Creativity, consciousness and healing

Enfolded in the arms of your beloved you are never alone. 

Susan caresses Martijn on Tuesday, July 7, 2008.

Supported by Sebastian.

We both requested that Sebastian return (please see blog entry June 1st) to share his quiet magic and majesty. He dreamt this ritual for us while sleeping in the next bedroom the previous evening, and Martijn embraced and wholeheartedly invited enacting the concept. 

"It is better to light just one little candle than to stumble in the dark."

Transforming the porcelain washbasin to a vessel of light and reflection.

Martijn and I have lived a life of modest creativity. We continue to find strength in the creative radiance of those dear individuals who inhabit our circle of life and love. Here is a poem written for us by our dear friend, Sally Eves, who lives in the mountains of Pennsylvania with her furry creatures:

Friends

Can you hear us croon to you

in the stillness of the night?

We sing a song in praise of you

to bring you love and light.

Our voices join in melody

with creatures of the night.

The swamp frogs croak

a rhythmic bass

a cacophony our sound;

the owl hoot hoots

it unblinking eyes surveying

sky to ground;

the bat's shrill screech is softened by

the swooshing of its wings, 

the cadence of the crickets tolls

the blessing of all things;

the cat's stealthy silence adds

a pause to all the sounds,

and brings a welcome stillness to the

mystery around;

the fireflies dance in points of light

to the movement of the sound,

and beckon the stars and sultry moon

nearer to the ground.

Do you hear us croon to you

a majestic band of the night?

But nothing to compare to you - 

your royalty and light.

- Sally L. Eves

June 30, 2008

Another friend, Maureen Youngstrom, who lived next door to us in Cottagewood, a village in Deephaven, Minnesota where Martijn enjoyed the first five years of our relationship, wrote this to us today, echoing the line in Sally's poem referring to 'swamp frogs':

Dearest Susan and Martijn,

Like most of your friends and family I have been checking your blog on a regular basis to see how things are progressing for the two of you both physically and emotionally. I am so impressed and inspired by the wonderful insight and grace that you both bring to this excruciatingly difficult process. At the same time I am profoundly sad at the reality of what is happening.

I need to tell you both at the thoughts I had about you on my long and now regular walks. (I am going to Africa to climb Mt Kilimanjaro in two weeks so I'm training for that. But more about that another time). To come right to point I think of you and Martijn almost constantly when I am out walking. In the beginning I thought it was just because my walks were starting out going by your old house and because I think a big part of Martijn's identity for me is that of the 'thoughtful Cottagewood walker'. Now I've come to realize there's more to it than that. I almost always end my walk with a stop at Hidden Beach where I am usually alone. It is here that I feel a kinship with the part of both your spirits that are still here. Also, I have been receiving another sign of your spirits. I have to preface this part of the story by relaying the fact that, until recently, I had seen maybe three or four frogs in the ten years I've lived here. This being said I have seen a frog on an almost daily basis for the last couple of weeks. Usually this sighting takes place on the last leg of my walk between hidden beach and home. Yesterday, it was a pair who instead of bolting into the bushes, hoped ahead of me for several yards before they took their own path. In a way I can't really articulate this gave me an incredibly peaceful and content feeling. I only hope in the extreme intensity of your lives right now that you find moments, however fleeting, of profound peace. This is my prayer for you both each day.

My thoughts and prayers are with you through your journey

Love - Maureen

Just so you know Martijn cannot use the computer anymore but I do print emails and share all of your comments with  him for which is so grateful and filled with love. We are so supported and only wish that we could do the same back for each and every one of you. But, in fact, we do, each night when we say our prayers and hold you in our collective heart. 

Anointing of the Sick: Father Carel Cares for Martijn

At Martijn's request, Father Carel van Tulder, our beloved retired Jesuit priest who was referred to us by the cancer support organization, the Toon Herman's Huis, came on Monday, June 16th, the day after Pia's lovely concert for Martijn, to offer the catholic sacrement, Anointing of the Sick. Here Father Carel prepares the candles.

Father Carel offers a welcome and explanation.

He dons a very special stola made for him from African material. 

Father Carel anoints Martijn in our home.

The anointing of the sick is administered to bring spiritual and even physical strength during an illness, especially near the time of death. It is most likely one of the last sacraments one will receive. A sacrament is an outward sign to confer inward grace. In more basic terms, it is a rite that is performed to convey God’s grace to the recipient, through the power of the Holy Spirit. 

It has been over a week since Martijn has been able to walk down the steps to sit in our living room. It has been a difficult two weeks for me seeing Martijn less mobile and much weaker. Yet, he still is comfortable. He takes only 10mg of OxyContin twice a day, along with an injection of Fraxiprine daily (administered by a home nurse) to combat the effects of thrombosis. Up until yesterday he was able to walk from our bed to the master bathroom to empty his own catheter bag and brush his teeth - but yesterday he asked that I help with these tasks.

Each morning I prepare a healthy breakfast to bring Martijn: a small juice glass of Kanne Bread drink which I'm sure keeps his intestines well functioning; a brimming pot of Earl Grey or English Breakfast tea, fresh brewed; and a fruit smoothie I prepare with soy milk, light yogurt, Barbara's oat cereal, some oatmeal, and fresh fruits, usually seven types. Two mornings a week a home care nurse comes to wash him; the other days I help, including constant changing of the bandage he must wear over the tumor that has aggressively grown external in his left groin. This tumor leaks lymph fluid and must be 'dry dressed'; horribly, another is now appearing in his right groin. Along with these newly aggressive growths and the thrombosis, the lymph has been collecting in his legs which is why he is unable to walk. Dr. Bom has allowed that the lymph therapist begin again - a positive event since this lymph massage brings much relief to Martijn, reducing the swelling greatly.

For me this has been a very strange yet moving period. I think I am at a new level of acceptance but this has come with much psychological, emotional and physical work. My therapist Alied has  been a rock in helping me process the terrible physical changes I must witness in Martijn. He is literally flesh and bone. But, my 'work' has also allowed me to come to new understanding of our human bodies and souls. Martijn is still my beloved husband and I've come to love and appreciate his body despite its woes. His spirit is so much greater than the poor flesh and bones we tend to think of as 'life'. Today I say this seemingly easily, but the journey to his place, as I have said, has been hard won with much tears and angst.

During this period I took bold personal steps. With the loving assistance of my brother-in-law, Janus, I had a 'free' weekend. He came to care for his brother. The first evening, Friday, June 27th, I took Maurice Schoffelen for a thank you dinner and movie, then I stayed alone at Ursula's apartment while she was away. This was a night that felt like I'd descended to hell. I felt ill, really sick, and so terribly lonely. To get through the night I called Sally Eves in Pennsylvania and as always, she talked me through the worst of it. The following day I spent a wonderful time with Casey O'Dell at the local museum. Casey is like a daughter to me and her empathy and understanding were salve. Later, Claudia Vaz who lives across the hall from us, made a wonderful dinner and Johanna Martinez joined for good conversation and food. Sunday Ursula took me to Thermae 2000, a full spa with multiple pools, whirlpools, saunas and steam rooms. Because Martijn and I so loved being together at Thermae this experience was also bittersweet, but I knew that this weekend off was healing for me as well. And Martijn seemed to bask in the care and attention of his brother and family.

Martijn and I continue to care for each other during this intense journey. I put double meaning on the word, 'care'. In his own powerful way Martijn seeks to protect me from stress and worry. And so we walk together toward this light, this dark light that is our life.

Concert for Martijn

Diva Pia Brand performs a special father's day concert for Martijn at our home. When Pia learned of our situation she offered two things: to sing a special concert to boost Martijn's spirits at our home, and to sing a very special song at his memorial service to hasten his spirit to the other realm. Last Sunday, Father's Day, June 15, 2008, she made good on the first offer. Please join us to see how much Martijn enjoyed his private diva.

Metal Tiger, Water Dragon

Metal Tiger, Water Dragon

I am a Metal Tiger* conceived in passion -

Consumed by it.

You are the Water Dragon** bathed in patience -

Absolved by it.

I pounce, prance and dance.

You coil, roil and boil.

My expression bursts -

Your reflection pools.

My big cat craves approval.

Your mythic reptile shuns it.

How, now, do we blend?

Our courage matches tooth and claw,

Our generosity fills mouth and maw.

Great Dragon fear not

that your fire ignites me.

As your flames now subside

I crave, still, your heat inside.

Come, bring me your scales,

your great tail,

your fearsome mane,

and rest forever in my softer plane. 

My stripes will hide you,

my hide protect you,

my fur soften your journey,

my sharp eye and vast heart 

absorb your winged magnificence.

Until myths and legends lapse,

they will know us wherever

east meets west, yin nestles yang,

and they will understand at last 

that fate our fortunes cast.

*1950, **1952

©2008 MuseRiverProductions

Tiger Susan Schaefer for 

Dragon Martijn Hermse

10 June 2008

Transfusion

Wheels in motion. Courtesy of Dr. Bom, Martijn is transported to our hospital, azM, for a blood transfusion on Thursday, June 5th. The sudden decision came after a look at his low hemoglobin.

Fill 'er Up! The transfusion took almost 6 hours. The hoped for outcome is renewed energy. Martijn's life quality has declined precipitously since the thrombosis occurred on May 17th. He can no longer walk. He is much much weaker overall. Because he doesn't choose to ramp up his pain medicine, totally his own choice, his discomfort is obvious. It is so understandable that he doesn't wish to lose any more 'control' which he thinks will happen with increased pain medication. Yet, his trusted advisors tell him that the new pain 'patches' administer low enough doses so that he can control, to an extent, the result. 

We have been blessed by a rally of care. Thanks to Alied [Aah-LEET], my therapist, I got the courage to ask for more help from our circle here. Now, we have dinner brought almost every night by a cadre of dear friends. Monday night Audrey Sondijker, our dear friend and neighbor comes; Tuesday, Alied or Finny (another neighbor and Toon Hermans Huis volunteer) bring food prepared by Alex the chef of Toon Hermans house; Wednesday has been dinner and a movie with our dear Maurice Schoffelen for a while now; Thusday, Ursula has plied her skills and Martijn loves her German potato salad; Friday Casey and Jerome will be food angels.Geri and Marcel have been coming with dinner every Sunday.  

Ingrid Regout has offered to come on request if she is available, and Martijn's brother Janus and sister, Elly, are trying to alternate Tuesdays. 

For me, some very old high school friends have appeared via internet bringing strong and comforting connections that only such deep history with one another can provide. Most especially from my good buddy, Deb Cohen-Mersky, whose beloved husband, Marty, died suddenly last year. Many of my beloved friends from Philadelphia High School for Girls, aka, Girls High, have been keeping in touch with me since I had to cancel attending our class 40th reunion last year. Through Deb's contact and connection a new meaning to our shared history has emerged. 

To all my/our angels, near and far, old and new, we extend gratitude that simply doesn't translate well on these pages. But please know and accept that we feel, truly feel, the outpouring of love and support from you. As Martijn continues to say, "I do not feel alone on this journey." We, neither of us, feel alone. This is what is meant by connection. Thank you. Heartfelt thank you.

13 years ago today

A quiet cuddle to celebrate our 13th year anniversary of meeting after the many visits of the past days. This is how we used to fall asleep every night - tell me, what could replace this?

Today we met Helena and knew what divinity means. Dear friend, artist and magus, Sebastian Holzhuber, brought along his muse, to help us celebrate our 13th year anniversary of meeting. Martijn was one of Sebastian's earliest models for his unique tribal art works. He brought Martijn a book of his collected works including the 'banquet series' where Martijn first posed.  Sebastian conducts rituals to help individuals make transitions through art and creativity.  

Yvonne, Dorothé , Fulco, and Aad flank Martijn. These friends go back 30 years to when Martijn was a member of the Pax Christie walking group. Last year Aad and Martijn helped to arrange a 30 year anniversary for their group and were astounded and pleased when everyone showed up!

Martijn and I met at his apartment in the Eastern Haborlands of Amsterdam 13 years ago today on June 1st. It's a wonderful story of coincidence and irony that forged a bond that's not been broken since that day. An important link in our chain is the Chizek/Frederick families of Iowa. Rob Chizek was my best friend during this time of my life and through me he ended up staying with Martijn. When I arrived in Amsterdam Rob and I stayed at Martijn's flat. The very first week I was there Rob's sister Nancy Frederick, husband David and then teenage children, Tanna and Nate, arrived for their first trip ever to Europe. We held a two-day party at Martijn's. Nancy wrote to us this evening. Here is her account of those days:

Dear Suze and Martijn,

Suzie, your poem was absolutely beautiful! Thank you for sharing it.

I have been wanting to write both of you for some time to tell you how much you are in my thoughts and in my heart. I love your blog site........it is so wonderful for me to know what is happening in your lives and all of your thoughts and feelings as you pass through these transitions. Again, I thank you for being so generous as to share yourselves with me.

Though our paths have crossed only occasionally in the last few years, I still think about the memories I have with the two of you and I will embrace those forever.

Martijn, I still think about how kind and warm you were to open up your home and your heart to David, Tanna, Nathaniel and I when we came to Amsterdam! I remember you greeting us at the door of your "flat" in Amsterdam and giving us those wonderful, cozy slippers to wear...I felt so nurtured and welcome. And how you provided a wonderful party for us and we drank every bottle of wine you owned and had a marvelous time! I remember eating the herring and you showing us how to let them slide down our throats and them follow them with a bit of spirits. And I remember how you graciously escorted us on the bus back to our hotel at 5 am because you were concerned we wouldn't be able to find our way back on our own.......which was very true. And I will never forget how your little Suzie frog looked at you that night at the party and exclaimed, "You look like someone I could have really gone for in the 60's!" (or something to that effect). Anyway, that seemed to be the beginning of your beautiful relationship...it was wonderful to be a part of that. Thank you.

Something else that I wanted to tell you Martijn is that I don't think in my 57 years of life that I have met a person as warm and caring and gentle as you....you epitomize what Abraham Maslow would describe as "self-actualized". I have always wanted to be able to honor someone with that term of "self-actualization" and now I can. Of course you are also very humble so will not accept the title......but to me the title is yours. I thank you for sharing your beautiful mind and spirit with me and all of my family over the years, Martijn...how very fortunate for us to have had you in our lives!

May this precious time that you and Suzie are sharing be filled with the splendor of life and the tenderness of love!

Please take care.

Much love and admiration,

Nancy

Nancy, thank you for the best anniversary gift of all. 

Flash back

Susan in a real "Poodle Dress" with father, Jack B. and mother, Emma, 1953.

I wrote the following poem for my beloved father Jack as he lay dying in a hospital across from a lovely lake in Sanford, Florida. Dad died a courageous and graceful death from prostrate cancer. Like Martijn he kept his wits and humor about him until the very end. I think my love for Martijn stems in many respects from my love for my father who wanted to protect me from anything harmful. I hope you like my poem:

One Light

slowly slipping from me
your spark
that seminal flame
that lit me into being
and lights me still
is flickering
fading
slowly
your silver sheen pales

yet
I shine for you
in crystal tears
of parting
in golden comfort
of knowing
you’ll glow hereafter
you’ll glimmer
here
in me
father

©1982 Susan Schaefer, Ride the New Morning: Collected Poems

Care Giving: Perspectives

Martijn rests on Thursday in his study on his day bed 

reading "Night Train to Lisbon".

Nurse Ans wraps to contain the thrombosis

His
It was a horrific week for Martijn. It began on Saturday, May 17th when his right leg swelled painfully to twice its size. This swelling was different than that associated with the lymph symptoms, so we called Dr. Bom that evening. He responded quickly assessing the situation as thrombosis and calling a specialist with the symptoms and medical history to confirm his suspicions. Normally a patient would go to hospital for tests, but given Martijn’s condition everyone agreed to proceed. Dr. Bom ordered injections of blood thinner, which he administered that evening, and wrapping material used to treat thrombosis. The next day our old home care team from ‘Green Cross’ began their work with us as they had post operatively last fall. Nurse Ans arrived Sunday to wrap carefully Martijn’s affected leg and continue with the injections. Monday one nurse bathed him while another team checked the wrapping and yet another came for the now nightly injections. But other complications surfaced: constipation and urination problems. Dr. Bom ordered stool softeners for the former and what is called a condom catheter for the latter. But by Thursday Martijn’s abdomen was painfully distended in spite of the fact that the thrombosis swelling in his leg was decreasing. Thursday evening I asked Dr. Bom to come to check his abdomen – his renewed assessment was bladder blockage. Again the night pharmacy delivered and after a ‘real’ catheterization Martijn began to flow again. What a difference – by Friday his bladder was functioning as well as his bowels. Appetite returned. His color and energy returned. And for the time being we feel that he has stabilized. During this time of distress Martijn kept his constant centered disposition, but the episode has taken a great toll on his energy.

Mine
And on mine. During this latest period the cumulative care giving has taken a toll on my energy. I have managed, up until now, to regroup after previous roller coaster effects, but not this time. Even with my brother-in-law, Janus, agreeing to come to administer to Martijn all day this past Wednesday so that I could attend a mixed business and pleasure team-building outing with my Knowledge Management colleagues from ECDPM, I have slipped a notch. Thursday I met with Alied van der Aa, my therapist, and we agreed that I would begin a more formal and rigorous attempt to schedule extra help for me. While Green Cross takes good medical care of Martijn, I still must be here to change his wound bandages twice a day (the tumor in his groin that is external), empty his catheter bag regularly, make and serve breakfast, lunch and dinner every day, put on and take off his clothing twice a day, and direct the various nurses on where to find what. On top of this, since we have no Dutch benefits, I have tried to continue to work, although mostly from home. Nevertheless, you can imagine the stress and strain to focus. Hopefully, this week I will work with Alied to turn the tide. Brother-in-law, Janus and my sister-in-law, Elly, will rotate taking one full day a week to be here with their brother. My mother-in-law already comes on Sundays brining home cooking. Maurice Schoffelen has been coming on Wednesday evenings regularly. Now I will try to find others to cook at least five days a week, taking at least that pressure off of me.

Physical pressure is only a part of it, though. It feels as if I’ve been a social outcast for a very long time now. I, who typically am so socially inclined, have been incredibly isolated for almost 16 months. It may seem we’ve had many guests but please don’t confuse this with leading a happy, balanced social life. I hardly visit outside the house and when I do I mostly want to return to be with Martijn. It is impossible to feel good about outside events when my heart is breaking. Which is the other part of this ordeal – how very sad it is to see your beloved in pain and literally breaking down on a daily basis. This sense of loss is palpable. The good news is that I’m very aware of my grief and mourning – not stuffing feelings or hiding from the pain. Nor am I wallowing in it. I know and recognize the loss I’m suffering for just what it is – a monumental loss. My life as we lived it is gone, and has been so for over a year.

Ours
And, the life we anticipated is gone as well. No retirement together living in this soft green landscape and traveling the world. No leisure time with family and friends, watching each other grow old. No more quiet evenings just hanging out, ribbiting and croaking for joy. No more back scratches or walks along the River Meuse.

What is here now, though, is an existence that is as sweet as it is bitter, maybe sweeter than that.

I have been given a rare gift, to spend Martijn’s final days together, hopefully providing him what he wants and needs. I have the fortunate circumstances where I can be with my sweet philosopher frog in our own home, in his own hometown, surrounded by his loving family with his longest-term friends nearby. We have loving and caring friends, my angels, who fly in from here and there, in person and virtually, to care for both of us as best they can. Thanks to the Toon Hermans Huis, we have learned of many resources available to us including finding Dr. Bom, Alied and others. And, although I am scraping the bottom of my savings, at least my years of work have allowed me to put away for a rainy day. So, in spite of the fact that we have absolutely no benefits from the Dutch government, we still have lovely home and can afford the medical insurance that provides for us in this time of dire need. And, as long as I can continue, I have work.

It still remains impossible to conceive that Martijn will not walk among us. His strength of spirit and his ongoing physical prowess in the face of so much deterioration speaks volumes about the care he took of his body, mind and spirit before this cancer felled him. Nothing will replace the love, gentleness, the spark that our relationship brings me – but I will always know we walked completely together in sickness and health, in joy and sadness, ‘til death do us part.

Complications

Standing strong together, Mother's Day, May 11, 2008 in our home.

Martijn reads in our outer courtyard on Monday, May 5th.

Yesterday, May 17th,  Martijn suffered a ‘setback’ in his well being. He has developed a painful thrombosis – an anticipated side effect of his increasing immobility. We had an emergency visit by our lovely doctor, Dr. Bom, last night. Martijn will now be receiving injections to thin his blood and have his leg wrapped. This will decrease his mobility but hopefully this will only be a temporary setback with the proper treatment and rest.

Philadelphia Brigade Brightens My Grief

Sisters Kate & Alex Tasch arrive in Maastricht on Friday, May 9, 2008, bringing their special brand of comfort, care and fun!

Busted? No. Great friend Maurice Schoffelen isn't locking the girls up, but merely offering his back of the van transport as Alex and Kate head to our friend Jacqueline Braun's bed & breakfast located a tad too far for walking from our home in Centre Ceramique. We've decided it is best for our guests not to stay with us at this time to preserve the most peace and quiet for Martijn and me.

On Saturday, May 10th, Martijn accepted an invitation to spend a few hours at his mother's cabin located 20 minutes away in Lanaken, Belgium by car. Maurice thought it would be nice to show K&A nearby Valkenburg, Limberg's equivalent of New Jersey's Wildwood. Very touristy. We walked the town, viewed the ruins, rode the ski lift to the tower on the hill and ate fattening 'biter balen" the local answer to Philly cheesesteaks. Heavy on calories and taste!

Alex, Maurice and Kate pick up sticks on a short hike through Valkenburg's woods. Total twiggies.

When Kate and Alex wrote that they would like to visit Martijn and me I felt overwhelmed with gratitude. You see, the Tasch family was my first 'official' adopted family. Their father, Peter, became my first 'real' employer in 1969, when, as a work-study student at Temple University I became the Office Administrator for the scholarly journal, The Scriblerian, which Peter edited and managed with two other colleagues. I worked for Peter for three years, during which time his wife, Alison, who also taught in Temple's English department where I was a student, and their three children, Jeremy, Kate and Alex, became my first 'family' of choice. It is a relationship I've maintained and cherished over the past 40 years. In fact, when I ran my Philadelphia Public Relations Firm, Ingram & Picker, Alex became one of our first intern's, making the cycle full.

Their visit opened a window of my soul letting some light into the darkness that currently dwells there. My grief of late has lodged deep and wide. Even as Martijn proves his mettle by his heroic ability to tough out his pain and keep up his overwhelming good humour, even as he labors to do the small things for himself he is able to do, I mourn my upcoming loss. Just this determination, just this magic display of character, though also intended to help me in my daily routines by keeping independent as long as he can, seems to intensify my impending sense of loss. I WILL MISS MARTIJN ENTIRELY BECAUSE OF HIS SPIRIT. While I know the 'ruling' zen wisdom is to accept each day we still have and to cherish it, I admit to you that I mostly dwell in deep despair at my own sense of loss. And, I am not ashamed nor remorseful about this. It is what I feel. I am neither wallowing in sadness nor looking for sympathy - only marking my own reality to share with you.

Mostly when I'm with Martijn, I do not feel this despair. It is only when I'm alone - when he's sleeping or resting upstairs or I'm in the shower or washing up dishes. Also, when I'm out and about Maastricht. Maastricht is Martijn for me. 

So, it was with supreme gratitude that I found being out and about with Kate and Alex, along with our dear steady 'tour guide' Maurice, that I felt lighter for the first time in a long while. Sharing our long and mutual Philadelphia-based history was a panacea for my ills. Identifying landmarks like the Wissahickon Trail in the Germantown section of Philly where we were neighbors for many years, or sharing snatches of history like the big English Department parties hosted by their parents in my carefree student days, filled me with a sweet succor of long term friendship. We didn't run out of stories or reminiscences during the entire weekend of their visit. And the icing on the cake was spending Mother's Day with two young women who feel like my own daughters.

There is much more to tell about Kate and Alex and the wonderful Tasch family. Like Kate's own role as caretaker for her partner, Michele during her frightening bouts with leukemia, or Alex's recent scare with a burst appendix, or the time Martijn and I stayed in a funny, funky Manhattan apartment of Alex's former boss, or the huge party hosted by Peter and Alison for me when Temple University honored me with a distinguish humanities award, or Peter an Alison's current struggle with the Parkinson's disease that is ravaging their lives. So much history and so much love.

So, I have found a lasting 'afterburn' from their visit that is helping me back on track to enjoy Martijn's enduring love and company now. What a great gift. 

Poignant Plans

My American 'brothers', David Fey & Michael Putman traveled to Maastricht in late April to offer support and love. They stayed with us for a few days before heading to Amsterdam and back home to Minneapolis. It was a most meaningful visit. David stayed with me for a week when Martijn underwent surgery in October; Michael actually got his very passport and made his very first visit outside North American for this occasion. 

Father Carel van Tulder, a retired Jesuit priest, will facilitate the memorial service for Martijn. We've been meeting regularly. Carel is comforting and grounding for us. He is open to our ideas for the service and says he is amazed at how centered we seem to be. We are grateful that he is in our circle. 

Werner, Martijn's dear friend from university days, and his partner Henk, spend some time with us a few weeks back.

Therese and Rob Frank enjoy a spot of sun in our courtyard. They go back to Martijn's university days, the same time he knew Werner.

It has been an emotionally draining time for me. Martijn, thankfully, continues to be comfortable, but in the past weeks we've begun to finalize the plans for the memorial service, funeral, and cemetery. In each case there has been a  bittersweet poignancy in the activities.

Martijn and I treat each subject with love and respect, even making jokes and being lighthearted. And the various individuals, like Father van Tulder, who are involved fill my heart with gratitude. 

Yesterday we chose the location for the memorial service, which will be the stunning St. Jan's Kerk in the literal middle of Maastricht - its center square, the Vrijthof. Both Martijn and I were pleased to learn it is available and has all the features we wanted - central location, beautiful interior, ample seating and excellent musical facilities. Our beloved friend, Herman Rouw, has agreed to play and organize the music. Herman is world class conductor, composer and pianist, but most important, he is our dear friend. He has also agreed to accompany one of my newer friends, Pia Brand, who works with me at ECDPM. Pia has kindly offered to sing the moving song, "Beloved Wife", by Natalie Merchant, a tribute of one spouse to the other. Martijn and I love this song and have agreed it will end the service. 

We also selected the location where the Dutch coffee table will take place - the fortress that sits atop Maastricht. This is the typical gathering here that follows the funeral. The church and this fort are places Martijn and I love and so have a lot of meaning. Yesterday we also selected the coffin and today, our dear friend Maurice Schoffelen accompanied me as I drove in my new car share to the cemetery that Martijn asked me to check. It is where his grandfather Martijn Mullens rests. By coincidence the caretaker was available and I was able to secure the spot to the right of his grandfather and grandmother's gravesite. Our good friend, Frank Koekenbaker, "Cookie", visited with Martijn while we made these arrangements.

As you may imagine these are details that must be attended to. And while we are both grateful that Martijn can make the arrangements as he prefers, it has taken all of my equilibrium to do these things with grace. 

Tonight, Ursula stopped by with Martijn's favorite newspapers and some special treats from her native Blackforest in Germany, and the wonderful owners of our favorite Maastricht restaurant, Le Courage, prepared and delivered a lovely dinner requested by Martijn - sweetbreads with grilled potatoes and veggies. We feasted as we often do, watching the Australian television series, "McLeod's Daughters". Our poignant plans now underway, hopefully we can enjoy each day that we have left. 

The Two of Us

The two of us, still crazy in love, by the River Muse, Tuesday,  April 15, 2008.

Martijn and I honor our  vows to love, honor and cherish each other, in sickness and health....I am heartened by my husband's strength of character, intellect and spirit. His pain from the growing tumors is increasing, yet he cherishes each new day for what it brings. Still able to walk, albeit very very slowly, we try to journey the three (now long) blocks to our spot by the river. Martijn likes to make his own breakfast, since standing gives him relief from the increasing pain of sitting or even laying on his back. Our doctor, Maurice Bom, typically makes a house call twice a week; his palliative nurse, Vincent Janssen, comes also twice weekly. They are working with Martijn on a pain medication dose that fits his need to stay fully lucid and clear. One of our dear neighbors, Dirk Peek, happens to have been Martijn's anathestiologist during his surgery, and is one of the leaders of the pain clinic at the hospital. On his own time he checked in with us this weekend assuring us that he is available to collaborate with Maurice Bom should Martijn need additional advice. We also are meeting with a wonderful progressive retired priest, Carel van Tulden, as we plan Martijn's memorial service, which will truly be a celebration of his life.

But I am in a different kind of pain for which no medication can help. It is a pain I acknowledge and endure, knowing full well that I am already in mourning a loss of a love that will never be replaced. Through the Toon Herman's "Huis" (house), the Netherland's cancer support organization, I am working with a wonderful therapist whom I see weekly. Alied van der Aa, trained also in the US, helps me to cope with the natural grief I already feel. Martijn's condition and inevitable death weigh like a lead ball in the pit of my stomach. My old vitality and zest for life is currently subdued and I am in a heightened awareness of the joy I experience at his physical presence, his touch, his voice, his smile, his laughter. I memorize these times yet, naturally, grieve their eventual departure. Sure there will be the transformative love everlasting between us. I know this, I feel and believe in this. But I remain flesh and blood and so am aware of my loss.

I told Alied that I must be depressed. And she said something so simple yet so profound that now, even in my deepest sadness, comforts me. She said: "Depression is an abnormal reaction to normal events; grief is a normal reaction to abnormal events." Martijn and I should be looking forward to the best years of our life together. It is terribly abnormal that he departs me so prematurely. I am in grief.

Full Sun

Martijn shares a spot of sun on Saturday, April 26th.

Using all his grit and determination we walked the three blocks to the River Meuse on a sunny Saturday afternoon to enjoy sun, bird songs and each other.

In his mother's back garden on her 77th birthday, Wednesday, April 23rd with sister-in-law, Leah and brother Noel.

Marcel, brother-in-law Paul and sister Elly joined in for Geri's birthday celebration.

Not Alone

Marcel and Mother, Geri, a quiet dinner with us last Sunday, April 13th

Maurice Bom, our doctor, visits on Monday, April 14th 

Maurice consults with Martijn

It's been a while since I wrote. We've had a mostly good week. At present, Martijn is in a slightly stronger ‘chi’ pattern, I think influenced greatly by his lymph therapy sessions. On the other hand, his visage is greyer, and he tires a bit more easily. Still, he’s mobile and doing things, in a limited way, that he enjoys – making his own breakfast and lunch and lots and lots of reading and writing. Still, the pain is increasing and I imagine the cancer spreading, albeit at its own sinister pace. We have no extra help at present due to the situation I describe, but our general practitioner has a palliative team on hand for the changes sure to come. I am now seeing a therapist weekly and she’s a great help. She works with grief and is based in the Toon Hermans ‘Huis’ - the national Dutch cancer support organization that has lovely houses throughout the Netherlands offering such counseling, cooking lessons, art sessions, massage and other services all aimed at helping cancer patients and family through this journey. I'm trying as best I can to be and keep present, enjoying Martijn's company, while still bracing myself for the awful realities I will endure in the days to come. I have ridden a full spectrum of emotions this week, but mostly managed to keep one foot in front of the other.

Yesterday dear friends from Martijn's university days, Werner and Henk, stayed for the afternoon and evening. We celebrated a sort of makeshift Passover, although with Indonesian food substituting for a traditional seder dinner. Today David and Michael arrived from Minneapolis. It is so good to have them here. We spent a very quiet afternoon filled with laughter and tears. Martijn wants everyone to know he doesn't feel alone.

Martijn Reads a Minnetonka Cat Tale 3

More adventures of Yin, Yang and sister Snoepje. Written by Martijn Hermse for his beloved wife, Susan Schaefer during this mysterious passage of our lives.

Baby Snoepje, big owl face, casts a big shadow at home in Cottagewood, on Lake Minnetonka

The inscrutable Mr. Yin, on deck in Cottagewood, Lake Minnetonka 

The laid-back Mr. Yang, on deck, in Cottagewood, Lake Minnetonka

We thank everyone who continues to read, watch, write comments, send real mail and email. It lets us know we are not alone and are surrounded by light, love and support. 

Take Time to Memorize Each Other

Monday, April 7th, Sister Elle shines during a visit.

Martijn's lymph therapist, Eric Breuer, plays Frankenstein. Eric is trained in the newly evolving field of lymph therapy. After massage to push the lymph fluid up to the belly area where it can be better absorbed by the body, Eric gently wraps Martijn's leg in special bandages. The swelling and the pain are greatly reduced by this procedure.

At lunchtime, one of Martijn's oldest, dearest friends from his university days, Wijnand van Lieshout, arrives for a day long visit. Martijn wanted to discuss text from Ludwig Binswanger, a Swiss psychiatrist and pioneer in the field of existential psychology with Wijnand, who is an expert on his work. Martijn admires Binswanger's theories on eternal love and wants to use selected text for his memorial service. What a gift for these two 'eternal' friends to have a day to discuss love and friendship in quiet harmony. What a privilege for me to be quietly working on my own in the glow of the environment they create. 

I take to heart what our dear friends, David Fey and Michael Putman, who will arrive to stay with us in 10 days, wrote recently as a comment on this blog: Walk it bravely and in love, holding hands and being in the "now" with each other. Cherish it...and as a lyric from a Josh Groban song ... goes...take the time to memorize each other.

Now is the time for quiet meetings, for thoughtful contemplations about the transcendence of love, for meaningful embraces and acknowledgments of the many friendships and kindnesses shown throughout a lifetime...a too short one. And for me, as I try to do my best to be present, to do my work, to be a caregiver to my beloved, it is truly the time to memorize each other.

Martijn Reads a Minnetonka Cat Tale

I asked Martijn to write me stories from the point of view of our beloved cats, Yin, Yang and Snoepje (Snoop-yea). Here he is lying comfortably on the couch in his cozy study reading Tale 2. We hope you enjoy it. Remember creativity and love last for all eternity!

Trains, dreams, friendship

Martijn admires a model train exhibit on March 30th. This was his last outside walk before the lymph edema swelled his left leg beyond capability to take a walk. He loves trains and this painful trek was worthwhile. Look at that smile.

Barbara Greenberg outdoes herself again, baking Susan a spectacular chocolate birthday cake. Saturday was my birthday.

The best present I could think of was to buy us a comfortable, practical bed that will keep Martijn's painful leg raised. Here is the bed set-up team surrounding a smiling Martijn: his brother Janus, Olena Breyman and Maurice Schoffelen. Getting these electronic beds up a staircase and set up was a yeoman's work. 

But our hardworking team enjoyed the rewards of seeing these two bedbugs together. We hope that having these electronic beds will allow us to stay next to each other as our journey continues. 

With Martijn perched in his zero-gravity chair across the room, our hard working bed-team joined by Ursula Glunk (front right)  and Krista Knopper (under the artwork) for tea and Barbara's birthday cake.

Martijn and I try to keep our spirits. We face this journey with full knowledge that these are our precious final days together. We have been consulted by our wonderful general practitioner, Maurice Bom, who has been compassionate and honest in delivering the information of what we can expect as time passes. We are aware of various palliative treatments that should keep Martijn comfortable and pain free. Although this knowledge is shocking, we try to keep on living and loving since that seems the sane thing to do. We have had expected breakdowns filled with tears, and this is so good, so natural, so bonding. I have asked and Martijn has agreed to write me ten little stories from our cats point of view and to illustrate with his wonderful drawings. Tonight, at dinner at his mother's, she asked that we record his voice. I was touched to tears by this since it is his voice I think I shall miss the most. That gentle voice filled with wisdom and mirth and corny jokes and deep thoughts.

We are trying to discuss the weighty items that need our attention but this we find perhaps very difficult to do. And part of this is how and when to allow friends to visit without taxing our fragile cocoon. We shall do our best to do this well. I feel more and more embarrassed that people think I'm strong about all this. In my private moments I rant and wail, shaking like a leaf in a terrible storm at the pain and loneliness I already sense. I have no idea how my emotions will be minute to minute. It is Martijn who centers me and what will happen when that needle no longer points a better way?

Bringing him home

Martijn's bird tells all. Drawn today at the azM (hospital)

There was no surgery today. After a very difficult series of meetings with a series of our doctors - from our trusted oncological surgeon, Kristien Keymeulen, M.D., to the urologist, Dr. Stijns, M.D., to our dear general practitioner, Maurice Bom, M.D., and finally to the previously unknown medical oncologist, we were given a grim prognosis. The cancer has spread too rapidly and widely to treat in any way. 

The tumors threaten kidney, bladder and liver. Chemotherapy requires a relatively healthy person and two functioning kidneys. Martijn is not in shape to undergo such a procedure. The proposed  kidney 'puncture' and drain could have caused much discomfort for too little long-term gain - or worse. 

We are planning to live together as best as we can the rest of our remaining time at home. If that is possible. Tomorrow Dr. Bom will come to discuss the plan. It will not be easy - one tumor already is externally protruding and could rupture at any time. I'm so sorry to say no optimistic words at present. I am telling in this blog the same grim reality we face. We cried a lot today. You understand, I'm sure. We laughed, we talked about people we love, trips we've taken and in general a love we believe transcends space and time. I agonize over Martijn not having unnecessary pain and know that we will discuss this and plan for it. I equally agonize over keeping my grace, even now my tummy is in a huge knot and I feel ill.

But beyond it, beyond it all, we face this inevitable conclusion surrounded by radiant light and love. We feel your support over time and space. We are so grateful for this strange, virtual community and what it brings, as though it is as tangible as a sip of water to quench thirst. We hope you can truly understand and appreciate what your connection to us means.

Thanks to the discerning ear of my dear friend, Dr. David Meyers, who with wife, Roberta, was with us a few short weeks ago, I learned of Irish poet, philosopher and scholar, John O'Donohue, who died peacefully in his sleep at age 52 this past January. O'Donohue was interviewed shortly before his untimely death on a wonderful program, Speaking of Faith, hosted by Krista Tippett, from American Public Media, a weekly conversation about belief, meaning, ethics, and ideas.  The program and this poet couldn't have entered my life at more poignant moment. Here is "A Blessing for Death" from John O'Donohue's book Anam Cara, meaning 'soul friend'.

A Blessing for Death

I pray that you will have the blessing of being consoled and

sure about your own death.

May you know in your soul that there is no need to be afraid.

When you time comes, may you be given every blessing 

and shelter that you need. 

May there be a beautiful welcome for you in the home that

you are going to.

You are not going somewhere strange. You are going back to

the home that you never left.

May you have a wonderful urgency to live your life to the 

full.

May you live compassionately and creatively and transfigure

everything this is negative within you and about you.

When you come to die may it be after a long life.

May you be peaceful and happy and in the presence of those who really care for you.

May your going be sheltered and your welcome assured.

May your soul smile in the embrace of your anam cara. 

Disturbing Results

Martijn catches a quiet read in my study a week ago

It is April 1st but there weren't any jokes for us today. Martijn is back in the hospital this evening waiting for emergency surgery tomorrow on his right kidney. The PET/CT scan revealed that the cancer has spread to his lymph system at and above the groin. One large tumor so obstructed his right kidney that it failed, leaking urine into his body cavity. They will catheterize that kidney tomorrow resulting in what the urologist called a permanent situation. The catheter will puncture his back, hopefully draining and possibly bringing back to function to that kidney. There is another large tumor in his pelvis and metastasis in his liver. The urologist, Dr. Stijns, said that if they could resuscitate his right kidney he would be able to handle chemotherapy if the medical oncologist decides there is a treatment. 

I write these words as though they are normal to write. Nothing is normal. It is extraordinarily surreal. I want to wake from this dream but my little heart knows it doesn't happen like that.

Martijn, as always, was in great spirits, though the gravity of the news hadn't time to set in before we were whisked from the cancer to the urology clinic and finally the nursing floor. I dashed back home by bus to pack his soft 'jamies and a few essentials, returning with his mother, Geri and our steadfast Marcel. Keep us, as always in your thoughts, meditations and prayers.