics that can find a new home.  And I am also discarding old grudges, resentments and scores to be settled.  I have no use for them in my renewed journey.

I am practicing saying goodbye with love and hugs – every time.  Life is literally too short for anything else.

PLANS

Long about Thursday afternoon each week I feel the urge (and perhaps the need) to set down another 500 words to share. It’s not so much about meeting a deadline, as honoring what has become an important internal rhythm. There is a lot going on, and stopping to think and write is a helpful way for me to sort through the complexity and urgency of so much of my life these days.

Tomorrow we have our first visit from Hospice. Now don’t start picking out wreaths quite yet. In fact, don’t even think about wreaths at all. When that time comes there will be better choices.

So, about Hospice. One thing about ALS that has become quite evident over the past year is the multitude of body systems and daily activities affected. As a result, life is becoming more and more complicated. My eyelid muscles are weaker, so I don’t blink completely. Therefore my eyes dry out and I must use eyedrops to see clearly.

I have written here about the decline in my ability to eat and swallow solid food. Now I take most of my daily calories as liquid supplements through my feeding button. Remember what your mother told you about balanced diets, and getting enough fiber. Guess what. On this new diet, my digestive system is truly f******* up. This is made even more complicated by weaker abdominal muscles, making it harder to “push”. And of course it is harder to swallow those capsules that might help ease matters. (Hey stop blushing – we are all grown ups here.)

A large part of my life these days is spent in the small triangle between the kitchen where I prepare my liquid delights, my desk where I “eat” and stay connected, and the toilet. Luckily I am still ambulatory enough to walk these short distances safely. But that will become more difficult before too long – hence hospice.

We will learn from them the steps we need to start preparing for these next months. Steps that will help my family keep me safe and comfortable – and able to concentrate on what is so important outside of my small triangle.

Because the highlights of my week continue to be opportunities to spend time and connect with family and friends. This week I have had out-of-town visitors passing through and coming to see me. I have had important occasions to serve the community. We have seen excellent movies and theater. I have enjoyed glorious early Autumn days. I have driven around in my convertible.

And while doing this I have been fortunate to experience the whole range of emotions. I have laughed out loud at silly jokes my grandson told. I have been re-exhilarated watching the video of my skydive. I have challenged myself at the gym. I have been elated as the Red Sox close in on the pennant. I have sat and cried with Roz as we talked about out future. I have been swept up in the love that surrounds me.

Hiding

Everything takes sooooooo long these days. Simple chores like eating breakfast can take an hour or more because I move slowly in the kitchen as I make my “instant” oatmeal, carry it to my desk, wait for it to cool enough to not burn my tender mouth and then feed myself small spoonfuls that can take forever to swallow. By contrast, it takes very little time to “feed” myself through my button – less than 5 minutes for one or two bottles of supplement and a pint of water. But not nearly as tasty going down.

Getting dressed is becoming more difficult, especially buttons. I wore a button-up shirt today, and it took forever to get it on. My usual wardrobe has become T-shirts and shorts or sweats.

Typing is also harder as I am starting to lose control of my hands and fingers – I can do it, just with much reduced speed and accuracy.

Going anywhere requires twice the time it used to need. I walk very slowly, take extra care going up and down stairs, and carefully navigate getting into the car. Means I must carefully plan my days, do less, and consume more energy doing it.

Frustrating.

But (and not to be pollyannish) I am grateful that I can still get into the kitchen, cook myself something healthy and tasty and enjoy eating it. I am grateful to have a closet full of clothes, even if I choose to not wear most of them anymore. All those suits, with all those memories, will soon have new homes. I am grateful to still be able to share my thoughts. I am grateful for my mobility and independence driving allows.

I have learned to accept and be grateful for so many little things. The hour Roz and I spent the other evening cleaning the refrigerator. A silly text from my favorite grandson. Hugs from my son. Not too long ago the true significance of these events would have gone right over my head.

Roz and I have been to a couple of large social events this week – a 50th anniversary party and a big local art gallery opening fund raiser. We saw many old friends at these crowded and noisy events. I passed on the food and drinks. I could not really have a conversation, but folks knew that about me. I was so humbled by how open and welcoming all my friends were – waves, nods, smiles, “How are you?”, and lots of hugs. Megahugs!

I decided months ago as my symptoms got stronger and more visible that I would not hide away. I am so grateful that so many of my friends and loved ones have also not been hiding from me – they are accepting of my limitations, do not shy away or turn corners to avoid me, and just make me feel so loved and welcomed.

So to my friends reading this – you are each an important source of strength for me, and I am so grateful for your love and caring.

On love

Roz and I celebrated 47 years of marriage this week. We have known each other for almost 60 years. So it is no understatement to say that we think of each other as life partners.

We have had a remarkable journey together. We married young (at least by today’s expectations) and immediately moved over 1000 miles away from our families. We really did not have a marriage model we considered right for us in our family experiences, so set out, in fits and starts, to build our own. Some days were not so pretty as we each grew up and became comfortable building our individual and joint lives.

While the year since my ALS diagnosis has been no picnic, I think it fair to say that our marriage and our love have never been stronger. Roz nursed me though a scary bout of pneumonia in central Turkey with courage and humor. Despite that trip we did make a wonderful return visit to London and Paris this summer. We navigated tricky finances to be able to retire with security. We dealt with emotionally-laden family situations successfully. And we are learning to accommodate my new and growing limitations.

Through all this I think the greatest asset we have had as a couple (and as a family) has been honesty. From the first moments last summer when we suspected what was happening to me, we have tried hard to face our new reality and choices without hiding or denial. No “brave faces” required – we cry, moan, laugh and play together as we are moved.

That openness and honesty has been an important cornerstone of our whole married life. And it appears we have learned it well as we are seriously tested now but have risen to the occasion.

Not to say any of this is easy. If it were we would not have needed 47 years to prepare.

So while on the subject of preparation, on one of my darker days this week I started making a list of things I missed. Here it is:
Things I miss

Popeyes spicy chicken
Bloody Mary’s
Bagels and lox
Eating an apple
Corn on the cob
Bicycle rides
Rare steak
Onion rings
Cheeseburger
Cheerios with banana
Pizza
Fried clams
Pasta
Pop corn
Kissing
Long walks

Notice how many of them are food-related? Notice how many are foods I am well-advised to avoid anyway. See, its all mixed blessing.

Notice as well that none of them have to do with missing the intimate contacts with family and friends. Well, except kissing, but we are learning to substitute hugs and that works.

So that is the gift Roz and I exchange every day – the love and honesty and courage to face our lives with loyalty, energy and a positive attitude. It has not always been easy getting here all these years, but it has been fun. And if we can be role models for others, so much the better.

On the beach

After last week’s soaring adventures, this week has been spent closer to the ground. The challenges are different, but still there to be dealt with.

While my skydive required only one (longish) step, navigating the beach requires many more steps — a good number of them up and down two steep flights of stairs. Quite a change from my mono-level life at home. Being out of my home routine is also a challenge, although being surrounded by so much love and support eases that difficulty.

The ocean has shown us all its moods in the past few days. Earlier this week we had two “red flag” days – surf and rip tides so strong swimming was not allowed. The past two days have been almost the mirror opposite – very little surf and an almost lake-like calm on the water.

Reminds me of my recent mood swings.

Some days I feel so strong and optimistic. On this trip I had days when I did long beach walks, used the neighborhood gym, read and laughed and helped with the jigsaw puzzle. I was aware of my ALS and its impact on my functioning, but not bothered very much by these adjustments to speaking, eating and walking. I welcomed family members to sit with me on the porch as I “fed” myself through my button. We shared laughs and hugs and were grateful for the days together at the beach.

On some other days I was pretty much living in a dark mental cloud, aware of every twitch, insult and inconvenience stemming from my disease. I sulked, stayed in my room, and just isolated myself from all the activity surrounding me. Felt real sorry for myself. On a couple of days I never left the top floor of our rented house. And all the while was preoccupied with dark thoughts of what the future held.

The good news is that I have learned to recognize these mood swings, to name and accept them, and to remember that, like beach weather, stormy days are always followed by sunny days. And it’s the stormy days that provide opportunity to do jigsaw puzzles, play cribbage, cook something special, or just be quiet and read a good book (or read beach trash).

Most importantly, I know I can choose which kind of day I will have, and my family honors that choice.

We have been coming here to the Outer Banks for over 30 years. For the past dozen years or more we have shared that beach time with our grandkids and their wonderful parents. We have so many grand memories of all these summer vacations. Even our teen age grandkids treasure these weeks. We have so many beach traditions – puzzles, lobster bakes, donuts, putt-putt, sea glass, and so much joy and laughter. We have experienced earthquakes and hurricane evacuations. And this year we have experienced grandpa’s ALS. More memories to round out the picture.

We head home today after two glorious weeks. While it will be comforting to be back home and into my familiar routine, leaving is bittersweet — there’s no way to know whether I will be able to return next summer.

JUMPING

Searching real hard for the right metaphor.

I have never been too much of a physical risk taker, but today I did a tandem sky dive here on the Outer Banks. The challenge was a Fathers Day gift from my family, so I have had a couple of months to contemplate the choices.

Basically what happened is that after signing a sheaf of legal forms, I was harnessed to my instructor Sven who then demonstrated the basic skills I would need to succeed – mainly being able to lift my legs out of the way on landing. Not so easy with my weakened leg muscles. I should mention that Sven was wearing a parachute – or at least I think he was because I could not see what is behind me and was strapped so tightly I could not turn my head.

Then Sven and I and another similarly hooked couple climbed into a small airplane with no seats (except for the young pilot) – and no real door. Sven demonstrated how I was to swing my legs out the opening and rest them on a small platform — seemed easy while on the ground. That was to be the exit strategy.

So we all get settled on the floor of the little airplane, bounce down the taxiway and runway, and soon are airborne. We noisily climb and circle over the beautiful panorama of the ocean, beach, sound and dunes. Great views of the whole area, including clear pictures of rip tides at the beach.

After about 20 minutes we are at 9000 feet, Sven opens the makeshift door, and cool air at 120 miles an hour comes rushing in. He says it’s time, asks me if I am still ready. I nod yes and show “thumbs up”. He swings one leg out the door and tells me to move my left foot out to the small platform. Its much harder at altitude and speed – felt my foot(the weak one) would be blown off its small resting spot. Then he told me to swing my other foot to the platform and to shift my weight to be facing out the door. I clumsily do it, braving the wind and growing doubts of the wisdom of this whole adventure. Then Sven asks am I ready? I have little time to really decide but reflexively give him “thumbs up”. And so he literally lifts me up with his legs (I am essentially sitting on him now) and pushes us off the platform and into the vastness of the cold sky.

It’s an incredible rush. I remember the position I was taught on the ground, arched my back, spread my arms, and was flying. Free fall is not like any other experience I have ever had. Its fast, turbulent, cold, breath-challenging, and absolutely soul-freeing. We spin around, do a flip, and really feel the freedom of just soaring without physical restraint. It was exhilarating. Powerful. Mind-bending.

After what I now judge was too short a time, there was a sharp tug as the chute deployed and Sven and I began the more gentle journey earthward under the big orange canopy. He steered us around in a big circle, heading toward the landing zone. We dipped and soared and laughed and just took in the quiet and gentleness of this chute-assisted descent. Sven asked me to practice the legs up position for landing. I felt strong and ready.

As we made our final circle to the landing I really thought we were coming in too fast (see – already an expert). Sven told me “legs out”. I concentrated and held them steady, and we came in for a terrific welcome back to Mother Earth – both Sven and I safe and sound. Family cheering! Me beaming from ear to ear. Sven unhooked me from the harness and helped me stand. My legs felt strong as I walked to where the family was waiting. Roz ran out to hug me. (One thing that feels better than free fall!!).

I had done it!

So what’s the appropriate metaphor and lesson from this experience?

After thinking (and dreaming) about it this afternoon I think its about trust. I trusted my family to support whatever decision I made about flying. I trusted the parachute to perform. I trusted Sven to make the right decisions. I trusted my instinct to trust. I cast doubt aside.

I think I knew from the day I was given the opportunity to have this adventure that I would do it. There were doubts gnawing away at me, especially about whether my weakness would make the jump too dangerous. But with the reassurance of a very capable Sven, I felt confident we would have fun and be safe.

Now I know that my ALS future does not include a smooth landing. But I trust the ride will be exhilarating. With my loving family and friends cheering me on, and with dedicated and compassionate professionals guiding my care, I am confident that the months ahead will be an adventure I am well-prepared to navigate.