- Email: [email protected]
Cancer: From the partner's point of view
Patient Education and Counseling 93 (2013) 354–356
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Reflective practice
Cancer: From the partner’s point of view§ Margreet van der Linden-Osinga * Praktijk voor Aandachttraining en Psychotherapie, Utrecht, The Netherlands
A R T I C L E I N F O
Article history: Received 10 October 2012 Received in revised form 4 March 2013 Accepted 29 June 2013
It’s November. The trees’ yellow and red are brightened by the sunshine. Some are all bare already. Piles of chocolate letters and gingerbread cookies (pepernoten) in the supermarkets herald the Dutch feast of Saint Nicholas December 5th. We won’t celebrate this year. My thoughts go back to Saint Nicholas eve 2009. The presents, the poems, the cheer. When Jan reads a poem out loud, he stumbles over the words. When he speaks, he can’t find all the words he wants to say. We laugh about it, he’s known to goof off now and then. After cleaning up he continues to talk in a strange way. I decide to phone the doctors’ clinic. The doctor on call asks us to come over. He wants to have a scan done. Without realizing it, we’ve boarded a train with unknown destination. The scan shows a large accumulation of fluid in the brain. I see the photo when I walk passing the office, the doctors’ and nurses’ heads bent over it. ‘‘We need to investigate where that is coming from’’, is the message. When I hear the nurse, who is pushing the bed through the hallways, say ‘‘no stroke’’, the alarm bells go off in my head. At onethirty a.m. I leave my husband behind in the hospital and go home with the image of the scan before my eyes.
We too And then your world falls apart. How often haven’t I heard these stories. I am a therapist at the Helen Dowling Institute for psychooncology, where I guide cancer patients and their next of kin in
processing the illness. I’ve come across so much desperation and courage in my office. And now, we, too? And that while I have just decided to stop working with cancer patients in order to have more time with Jan, to do fun things together? A few days later, on my last day of work, we receive the diagnosis: brain tumor, most likely a glioblastoma, grade IV, the most aggressive tumor possible. So I can’t be ‘‘just a bit tired of cancer’’ after nine years of work in this field. The cancer is in Jan’s head and under my skin. There’s no escape. From now on it will always be there. Treatment During surgery a mandarin-sized tumor is excised. The surgeon is optimistic. ‘‘You are in excellent condition and there are medications that can slow down the growth of the tumor’’. But he also adds: ‘‘I could not take out everything. This kind of tumor is like moss in a lawn: it always comes back’’. The damage from the surgery is not too bad. Jan recuperates very fast and his speech returns to almost normal. And then we need to make decisions. Which treatments are possible and what impact will they have on the quality of life? The oncologist and the radiologist are realistic. Given Jan’s age, 70, they see little use for chemo along with radiation treatment. That would mean a heavy load for six months with little gain. Chemo could possibly be done later if needed, a second operation, too. We decide to choose the least possible medical intervention. That means only the fifteen radiation treatments. We’re aware of the nearing of the end of Jan’s life. He indicates ‘‘I don’t want to succumb to this glioblastoma like a wobbling idiot’’ and discusses this with his physician, who in principle is willing to honor Jan’s wish for euthanasia when the time comes. That in a way gives us some peace and makes us pick up our daily lives again. Falling
§ For more information on the Reflective Practice section please see: Hatem D, Rider EA. Sharing stories: narrative medicine in an evidence-based world. Patient Education and Counseling 2004;54:251–253. * Correspondence address: Praktijk voor Aandachttraining en Psychotherapie, Oudegracht 360, 3511 PN Utrecht, The Netherlands. Tel.: +31 306916401; fax: +31 306916401. E-mail address: [email protected]
0738-3991/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.pec.2013.06.022
In mid-March, after finishing the radiation treatments, we go to Malaga to leave the awful winter behind and to enjoy the spring. On the second day Jan falls over backwards, on his head, exactly on the spot of the recent surgery and radiation. There he is, bleeding and unconscious on the stairs descending from the castle we have just visited. ‘‘Don’t die, not now, not so fast, not here’’, is all I can
M. van der Linden-Osinga / Patient Education and Counseling 93 (2013) 354–356
think of. When he comes to consciousness he can’t utter one sensible word. For twelve days Jan is in a Spanish hospital. Besides all sorts of incomprehensible speech he says only:’’ Such misery’’ and other, short sentences. Fortunately he does understand what I say and is able to convey that to me. Besides his speech he has also lost part of the sight in his right eye and his motor movement is affected. He needs help with everything. I am often as his bedside and roam around in cold Malaga, desolate, waiting for the ambulance that will take us home. Jan has now changed into the ‘‘wobbling idiot’’ he did not want to be, but his wish for euthanasia has disappeared altogether. He is friendly, in a good mood and not quite aware of all that has changed. Slowly some words and sentences return and his walking improves. Sometimes difficult words come out better than something simple. For example, he’ll say, ‘‘I am a cryptogram’’, which makes sense if I have to figure out that ‘‘1,2,3,4,5, throw it out’’, means that he needs new razors. We decide not to see any more doctors, other than our family physician, so there are no more check-ups, no scans, no chemo or surgery and we focus on revalidation and quality of life. Living in the now The brain tumor is out of the picture for a while and that suits us fine. We thoroughly enjoy the summer and do fun things: a balloon ride, little excursions, swimming and riding our side-by-side bicycle and enjoying the attention of our children and friends. We can also laugh together if he puts his legs into the sleeves of his sweater, puts a sock on his head or tries to brush his teeth with his razor. But it also means that he needs help with everything and that he must always be supervised, especially after he fell into the water because he had not seen where the dock ended. Fortunately he was able to get himself out. However, now that things are going better, Jan sometimes becomes somber and angry when I do not understand him. He realizes what the future holds and is aware of the huge contrast between his situation and my life and the lives of all the loved ones that surround him. That makes him jealous, scared, angry and sad. Sometimes I myself long for freedom to do what I want, but the price to pay is too high. We try as much as possible to live in the NOW and are reasonably successful. After a year Almost a year has passed now and things are going wondrously well. The decline is like a very slow extinction and we still go to the gym, concerts and the theater. But I have lost my partner. The relationship has changed drastically. I decide that he should take his dexamethasone, even though he wants no pills, and sneak them, finely grounded, into his sandwiches. It feels like cheating and I feel lonely. We glide into our own worlds and can no longer take for granted that we can share them. When that goes too far, a fight brings us close together again. Tears are a means of communication, too, it feels good to cry together. Who are you if you no longer think clearly, if you can no longer say the words that are in your head, no longer read or write, practice your passion (painting and sculpting) and are totally dependent on others to help you? A shadow of the person you once were, that is clear. But still you are also the person who still lovingly embraces his partner and is concerned about how well she slept. Emotions have not changed, only more frustration, impotence, fear and sadness have been added. They have not diminished love. That is a consolation.
355
The last phase By mid-December 2010 there is a sudden turn for the worse. Because Jan no longer knows where to go to pee, he has been given a catheter. That causes a bladder infection. One day we go to the gym, the next day he can no longer walk and I bring beds downstairs. For another week we manage to get him from the bed to the couch and the dining table in a wheelchair. He sits in the wheelchair at the Christmas dinner table, but after that he loses all the muscle control in his lower body. He can’t even turn around in bed anymore. We arrange for home care to wash and change Jan, which is done with great care and attention. When I give him food, I notice that he can’t see what’s on his plate, so I help him with eating and drinking. He remains clear and involved, even though he cannot do a thing. If someone cries beside him, he lovingly caresses that person’s arm. There are many visitors and strangely enough that is simply ‘‘cozy’’. We sit at his bedside and play music that he likes. It is good to see how he hums along with the songs he knows. Often he also dozes off and then we’re aware again of how sick he really is. Jan knows this, too, and on Friday morning he says, ‘‘I’m almost dead, it doesn’t matter anymore’’. I am surprised by this exceptionally long, full sentence, but dare not engage in it. I am afraid to disturb the apparent resignation. On Saturday he is awake all day en even looks at our son’s vacation pictures, though I think he can barely see anything. When I go outside for a little while on Sunday afternoon I realize that I am actually trying to extend his life by feeding him things he is no longer able to eat or drink by himself. I feel intensely sad, but Jan consoles me and I give him permission to die. That night he breathes and snores heavily. I lie beside him, can’t sleep anymore and through my iPhone listen to Cecilia Bartoli singing a song about a loved one who can’t be reached. When that song is finished, on Monday, January 17, 2011, at half past six, it suddenly is deafeningly SILENT. Mourning I’ve been a widow for five months now and ‘‘in mourning’’ and try to understand what ‘‘in mourning’’ really is like. For me that happens not with many tears, but more by feeling out of sorts of and by missing. First of all there is the shock of silence. After hearing the familiar breathing beside me for over forty-five years that silence sounds as if a bomb has hit. The sudden awareness, reaching every fiber in your body, of a change that can never again become undone, and at the same time the impossible wish to turn back the clock, to make it stop. At once I have forgotten how heavy the past year has been and I would so much love to care again for my sick husband. He is so overwhelmingly present in the emptiness. Should I have known that his snoring that last night was no normal snoring? Should I have stayed awake and focus my attention on him? Or would it have been more difficult to let go of life and was it actually a good thing that I had turned away? The caregiver who still comes by on Sunday night is surprised that it all happened so fast. Maybe, intuitively, I did the right thing after all and said good-bye that Sunday afternoon, allowing Jan to go. Something that, no matter how, he had to do on his own. I console myself with that. Alone When I go back to the gym two weeks later, I notice how much tension has been stored in my body and how much good an hour of exercising does for me. While I am busy working out, I see Jan from the corner of my eye, doing his exercises. Simultaneously I am aware of missing him and also of the pleasant feeling which the
356
M. van der Linden-Osinga / Patient Education and Counseling 93 (2013) 354–356
endorphins bring into my body. When I walk through the city, too, I notice that strange combination of the feeling of freedom to do what I want and the pain of coming home to a house where no one is waiting for me. I am gradually getting used to the fact that these feelings keep coming at the same time and I count myself lucky when I can find a balance. What is helping me is the fact that we have grown toward this ending. We did not fight the cancer, but focused on quality of life, knowing that this battle could not be won. That way the past year has not been one of confrontation in the medical circuit and with fear for what was coming our way. Instead, we have been able to enjoy the many precious experiences from moment to moment, until the very end. It also helps me to know that Jan could be with us for as long as he wanted to be and that in the end his body simply gave up. So I am not protesting against death. We had discussed this many times and Jan could look back on a beautiful and rich life, mostly with me and the children. Those memories bring consolation and gratitude. We have been able to really round off our life together. I reminisce a lot and let all the memories that come up twirl in my head. It gives me peace. There are fewer visitors. ‘‘You are strong and healthy, you’ll be OK’’, is what most people seem to think. I AM OK’’, I courageously say that I am ‘‘fine’’, but that does not mean it’s easy. I am glad when friends keep calling and ask how I am doing, then I have someone to talk to. I also enjoy bringing up memories with the children and friends, it brings Jan to life for a moment, but in the meantime those ‘‘miss-him’’ moments pile up as well. My birthday, visiting someone by myself now, coming home from a movie and not being able to discuss it, not immediately buying that book that was so well presented and that we would both read, noticing how lonesome I feel when I can’t just say that the weather is great or just having someone around to ask, ‘‘would you like coffee?’’ Living an illusion I think the essence of mourning is that countless reaction patterns of a life together, that are at a ready in your mind, keep being triggered and get fired off automatically. At first it gave me something to hold on to, it’s almost as if you’re still together. I began to read books which I knew Jan liked, but that I had not gotten around to. This was so I could identify myself with him and be in touch with him. Of course I discovered why I had not bothered to read them: they were not my taste and even this identification could still not bring Jan back. Also, going to places we used to go together, or continuing to do things we ‘d carried out together, felt good at first, as if we were still together for a moment, but this began to make me feel more and more lonely. The
automatic reaction patterns had lost their purpose and only served to confront me with his absence. Cherishing the miss meant living an illusion. Counter to that I notice that doing new things in my daily life, or doing things I used to do on my own anyway, give me energy and a sense of freedom with which I do not miss Jan. My own life That realization opens the way for filling in my life in my own way and for making new plans. Of course, that does not happen overnight. Living alone takes more energy as now I have to do all the chores we used to share. Fortunately I was the one taking care of the finances already, but cleaning out gutters, trimming the hedge, or clearing out the basement, to name just a few, are not things I do wholeheartedly and all those things take up much time and energy. Sometimes, for a minute, I get angry with Jan or with life. Then it is just too much for me. I know that is irrational, and fortunately it passes quickly, but I can imagine that in worse circumstances I could get hung up on this. I am very grateful when someone offers to help out in the garden or in any other job. On the other hand I love to be able to cook for someone. I often don’t do that for myself. I don’t make a carrot salad with orange juice and herbs, but eat a whole carrot and a handful of nuts for dinner. Eating alone is most boring and putting in an effort for just me is a pattern that still needs developing. I am at the point of meeting the challenges of allowing and developing new patterns into my life and make plans for vacations and actions to liven up my weekends. What consoles me, too, is beauty. I always liked it, but I notice that now I am even more open to let experiences in nature, music and art touch me. This way I feel life flow again. Consequently I feel rich with all the paintings, drawing and sculptures around me that Jan has made and I can intensely enjoy a concert, movie or theater performance. And sometimes there are the unexpected moments of pain. When I have to jabber (talking nonsense) at choir practice I suddenly get very sad and tears well up. After trying to find out for a whole year what Jan’s cryptic words meant I can no longer do that unconcerned. And when the soloists in Monteverdi’s opera Orfeo, which we sang with our choir, sing so beautifully about love and death that it tears your heart out, I get tears in my eyes and my voice breaks. So, even though my grieving is not over by any means and my life is still somewhat off-kilter, it is worth it to accept the legacy of Jan’s unlived life whole-heartedly and to make the best of it on his behalf. Utrecht, June 2011 And now, September 2012, I am fully aware of this: ‘‘People die, love does not, if nothing remains of me but love, then share me amongst you’’.
Contents lists available at ScienceDirect
Patient Education and Counseling journal homepage: www.elsevier.com/locate/pateducou
Reflective practice
Cancer: From the partner’s point of view§ Margreet van der Linden-Osinga * Praktijk voor Aandachttraining en Psychotherapie, Utrecht, The Netherlands
A R T I C L E I N F O
Article history: Received 10 October 2012 Received in revised form 4 March 2013 Accepted 29 June 2013
It’s November. The trees’ yellow and red are brightened by the sunshine. Some are all bare already. Piles of chocolate letters and gingerbread cookies (pepernoten) in the supermarkets herald the Dutch feast of Saint Nicholas December 5th. We won’t celebrate this year. My thoughts go back to Saint Nicholas eve 2009. The presents, the poems, the cheer. When Jan reads a poem out loud, he stumbles over the words. When he speaks, he can’t find all the words he wants to say. We laugh about it, he’s known to goof off now and then. After cleaning up he continues to talk in a strange way. I decide to phone the doctors’ clinic. The doctor on call asks us to come over. He wants to have a scan done. Without realizing it, we’ve boarded a train with unknown destination. The scan shows a large accumulation of fluid in the brain. I see the photo when I walk passing the office, the doctors’ and nurses’ heads bent over it. ‘‘We need to investigate where that is coming from’’, is the message. When I hear the nurse, who is pushing the bed through the hallways, say ‘‘no stroke’’, the alarm bells go off in my head. At onethirty a.m. I leave my husband behind in the hospital and go home with the image of the scan before my eyes.
We too And then your world falls apart. How often haven’t I heard these stories. I am a therapist at the Helen Dowling Institute for psychooncology, where I guide cancer patients and their next of kin in
processing the illness. I’ve come across so much desperation and courage in my office. And now, we, too? And that while I have just decided to stop working with cancer patients in order to have more time with Jan, to do fun things together? A few days later, on my last day of work, we receive the diagnosis: brain tumor, most likely a glioblastoma, grade IV, the most aggressive tumor possible. So I can’t be ‘‘just a bit tired of cancer’’ after nine years of work in this field. The cancer is in Jan’s head and under my skin. There’s no escape. From now on it will always be there. Treatment During surgery a mandarin-sized tumor is excised. The surgeon is optimistic. ‘‘You are in excellent condition and there are medications that can slow down the growth of the tumor’’. But he also adds: ‘‘I could not take out everything. This kind of tumor is like moss in a lawn: it always comes back’’. The damage from the surgery is not too bad. Jan recuperates very fast and his speech returns to almost normal. And then we need to make decisions. Which treatments are possible and what impact will they have on the quality of life? The oncologist and the radiologist are realistic. Given Jan’s age, 70, they see little use for chemo along with radiation treatment. That would mean a heavy load for six months with little gain. Chemo could possibly be done later if needed, a second operation, too. We decide to choose the least possible medical intervention. That means only the fifteen radiation treatments. We’re aware of the nearing of the end of Jan’s life. He indicates ‘‘I don’t want to succumb to this glioblastoma like a wobbling idiot’’ and discusses this with his physician, who in principle is willing to honor Jan’s wish for euthanasia when the time comes. That in a way gives us some peace and makes us pick up our daily lives again. Falling
§ For more information on the Reflective Practice section please see: Hatem D, Rider EA. Sharing stories: narrative medicine in an evidence-based world. Patient Education and Counseling 2004;54:251–253. * Correspondence address: Praktijk voor Aandachttraining en Psychotherapie, Oudegracht 360, 3511 PN Utrecht, The Netherlands. Tel.: +31 306916401; fax: +31 306916401. E-mail address: [email protected]
0738-3991/$ – see front matter ß 2013 Elsevier Ireland Ltd. All rights reserved. http://dx.doi.org/10.1016/j.pec.2013.06.022
In mid-March, after finishing the radiation treatments, we go to Malaga to leave the awful winter behind and to enjoy the spring. On the second day Jan falls over backwards, on his head, exactly on the spot of the recent surgery and radiation. There he is, bleeding and unconscious on the stairs descending from the castle we have just visited. ‘‘Don’t die, not now, not so fast, not here’’, is all I can
M. van der Linden-Osinga / Patient Education and Counseling 93 (2013) 354–356
think of. When he comes to consciousness he can’t utter one sensible word. For twelve days Jan is in a Spanish hospital. Besides all sorts of incomprehensible speech he says only:’’ Such misery’’ and other, short sentences. Fortunately he does understand what I say and is able to convey that to me. Besides his speech he has also lost part of the sight in his right eye and his motor movement is affected. He needs help with everything. I am often as his bedside and roam around in cold Malaga, desolate, waiting for the ambulance that will take us home. Jan has now changed into the ‘‘wobbling idiot’’ he did not want to be, but his wish for euthanasia has disappeared altogether. He is friendly, in a good mood and not quite aware of all that has changed. Slowly some words and sentences return and his walking improves. Sometimes difficult words come out better than something simple. For example, he’ll say, ‘‘I am a cryptogram’’, which makes sense if I have to figure out that ‘‘1,2,3,4,5, throw it out’’, means that he needs new razors. We decide not to see any more doctors, other than our family physician, so there are no more check-ups, no scans, no chemo or surgery and we focus on revalidation and quality of life. Living in the now The brain tumor is out of the picture for a while and that suits us fine. We thoroughly enjoy the summer and do fun things: a balloon ride, little excursions, swimming and riding our side-by-side bicycle and enjoying the attention of our children and friends. We can also laugh together if he puts his legs into the sleeves of his sweater, puts a sock on his head or tries to brush his teeth with his razor. But it also means that he needs help with everything and that he must always be supervised, especially after he fell into the water because he had not seen where the dock ended. Fortunately he was able to get himself out. However, now that things are going better, Jan sometimes becomes somber and angry when I do not understand him. He realizes what the future holds and is aware of the huge contrast between his situation and my life and the lives of all the loved ones that surround him. That makes him jealous, scared, angry and sad. Sometimes I myself long for freedom to do what I want, but the price to pay is too high. We try as much as possible to live in the NOW and are reasonably successful. After a year Almost a year has passed now and things are going wondrously well. The decline is like a very slow extinction and we still go to the gym, concerts and the theater. But I have lost my partner. The relationship has changed drastically. I decide that he should take his dexamethasone, even though he wants no pills, and sneak them, finely grounded, into his sandwiches. It feels like cheating and I feel lonely. We glide into our own worlds and can no longer take for granted that we can share them. When that goes too far, a fight brings us close together again. Tears are a means of communication, too, it feels good to cry together. Who are you if you no longer think clearly, if you can no longer say the words that are in your head, no longer read or write, practice your passion (painting and sculpting) and are totally dependent on others to help you? A shadow of the person you once were, that is clear. But still you are also the person who still lovingly embraces his partner and is concerned about how well she slept. Emotions have not changed, only more frustration, impotence, fear and sadness have been added. They have not diminished love. That is a consolation.
355
The last phase By mid-December 2010 there is a sudden turn for the worse. Because Jan no longer knows where to go to pee, he has been given a catheter. That causes a bladder infection. One day we go to the gym, the next day he can no longer walk and I bring beds downstairs. For another week we manage to get him from the bed to the couch and the dining table in a wheelchair. He sits in the wheelchair at the Christmas dinner table, but after that he loses all the muscle control in his lower body. He can’t even turn around in bed anymore. We arrange for home care to wash and change Jan, which is done with great care and attention. When I give him food, I notice that he can’t see what’s on his plate, so I help him with eating and drinking. He remains clear and involved, even though he cannot do a thing. If someone cries beside him, he lovingly caresses that person’s arm. There are many visitors and strangely enough that is simply ‘‘cozy’’. We sit at his bedside and play music that he likes. It is good to see how he hums along with the songs he knows. Often he also dozes off and then we’re aware again of how sick he really is. Jan knows this, too, and on Friday morning he says, ‘‘I’m almost dead, it doesn’t matter anymore’’. I am surprised by this exceptionally long, full sentence, but dare not engage in it. I am afraid to disturb the apparent resignation. On Saturday he is awake all day en even looks at our son’s vacation pictures, though I think he can barely see anything. When I go outside for a little while on Sunday afternoon I realize that I am actually trying to extend his life by feeding him things he is no longer able to eat or drink by himself. I feel intensely sad, but Jan consoles me and I give him permission to die. That night he breathes and snores heavily. I lie beside him, can’t sleep anymore and through my iPhone listen to Cecilia Bartoli singing a song about a loved one who can’t be reached. When that song is finished, on Monday, January 17, 2011, at half past six, it suddenly is deafeningly SILENT. Mourning I’ve been a widow for five months now and ‘‘in mourning’’ and try to understand what ‘‘in mourning’’ really is like. For me that happens not with many tears, but more by feeling out of sorts of and by missing. First of all there is the shock of silence. After hearing the familiar breathing beside me for over forty-five years that silence sounds as if a bomb has hit. The sudden awareness, reaching every fiber in your body, of a change that can never again become undone, and at the same time the impossible wish to turn back the clock, to make it stop. At once I have forgotten how heavy the past year has been and I would so much love to care again for my sick husband. He is so overwhelmingly present in the emptiness. Should I have known that his snoring that last night was no normal snoring? Should I have stayed awake and focus my attention on him? Or would it have been more difficult to let go of life and was it actually a good thing that I had turned away? The caregiver who still comes by on Sunday night is surprised that it all happened so fast. Maybe, intuitively, I did the right thing after all and said good-bye that Sunday afternoon, allowing Jan to go. Something that, no matter how, he had to do on his own. I console myself with that. Alone When I go back to the gym two weeks later, I notice how much tension has been stored in my body and how much good an hour of exercising does for me. While I am busy working out, I see Jan from the corner of my eye, doing his exercises. Simultaneously I am aware of missing him and also of the pleasant feeling which the
356
M. van der Linden-Osinga / Patient Education and Counseling 93 (2013) 354–356
endorphins bring into my body. When I walk through the city, too, I notice that strange combination of the feeling of freedom to do what I want and the pain of coming home to a house where no one is waiting for me. I am gradually getting used to the fact that these feelings keep coming at the same time and I count myself lucky when I can find a balance. What is helping me is the fact that we have grown toward this ending. We did not fight the cancer, but focused on quality of life, knowing that this battle could not be won. That way the past year has not been one of confrontation in the medical circuit and with fear for what was coming our way. Instead, we have been able to enjoy the many precious experiences from moment to moment, until the very end. It also helps me to know that Jan could be with us for as long as he wanted to be and that in the end his body simply gave up. So I am not protesting against death. We had discussed this many times and Jan could look back on a beautiful and rich life, mostly with me and the children. Those memories bring consolation and gratitude. We have been able to really round off our life together. I reminisce a lot and let all the memories that come up twirl in my head. It gives me peace. There are fewer visitors. ‘‘You are strong and healthy, you’ll be OK’’, is what most people seem to think. I AM OK’’, I courageously say that I am ‘‘fine’’, but that does not mean it’s easy. I am glad when friends keep calling and ask how I am doing, then I have someone to talk to. I also enjoy bringing up memories with the children and friends, it brings Jan to life for a moment, but in the meantime those ‘‘miss-him’’ moments pile up as well. My birthday, visiting someone by myself now, coming home from a movie and not being able to discuss it, not immediately buying that book that was so well presented and that we would both read, noticing how lonesome I feel when I can’t just say that the weather is great or just having someone around to ask, ‘‘would you like coffee?’’ Living an illusion I think the essence of mourning is that countless reaction patterns of a life together, that are at a ready in your mind, keep being triggered and get fired off automatically. At first it gave me something to hold on to, it’s almost as if you’re still together. I began to read books which I knew Jan liked, but that I had not gotten around to. This was so I could identify myself with him and be in touch with him. Of course I discovered why I had not bothered to read them: they were not my taste and even this identification could still not bring Jan back. Also, going to places we used to go together, or continuing to do things we ‘d carried out together, felt good at first, as if we were still together for a moment, but this began to make me feel more and more lonely. The
automatic reaction patterns had lost their purpose and only served to confront me with his absence. Cherishing the miss meant living an illusion. Counter to that I notice that doing new things in my daily life, or doing things I used to do on my own anyway, give me energy and a sense of freedom with which I do not miss Jan. My own life That realization opens the way for filling in my life in my own way and for making new plans. Of course, that does not happen overnight. Living alone takes more energy as now I have to do all the chores we used to share. Fortunately I was the one taking care of the finances already, but cleaning out gutters, trimming the hedge, or clearing out the basement, to name just a few, are not things I do wholeheartedly and all those things take up much time and energy. Sometimes, for a minute, I get angry with Jan or with life. Then it is just too much for me. I know that is irrational, and fortunately it passes quickly, but I can imagine that in worse circumstances I could get hung up on this. I am very grateful when someone offers to help out in the garden or in any other job. On the other hand I love to be able to cook for someone. I often don’t do that for myself. I don’t make a carrot salad with orange juice and herbs, but eat a whole carrot and a handful of nuts for dinner. Eating alone is most boring and putting in an effort for just me is a pattern that still needs developing. I am at the point of meeting the challenges of allowing and developing new patterns into my life and make plans for vacations and actions to liven up my weekends. What consoles me, too, is beauty. I always liked it, but I notice that now I am even more open to let experiences in nature, music and art touch me. This way I feel life flow again. Consequently I feel rich with all the paintings, drawing and sculptures around me that Jan has made and I can intensely enjoy a concert, movie or theater performance. And sometimes there are the unexpected moments of pain. When I have to jabber (talking nonsense) at choir practice I suddenly get very sad and tears well up. After trying to find out for a whole year what Jan’s cryptic words meant I can no longer do that unconcerned. And when the soloists in Monteverdi’s opera Orfeo, which we sang with our choir, sing so beautifully about love and death that it tears your heart out, I get tears in my eyes and my voice breaks. So, even though my grieving is not over by any means and my life is still somewhat off-kilter, it is worth it to accept the legacy of Jan’s unlived life whole-heartedly and to make the best of it on his behalf. Utrecht, June 2011 And now, September 2012, I am fully aware of this: ‘‘People die, love does not, if nothing remains of me but love, then share me amongst you’’.