Sometimes, the qualities that we desire most are those that are most elusive.

My husband, Bruce, a.k.a. BG, loved to take care of his family.  When we received the news that he had cancer, he immediately determined that we should strive for normalcy. It was his desire for normalcy,

as elusive as it seemed to us at that moment, that set his family down a path of carrying on, doing well, and enjoying life.  It served us well through his illness and beyond, and I am sure will continue to do so

*  *  *  *  *

Every patient is unique, and no two families are alike. What this slim little volume offers is a collection of decisions, thoughts, and actions that worked for our family when my husband was diagnosed with cancer.  If this primer helps just one other family in any way, it will have been worth going back to our trial with this disease.

Writing this has also given me the chance to honor Bruce, our family and friends, and his many wonderful caregivers, but most of all, our children, Westy and Lindsay, in whom BG lives on in so many wondrous ways.

 

Normalcy is available here as a free download to cancer patients and family members – or anyone dealing with a devastating diagnosis –  under a Creative Commons license.
 
Download PDF copy here.

© Wendy Chapin Ford 2012

 

Table of Contents

Introduction

Take care of things early.  You never know what you might be saving.

Pay attention.

Trust your instincts, even in a split second.

Talk to the doctors, even if it seems out of line.

Talk to the kids, thoroughly and truthfully, but at the right time.

Let people know.  They will want to help.

Appreciate the people around you, even if you don’t know them; you may make some wonderful friends.

Find ways to enjoy your days.  They are all that any of us actually has.

Sometimes, it’s OK to pretend.

Your friends are all golden, and you will never need them more.

People mean well, but you know your family best.

Take great care with transitions.

Hospice is sacred ground.

You will find the words you need.

In the end, love is all we have to give, the only thing that matters.

There is no preparing for the day.

The children are top priority – nothing else comes close.

Give yourself time to breathe.  There is no set schedule.

Wisdom will help you through the rough patches.

Innovation can help with the new reality.

Family is paramount.

Speak of your loved one, and often.

Strive for smooth sailing.

Fear not the memories; you will smile again.

Hope is in reach.  Watch for it and listen for it.

Epilogue

 My Hopes for Normalcy

Blessing,” by John O’Donohue

Dedication

Miscellaneous Helpful Tips

Parting Thoughts on Grief

About the Author

 

 

 

*  *  *  *  *

Every patient is unique, and no two families are alike. What this slim little volume offers is a collection of decisions, thoughts, and actions that worked for our family when my husband was diagnosed with cancer.  If this primer helps just one other family in any way, it will have been worth going back to our trial with this disease.

 

Writing this has also given me the chance to honor Bruce, our family and friends, and his many wonderful caregivers, but most of all, our children, Westy and Lindsay, in whom BG lives on in so many wondrous ways.

 

 

Take care of things early.  You never know what you might be saving.

It was an unlikely start to our trouble, originating years before with an early health scare.

Soon after our first child, Westy, was born, we tried to buy life insurance and were declined.  Bruce’s enzyme levels were the height of a person who drank a quart of vodka a day. Yet he had never been a heavy drinker.  It was merely the way he was built: a simple case of bad luck.

 

The diagnosis was primary sclerosing cholangitis (PSC), an incurable, but manageable liver condition. We chose not to dwell on the possibility that in a small percentage of patients, the disease would lead to cancer.  Ironically, this scare may have gained us years.  Had the illness gone undetected – and thus untreated – we might have lost BG much earlier. Strong, active, athletic, he did so very well on the medication for so many years, and then our luck ran out.

The last normal year for us was 2006.  We were a typical family of four:  dad Bruce; mom Wendy; son Westy (age 16), and daughter Lindsay (age 11).  We were fortunate – happy and healthy, athletic and especially fun. People would say that we did more in one weekend on vacation than most do in a month, and BG set the pace.  He loved to be outdoors, bike-riding, sailing or skiing, passions that his children carry on to this day.  A larger-than-life figure, his joie de vivre was infectious. People young and old loved to be near him. His wit and humor, in fact, his entire approach to life was luminous and magnetic.

I never thought that thirty years could pass so quickly.

It was Christmastime that year when his color began to change.  His eyes and skin began to show a slight yellow tinge, and his urine darkened.  In January 2007, BG’s doctors scheduled him for the first of several endoscopic procedures (ERCP) to relieve the blockage of his bile duct.  The procedures sometimes took hold, enabling BG to get back to his regular life.  At other times, a low-level infection with its attendant, disabling fever would result, laying him low for several days.

 

That was our first period of uncertainty.  We never knew how successful the procedures would be.  The setbacks were subtly devastating, as neither of us wanted to give voice to the outcome that we dreaded each time he experienced a complication. As it turned out, those setbacks were harbingers of things to come, despite the biopsies done during the procedures that initially came back negative.

 

 

Pay attention.

In June of 2007, BG was due for yet another procedure.  At that point, he had been doing well.  His latest ERCP had taken hold, and there were no complications.  Rather than risk compromising our precious family summer in Maine, we consulted with the doctors, who said that it would be fine to push the procedure to the end of summer. If it ain’t broke, we all agreed, let’s not fix it – just yet.

As it turned out, that summer was one of the most glorious our family ever had. As usual, we were at our favorite place in Maine, and the weather was perfect.  The four of us, like a family of ducks, were out on the water every day.  Westy was a beloved sailing instructor at the local race camp where Lindsay was doing so well; BG steamed around the harbor, sailing his beloved Force 5, never quite leaving behind the little boy in himself; and I enjoyed it all from the vantage of a simple rowboat, skittering around the water like a mother duck.

One afternoon toward late summer, BG and I were heading to the dock at once.  I landed first.  After tying up my boat, I began to walk up the ramp, the evening’s dinner plans doubtless on my mind.

 

But for some inexplicable reason, halfway up the ramp, I was compelled to stop and look back, and just in time to see BG execute a perfect, stop-on-a-dime landing under full sail, right to the dock.  It was gorgeous.  He was so skillful and vibrant.  I was so proud of him and glad that he was enjoying himself so much, especially after all the uncertainties of our year.  It was a glorious moment that left me beaming.

It was also the last time I would ever see him sail.

That unforgettable scene of my strong, good, handsome husband flying toward the dock, completely in control – as usual – is a treasure, locked in my mind’s eye forever.  That would come to be the image that would supplant other images to follow, thank God, and the one that he would certainly want me to carry. My turning around at that moment on the ramp was a gift of presence and remembrance.

That September, our whole family felt good about returning home after such a successful summer.

Lindsay was in seventh grade, Westy, a junior in high school. BG had his ERCP in mid-September.  On October 1st, the call came from the brilliant and compassionate Dr. Michael Curry, BG’s primary specialist, and head of the liver center at Beth Israel Deaconess Medical Center (BIDMC, or BI), in Boston.  He had the results of the biopsy, always done in conjunction with an ERCP.  Up to then, they had been normal.

This time was different.  I quickly sensed that something was wrong.  Bruce took the phone and spun around a bit, pacing as he listened.  He caught my eye and gave me a “thumbs down” gesture and in that moment, my world stopped.  Everything fell away.  I could see, but everything was gray.  I felt numb, I couldn’t think.  Dr. Curry’s news was ominous.  There was a tumor on Bruce’s bile duct.  He was in the unlucky small percentage of PSC patients whose condition had devolved to cancer.

Trust your instincts, even in a split second.

The call came late in the day.  Fortunately, Westy and Lindsay were upstairs and out of ear-shot.  Bruce and I had been preparing to go to the home of friends for a dinner party. We quickly changed course. We still went out, so as not to raise questions with the kids, but to our favorite restaurant, instead. I called our friends to explain that we couldn’t come to dinner, after all. I can’t remember what I told them, but I didn’t have to explain.  They knew what we had been going through, and they also knew that something was wrong.

That was the first of the myriad decisions that we would make throughout this awful journey.  Some were made in a split second; others required more time; others, we chose not to make at all, or to put off for a time.  It always felt as though we were flying by the seat of our pants.  But this was a time to trust our instincts, and I want to believe that we made good decisions.

At Glenn’s Galley, it seemed as though Julie, the hostess who had known us for years, understood that something was different for us that evening.  She led us to the most private table in the restaurant, and that is where we began to plan our strategy.  BG took the lead.  This was his dreadful ballgame, after all, and all I wanted to do was back him up, however I could.

“I want normalcy.”

That was BG’s first directive, and I thought it was a pretty good idea, too.  Right then and there, we were off on our awful adventure.

The theme of normalcy turned out to be brilliant, successful, even exquisite, in its terrible way.  Simple and straightforward, it informed every decision we made and every, single thing we did in the weeks and months to follow.  At each step of the way, it helped us manage this monstrous illness that was barreling down on us.

Always, our top priority was Westy and Lindsay.

The first decision we made was actually not to speak to the children – until we had a plan.  We wanted to be sure that whatever information we give Westy and Lindsay would be as accurate as possible.  That meant keeping a secret until we met with the doctors.  Initially, we would meet with Dr.

Curry, who would provide us a more thorough explanation of next steps and options.

 

 

Talk to the doctors, even if it seems out of line.

Prior to our meetings with the doctors, my secret mission began.  In addition to the decisions that BG and I would make together, I had to navigate another course: to do as much as possible to ensure Bruce’s comfort – mental and physical.  This often meant calling BI ahead of our appointments to speak with the doctors privately.  I had to prepare them for dealing with Bruce – without Bruce knowing.

This was no small feat with physicians like Dr. Curry, in great demand with work in clinic at BI, research, and teaching at Harvard Medical School.  Fortunately, his understanding assistant was able to get me through.  It was imperative that I talk to him ahead of that first meeting, especially.

“Dr. Curry,” I remember saying, “forgive me for directing your meeting with Bruce.  But there is something you need to know about my husband, as we move through this process.  He doesn’t want to know anything he doesn’t need to know. This includes staging levels, percentages, or survival rates of patients with cholangocarcinoma. It’s fine to answer his questions.  But please don’t give him more information than he needs to know about his own, particular case.

“Some patients probably want to know everything they possibly can,” I explained further.  “But for Bruce’s frame of mind, his mental health, this is how we have to work it.”

We met with Dr. Curry and his resident fellow, and although he followed my wishes to a T, I was on edge the entire meeting, so afraid that something might slip out inadvertently.  But Dr. Curry offered his information as precisely as I had requested, with minimum thoroughness and maximum compassion.

One of the options Dr. Curry discussed with us was surgery.  We quickly scheduled a meeting with Dr. Mark Callery, BI’s chief of general surgery whose specialty just happened to be the Whipple Procedure, which was precisely what BG required.  If that didn’t work, the next option would be a liver transplant.

We met with Dr. Callery soon after, on a beautiful day in early October.  We arrived at his office at BI and hardly had to wait to be ushered in.  He greeted us, introduced his team, and explained the daunting procedure.  Put simply, it involved resecting – or removing – the tumor and surrounding area in the morning, then putting things back together in the afternoon.  To BG and me, Dr. Callery represented the epitome of knowledge and capability.

Toward the end of the meeting, Dr. Callery described a most positive scenario – no guarantees, of course – just one of several he laid out for us.  As he spoke about the potential outcome of this particularly sunny possibility, I actually found myself swooning.  “Who knows,” I heard Dr. Callery say, “but in three months, you may find yourselves right back to your normal lives, and all of this will be a memory…”

“Dear God,” I thought, doubtless half-praying.  To hear this brilliant doctor speak in such optimistic terms was almost more than I could bear.  I began to feel as though I might faint right out of my chair, as I allowed myself to imagine a time that this C-monster that had barged into our life might one day soon be history.

At the end of our meeting, we were still concerned, but certainly more hopeful than before.  We had both been mightily impressed by Dr. Callery.  Knowing that this accomplished doctor, the chief, whose specialty was just what BG needed – and that he would be performing the surgery – was a tremendous morale booster.  I was walking on air as we left.

 

BG’s pre-surgical CT scan was scheduled for October 11th, one week before the surgery.  But in the time between the diagnosis in late September and October 11th, as the CT scan would reveal, the tumor had spread to the pancreatic head and to encompass the two major blood lines to the liver. This aggressive growth eliminated the surgical option, as well as radiation.

Our only remaining course was chemotherapy.

Talk to the kids, thoroughly and truthfully, but at the right time.

Once we knew the plan, it was time to talk to Westy and Lindsay – and BG wanted me to do the talking.  As anyone who knew BG would have realized, that in itself was a poignant departure from the norm.  Bruce Ford had never been at a loss for words.

Without a doubt, the talks that I had with the children about what was happening with their father during that time were probably the most difficult things I shall ever do.  But they had to know what was happening, and they had to trust that we were being straightforward with them. I also knew that I had to stay calm, for them and for BG:  normalcy.  I don’t know how I managed.  I am just grateful that I had – or found – whatever inner mettle I needed.  I suppose we find it when we need it.

We never intended to keep anything from Westy and Lindsay.  We just had to be sure that whatever we did tell them was accurate.  We wanted to avoid confusion or raising false hopes, which is why we waited until we were as certain as possible about next steps.

We called the kids into the kitchen, and I sat with them at the table while Bruce stood behind me.  I didn’t look at him – I don’t think I could have looked at him.  I think he was pacing.  I had no speech planned, I was expecting a conversation.  But BG had told me just moments before, “I want you to do the talking.”

As Westy and Lindsay sat down, I couldn’t help but feel that I was handing down a sentence of sorts.  It was dreadful, but it had to be done. As would be the case in so many instances to follow, there was simply no alternative.

Sometimes, we just have to walk the plank.

“West, Lindsay, you know that Daddy and I saw the doctors in Boston today,” I began, “and there is a tumor.  There’s a cancer.  But Beth Israel is one of the greatest hospitals in the world, and we have the best doctors imaginable.  We couldn’t possibly be in better hands.

“The thing about cancer,” I somehow continued, “is that it is always different.  No two cancers are alike, and every case is different, and that’s all we can know now.  We’re just going to do the best we can.  We’re in one of the best hospitals in the world, and Daddy is getting the best possible care.

“And,” I added, “everyone is very smart and very nice.”

There were no tears, just understanding and thoughtful acceptance. It was an evening of grace – awful grace – but grace, nonetheless.  The kids were stoic from the beginning.

 

 

Let people know.  They will want to help.

Next, I quietly moved into high gear with everyone else, making sure to let family, friends, and the kids’ teaching teams know what was going on, but also about our fervent wishes for normalcy.  We didn’t want a lot of long faces and cancer talk swirling around Westy and Lindsay, spoiling their days.  I explained to our beloved community that there was no need to address the kids about what was happening.  But we wanted people to understand, to keep an eye out for the children and let us know if they noticed anything troubling. I felt that it was crucial to be in close communication with the people who worked with our children.

To the great credit of everyone involved with our family, within our community, our strong wishes were respected.  Westy and Lindsays’ days seemed to pass with as much normalcy as possible – just as BG wanted.

Also, though many people wanted to help, very few were actually in position to do so. Those closest to the family or directly involved with the kids were the ones on the “front lines.”  But it was humbling to experience the outpouring of care.  So many people, including some we didn’t even know, cooked and baked for us such that I ran out of freezer space.

 

Appreciate the people around you, even if you don’t know them.You may make some wonderful friends.

We arrived at Beth Israel’s Shapiro Center on a day in early November for BG’s first session of chemotherapy.  One arrives at Shapiro-9, the hematology/oncology floor, with some trepidation.  After checking in, we sat down and waited for Bruce to be called for his treatment.  Soon after we arrived, an especially dear fellow named Sam approached us with a little trolley of breakfast treats and juice.  He introduced himself, remarking that he had never seen us, and asked if we were new.

“Will this be your regular day?” (for chemo), he asked.

“Well,” we surmised, “probably.  We’re to come every two weeks, so this must be the day.”

“That’s good, because there’s a different group of volunteers each day,” he declared, “and we’re the nicest!”

Soon enough, we understood what Sam meant.  Over the course of the day, we met the other volunteers, and one by one, they endeared themselves to us, as well.  Former chemo patients all, they simply moved around the clinic, dispensing treats, lunch, and dessert, along with their own special brand of comfort and encouragement.

It was inspiring to have such a group of warm and welcoming survivors befriending a new crop of cancer patients as they faced the great unknown. These people became so dear to us that I think we actually found ourselves, at some level, looking forward to BG’s bi-weekly chemo sessions.

Then there was Annie.  Ann Brady was Bruce’s primary chemo nurse, and she was one in a million. Whoever could have guessed that a chemo clinic could be so cheery and optimistic, but with Annie in charge, that’s exactly what it was. Kind, competent, and understanding, Ann Brady was the archetype of the ideal oncology nurse.

My first question to Annie was about pain, if BG would have it and what I could do about it.  She immediately shook her head. “No,” she stated, in no uncertain terms.  “He does not have to be in pain.”

Hearing those words from her was like a weight lifted from my heart.

Finally, we had the great fortune to have Dr. Rebecca Miksad as BG’s oncologist.  It was she who explained to us how the chemotherapy would progress, and who oversaw his care at the clinic.  Bruce had chemo every other week, and we met with Dr. Miksad once a month.  Every two months, BG had a CT scan to assess progress, with a week’s wait to learn results.  Dr. Miksad was equal parts intelligence and compassion.  She stayed with us every step of the way at Beth Israel, even when she was no longer in charge of his care.  I am so grateful that she was with us.  I can’t imagine having gone through it with anyone else.

 

 

Find ways to enjoy your days.  They are all that any of us actually has.

BG’s first CT scan was scheduled for December 26thMerry Christmas.   Fortunately, during what would have been a dreadful time waiting for results, we were well distracted by friends who invited us to Maine over the holidays.  It helped so much to get out of our routine and into a completely different environment.  Once back home, we were thrilled to learn the results of the first scan.  To quote Dr. Miksad: “The cancer was stopped dead in its tracks!”

We could hardly believe it.  At the same time, though, it seemed that it should go that way for Bruce.  I think we both began to wonder if that was the way things would play out and BG, once cured, would ultimately go off the chemo.  Or, perhaps the chemo would shrink the tumor back so that it could be surgically removed.  After all, things had always gone our way.  However, at the same time, I think we also learned to put the brakes on, so as not to tempt the gods. We were encouraged, but cautiously so.

Then, somehow, we were able to return to a semblance of normalcy that we so desperately wanted. Bruce, “a bull” of a man, in the words of our nephew Alex, took the chemo well.  Though his energy was a bit diminished, he was able to continue teaching and enjoying life.  At the beginning of March two months later, the next CT scan also revealed that there was no further growth, and a couple of other markers were down. We began to see even more light at the end of the tunnel.

But by the third scan in early May, our luck changed.  As soon as I walked into Dr. Miksad’s office, I knew that she had bad news before she even said a word.  She had taken care to place two chairs by her desk side by side, touching. In an instant, I knew what it meant.  She knew that BG and I would also want to be as close as possible when we heard the news she had for us.

“The cancer has outsmarted us, it has jumped to the lungs,” the young doctor calmly explained.  “But, we can try a different type of chemo.”

We briefly returned to the clinic to schedule an appointment for the new therapy.  As we walked back from Dr. Miksad’s office, BG told me not to say anything to our new friends.  “They’ll find out soon enough,” he said.  But then I ran into Sam.  I didn’t dare break down, and I had to respect BG’s wishes.

 

“Everything has changed, Sam,” was all I could say.  “We’re not staying today.”

 

 

Sometimes, it’s OK to pretend.

We returned the next week for the new dose of chemo, and that marked the beginning of a different and downward slope. It was stronger medicine than before, and more difficult for BG to tolerate.  He tried to hide his discomfort and carry on, but I could see that it was harder for him. I pretended not to notice, while keeping an eagle eye out for anything I could do to make him more comfortable.  But I couldn’t be too doting, which would have seemed unnatural.  It was a fine balance to strike, and I hope I did the right thing.

I’ll never know.

It went like that for several weeks.  The kids being at school during the days certainly helped, but a sense of unreality had begun to take over.  Our precious normalcy became more difficult to achieve. With all the uncertainty, it was difficult to make plans.  BG was home more often and usually resting, and the kids couldn’t help but notice.  Though still as handsome as ever, he also began to lose more weight.

Then came June 2nd.  He had gone into Boston that day for a blood test, driven by our friend Karl.  He came home and sat in the garden for a bit before going upstairs to bed.  Just as I was about to turn in, he went down-stairs and I heard him call out for me.  He sounded different, as though he were far away.  I hurried down and found him lying on the living room floor.

“I didn’t fall,” he made sure to tell me, brave as ever, “but thought I might, so I just let myself down.

“You had better call 911,” he told me, ever the one in charge.

“I didn’t fall,” he was sure to remind me.

 

 

Your friends are all golden, and you will never need them more.

The Fire Department arrived first, then the ambulance and police.  I called one of the most selfless people I shall ever know, my dear friend Vicki.  She came immediately to stay with the children who were, blessedly, asleep, despite the emergency vehicles with their lights flashing and all the different people in the house with their heavy gear and equipment.  As I prepared to follow the ambulance to the local hospital, a trooper gave me a sympathetic pat on the back. “Oh, God,” I thought, “not sympathy.”

Upon arriving at the Anna Jacques Hospital ER, I found BG right away. Everyone was kind and capable, but the irony was that we didn’t know any doctors at the local hospital – with one exception. All of our doctors were in Boston, at BI, because that was where we had always received our care.  But our good friend John was on staff there.  I asked a nurse if he might be on call.  He wasn’t, but when she learned that we were pals, she put the phone in front of me and, obviously knowing John – and Martha – told me to call him at home.  It was about 11:30pm.

Martha answered, and as I explained what was happening, I could hear her whisper to John, “You have to get down there.”

The ER staff was taking care of BG just fine, but it was hugely comforting to see John.  It must have taken him all of ten minutes to arrive.  He stayed with us until BG was placed in the special transfusion ambulance for the trip down to Boston and Beth Israel.

I returned home, relieved Vicki, slept for an hour, then awoke and got the kids off to school.  Martha had a meeting in Boston and picked me up for the drive into the city.  As she let me off at BI, she asked if I would be OK by myself.  My answer?  “Oh, sure, thanks. I know so many people here, I’ll be fine.”

I made my way up to the Medical Intensive Care Unit (MICU) as quickly as I could but wasn’t able to see BG because he was undergoing one of many procedures to come. I went to the family waiting room.  As I sat there – by myself – I began to think about what might happen next, and soon realized that perhaps I shouldn’t be alone, after all.  It was about 8:30am.  The first person I thought to call was our old friend Leslie.

Leslie was beside me within the hour.  She and her husband Bill, great old friends from our early days in Boston, would be even more amazing in the weeks and months to follow – and beyond.

My next calls were to the family:  BG’s sister Nancy, in New York, and his brother Dennis, on Cape Cod, and other best friends, Cathy and Hilly.  I never heard so many grown men weep.  I kept telling myself that I had to get through this, that I had to find strength. It wouldn’t do BG any good to see me undone. By mid-day, the family waiting-room in the MICU was pretty much full of our people.  I still couldn’t see BG, though, and I had to get home to be there for the kids after school.

 

 

People mean well, but you know your family best.

One of the most challenging aspects of Bruce’s hospitalization was trying to respect his wishes and, at the same time, do right by our children.  At the height of complexity on this issue, opinions were coming at me from friends, family, professionals, and my husband.

The concern was about Westy and Lindsay being unable to see Bruce.  But, in the beginning, Bruce didn’t want the kids there.  It wasn’t that he didn’t want to see them, he just didn’t want them to see him in his weakened state.  He wanted to get better before they saw him again.  Of course, he wasn’t going to get better, but I couldn’t tell him that.  Meanwhile, any number of well-intentioned people, both friends and professionals, were making their profound concerns known to me, clearly, firmly and with some degree of urgency because no one knew how much time Bruce had.

Fortunately, BG was able to hang on until the kids could see him again, in fact, much longer than he was expected to.  Looking back, I must have had faith that it would turn out that way, thank God.  For some reason I knew that he just had to be able to see them again.

The next several days are a blur in my memory.  I never had to drive into the city, friends always took care of that, even if it meant a special trip, (undoubtedly one of the reasons I’m still alive).  Sometimes I was able to see BG, and sometimes not. Sometimes, I simply sat with him, though I was often unsure if he knew I was there.

Early on, the doctors explained that there was a medical intervention that they could try, but which he probably would not survive.  As long as he wouldn’t be in pain, we agreed to go forward because I knew that was what he wanted.  We actually went through that scenario several times, and each time I was told that he was not likely to survive.  Yet he did survive, time after time. BG’s doctors were trying valiantly to keep him alive, and BG was also trying, with all his heart.  I lost count of the number of transfusions.  As nephew Alex had put it, Bruce was a bull, indeed.

Ultimately, the time came when nothing more could be done.  Soon after he arrived in the MICU, BG asked to consult with Dr. Callery, who had inspired us so, months earlier.  One of Dr. Callery’s surgeons visited me in the MICU.  He was blunt, but kind.  It was a time when the only compassionate approach was to be straightforward.  He proceeded to explain, with great respect and care, something that I knew, but the realization of which BG was fighting mightily:  there was no remaining surgical option.

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Dr. Miksad had kept up with us from the chemo clinic, and she was right next to me that afternoon. I wanted more than anything to save BG from despair, from understanding the awful, hopeless truth.  I actually found myself wishing that he would die before he had to know.  Ultimately, it was Dr. Miksad who followed through with the dreadful news.  The MICU doctors were more than fine, but the key was this young oncologist we had come to know through BG’s earlier treatments.  I watched, as she sat on my husband’s bed and delivered to him what was undoubtedly the worst news of his life.  I don’t know how she did it, but she did, and in such a way that respected Bruce’s feelings and his intelligence.

Her ability to give him such news with such knowledge and compassion left me awestruck.

I was so grateful.

 

 

Take great care with transitions.

The next stop for BG after the MICU was a regular oncology floor.  In Bruce’s case, that meant palliative care – before hospice.  The good news was that he had a private room and could receive more visitors now that he was out of the MICU.  The bad news was that it was the last stop before hospice, which he understood.

At that point in a person’s life, all one can do is let him know that he is loved. I let people know that he could have visitors – when he had energy – and they came:  old friends, new friends, hospital friends, and family, but best of all, Westy and Lindsay.

 

Our old friend Richard asked what he could do – “anything.”  It was a sincere offer, but he lived so far away, I thought nothing more of it, initially.  Then I remembered that Richard had retired early and his kids were grown.  I thought how great it would be to have him come up and stay with BG when I had to return home to Westy and Lindsay at the end of the day.  Richard was one of our favorite people, witty, smart, and devoted to BG.  He would be a great distraction. Richard got the first flight up from Florida that he could, and strode into BG’s room with a big smile, as if nothing were amiss.  I feigned surprise, and that’s the way it went.  People came in, smiled bravely, said how glad they were to see him, and visited as long as BG was able to carry on.

Then, the day came that we got word that a room had opened up in the lovely new hospice on the North Shore, not far from our home, and we prepared BG to leave his beloved Boston for the last time.

Hospice is sacred ground.

When BG learned that the hospice was located on the North Shore, a half hour’s drive from our home, he asked whether he could get home, if only for an afternoon.  I held my breath.  The heartrending answer, of course, was no.  One of the doctors simply gave a gentle nod of her head.  The medical risk was too great.

I preceded the ambulance the day he was brought up to the Kaplan Family Hospice Home in Danvers, a beautiful facility with lovely gardens inside and out, and lots of natural light pouring in.  Bruce had his own room, large enough for visitors and family-friendly, with a pull-out couch for sleeping over, a private dining area, bath and patio.  Whenever the kids were occupied in those days, I was able to move right in with him.  I was able to do that for about half the time he was there.  Before he arrived from Boston that day, I brought several items to place around his little apartment to make it more like home, family pictures, needlepoint pillows – a favorite boat I had stitched for him.  Friends brought flowers and books they thought he would enjoy.  Our friend Linda knit him a prayer shawl, and he made a point of calling to thank her; she was thrilled that he was able to do that and to hear his voice again.

The residential setting was natural and serene.  He loved being outdoors on his patio, overlooking a private green. The gardens were beautiful.  One morning, I even saw a coyote, and there was much birdsong.  At the beginning of his stay, we had several family pizza parties on the patio, which was wonderful, because BG was outdoors as usual, with his family:  normalcy.  He still looked the same, was still so handsome, and, perhaps most amazing, he still made people laugh.  As our minister Harold said in his remarks at the memorial service, “It did not feel like a visit with a dying man.”

At the beginning of his stay, he would sit in the sun in his wheelchair.  Later, we would move his entire bed outdoors.  But fatigue began to set in, and I had to limit the visitors more and more because he tired so easily.  Ultimately, he was saving what energy he had for the family, but especially for Westy and Lindsay.

One day toward the end, I arrived later than usual.  I had decided that Lindsay needed a day off, that she had seen enough for a while, and I knew that BG’s family from New York would be up early that morning.  Imagine my surprise when I saw that someone who had nothing to do with our family had barged in without consulting any of us, leaving just minutes before I arrived.  Never known for tact, the person insulted Bruce in a faulty attempt to be glib and was ushered out by our brother-in-law just minutes later.  I then realized that, of all things, at a time and place like that, I actually had to clear people.  The staff was appalled, as was everyone who heard of this breach of family privacy.

 

I was told that it was not the first time that something like that had happened in hospice, and it won’t be the last.  But people must understand that a place and time like that is private, sacred, family space.

 

 

You will find the words you need.

One of the more wrenching talks I had to have with the kids was the day before Westy was to leave for his job in Maine that summer as a sailing instructor.  Lindsay would follow a few days later, to begin her racing.  Every family is different, but BG and I had somehow tacitly agreed – for the sake of normalcy – that we did not want to put them through anything like a deathbed scene.

I gathered the children before we left to see Bruce that day.  How I made it through those talks I will never know.  Looking back, I think the reason I was afraid to let my guard down even a bit, was the fear that I wouldn’t be able to reel myself back in if I did.  Besides, there was no alternative. I simply had to do what had to be done – but in a way that was best for BG and the kids.

So, I sat them down for yet another of our excruciating little conferences and explained to them as gently as possible that there was something that they should know before we saw their dad that day – that it would probably be the last time for Westy to see him.  A few days later, before I took Lindsay to Maine to get her settled, I would have the same talk with her.  But I tried to do as much as possible with them together, because – as I always said – we were in this together, and always would be.  It became a mantra.

So then we were off to Danvers, for another pizza party on the patio with Bruce, on yet another relentlessly beautiful summer day.  The kids were so amazing – understanding, kind, and poised.  But most important, they were normal, which was the best way for them to be, at that time, for Bruce. I still don’t understand how they held up.  I lost my father when I was 34 and was undone.  Perhaps, like their beautiful dad, they just never lost hope.

Just before we left that evening, Westy leaned in close to BG, to tell him that he loved him.

I could barely watch, and I don’t remember anything about the drive home.

 

 

In the end, love is all we have to give, the only thing that matters.

That Sunday, I drove Lindsay to Tenants Harbor.  Her sailing program would begin the next day.  In those last days, people would see us and immediately start weeping.  But that was not in our playbook. “That is not helping me,” I would say, gently but firmly.  To their credit, our friends quickly joined our stiff upper-lip club.  People may differ on this approach, but I am pretty sure that it worked well for our family.  Always, I found myself thinking back to BG’s wish for normalcy.  Promoting that concept in support of Bruce was the least I could do, for I knew that he wanted it most for the children.

After the kids were both settled, Vicki drove up from Massachusetts to stay with them so that I could return to Bruce.  As soon as she arrived, a friend from Maine drove me up the peninsula to the airport at Owls Head, where Leslie and Bill had arranged for me to fly back to the North Shore.  Leslie met me at the airport in Beverly and drove me to the hospice, a bouquet of flowers from her garden in hand for BG.  When he saw her, he immediately asked about the sailing trophy that held the flowers, and we were right back where we had left off – as though nothing untoward had happened.  Leslie was so lovely and brave, smiling down at him the whole time.  I am sure that she cried the whole way back to her cottage.

After Leslie left, Bruce fell asleep as I unpacked my things and moved back in for the last days I would spend with my husband and best friend of more than thirty years.

In that time, BG was no different than he had been through the three decades of our marriage, except that he was very sick.  From the beginning of his illness, my primary mission was to ensure that he would not be in pain, and I was very successful.  But in that final week, he began to push back a bit at taking the medication because he didn’t like feeling groggy, and that was difficult to see.  I only saw him wince a couple of times, but it was a couple of times too many, and I had to use all of my persuasion to get him to agree to an increase of the morphine.

In the end, we are at such a loss, for words, for gestures.  Nothing is enough.  Or perhaps it’s too much. Ultimately, I think BG simply had to rest. He had certainly been conserving his energy for his family, and the kids had said goodbye. But I was still there, and that, as I came to understand, was a problem.

The hospice nurses would tell me, “24 to 48 hours – it will just be 24 to 48 hours.”  So, I would steel myself and wait, but then “48 hours” would pass, producing a sense of relief mixed with dread.  This happened again and again.  Finally, on the morning of Friday, July 11th, an amiable nurse named Mike greeted me.  Looking back, I realized that Mike was on a mission – a mission to get me to understand something that people had probably tried to explain to me all week.

“You know, I’ve been doing this work for so many years, and sometimes,” he gently began, “when certain people are around, the patients don’t…do what they need to do…

“They can have a hard time…letting go.

“Is there someone,” Mike asked, on an upbeat note, “that you could go out to lunch with?”

“Mike,” I replied, “I didn’t come here to go out to lunch.  I could have six people here in twenty minutes if I wanted.  Would it be better if I sat outside?”

Mike seemed dubious, but that is what we brokered, and I soon realized that it was an impossible situation: Bruce inside resting; his wife of 30 years “suggested” to be outdoors; the kids in Maine. Impossible.  I reached for the phone.  Bruce’s sister Nancy, in New York, was so gracious.  I could barely finish my dreadful little update before she burst out with a surprising and generous directive.

 

“Wendy,” she firmly stated, “at this point, the family is worried about you.  You’ve done all that you can.  Get to Maine. Be with the kids.”

 

Was she really telling me to leave her brother – who was dying?  (Did she and Mike know each other, I wondered?)

“But, but…” I was running out of explanations to justify my presence there, even to myself.

Thus, following an afternoon on the other side of a wall from my husband of more than three decades, after furtively sneaking back into the room to stroke his brow, or kiss him, or just let him know that I was there, before returning to my assigned post, relegated to the patio – I finally accepted that there was, indeed, no more that I could do.

It was Friday evening when I called Leslie and Bill, who had offered to get me back and forth to Maine on their jet service.  Leslie, not surprisingly, picked right up on my call.  She had her cell-phone in her pocket as she and Bill walked back from the home of friends in their charming village on Cape Ann.

“Leslie,” I began, “I don’t know how the planes go on weekends, but they’re telling me I should leave.” I explained my weird and dreadful situation, and she promised to call back within the hour.

Leslie called a half-hour later, “We have a flight for you at 9am tomorrow morning.”

I began to panic, it was all happening so fast.  Wasn’t I supposed to be with Bruce, my doubting self asserted?  Fortunately, our nurse that evening, Rosemary, had wisdom.  I conferred with her to confirm that leaving the next morning at 9am was, indeed, the correct thing to do.

 

Rosemary looked down her bifocals and commanded me to “Go.”

I returned to the phone and Leslie who, then, in one of the most thoughtful gestures that I shall ever experience, had a question for me. Of course, I thought, but what could it possibly be?  At that point, I was feeling as though I certainly had no answers whatsoever, for anyone. “Do you want me to come and get you – tonight?”

In that instant, the most unexpected sense of relief washed over me. I never would have thought of it. “Oh, my God, Leslie,” I said, “I don’t know, let me check.”

When I conferred with the wise Rosemary, she again looked down her bifocals at me and commanded me to “Go.”

Then I turned back to Bruce.

 

It was dusk, which made the world seem even quieter than usual.  Bruce was, of course, lying in his bed, his gaze fixed on the ceiling.  He wasn’t communicative.  He had to be given more sedation earlier in the day when he tried to get out of bed, a terrifying episode because he would surely have fallen and hurt himself. (Fortunately, his favorite aide, a lovely young Haitian named Ouzeman, immediately responded to my emergency call, as I struggled to keep BG from getting out of bed.  When Ouzeman appeared, Bruce said, “I have to get to my car. I have to go somewhere!” In that moment he spoke with such amazing vigor and determination:  a mystery of heart and soul and memory.)

Turning to him for the very last time, I wasn’t even sure if he knew who I was.  And I certainly had no speech prepared.  I could only try to think of words that might give him comfort.

“BG, I don’t even know if you know who I am,” I began, “but – I am your wife, and I love you so much, but they’re telling me that I might be interfering with what you have to do and that I should go. Leslie is coming to get me, and I’ll stay with them tonight before flying out early tomorrow, to get back to the kids, in Maine.  I’ll be with Westy and Lindsay first thing tomorrow, and I’ll call you as soon as I get there.

“Oh, Ducks, (my goofy retro endearment for him),” I said, “I can hardly believe they’re telling me this.

I always thought I should be here, with you. But they said that I should go, that I’m not helping you. “BG,” I somehow managed to continue, trying to think of the best possible sentiment to share with him, the one who always took such good care of us all and everything possible for us, “we will get through this.  There is so much love around us – that we will get through this.”

What happened next took everyone’s breath away. Bruce raised his hand to his mouth, which must have been very arduous for him.  He appeared to be trying to tell me something.  I wasn’t even sure he could hear me, or knew who I was at that point, so I was stunned and thrilled that he seemed to be trying to communicate. But I couldn’t make out what he was saying, so I bent low that I might be able to understand.  At that moment, he somehow lifted his chin – to give me a kiss on the lips.

That one amazing, wondrous, last move of his threw my whole plan into flux.

“BG,” I cried, “you do know who I am!  I don’t have to go, I can stay!”

 

The words tumbled out.  But he sank back, and I couldn’t reach him again.  Rosemary, now standing with Leslie at the door to BG’s room, looked down her bifocals at me one last time. “Don’t you see,” she said, “he’s saying goodbye.

“He’s telling you it’s OK to go.”

 

 

There is no preparing for the day.

The next morning after Bill saw me off on the short flight back to Maine and the children, he did something I had no idea he would do.  Knowing Bill, I shouldn’t have been surprised.  After my flight took off, he drove directly to the hospice and stayed with Bruce until the very end.  In fact, it was Bill who called me when it happened, just a few hours after I left – just as Mike predicted.

A friend picked me up at Owl’s Head, to drive me back to the house and the children.  As soon as I gathered Lindsay and Westy, we called Bruce to tell him how much we loved him.  Bill held the phone for him.  It was hard for him to communicate, but I knew he had heard our voices.

Lindsay went upstairs to shower, and as soon as I sat down, our old pal Meredith came tromping in through the barn, in tears.

“I hate this,” she said, “coming in here without him, I just can’t believe…”

“Meredith,” I said gently, holding up my hand, hoping she would understand, “this is not helping…”

Bless her, she was quick to understand, and sat down with me at my usual place in the dining room, right in the middle of the house:  mom-central.  Meredith and her mother Edie had visited Bruce in hospice the week before, on their way to another location in Maine, prior to coming to Tenants Harbor. They came from Paris each year to stay in the cottage just down the meadow from our house.  Meredith had her mother drop her off before even going to their house.  It was fortunate, because I wasn’t alone when the call came.

In fact, it was Meredith who realized what had happened even before I did.  I suppose I just couldn’t believe it.  I certainly didn’t want to believe it.  But a little after 2pm, Bill called to say that Bruce had just passed away.

Meredith jumped up to leave, panicked.  She didn’t want to “intrude.”  I told her to sit down, to sit right next to me, to put her arms around me.  Thank God I wasn’t alone.  Lindsay was in the shower.  I had to hold myself together.  Westy was about to get on a boat down in Port Clyde. I would have to get him. My thoughts raced.  Hold it together.  Gather the children.  I had to handle this just right for them.

I called our friends in Port Clyde.  The granny answered, “How is Bruce,” Jan asked.  “I’m sorry, I just have to pick Westy up.  I’ll be down in a few minutes.”  Of course, she understood.

I had Lindsay come with me to Port Clyde.  I wanted us all to be together.  I wasn’t sure where I should tell them.  It was a beautiful summer day, sunny and warm.  Perfect, except for one thing.  One huge, awful, terrible thing.  One earth-quaking, shattering thing.  Our world had stopped, and yet the earth kept spinning.  Shouldn’t it have stopped, too, I thought, for one crazed moment.

Where should I tell them, I thought.  Should we go to a beach?  No, it would spoil the beach for them forever. I thought we should go to some beautiful, special place on the peninsula.  Then I thought no, it would spoil it for them.  Forever.

Plus, we needed a space that was completely private.

I finally took them back to our beloved Foote House, as the house my family had rented for decades in summer was known.  The beloved house of their childhood summers.   The house where we had had so many fun times with their wonderful dad.  I brought them in and sat them down by the hearth in the front room.  They sat right together, next to each other, and I huddled as close as possible, facing them.

I didn’t know what to say, I wanted so desperately to tell them good things.  I told them the best about the last few days when I had been down in Massachusetts with their dad.  I told them that he had never been in pain, that I had moved right in as soon as I had flown back a few days before. I told them that the people surrounding him had been wonderful and kind, that Bill had gone right to him, and then Hilly, and then his brother Dennis and Terri were there with him.  I told them how I hadn’t even been sure if he knew who I was, and how he had kissed me when I explained that I was coming up there, to Maine, to be with them, and that the nurse said that it was his way of telling me that it was OK that I go, that I leave to be with them – that I couldn’t do any more for him.

But, finally, I had to tell them that their dad had just passed away.

I shall never forget how my beautiful children looked at that moment, that awful moment that I wished I had never had to share with them.  Of course, there were tears, and hugs — and lots of love, all around them — just as I had promised BG.

Then, there were other promises that I felt extremely fortunate to have been able to make to them.  I told Westy and Lindsay that nothing else would change, that we weren’t going anywhere, we weren’t moving, that we would come back to Maine as long as they wanted to, that that is what BG would have wanted. We would have a service at the end of summer after we all returned home, and it would be beautiful, and we would plan it together.  I told them that we were in this together, that we had always been a neat little family, and we always would be – and we were in this together.

I don’t remember what happened next.  I suppose we simply took up with living again.  I told them that their dad would want them to sail that summer and enjoy themselves and do well.  We must have eaten, because we survived.  We must have started putting one foot in front of the other because here we are.

And that is what happens.  You put one foot in front of the other, and after a while you realize you’re dealing with it, and a while after that, you realize that you’ve made peace with it.  Despite it all, as I wrote to our friends on that awful, but beautiful day on the coast of Maine, the world audaciously kept spinning.

 

 

The children are top priority.  Nothing else comes close.

There were so many details to attend to:  insurance, social security, lawyers, financial advisers, etc., etc., etc.  But one of the best decisions I made that summer was to let people know that notes were welcome, but phone calls were not.  As ever, as it always had been with BG and me, the focus was on the kids, and I did not want to be talking on the phone all day.  I wanted to be with Westy and Lindsay – in the present.  Friends stopped by, and that was fine and dear and comforting.  Those calls were invariably brief, people were considerate.  Invitations came, and I accepted those that took me out of the house only when the children were occupied.  The rest of the time was devoted to Westy and Lindsay – not a difficult decision.

 

One decision that came up very quickly following that awful day centered on Westy’s birthday.  He turned 18 on July 16th, 2008, four days after his father died.

We had celebrated nearly all of Westy’s birthdays in Maine, the first couple at our old camp, nearly all the rest at the Foote House.  Typically, we would gather whatever kids were around the Neck at the time, order a cake in the shape of a red lobster from Donna Dearborn, up the road, and Bruce would provide the entertainment by demonstrating fun science experiments.  As Westy grew older, there would be the annual birthday BBQ on the deck with the kids’ sailing pals.

I wasn’t sure how it would go, how I or anyone else would make it through, but I decided that we would celebrate Westy’s birthday, as usual, with a BBQ on the deck of the Foote House. I thought, that is what we do; it’s what we’ve always done; and it’s what we’re going to do again.  I am also pretty sure that it’s what Bruce would have wanted us to do.  So I began to call our friends in Maine, Westy’s friends and their families.

 

“Hi, Westy’s birthday is July 16th, and,” taking a deep breath as I continued, “we’re going to have a barbeque here, at the house – as usual.  I hope you can join us.”

Everyone came, each with an offering for the party, food, flowers, drinks, some cards and gifts for Westy.  But most important, they were simply present with those brave little smiles we were all mastering so well, and love and affection for our boy.  At the end of the evening, one of the fathers came up, looked me right in the eye and said simply, “This was very good.”

 

 

Give yourself time to breathe.  There is no set schedule.

I knew that Bruce would have wanted the kids to have their summer of sailing, so I scheduled his memorial service for the end of August, back in Newburyport.  This worked well for us because it enabled the kids, especially, to return to their normalcy.  We were accomplishing it, once again, and each time we took a step forward with normalcy, I thought of BG and how that is what he would have wanted, especially for Westy and Lindsay. It also gave us time to plan his memorial service.

I had everything I needed to plan the service and prepare the obituary, a hymnal and pounds of letters and cards that people had written with such thoughtfulness and love.  My first thought regarding the notice was that I couldn’t possibly write it.  My second thought was that I couldn’t possibly have someone else write it.  One day after the kids had gone down to the water, I gathered my materials, opened my laptop, separated in my mind the writer from the widow, took a deep breath, and set to work.

We had some wondrous gifts in planning the service.  Annie and Jock, friends who stay down the meadow from us in Maine, sent us the exquisite poem, “Blessing,” by John O’Donohue.  As soon as I read it, I knew exactly where I wanted it in the service, and the kids liked it, too, which was all the confirmation I needed.

There was an inscription on a monument that Westy and I had stumbled upon years ago, when he was just a little boy.  Lindsay was in the backpack with Bruce when Westy and I discovered it hiking a beautiful headland overlooking our favorite island destination.  I recalled that it had something to do with the rhythms of life.  When I mentioned it to our pals Molly and Bill, they offered to retrieve it for me.  They hiked out to the island with a camera and notebook in hand to document it.  It turned out to be a partial inscription of “Crossing the Bar,” the mystery easily solved by Lindsay’s online research.

Those verses by Tennyson, so appropriate for one who loved the sea, became the other anchor of the service.  And Martha, a Quaker, helped me select some passages from her tradition that were perfect to honor Bruce. Another pal reminded me of her favorite Presbyterian hymn, which, in our Unitarian hymnal, is “Immortal Love.”  I loved it, too, and it rounded out the stirring selection of music that I chose in honor of Bruce, always with the Westy and Lindsays’ approval.  All of these gestures, gifts of love and remembrance of BG, helped the children and me in planning the beautiful service that we held in celebration of Bruce’s life at the end of August back in Newburyport, (one day after what would have been our 31st wedding anniversary – there is never a good time for anything like this).

*From the Vineyard Gazette, Martha’s Vineyard, Massachusetts, July 29, 2008

BRUCE FORD, 61, WAS PHYSICS TEACHER, AUTHOR AND SAILOR

Bruce Graham Ford, born in Springfield on Jan. 26, 1947, died July 12 at the Kaplan Family Hospice Home in Danvers of cancer.

He graduated from Westfield State College, earned his master’s degree at Northeastern University, and did advanced graduate work at Boston College. He taught physics for many years in Chelmsford, and more recently in Salem, N.H., where he took on a new challenge of building up the Salem High School physics department.

He was a resident of Newburyport, and spent many summers in Tenants Harbor, Me. He was a member of the First Religious Society, Unitarian Universalist, the American Yacht Club, and the Dalton Club, all of Newburyport, and of the Oldtown Country Club, of Newbury.

A special friend to many and revered by all who knew him, he had a sharp wit and always curious mind. His was a truly wonderful salty nature, and his teachings, seamanship, teamwork and tales brought much joy and laughter, and often. His happy, matter-of-fact outlook will forever inspire those lucky enough to have had his friendship. He encouraged us to appreciate the reality of our situations and take pleasure in present moments. He taught so many so much. People young and old loved his company.

He was always so proud of his family and was a great raconteur. Friends loved to listen to his stories about home, which he told with such love and admiration. An amazing person always admired for his wonderful spirit and humor, he was a fabulous father and husband. Sweet and selfless, he was also known for his inner strength, wit and character. But he was never more brave and noble than when he met the challenge of his life in his final illness, still overseeing family matters from his hospital bed, still trying to be positive and constructive, against all odds.

In his career, he was an inspiring mentor to younger teachers, helpful in so many ways, and his approach to teaching the complexities of physics became a curriculum model. He was also involved in curriculum development, educational publishing, and authored a science textbook, Introducing Science, which emphasized his innovative, interactive approach to teaching.

Parents lauded him for being such an effective teacher, and helping their children grow as students. They would often say how their sons and daughters truly loved learning in his classes.

Over the years, he also made a special effort to encourage girls to remain active in the sciences. Many of his students would go a long way in physics because of him and thanked him for sharing his knowledge of such a difficult subject. Many believed their child’s future brighter because of his teaching. It was said that Bruce achieved icon status as a teacher, and it was well known that students would be wise to get into his courses. As one wrote, “Thanks for giving it your all and always sharing a laugh with the rest of the class . . . for the laughter and good times . . . for being a great teacher and mentor.”

Colleagues also felt fortunate to have worked with him. “When I first started teaching, many older, experienced teachers gave me advice, and shared materials and strategies,” wrote one former colleague. “But there was one teacher who modeled a different approach. You had your own stool in the teacher’s room, and instead of blabbing away about who knows what, you sat and read your newspaper and drank your coffee. When I pressed you for information on what you did with the physics students, you told me, ‘Just ask them a question and see if they can design an experiment to find the answer.’ That very approach, which I hungrily adopted, is the basis for all the curriculum writing, training, DVD lessons, and various other consulting I do now for science education.

You influenced my teaching style early on; you supported my foray into curriculum development, and then helped me get a job at your new school. I’m not sure that you know how much you’ve influenced my life over the years and how much you’ve influenced so many. Thank you for caring in your own, inimitable way, and for taking the time to give good advice and counsel over the years, to so many. Your influence on your family, friends, students, and colleagues can never fail.”

Another wrote: “I especially admire your willingness to challenge administrators. I still picture you striding down the halls of CHS and remember the way you cared for others by distributing retirement information. You made our school a better place for teachers.”

Then there were the precious family summers. When Bruce learned that Maine reminded his Midwestern bride, Wendy, (née Chapin), of the north woods back home, on Lake Michigan, he acquired property there that they enjoyed for many years, on a great pond behind the Camden Hills. As their family grew and required a more active environment, they shifted their down-east base of operations to Tenants Harbor, where Bruce became devoted to the St. George sailing program. He quickly became a regular sight, helping out with the sailing, providing oversight to the young sailors, and steaming around the harbor on his beloved Force 5 — never quite leaving behind “the little boy” in himself, as summer pals were delighted to observe. As long as one young friend can remember, Bruce was a part of summer there, always grilling burgers on Westy’s birthdays, driving kids to the movies, and being out on the water for the races. “It’s all about the kids,” he would say. He loved Maine and was so pleased that his family attached themselves to the simple, healthy pleasures of a coastal Maine summer.

Bruce touched many lives in other ways, as well. A friend of his sister wrote, “I always felt that Martha’s Vineyard really opened up for me the possibility of living in a beautiful place, which I do now, and I have you to thank for that. From the days of my being an awkward, young friend of your little sister, my appreciation for you as the ultimate cool, yet kind, big brother has only grown.”

Bruce discovered the Vineyard as a young man and spent many happy summers sailing, crewing, and, as a sideline, running a business of renting sailboats to summertime vacationers. In the summer of 1976, Bruce was introduced to his future wife, Wendy, who was visiting Edgartown from Michigan. After their marriage the following summer, they settled in Boston, but continued to visit the Island and sailed between Nantucket and the Elizabeth Islands, out of Edgartown, on their sloop Rigel for several summers.

Another colleague wrote, “We shared common prep time and became bagel buddies, and I was treated to even more of the Bruce Ford philosophy, which affected my life in ways that I could not have known at the time. You shared your love of the North Shore. You expounded at length about the incredible things the area has to offer . . . I moved to the North Shore 12 years ago, and never want to leave.”

But most important, Bruce Ford was well known for being a loving and talented father who guided Westy and Lindsay in the best way possible. In his role as husband and father, Bruce left his family a legacy encompassing ideas, goals, attitudes, priorities and values that will remain with his children forever. “He managed to imprint love and values on his children, and they will know the fine man he was,” wrote his aunt. “They will remember and appreciate his love, his wry sense of humor, and his love of family. He was a treasure.”

How many parents can say they have participated in their children’s interests the way you and Wendy have,” wrote mother-in-law Billie Chapin.

So beloved, on so many levels, by so many people, he was everybody’s favorite guy – with always a kind word, a sincere smile and a positive attitude. Family and friends reveled being in the presence of his acute wit and clever sense of humor. “But mainly,” as their uncle Kim Chapin wrote Westy and Lindsay, “we will remember him for the constant love he showed for the two of you, and for your mother.”

So many feel so lucky to have known him. A wonderful gentleman, person, citizen of the world, he brought his family and friends the joy of laughter — even to the end — and with that, he will live on in all of us. As another old friend put it, “We’ll have to practice laughing more — on our own — he was such the instigator. We can still hear his voice and see his wonderful smile and imagine him sailing on. We shall all miss him so.”

The passing of one so loved has us wishing we could reverse time. But the passage of time will allow us to cherish the happy memories and want to think and talk about them frequently. We are thankful for all the memories, which will sustain us as they come flooding in over the years to come.

No more tears because you are gone but smiles of happiness and gratitude for having the time and privilege of knowing you while you  were here.

Survivors include his wife, Wendy, his children, Weston and Lindsay Ford, all of Newburyport, a brother, Dennis Ford, of North Falmouth, and a sister, Nancy Springer, of Croton-on-Hudson, New York. His parents, Mary and Graham Ford, predeceased him.

A memorial service will be held at the First Religious Society, Unitarian Universalist, in Newburyport on August 28 at 2:30 p.m. In lieu of flowers, memorials may be given in Bruce’s honor to Beth Israel Deaconess Medical Center, 330 Brookline avenue, Boston MA 02215, or to St. George Community Sailing Foundation, P.O. Box 435, Tenants Harbor ME 04860.

 

Wisdom will help you through the rough patches.

Wisdom can be elusive, too, but look for it, and listen for it.

To move forward, we sometimes have to turn ourselves around 180 degrees.  The decision to put Bruce’s ashes out to sea came naturally.  To my mind, it was the only option for someone who loved the ocean as much as he did.  But I dreaded that day, and the finality of dealing with the earthly remains. (In fact, I was so apprehensive about the committal that I developed a stutter.)  I thought the event would be dreadful and so did not include some of our closest friends and family.  Dennis and Terri, Bill and Hilly were all with BG at the end, and I didn’t want to put them through any more.

But one afternoon, just days before the ceremony, my friend Alice referred to it as an “event that would be lovely for [my] family.”  That wise sentiment propelled me in a completely different direction.  After speaking with Alice that day, I determined that it would be a “lovely event” for my family, which was how it turned out, indeed. But the days and weeks leading up to it were wrenching. Fortunately, I had help and wisdom.

Months earlier, at the beginning of this darkest hour, when I finally acknowledged that Bruce probably would not be getting better, I spoke with our minister, the Reverend Harold Babcock.  It was a meeting that I knew I had to have, but was afraid to plan for, knowing what a pall it would cast over the days ahead of it.  But one morning, I was on the phone with Vicki, who was in the church office at the time and understood my hesitation.  When she let me know that Harold was there and free, I arranged to come over right then.

“Harold,” I remember saying, “I am in a real pickle.  I don’t know what Bruce wants – we never discussed that sort of thing – and I certainly can’t bring it up now.”  But Harold immediately put me at ease by reminding me who I was.  “You’re his wife – the trust in your decisions is implicit.”

Of course, it made a lot of sense.  It just hadn’t occurred to me as I moved into such challenging territory, being unable to confer with my best friend and partner of more than 30 years.

So, it was that I went ahead with the various, awful decisions that I would have to make in the coming months – but with new found confidence, courtesy of Harold.

On the subject of cremation, I also discussed my concern with Harold about how the children might react.  Again, it was clear and simple.  Harold said that if I were at ease with the decision, they would be, as well.  It was up to me to set the tone.  And it was so.

But I still dreaded it, for its finality.  Once again, though, I was blessed with the care and wisdom of friends.  My friend Kimberley, a professor of comparative religion, is well versed in the traditions of the world’s religions and has studied death and grief.  She was visiting me at home – the place Bruce loved more than any other – when it suddenly dawned on me: “Kimberley!” I announced, “I just have to bring those ashes home.  All he ever wanted was to come home.”

Kimberley knew just what to do.  She offered to help me retrieve the ashes from the funeral home,

(which, to this day, I have difficulty driving past).  But before we left on this sad errand, she asked me some questions.  What flowers were special to Bruce, to us?  What place in our home would be best? Finally, what do the kids want?  When do they want us to bring the ashes home, and where do they think they should go?

I sat the children down for another one of our awful little conferences.  Westy said it didn’t matter to him when we brought them home, and, though Lindsay initially echoed his sentiment, I made sure to let her know that it was OK for her to have her own idea.  She thought for a moment before asking, “How about Thursday?”

So, Thursday, it was.  Days earlier, Vicki had dropped off a box at the funeral home with a lovely sailboat design.  Kimberley picked me up, and the kind undertaker greeted us.  But I couldn’t wait to leave, and I don’t think I heard a single word he said.

 

Kimberley would later describe how tenderly I held the box in my lap on the ride home. When we arrived at the house, we placed it in the front room near some stargazer lilies, the flowers that Bruce courted me with on Martha’s Vineyard, where we had met 32 years earlier.  She also brought a small candle to light in his honor. Kimberley was so thoughtful in helping me design the ritual.  Even the room was a perfect choice.  The kids knew the ashes were there, yet they didn’t have to confront them each time they came downstairs.  But I think we all felt better about them having finally come “home.”

Then, it was just a matter of waiting for the day, which was September 21st, the last full day of summer, and it was a perfect summer’s day.  Even the temperature was gentle and warm, like a final embrace. As we left the yacht club, just down the street from the house, Cathy and Hilly showed up to see us off with a bouquet of flowers from their garden.

From the yacht club, a sweet couple I had never met had offered to take us out to sea.  I didn’t want to ask any of our friends who own boats, so as not to have a fun family craft associated with such a sad errand.  The Barretts could not have been more gracious, refusing any remuneration, even to a favorite charity.  They were welcoming, yet respectful, understanding and generous of spirit.

Once we made it out of the cut, through the mouth of the river, Ron asked whether we should go North or South.  That was an easy decision.  Every day that he possibly could, even when he was sick, Bruce would drive down the road to the center of Plum Island and swim off the beach there.  It was in the direction of those familiar waters I thought we should go.

As we made our way out, leaving the boat traffic behind, we couldn’t help but notice the many sailboats around.  Ron stopped the boat at a place directly out from where Bruce used to swim.  Perhaps that was another homecoming, of sorts. Harold spoke of the rhythms of life and recited some lovely prayers, then offered to place the ashes into the sea for me. He took the box and was preparing to let it go, just as I had a moment of panic.  I had to hold those ashes one last time.

And so I did hold the ashes one last time.  But then, in a split second, I realized that it just didn’t matter. What had happened had happened.  It was unbelievable and heartrending, but it didn’t matter how long I held onto that box, it wouldn’t change things.

So, Harold let the ashes slip into the sea, then read the exquisite poem by John O’Donohue that ended

BG’s memorial service.  The children scattered the Eblings’ flowers over the site, and we all sat back and relaxed for a while before turning back.

Afterward, once home, Lindsay remembered that we had some good, non-alcoholic champagne and asked if we could have it.  Of course, and, to make matters better, I pulled down some good crystal.  We sat in the privacy of our back garden and sipped the wine.  We didn’t say very much.  We didn’t need to, because we understood.  It had been a lovely event for our family, after all, and the warmth and beauty of the day made it feel, somehow, as though BG had had something to do with it.

But, most important, we were together.

 

Innovation can help with the new reality.

Just days after we celebrated BG’s life, the children returned to school.  Lindsay was starting the eighth grade that year, and Westy, his senior year of high school.  It was comforting to have a familiar routine to return to, and I was relieved that the children were at the same schools and no major transitions were required.  The staffs and friends at both schools were well aware of what had happened, and I was grateful for the understanding and kindness.  Lindsay had some wonderful invitations that year from her best friends, and West was embarking on the college application process.

Throughout those first months, despite the kindness and generosity of so many, there were some bittersweet moments.  The writing of Westy’s college essay was a challenge for both of us.  He did the writing, of course, but I was the reviewer. He did a beautiful job gathering his thoughts on the subject of sailing – without his dad.

Then, of course, there are the major holidays, and for those, I would strongly recommend a significant departure from tradition, if at all possible.

 

When Bruce’s family invited us to the Cape for that first Thanksgiving, I immediately envisioned everyone weeping in their mashed potatoes.  I resolved to do something different.  Bruce was a force of nature, larger than life, everyone’s favorite guy.  The void was tremendous.  To my mind, the only thing to do was create an entirely new event to which there could be no easy comparison.  Fortunately, the family understood what I was trying to accomplish.  Plus, I thought of a happy alternative to seeing the cousins by meeting up the day after Thanksgiving, for lunch in Boston, an event that has become a new tradition that we all now look forward to each year.

I researched events going on in Boston on Thanksgiving evening, which I knew would be sparse.  As we all know, such a family-oriented holiday pretty much closes the city down.  But I had to find a compelling event that would distract my two great kids from the sadness we were all trying to suppress.

The chief concierge at the Lenox, a lovely, small hotel in our old neighborhood in Boston, was crucial to the success of my plan.  All I had to do was explain what I was trying to accomplish, and he planned the entire visit.  On Thanksgiving, Westy and Lindsay and I took the train down to Boston and checked into the hotel.  As soon as we entered our room, the kids saw the chocolate display from the Lindt store in the lobby, and the huge basket filled with their favorite fruits and gourmet treats.

After Westy and Lindsay roamed around our old neighborhood taking photographs and I rested a bit, we went down to the hotel’s dining room for a fabulous Thanksgiving dinner. Afterward, they tucked us into a cab headed for the Charles Playhouse and a production of “Shear Madness,” the city’s most beloved comedy caper.  Concierge Keith, our new best friend, had actually spoken to the theater’s staff to let them know who we were.  We had the best seats in the house, and the kids were tickled at the references to Newburyport and the actors making gentle fun of their mom.

The next day, we enjoyed the Ford family cousins and old friends at a long, drawn-out lunch at Stephanie’s.  Then it was back to the hotel for tea for the moms while the kids had fun on Newbury Street with their uncles and cousins.

The re-invention of Thanksgiving was a huge success, thank God.

 

 

Westy Ford

College Essay

September 2008

The ocean has a long history of drawing mariners from every background.  There has always been something appealing about harnessing the elements and being propelled along by an unseen force.  My dad caught the sailing bug young and spent much of his early life cruising the waters around Martha’s Vineyard and Cape Cod.  In addition to him being an expert mariner, he also had a love of teaching and worked as a high school physics teacher for many years. 

Both of these influences from my father have been directly passed down to me.  My father not only taught me to sail, he taught me to love sailing.  I am sure this also has strengthened my love for the outdoors.  I remember several summer days when we would walk down the street to the American Yacht Club and borrow a Laser for a few hours.  It was a tight fit in the 14-foot boat, but we sailed all around the harbor.  I was always learning to control some aspect of the boat, and I remember distinctly how proud I was the day that I could finally sail the boat alone.  Since that time, I have tried to sail as much and as often as possible, both at home in Newburyport and in Maine, in summer.

 Also, like my father, I have always been fond of building and sharing knowledge.  I love to have spontaneous discussions about politics, religion, philosophy, and general aspects of life, and was once referred to as the “little professor” by my mom.  Few things in life are more important than gaining knowledge, and learning is not dependent on a classroom.  New situations, new friends, and new experiences add complexity and knowledge, and all make life more interesting in one way or another.

I believe that there is no such thing as a bad experience. 

Even before my dad passed away this summer, I had begun to carry on his legacy of sailing and teaching.  I have been instructing sailing to kids aged 9-16 for six weeks each summer in Tenants Harbor, Maine, for the last three years. This was the best summer job I could imagine, sharing my love of the sport with the kids, as my dad did with me, and challenging them to understand the concepts of sailing.   I am learning lessons that will be important throughout my life, and I know that my dad was proud to see his son already teaching the next generation of sailors.  Like wind in the sails, he is my unseen force.

 

 

Family is paramount.

In these years alone with the children, I have found myself thinking more than ever about the importance of family.  From the start of our “new reality,” I wanted to make sure that the web of love and support surrounding my children would be stronger than ever.  One of the first decisions I made after July 12th was to arrange to spend Christmas with my brother Kim, Anne and their great sons out in Santa Fe. I thought that being home for Christmas that year would be unbearable. Our Western holiday proved to be an excellent decision.  Santa Fe is so different from New England, almost foreign, with its strong Spanish culture.  Especially festive at Christmas, it was the perfect destination for us. The record snow that year was also excellent for skiing, and the kids had a great time at Taos and Santa Fe with their cousins and other young friends.  It was wonderful to see.

The setting, traditions and people were all different, and the overall distraction certainly helped us through, though one need not travel half way across the country to derive that type of benefit.  I think any change in venue would help.  It’s that tortuous comparison with prior years and long-held traditions that are helpful to avoid, if possible.

One romantic side note about the travel is that I found I could not leave home without packing Bruce’s wedding band.  We live in a safe neighborhood, but I couldn’t bear the thought of being burgled, on the off chance, and that ring being taken. After a few trips, I finally visited my favorite jeweler, Erdem, at Kaya.  He assured me that he could cut the band down to fit me without disrupting the inscription of our wedding day, “BGF – WCF August 27, 1977.”  I asked him to make a pendent for Lindsay with the gold remaining, which I gave it to her on her fourteenth birthday, the first one without Bruce.  Before she even knew it where it had come from, she loved it.  “Oh, Mom, this is really beautiful.”  She doesn’t wear it often, but I know what a treasure it is for her.

 

 

 

Speak of your loved one, and often.

Not long after July 12th, I came to realize that the children rarely spoke of their father, which did not surprise me.  Old adages so often apply, and still waters do run deep. So I resolved to speak of him.  It would be difficult to imagine someone so vibrant and strong, with such an amazing zest for life ever being forgotten.  But to keep his memory alive, I speak of Bruce often and in a way that reminds the kids of his sense of fun, his intelligence, and his love of life and learning.  And his devotion to them is the thread that runs through all of my reminiscences.  I’ll admit that this wasn’t easy at first.  Just to speak of him in the past tense was a challenge, at first.  But, like so much else in this awful but necessary process of putting one foot in front of the other, there is a first time for everything.  In some ways, it does get easier, and –  more and more – the happy memories feel a bit like being in the company of a beloved and precious old friend.

 

 

 

Strive for smooth sailing.

After my father passed away years ago, I found that if things were going smoothly, I would be fine.  I could buck up and hew to my routine, which was a comfort, in itself.  However, when that delicate balance was upturned in the slightest, emotions could take over.

So much of happiness and satisfaction in life is related to expectations.  That is not to suggest lowering expectations, but rather taking care with assumptions.  A few simple suggestions:

  • Make sure you know whom to trust;
  • Know who your true friends are; and
  • Never assume that people who haven’t experienced such a loss understand what is good for you and your family.

In other words, people aren’t always kind to widows and orphans.  It may not be intentional, but it is breathtaking. A couple of people I had actually once thought of as friends have turned surprisingly distant.  Perhaps it’s hard for people because we remind them so much of Bruce.  Or maybe it’s just thoughtlessness.  Who can understand such motivation?  Any way you view it, it’s fairly incomprehensible. I don’t expect the world to bow before me. All I hope for is basic kindness. One can never know until one has gone through it. But losing one’s life partner must be one of the worst experiences of loss, in life. But we must keep moving forward.

What I do know is that life is short, and I center mine on my children, my family, and the many steadfast friends whom we have been able to count on, indeed, and who – I am certain – will be with us for the long term.

Another breathtaking fact:  people will take advantage of widows, a sorry phenomenon that I can attest to having happened on more than one occasion.  From workmen to car mechanics, be sure to get multiple recommendations, estimates and project orders in writing.  It keeps people on their toes and may save you a lot of trouble, perhaps even taking an unethical contractor to court!

 

 

Fear not the memories; you will smile again.

Three years and four months after we lost BG, Thanksgiving 2011, the children and I were invited to visit old friends on the South Shore of Boston on our way back from a family gathering on Cape Cod. These friends dated back to our Boston days and actually knew BG before I did.  Two of them were in our wedding, in Michigan, in 1977.  Because we only maintained contact from a distance – there is a big difference between the north and south shore – Westy and Lindsay were only vaguely acquainted with these old pals of ours.

After we arrived, the introductions had been made, and we settled in, the stories began.  Bruce Ford was a very funny, quick-witted guy, and there was a lot to tell.  There were some stories that even I hadn’t heard!  But I had some trepidation at the start. I was afraid that it might be too much for Westy and Lindsay to reminisce about their wonderful dad this way, that it might make them sad, make them long for him all over again.  I looked carefully for any signs of sadness, and what I saw instead were smiles. Smiles without tears.  The kids – and I – and the storytellers, themselves, were all thoroughly enjoying the memories.

Whew! So there it was: another hurdle surmounted, another pass to get along with our lives, lovingly carrying the best from the past, just as BG would have wanted, bless his magnificent, generous, unforgettable soul.

Hope is in reach.  Watch for it, and listen for it.

The revered minister emeritus of our church, the First Religious Society, Unitarian Universalist, the Reverend Bert Steeves, delivered a sermon on Easter Sunday, 2011, that resonated greatly for me.  Two years and nine months after I lost BG, a window seemed to open – you know, those windows that our mothers told us about, after the big doors shut tight.  With Bert’s kind permission, I have excerpted portions of his important sermon.

The great values of love, wisdom, and devotion, the riches of human personality, do not come into being simply to vanish into nothing, but are somehow perpetuated in the universe which has called them into being…

Others, equally sensitive and intelligent agree with Lucretius, that ‘Lives are mortal, life is immortal.’  They feel that we as individuals may not be immortal, but we find our continued existence in our children, and in the influence we exert in shaping the character of the common life of which our lives are a part and which will continue to exist long centuries after we are gone…

Easter’s immortality message for a Unitarian Universalist may be quite different from Easter’s message for a conventional believer, but it need not be any less a stalwart affirmation – that the hope of human dignity, of love and of a better life for all cannot be destroyed, but is forever reborn in human souls and minds…

In death, there is unfairness, despair, and senseless tragedy, but also, rising through it all, the courage, the hope, the goodness, the conquest of the nightmare, and finally the indomitable will to carry on.  In brief, it is all there in this eternal struggle of life and hope with death and despair…

Easter proclaims that though humans and nature do their worst, there is one faith that must be perpetually reaffirmed – the divine in the human…which is possible for all of us, if we but live up to the possibilities…the flaming spirit, undismayed by the final disaster.

Why, yes, of course.  How else, then, could it be that BG, in his final days, had people laughing, that he continued to take vitamins in hospice, and, finally and most exquisitely – for me – that he was able to raise himself up for one final kiss goodbye when I wasn’t even sure if he knew who I was?

I left church that day with an unexpected sense of hopefulness that the light will shine again for those of us left in BG’s wake, and a strengthened sense that the legacy of my wonderful husband and friend would live on, indeed, in all of his good works and memories of laughter and a life well lived, but most of all, in our magnificent children.  Westy and Lindsay are such incredible young people who have already endured so much with such grace, and, though I still pray for them every night, I must have hope that they will continue to thrive and be held in the light, as my Quaker friends say.  After all, my final promise to Bruce was that we would get through this, because there was so much love around us.

Epilogue

Time is a great healer, as one adapts to the new reality by falling, naturally, into new rhythms.  But in some ways, it is actually harder to accept.  The more distance between the present and the “event,” the more entrenched and definitive it becomes.  But the children keep me going.  I have to be at the top of my game for them.  That is my mission, the reason I’m here.  It is what I want to do and what I must do. It is also what BG would have expected of me, so it must be in honor of him, as well.

As I told the kids that awful day, we are in this together.

You start by putting one foot in front of the other, and at some point, you realize that you’re dealing with it, and at some further point, you realize that you’ve made peace with it.

Westy and Lindsay are truly amazing.  Throughout their father’s illness and beyond, they have never wavered in their self-possession, kindness, or understanding.  They never changed from the fine young people that they were.  Their academics never suffered, and, in fact, they are both doing especially well in that regard.  BG would be so proud.  I’ve often commented on their stoicism.  They never complain, there is no self-pity.  I only hope they’re doing as well as they appear, because they are so stoic that it could be hard to tell.

But if the kids are doing well, then I’m doing well, and the kids are doing great.

 

* * * * *

 

 

 My Hopes for Normalcy

It is my great hope that cancer patients and family members – or anyone dealing with a devastating diagnosis – will be able to avail themselves of this document free of charge, and that it somehow helps. To that end, I am offering it as a free download, under a Creative Commons license.

But I also hope that our experience might inspire readers who are so moved to make contributions to Dr. Rebecca Miksad’s medical research fund for her study of liver cancer and cholangocarcinoma, the form of cancer that affected Bruce. Dr. Miksad must be one of the most talented, intelligent, dedicated and compassionate physicians that I shall ever know.

* * * * *

The CureLiverCancers team at Beth Israel Deaconess Medical Center (BIDMC) is dedicated to curing all types of liver cancers, including cholangiocarcinoma, gallbladder cancer and hepatocellular cancer. Our multidisciplinary clinical team provides comprehensive care for all aspects of liver cancer care, from screening to transplant and specialized liver procedures to chemotherapy and palliative care. Our collaborative research team brings together the best in basic science, clinical trials and state-of-the-art health services research to achieve our goal of improving outcomes for patients with liver cancers.

 

To make a donation to BIDMC’s CureLiverCancers team, please click here: www.gratefulnation.org/CureLiverCancers

Or, if you prefer to make your donation by check, please make check payable to “BIDMC” and note CureLiverCancers on the memo line.  Send to:

BIDMC

Office of Development

330 Brookline Avenue BR

Boston  MA  02215

 

 

Blessing

by

John ‘Donohue

 

On that day when the weight deadens on your shoulders

And you stumble,

May the clay dance to balance you.

 

And when your eyes freeze behind the grey window

And the ghost of loss gets into you,

May a flock of colors, indigo, red, green and azure blue Come to awaken in you A meadow of delight.

 

And when the canvas grays in the carrack of thought

And a stain of ocean blackens beneath you,

May there come across the waters a path of yellow moonlight To bring you safely home.

 

May the nourishment of the earth be yours;

May the clarity of light be yours;

May the protection of the ancestors be yours;

And so,

May a slow wind

Work words of love around you, An invisible cloak to mind your life.

 

 

(A carrack is a merchant ship from the 14th century.)

 

 

 

 

Dedication

This document is dedicated to my husband Bruce’s many wonderful caregivers at Beth Israel

Deaconess Medical Center, Boston, led by Dr. Michael Curry, of BI’s Liver Center, and Dr. Rebecca

Miksad, Bruce’s oncologist at BI’s Shapiro Center; his several incomparable nurses at BIDMC, led by Ann Brady, at Shapiro, and Emily Spotts of BI’s Medical Intensive Care Unit; the precious Monday volunteers at the Shapiro Center’s Hematology/Oncology Clinic; and the many kind people who took care of him at the Kaplan Family Hospice Home, in Danvers, Massachusetts.

For more information on hospice care, here is a link, below, that may be helpful, courtesy of Wikipedia. http://en.wikipedia.org/wiki/Hospice_care_in_the_United_States#External_links

Text is available under the Creative Commons Attribution-ShareAlike License; additional terms may apply. See Terms of use for details. Wikipedia® is a registered trademark of the Wikimedia Foundation, Inc., a non-profit organization.

Miscellaneous Tips that May Help

Sleep habits.  A bit of advice that I recall reading years ago, is to sleep on your spouse’s side of the bed. If you’re there, you won’t be reaching for there.  I also sleep with extra pillows, which I find surprisingly comforting.

Wellness.  It should go without saying, but it is important to stay healthy and keep yourself fed.  I lost nine pounds that year, simply because I was so busy with arrangements, phone calls, correspondence. I wanted everything to be done, so that I could put it behind me and move on with life as normal, and I often forgot to eat:  not a good idea.

Exercise and Breathing.  More along the lines of wellness, but exercise also provides distraction.  I also have found the deep-breathing aspect of qi gong, an ancient Chinese practice, to be immediately beneficial.  The writings and practices of the Buddhist monk, Thich Nhat Hanh, have also helped me. (These resources may be found in the public domain and are easily self-taught.)

Food prep.  I still cook and bake as though I’m preparing for a family of four. I still make all the kids’ favorite things.  I simply freeze the overage, which is actually quite helpful.  (Frozen toll-house cookies are pretty good, we’ve discovered!)

Security.  As a newly single mom, I immediately upgraded the security system for our home. It has given me immense peace of mind.

Clothing. BG had a wonderful, rumpled professor approach to sartorial considerations, but he always “cleaned up nice” when the occasion prompted, so he had some good things, too.  One day after the kids were at school, I called a consignment shop to come to the house, and they took almost everything. It was just too heartrending to keep bumping into his stuff, and I also thought it would be tough on the kids.  However, I did save his ties, and I sometimes wear his old barn coat, which feels really nice. (BG and Westy were not the same size, except for some good sweaters that I saved.  As for the things he had in hospice, I offered them to Ouzeman, and was so glad that he accepted them.)

Correspondence.  I actually enjoy writing thank-you notes but was told that it wasn’t necessary at that time, that no one expected me to do so, with all that was going on.  I did write some notes but wish that I had written more.  So many, from closest friends and family, to people we hardly knew, did so much to help.  So, each to his own, and anything goes.  But I do wish that I had done more.

Projects/Work.  If possible, it helps to stay busy and to have goals, even modest ones.  Small steps forward are still steps forward, and one day, life will again start to approach normalcy.

Writing.  I had thought I understood the concept of catharsis.  But I never understood how it worked until I wrote this book.  I finally reached a point at which I realized that I would very much like to be done with the business of death and dying.  If we delve deeply enough, we reach a point at which we realize that we can do no more good there, that we have paid tribute – enough, perhaps, for the time being – that this world of ours does audaciously keep spinning, indeed, and also that life goes on and that we need to be part of it.

Parting Thoughts on Grief

Grief is like the wake behind a boat.  It starts out as a huge wave that follows close behind you and is big enough to swamp you if you suddenly stop moving forward.  But if you can keep moving, the big wake will dissipate.  After a long enough time, the waters of your life will be calm again.  That is when the memories of those who have left will begin to shine as bright and enduring as the stars above…

– J. Buffett

 

About the Author

Wendy Chapin Ford survived and triumphed over a rare and deadly neurological disorder that struck from out of nowhere, leaving her comatose and then quadriplegic. Initially, at one of the most renowned hospitals in the world, Beth Israel Deaconess Medical Center, one of the great Harvard teaching hospitals in Boston, she was not expected to survive, nor subsequently, to ever walk again. But she was desperate “to get back home” to her family and young children.  Her acclaimed and award-winning first book, To Get Back Home — A Mysterious Disease: A Fight for Life, (iUniverse, 2010), recounts her harrowing odyssey.

A graduate of the University of Michigan, she worked as a corporate financial writer for many years in

Boston. She has served on the Board of Overseers, Beth Israel Deaconess Medical Center, the Spaulding Rehabilitation Hospital Visiting Committee, both in Boston, and the Board of the Newburyport Maritime Society. She lives in Massachusetts with her family.  Normalcy is her second book.

 

 

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