TRAPPED

The most frequent image and feeling I have these days is of being trapped. As my speech weakens more of my thoughts do not escape my mind to be shared as they occur. (Not necessarily a bad outcome.) As eating gets harder I retreat to feeding myself through my button — and by myself. I am walking more slowly and with more effort. I have much less energy.

But the worst images rushing through my head picture me dealing with trying to communicate as my hands and fingers lose their coordination and power. No more typing. No more drawing. No more sign language. Just grunts, picture boards, head nods, eye blinks and serious desperation.

The problem with ALS is that the future is so well-known, yet at the same time such a mystery.

Of course by the time those terrible things happen, I expect breathing will become a serious issue as well.

But I am not going there now!

Another way to think about being trapped occurred to me this week as I responded to a posting by my new best friend Lindsay. I wrote “We live in a bubble of love sustained by our family and friends”.

I am here now at the beach surrounded by my dear family, all of whom seem to be dedicated to taking good care of me. They are completely accepting of who I am, and while making every effort to watch out for me, are very careful not to treat me like some alien creature who is so different to be scary. They tolerate my strange eating habits. Feed my constant need for paper towels. Patiently wait for me to grunt or write my thoughts. Walk slowly so I can keep up.

We have been coming to the beach at Duck, NC every summer for over 30 years. There are so many wonderful memories of this place – especially of seeing first my son and now my grandkids growing up. Of being an important part of their lives – even now. Perhaps especially now!

So if I am trapped it is in a bubble of love – a prisoner held by chains of love and compassion and trust. Like the beach, a great place to be.

Eating Naked

Not a pretty picture, but …….

I spend almost half my waking hours feeding myself. There are still some things I can eat though my mouth – oatmeal, soups, smoothies, some dense chili-like preparations, and this week I discovered waffles drenched in maple syrup. But because my chewing and swallowing is so weakened, it can take a long time to get food from the plate or bowl to my stomach. It’s not unusual to spend 45 minutes eating a simple bowl of oatmeal.

Now the advice I get is to avoid all distractions while eating. But 45 minutes concentrating on my oatmeal is real torture for my overactive mind, so of course I am taking most of my meals at my desk in front of my computer. (Actually eating a waffle while writing this.) So these mental distractions probably drag out the eating time, and even worse, failing to pay attention inevitably leads to coughing, drips, spills and general messiness. So to spare the laundry overload, I have started eating naked.

The other 75% of my nutrition and most of my 64 ounces of water daily I take through my feeding button using a big syringe. This process is quicker, but prone to leaks and drips, so naked is also the best strategy.

This probably also explains why I am reluctant to eat out with friends these days! And why they are reluctant to eat with me!

The good news is that despite these distractions and spillages, I am getting enough calories to maintain my weight. And without the distractions of eating, sitting and talking with friends is possible and enjoyable.

So I am learning to be flexible and accepting of my new capabilities and opportunities. And I am fortunate to be able to learn from the experiences of my new PALS.

But most of all, I am very fortunate and grateful that I have been able to maintain my senses of perspective and humor. Because there is no doubt in my mind that while my new dining practices may be best suited for some tree-based comic strip, it gets the job done, and keeps me nourished to get on with the important work of living and service waiting for my attention and energy.

Sunny Wednesday

I want to send a sincere thank you to all my friends who have sent positive messages since my dire posting about Sunday’s funk. I am very happy to report that those messages, and getting back into my routine of exercise and eating has made an immense difference in my mood and perspective.

I know full well what the future holds. But as long as I stay focused on today and what is happening right now, I will be safer – both spiritually and physically. And fewer falls as well.

So important work to be done today, and eager to get on with it.

Peace!

Black Sunday

I think I always knew there would be a day like yesterday. It started out fine. Two full days back from our trip and pretty much past the jet lag symptoms. A good night’s sleep. Breakfast was tasty and filling. Headed to the gym for first workout in two weeks – and it felt good to get back into the routine. Made a swing to the market to pick up some goodies.

But somewhere along the line the realization that I was sinking fast hit like a ton of bricks. I think it’s largely about the rapid loss of my speech over the past few weeks. And the difficulty eating – I am starting to lose muscle and weight more rapidly. But those growing weaknesses lead (sometimes quickly) to dark thoughts of just being trapped in this decaying body – fully aware of what is happening and powerless to slow or stop the decay.

I panicked. Blew off Roz and close friends we were scheduled to visit, and just took off to be alone. Drove around aimlessly. Did not want to “talk” to anyone. Didn’t want to spend hours getting food into my body. Didn’t want to keep sopping up the excess saliva leaking from my mouth. Just wanted it to be done.

Fortunately the panic subsided and I was able to have reassuring conversations with Roz and Simon. I know this is hard, and will get harder, but I need to work hard to keep my desperation in check.

I know I have good alternatives for both communicating and getting nutrition. I know that the many family and friends who surround me with love are willing to do whatever is asked of them to help. I know that people are depending on me to continue important work we have begun.

I know this is not yet my time.

So I need to get past these feelings of desperation and concentrate on doing my best for today. I will need your help to stay focused on today. Send me hugs and positive thoughts. Hold me accountable – my disease does not entitle me to a free pass.

Thoughts on Travel

I have always loved to travel, and have been fortunate to have visited many wonderful exciting and often exotic locations. Roz and I have done multiple trips to Europe, a memorable safari in east and South Africa, and traveled to most parts of the US and Canada. I have traveled to the Far East on business, and we have vacationed in Hawaii, the Caribbean, Costa Rica and many trips to the Outer Banks.

On those visits we have seen exotic and culturally rich sites, met interesting and generous people, eaten a variety of strange and wonderful food, and walked many miles with eyes and ears wide open.

I write this on a British Airways 747 returning home from 10 days in London and Paris – two of our favorite places.  But this trip was different in so many ways.

I guess we both understood that this would likely be the final long trip we take together.  My mobility, speech and eating weakness have made the joy of traveling more difficult and elusive than on previous trips.  I do not have the energy I once had.  I can no longer walk for hours on end. I cannot eat the local cuisine, or taste the wines, but must carry my own nutrition and feed myself though my button much of the time.  Sampling crepes and cheeses and ice cream in Paris was especially daunting. Fish and chips, bangers and mash, and other British delicacies are things of the past for me.

But this was a great trip and I am glad we made the effort.  Spending 10 days with the love of my life is such a great gift.  Roz is not only my soulmate – she is now my interpreter, tour guide, porter, and sentry.  But I can see that having to tend to me has been hard on her and made her enjoyment more problematic.

It was also a great trip because we were able to connect with old and new friends.  These relationships are as nourishing for me as a six-pack of Ensure.  We did visit some sights that had been on my to do list for a long time – Hampton Court, Greenwich and Giverny especially.

When we were in need, so many helpful people stepped in to assist – at Eurostar, at the US Embassy in Paris, at British Air.

So it will be closer to home for me now.  There will be two great weeks at the beach with the whole family and my vita mix.  I wonder if I can make lobster bisque in it?  There is all the work to do as Board Chair of CORNERSTONES – the renamed Reston Interfaith. There are so many friendships to nurture and so many people to spend time with. And these will all be easier on home turf.

Life will go on.  I will devise new strategies to deal with my growing weaknesses.  I will continue to learn new things about myself as I cope with my disease. I will hopefully be able to share what I am learning and be of service. I will try not to despair, but will work hard to stay accepting and as positive as I can be. This is not much fun, but I am still capable of laughter – and of bad puns even if others have difficulty understanding my words.

So stand by friends.  There is still life in me, and I intend to be a force to be reckoned with.  

Mind the Gap

I started writing this from a hotel in London. Roz and I are fortunate to be able to make a swing through two of our favorite cities – we are off to Paris tomorrow for a quick visit.

While on this trip we have had to make even more adjustments to what is the new “normal”. Given my eating difficulties, we are traveling with a whole supply of freeze-dried camping food. Just add boiling water and VOILA, a meal in a pouch that is about the right consistency for me to eat – even if it takes an hour. Lots of Carnation Instant Breakfast that we mix with milk (an excuse to explore British supermarkets) and can either drink or inject through my feeding button. We bought rolls of paper towels – a new requirement to help deal with leaky lips.

I may move a little slower these days, but I am still capable of using the underground and the buses if I am careful — hence the reminder to mind the gap.

But the gap to be minded is also between what I used to be capable of doing and the much more limited capacity I now have. Travel used to mean trying new restaurants and foods. It used to mean wandering through neighborhoods absorbing new sights and sounds and smells unconcerned about stumbling. It used to mean filling days and nights with activity. Now it means afternoon naps and constant attention to food issues – concentrating on eating with no distractions; menus limited to purées, soups, pudding and foods of similar consistency; reminding myself to consume enough calories to keep my weight up.

But on the positive side, our stay in London has enabled us to reconnect with old friends and to meet my new best friend, fellow blogger Lindsay. We had connected via our blogs, but this evening we were able to meet up, share hugs, and put solid reality in place of electrons. Lindsay and I are so similar – bulbar onset that has robbed us of speech, eating and swallowing. Fierce determination to live every day we have to the fullest. Weird sense of humor that is an important part of our coping strategies.

Now I am finishing this from the Eurostar train to Paris, and I will post it when we are settled in our Paris apartment this evening.

Real pandemonium at the station, but Roz is the world’s best traveling companion so we are safely in our seats waiting to depart.

So what lessons from our stay in London?

First, this journey has both difficult challenges and rich rewards. Walking at half my former pace certainly slows us down, but walking slower makes it easier to really see where I am and am going. I see a lot more than I used to see. It takes some effort for me to acknowledge my now-apparent limitations, and I resent the reductions in my independence. I am grateful that my companions are always looking out for my best interests, giving me just the right amount of leeway so I can be learning my new limits. They will let me stumble, but will not let me fall – although sometimes I can defeat their best efforts with my stubbornness.

Second, the stay in London enabled me to fill in some experience gaps. I have now been to Greenwich and Hampton Court, important memories from my British history course many years ago. I have taken long bus rides through suburban London and now really appreciate the enormous diversity of this world city. I have experienced the hype and cynicism surrounding the royal baby. I admitted to my new friend Lindsay that I sometimes use my feeding button naked to minimize the mess. TMI?

And third, I am even more grateful than before that so many friends (old and new) are here for and with me. We do not take this journey alone. I am confident that as I progress, there will be constant help crossing whatever new gap is placed on my path.

So now I get to see how much high school and college French I remember. Wish me luck!

As we approach Paris I think about the city of romance, and am so grateful that Roz is here by my side. I love her so much.

SECRETS

We are only as sick as our secrets.

How many times have I heard that – without really understanding its deepest meaning?

As I hobble around and speak with my garbled and slurred new voice, I have started paying more careful attention to the reactions of people I meet.  Most who know me and my story are accepting and supportive, reaching out to lend a hand, flash a knowing smile or circling in for a hug.  I love those people and the warmth and comfort they bring to me.  I hope my return smiles, nods and hugs also give them some warm evidence of that love I feel.

But I can’t help noticing in many people who do not know me (and a few who do) real signs of fear and denial.  They avoid eye contact.  They make deliberate changes in their paths to avoid me.  If with children, they often take pains to shield me from view.

Now my appearance is by no means grotesque. But my gait is different enough and my speaking indistinct enough to allow the label “different”.  I get the sense from some people that all of us less than perfect should be put away.  Kept out of sight.  Become a secret.

But I cannot keep my ALS  a secret.  It is out there front and center for me and others to accept and deal with as best I and they can.  It is not going away.  Unlike a bad haircut, it will not get better.

The good news is that my ALS is not contagious.  But the opportunity to share love, support and hugs is certainly contagious — but in a good way.  All around me I am finding friends reappearing after many years to embrace and reconnect.  I am finding new friends drawn by love and respect to stand with me.  I am making new friends who are also battling our disease — we cling together and are all stronger for it.

It is clear that we are collectively increasing the amount of love and caring in the universe by a significant amount.

But none of that would be happening if I withdrew and kept my ALS a secret.  Or if my fellow PALS did the same.  I am coming to understand that I have an obligation to share my adventure to enable others around me to have the opportunity to experience the love and connection that has already had such a positive impact on me. And it is clearly not pity that is being exchanged here.  We are celebrating life, affirming our humanity, and strengthening all our lives through these connections.

So no secrets.  No hiding.  No excuses.  I am here, ready and able to engage.  Giving and accepting hugs and love.

HUMILITY

For over 20 years I have been regularly attending a men’s Al-anon meeting. What I have learned in that meeting and from my brothers there has been an important part of my ability to deal with my ALS. Last Saturday I spoke (using my technology) at the meeting on the subject of humility and as I prepared I realized how much similarity there was between what I was saying there and what I have been writing on this blog. Here is part of what I said.

I believe that humility is the core of the seventh step, and the key to achieving the serenity the program promises. Humility reaffirms the powerlessness we acknowledged in the first step, but now becomes the foundation for our whole new powerful lives based on living the principles of the program.

Humility does not mean sitting passively in the back row as life passes by. It requires us to engage life with passion and integrity.

Before I understood and embraced humility I expected the universe to revolve around me. I can remember being caught in a traffic jam, and becoming angry because all the other cars on the road were making things inconvenient for me. I really said to myself, “What are all these drivers doing on the road when I need to go somewhere really important.”

As I gave up the enormous burden of being the world’s Master, I was able to be more flexible to accept the real challenges, pressures, and stresses of daily life. I now have more patience and understanding with others.

As I became more humble, I began to realize that I was not a god, and things did not have to work the way I want. When I expected things to work out in my favor and they didn’t, it caused a lot of stress.

When I learned to live with humility, I realized that it became much harder to walk around feeling superior and needing to “fix” everyone around me.

When I accepted my humility, I was able to let go of the feelings of shame that had locked me into frustration and unhappiness. As I become vulnerable, I entered a world in which I began to be honest with myself and others about my feelings and thoughts and begin living a more authentic life.

I have learned that achieving humility requires a positive act – a profound leap of faith to acknowledge and accept my humility. As with the second step, it is not simply surrender. It took a deliberate commitment to a decision and action. But the rewards for this hard work have been life changing.

I have become humble in the face of my ALS. I have come to understand that acceptance of my journey frees me from the burden of fixing others or myself. I have become grateful that needing to pay careful attention to every move almost forces me to live in the moment, leaving little time for shame, regrets, over-thinking, or feelings of superiority.

Accepting the vulnerability that comes with humility, I can be open to the overwhelming expressions of support, and am being nourished by, the loving connections to so many family and friends. My earlier embrace of arrogance and hubris did not produce any comparable positive outcomes.

Continuing that theme of humility, it has been one of those bittersweet weeks – there seem to have been a lot of them recently.

I had a birthday – I have entered my 70th year. I am working hard to wrap my head around that. While I did have some feelings of disappointment that I am not where I had hoped to be at this point in my life, I was incredibly buoyed by the number of sincere expressions from friends – one of the positive side effects of Facebook.

I have managed to go almost two weeks now without another fall – paying attention does have its rewards. Even old guys can learn.

I played an active role as part of my Reston Interfaith board chair responsibilities. I used my voice technology to make remarks at a fundraising event and to chair a board meeting. It’s much harder than I had assumed it would be a year ago, but I can still be effective.

I had great visits with old and new friends who seem not too discouraged by my speech weakness.

My feeding tube was replaced by a “button” which should make my eating life much easier.

Approaching the world and my disease from a perspective of humility enables me to appreciate the opportunities that life is presenting for love, humor and service. When the roll is called every morning I am determined to answer “present”.

The Luckiest Man

I suppose it was inevitable that everything happening to me would catch up and I would have a few days of being discouraged.

This was go to doctors’ week.  I had good visits with my Neurologist and Pulmonologist, and a full set of pulmonology function tests that are about as close to waterboarding as I ever want to get.

Bottom line is not real news, but does put a seal on my own self-awareness.  I am getting weaker.  I am now walking with a cane full time (or at least when out of the house). Eating anything harder than pudding is a thing of the past. Breathing while lying on my back is getting weaker, so I will begin the process of moving to new breathing assistance in the next week.  It is a little harder for people to understand my speech, so I am concentrating on slowing down and speaking clearly.  And I am using my iPad technology to help in some settings. Finally, the H word has now been said out loud – Hospice.  We will start meeting with them after the summer to better understand the support and services I will eventually require.

So my initial reaction to the two days of medical visits was to be discouraged.

But thankfully the sour mood did not last long. I was told I do not have to worry any longer about cholesterol or blood sugar numbers.  I participated in a series of very important planning meetings for the non-profit organization whose Board I now chair.  Check out www.Restoninterfaith.org and standby as we unveil our new and powerful name in the next month. I had wonderful reaffirming opportunities to talk with family and friends. I had good workouts at the gym.  Roz and I saw a fabulous production of Anything Goes at the Kennedy Center.  I made and shared wonderful smoothies and gazpacho. And we get to spend the evening of the 4^th on a small boat with good friends watching and launching fireworks.  We arranged to meet old friends on our upcoming trip to Europe.

I wrote to a friend today that I understood the risk she was taking by putting so many of her emotional eggs in my nest, and told her I will do my best to not drop them. Her loving response reassured me that I can trust and rely on my friends and family to make this journey with me, and that we are all stronger when we are united.

On this day in 1939 Lou Gehrig spoke these memorable words: “Today I consider myself the luckiest man on the face of the Earth.”  That is exactly how I feel today, and so much of the credit goes to all of you who are standing by to pick me up when I fall, to ignore my drooling, to concentrate hard to understand me, and see the real me behind this masquerade of my illness.  Thank you!!!

Dancing in the Rain

I have had the remarkable experience this week of long conversations with many friends. It is heartening to know that despite my weakened voice, I can still be understood when I speak slowly and focus on speaking clearly. It is particularly heartening to know that my friends and family are able to get passed my ALS and deal with me as a grownup friend, not a patient to be pitied. There will be plenty of time for that soon enough.

My ALS is the elephant in the room, but it seems that calling it by its name allows us to get beyond the disease to relate with love and dignity.

I am so grateful to have so many people around me who are not scared off by my diminished capabilities.

One of those friends asked how I was doing with “living in the present?” I told her that it was not easy but that I was able to be here most of the time. As I thought about her question later, I started to identify some of the challenges to being in the present.

First, of course, is fear – of the known and unknown future. It’s not hard to slip into preoccupation with where my disease is taking me – a world in which I do not speak, “eat” only through my feeding tube, breathe with a machine, and ambulate on a big power chair. I can usually spot the fear coming on and I have some effective tools to minimize its impact – most importantly, just recognizing it and calling it by its name “fear”.

At the beginning of this journey I could easily be trapped in my past, wondering what I did wrong to deserve this cursed disease. But as I learned more about what was happening to me I realized that there is nothing I (or my Doctors) can point to as a cause. There is no known behavior or circumstance in my past that has lead to ALS. Accepting that, I am no longer obsessed with reexamining every day of my life to find an explanation. Being able to give up the need to dive deeply into my past has also mostly freed me from the urge to rewrite parts of my past. Being able to give up that perverse challenge has freed me a good deal to be living in the present.

Planning for the future is another big challenge to living in the present. While some planning is helpful and important, I have realized that it does me no real good paying too much attention to the fact that at some point I will need to select a fancy power chair and a mini van to get around, or equipment to just get in and out of bed and chairs and the bath. There will be time enough for those decisions as I get closer, and I have excellent resources to get those things done when it is time. So I can label the obsessive planning distraction and get back to the present.

There is of course still planning to be accomplished, days to organize, work and service obligations to fulfill, and vacations to arrange. I still must make shopping lists for goodies to keep my VitaMix happy. But I have learned that I can approach these planning tasks from a present perspective by being attentive to what is really important for me to do now and what can wait.

So in the end it’s about choices. I remember an old adage I learned years ago but had forgotten until recently – “pain is inevitable; suffering is optional.”

On my desk is a little wooden box Roz gave me recently. On the lid are these words – “Life isn’t about waiting for the storm to pass. It’s about learning to dance in the rain.” Whenever I sense that I am about to let fear, planning or other obsessions get in the way of dancing, I open the box and deposit the dysfunctional thoughts – and I am free.