Category Archives: ENHans

ENHans, Hans, Uncategorized

A Life After Death

On New Year’s Day 2017, my 55-year-old life came to an end. Admittedly, a dramatic expression when it was my son Hans, and not I, who died. But it is difficult in any other way to express the catastrophic collapse of meaning and values that follows when one sees their son have heart failure 24 hours after we had a quiet conversation about dinner. I stand by the statement. The life I live today, seven years later, is a completely different life, and I, the person living it, a completely different person.

One of the things I have learned through my interaction with fellow sufferers is that no one should tell others how to grieve. I will go a step further: I will not even advise anyone on how to grieve. My wife and I, after Hans’ death, have been in close contact with the parents of five different lost children. Typically, it is common friends or acquaintances who facilitate the contact because they believe that with our background, we would be the best at talking to them. From feedback, we understand that it has been good for these parents to have early contact with someone who understands them and can articulate feelings that still overwhelm them. From our own perspective, it has helped us in our process that we have been able to contribute something positive out of our own pain and grief. The only exception I make regarding direct advice is when these parents tell us that family, work, or others are trying to influence their course. Then I tell them to think of themselves and no one else. They should do what they believe is best for their grief and new life.

Today, I’m in a place that seven years ago, I never would have thought possible. A place where I can not only feel joy but where happiness in life is present again. It has taken a lot to get here. Time is probably one of the most important ingredients, but time alone certainly does not heal all wounds. My wife and I set out from the beginning to be open to trying everything to overcome the pain, and we really tried a lot. Some things worked well, some worked poorly, and some just didn’t seem to work. We are all different, and it would be wrong to advise anyone for or against based on our experiences. What is good for us may be bad for others and vice versa. But if you find yourself in your own unhappy situation, I would like it if you may find inspiration and hope in my experiences.

We quickly (four days after Hans’ death) entered psychotherapy. The first three times, we came as a couple to, among other things, establish agreements about handling shared grief. Then onwards we went individually, partly because we – quite typically I’m informed – grieved very differently. Looking back on the long series of consultations, I generally think it helped me dealing with the present. I got tools to use in practical everyday life with colleagues, friends, and family. By discussing thoughts and ideas with another person, it was also easier to reflect on the tentative beginning of building a new life. Later, in our grief support group, I spoke with someone who had undergone EMDR therapy. I never tried it myself, and I regret it, because I had PTSD symptoms as part of my grief, and I think a targeted treatment method like EMDR would have helped.

I contacted a hypnotherapist, who, after an initial consultation, discussed my case with her colleagues. My motivation for seeking hypnosis was to try to get rid of the unbearable pain in grief. She returned with a rejection. We had a good talk about it, and she explained that if you want to get rid of irrational fear of flying because you rationally know it is safe to fly or get rid of the urge to smoke when you know it is unhealthy, they can help ensure that the rational wins over the irrational. The problem with my grief and pain was that it was rational. There was a reason why I grieved painfully. Hypnosis probably wouldn’t accomplish anything in that case. It might be possible to facilitate repression, but that is hardly a good thing. Painful as it is, our memories of our dead children are the only things we have, and I don’t want to lose all the good memories from my life with Hans.

From the beginning, we chose to be very open to the world around our grief. It was a conscious, although not particularly well-thought-out, choice. At the suggestion of my psychologist, I started off by writing and publishing a letter to Hans. I ended up reading that letter aloud in the opening scene of the DR documentary “Our Boys’ Last Day.” Then I felt the die was cast, and I followed up with another dozen blog posts about grief, identity, and hope, among other things. Writing about my feelings helped me in my process, but it is not without problems. Regardless of whether they are mentioned in the post, such writings can hardly avoid hitting close to others who also grieve for Hans. I tried to keep that in mind, and it was always important to warn relevant people that a new post was coming.

We tried to join a local grief group run by the perish’ vicar. There were no open spots, which was probably a blessing in disguise because shortly after, we were told about the Child Loss organization. We contacted them, and they had a grief group not far from us that had just started, and there were two available spots. In that period of our grief, the Child Loss grief group was very significant for our further development. It was a place where we could feel safe and understood. Especially the latter was important. I doubt that one can find complete understanding anywhere but among other parents who have lost a child. We met once a month, and it was tough. The first couple of times were even very tough. Though we had told our story many times by then, it is always tough, and it became much harder to hear about all the other wonderful children who unfairly also died. When we returned after the second time, we had to ask ourselves if we believed we could handle participating over a long period of time. We know that many others have felt the same, and that, like us, they are glad to have persevered. When the grief support group ended, we continued to meet at each other’s homes every four months for another year.

Hans died due to a series of errors in the triage process in the Capital Region Emergency Services. We were steadfast in denying a meaning to Hans’ death, but just as driven to try to find meaning in it. We started an organization, Fight Meningitis, to inform about symptoms of Meningitis. We actively engaged with another meningitis parent couple in the Capital Region’s work to improve the diagnosis of meningitis. From there, I joined the patient ambassador group. It is a group of people who, based on their personal experiences with the health system, work to improve it. The search for meaning and the desire for something good to come out of our children’s deaths are more common than I originally thought. Parents of children who have committed suicide become the voice at the other end of the phone at Samaritans. Parents of children with cancer become active volunteers in the fight against cancer. It is not given to everyone to find something positive in their child’s death that they can use, but it was necessary for me where I was. Part of my work as a patient ambassador was to speak to newly graduated doctors as part of their clinical basic training. An hour where I went through every detail of Hans’ last moments on earth. It was tough, but it was also incredibly rewarding to see the fire in the eyes of the young doctors who were ready to go out and save the world. I gave the presentation 10-15 times over a three-year period, during which I also became a guest lecturer at the University of Copenhagen in their patient safety education. When I finally stopped with speaking and lecturing, I realized that the frequent repeated presentation of Hans’ death – with the emotions it involved – had held back my own development of my new life. Five years after Hans’ death, I had come a long way, but I needed Hans as my son to be part of my life foundation – the watermark in my life story – NOT that his death and the circumstances around it should dominate my life.
There were persons behind the mistakes that were made; there almost always will be. People who go to work with a desire to do their best and use their skills for others in society. For several (the root cause analysis found five) different reasons, the system did not work that night, and Hans should have been treated with antibiotics many hours before he finally – too late – received it. We have never been interested in who made the mistakes or what should happen to them afterwards, but we have been very engaged in figuring out exactly what mistakes were made so everyone could work on making it less likely that they would happen again in the future, putting another family through what we went through. In the past seven years, I have met many parents who have lost their children due to errors in the healthcare system. Those who seem to fare best in their quest for new lives are those who can look forward and minimize the natural urge to find a scapegoat. That’s an observation. I don’t know if it’s a useful one because I don’t know if it’s possible consciously to control and direct the anger. We directed our anger at life, fate, and the god we don’t believe in, and I think it was the best for us and I hope that others in a similar position, can also control their anger.

When we in support groups have talked about Freud’s stages of grief, including denial and detachment, it has always been as an example of how wrongly one can look at it. I primarily think it’s because Freud laid out a process that was supposed to lead the mourner through grief and onto the other side, and the fact is, that there is no other side. Every New Year’s Day since Hans’ death, I have evaluated where I was compared to the year before. Every year, there has been a huge difference; my new life has developed much more in that single year than my old life ever did. This is probably due to the natural development in the strength of the many different involved emotions. The insane shock that hits day one may never disappear, but it diminishes in strength over time. It is not binary, but for me, the first year was marked by denial. If I had been asked on my way out of the hospital on New Year’s Day 2017 if Hans was dead, I would have answered “yes.” Rationally, I knew it. I had seen him. Kissed his still warm forehead goodbye. But I also – for a very long time – went around saying or mumbling to myself, “It can’t be true.” So, I see the realization as a porous layer where the truth seeps down until the whole layer is soaked in truth. I used to break into tears almost daily the first year because Hans was a part of everything I did, and the realization had not reached all the way through, but over time, when new memories came, it took longer and longer between having to leave a meeting to go to the bathroom to cry. Naja Marie Aidt reflects in her excellent book, “When Death Takes Something from You Give It Back,” on the necessity of letting go of something one has held on to most tightly to allow the new life to have room to develop. It is so painful to allow the images in one’s head to fade and not to involve one’s dead child in everything one does, but for me, it was probably necessary to give the new life a chance. It was very helpful to be able to use other sufferers, who are further in their grief – for example, in a grief group – to help get those thoughts in order.

I have had dogs throughout my life. When Hans died, our former family dog was eleven years old. Two years after Hans’ death, while our old dog was still alive, we got a new little puppy. Of course, we are all completely innocent in connection with Hans’ death, especially our good old dog, but there was still something refreshingly innocent in getting a new life in the house, a little cheeky puppy who wasn’t even born when Hans died. Training in the local dog club several times a week, walks, and playing with the puppy – everything helped to pull me away from depression and PTSD symptoms. The little puppy, now a big and still cheeky dog, gave me so much joy and zest for life just at the time I needed it most.

My wife and I are very factual in our approach to life and everything in it. We are not believers or spiritual, but as written above, we were willing to at least look at everything. We were contacted early on by two different clairvoyants. They smelled far away of scammers, and we rejected them. But then something happened. A very good friend was also a friend of a clairvoyant, apparently a relatively famous “TV featured” one of its kind. This person did not generally offer contact with the deceased as one of the services, but he was able to do it, and he had – we were told – already kind of by accident been in contact with Hans. Our friend guaranteed that it was not a scam, which we accepted, not least because we were offered a contact session free of charge. However, I first agreed to a phone chat with him, and we had a good long talk. I was completely open about my own mistrust and my own “theory” of how “It” works. I told him that Hans and I shared an episode in his life. No one else but he and I knew the full story. Either the episode could be described, or he could come up with a specific name or a specific number, and then I would seriously have to consider if there was something in it after all. He explained why it didn’t work that way; an explanation I understood and accepted. But in the end, we ended up declining the offer of a contact session. My personal biggest argument for declining, I haven’t found much understanding or agreement on among my friends, neither among those who believe nor among those who don’t believe, but here it is:
If we assume that Hans still exists in a way where he can communicate, it is on a completely different, higher, and more spiritual level than where we are. I think everyone can agree on that. He would then have gotten the answer to many – if not all – of life’s big questions. What would I then talk to him about? He would be the advanced spaceman talking to the caveman. I conceptually wouldn’t be able to understand what he said or where he came from. In short: It wouldn’t be “my Hans.”

Most of the things we have tried as described, we have had the ability to influence. We can make decisions about one thing or another, although we can’t always predict the consequence. The absolute biggest and most important thing in our new life, however, is not something we controlled ourselves, but our new meaning of life, new values, and new life story made our subsequent actions ‘no-brainers’:

Hans’ older brother, who lives in England with his English wife, has had a daughter: our first grandchild. By agreement with our son and daughter-in-law, we sold the house in Denmark, quit our jobs, and moved to England to be an active part of our grandchild’s life. We look after her two to three days a week, while the other grandparents take care of the other days. Being able to influence her development and follow her so closely while simultaneously helping the young family is unquestionably the best thing that has happened to us since 26/3/1999 – the day Hans was born.

When I wrote an introductory post to the Child Loss’ Facebook group almost seven years ago, the chairwoman wrote back: ‘It will be good again. You will be happy again.’ It was truly impossible to imagine at that time. It was only because we had met her and others who said the same thing at a coffee evening that, despite my own feelings, I believed in it. They gave me hope because they had lost, they had gone through what we were going through, and they talked about what it looked like much further down the road.

What you have read above is the latest and very possibly the last in my blog series on my feelings around Hans’ death. For nearly seven years, Hans’ beautiful smiling face has greeted me whenever I turned my iPhone on. It’s time for the last goodbye. My granddaughters lovely cheerful smile now greets me. Hans has a permanent home in my heart and in my foundation as he has in quite a few others’. I will allow myself to grieve and reflect when I stand in front of his picture of visit his memorial bench. I am not over his death. I am not through grieving. But I have learned to live a new life without him.

And if you have just lost, or if it’s one, two, or three years ago, I just want to repeat what I was told seven years ago:
There is hope. It gets better. You can be happy again.

If you haven’t lost, but maybe know someone who has, I hope to have helped with a better understanding of this unfortunate group of parents.

ENHans, Hans

Don’t look down

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“How do you do it?”
A question I often hear when I give speeches to conferences or participate in discussions, where Hans’ experience with the Health System can be used to improve it. When I reply rather vaguely, it’s not because I don’t want to talk about it, but rather because the answer is complex and developing over time.

I did the eulogy at Hans funeral, 14 days after his death. Even though it was hard to give the speech, it was much harder to write it. When I managed to get through the speech, it was an inner power compelling me, a force stating that I would and should do it. I was helped by still being in shock and by me only superficially – on the factual level – accepting his death. It was simply out of the question, not to do the speech.

In the following weeks, Hans’ story was told again and again to friends, family and journalists. Later, when we got involved in inquests and work around meningitis and various support groups, the story again had to be told, and in a strange fashion you get desensitised  to the actual facts. It’s noteworthy, that on the occasions where the story does visibly move me while telling it, it ‘s when I mention a new detail or when I reflect on feelings I haven’t brought up before.

Complicated as it is, the answer to the question of how I can talk about Hans’ death in front of hundreds of conference participants is easier to answer than the question I ask myself: How can I keep on living? Go to work every day and plan for the future?

I constantly think about Hans and I do nothing to avoid it. His picture is on my phone and my Facebook page. Besides the candle that has been burning since 2/1/17, he has his corner of the house with photos and another collection of photos in the living room. I have some of his ashes around my neck in my silver heart and his autograph tattooed on my arm.  I visit his bench as often as I can to sit and reflect. It will soon be 23 months since he died. That in itself is surrealistic. But the realisation is complete. We have reached a point in our lives where we can think and talk about a future life. A life without Hans. It’s just so much harder when it comes to the present. When Hans died, a meteor crashed into my soul, destroying most and leaving a huge and deep crater. Fellow sufferers often describe the grief as coming in waves, and it seems to me, that those days where I am low – where I’d rather stay in bed and cry all day engulfed in self-pity – are days where I have peeked towards the crater. Occasions where I have dared to think deep – think about my present life without Hans. How I miss a 19-year old living the rest of his life. With football, fashion, girls, friends, study, traveling, music and politics. How he tried to be cool and hide his actual respect for his parents who he would otherwise publicly  find antiquated and make fun of. His compassion when he thought we needed it. How he expressed his love and humor.  I miss the problems. When I hear parents talking about problems with their teens, I envy them. I wish I had problems with Hans… and then vertigo strikes. The empty feeling in the stomach. I have peeked towards the crater and I’m forced to look away. I can’t look down, I can’t think deeply about Hans and take hold of emotions deep in my soul. I remember as a kid, we warned each other not to think to hard about infinity. The story went, that if you by some chance suddenly got your head around infinity, your head would explode! That’s kinda how I feel about Hans.  I fear going mad, if I think too deeply about him missing from my present life. I realise his death on all levels of consciousness, but I keep the consequences hidden for that part of my soul, that is still not anywhere near being able to take it. There might be a day, where my whole soul can take the truth, but until then, I am not looking down.

ENHans, Hans, Philosophy

I am not bothered with birthdays

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I am slowly beginning to understand why for the second year in a row I have chosen not to celebrate my birthday in any way. Last year, it seemed the natural thing to do. It was just ½ year after Hans’ death, and I didn’t hink I had anything to celebrate.

I am currently going through life trying to do the right things. I’ve attended a psychologist, I see friends as much as I can, go to work, volunteer with patient safety, attend grief groups, talk about my feelings – in short, I act as all experts and other grieving parents recommend. One common trait among grieving parents is, that even if we look, sound and act like we did “before”, it’s an illusion. Vi er seeking a new life with new meaning and new values, a life we hope we can learn to live and which we might even at a point be happy to live. Until then, we play ourselves. The role as myself, is a role I know really well and I’m best at playing it – I have after all, been living it until disaster struck.

Back when I saw the film The Da Vinci Mystery the self inflicted torture by the villain just seemed at filmmastic element to increase drama and mystery surrounding the person. I was vaguely aware that selv inflicted pain is about penance and identification with the suffering of Christ. Still without any greater understanding of the religious elements, there are things in my life, which have given me a greater understanding of the entire concept.

Some months ago I suffered from an illness that potentially can be extremely painful. So painful, in fact, that you kan have Opioide pain relief prescribed. I ended up taking 1 Paracetamol 4-5 times during a 1 month period. Without any masochistical enjoyment of the pain, I wanted it. It seemed to me so unreasonable, that I had watched my own son die after suffering immeasurable pain, and then I couldn’t  even stand some pain which wouldn’t kill me.

I think this is how it is with my birthdays as well. It’s like this, that every morning I wake up, I am reminded that I have survived one day longer than Hans. He should not have died before me, and thus every day, is one day too much. A birthday is a representative for the preceding 365 days, where I have survived my son.
That does not call for celebrations.

ENHans, Hans, Philosophy

How fast are dreams, how long do nightmares last?

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With all our individual differences, and DNA, it’s easy to imagine that we are all unique. That no-one else thinks, feels, believes and reacts exactly as we do. My life, as it has formed over the past 16 months, has shown me that the differences are only paper-thin. When it really comes to damage deeper than just the outer layer, we are all very similar. I’m in a group of over 300 parents who have found together over one thing: the fact that we have lost a child. It varies, but when it’s possible to breathe in a forum with so much tragedy and concentrated sadness, it is a place where we can freely communicate with each other about feelings and the things in our new life that are particularly hard . Or just a public place where you can virtually scream frustration over the injustice of life, with the assurance that everyone understands and nobody condemns. When the focal point is the loss of a child, it is truly a cross section of the population. Age, Education, Geography, Background, Extrovert, Introvert … All possible categories are represented. It happens time after time that nearly every time somebody writes about their feelings, about their loss, their struggle to move on in life and about the things that make it difficult, it’s not just me that nods in recognition but everyone else too. The feelings are the same; thoughts, despair, hopelessness … the variations only seems to be dictated by how long since you have lost, not who you are. The reactions and actions are something else – they vary, but the feelings they come from are the same.

When necessary, dreams can be very fast. I consider myself to be a rational person with cognitive abilities above average. I have been in life-threatening and critical situations several times in which I have acted calmly and rationally with an eye for the best approach to the best results. In the morning of 1/1/17 after Hans’s first cardiac arrest, where they got him back to life after 14 minutes of CPR, I recalled that I was asking the doctor what his prognosis was under the various circumstances. At that time, we needed rationality. A little after 16:00, we were in a relatives room when a doctor comes in. He goes to Jackie and me, presents himself and says, “I must tell you that we have stopped treatment.” He does not pause unnaturally before the next sentence, so it takes about half a second to continue. In that half second, I dreamed that Hans had recovered so much that they no longer needed to treat him. Although I knew the prognosis, even though he had been transferred from Hillerød to the Central Hospital with medical assistance and had further cardiac arrest just before … all that was rational and I was too aware of what the next sentence from the doctor would be and my brain could, for half a second, build a defense, a world where Hans had recovered and everything was alright … a dream, to keep the doctor’s next word from being spoken: “Hans Michael is dead.”

Then the dream burst and the nightmare began. I cannot answer how long it lasts. Rationally, I can read from the “old ones” in the group that only after 2-4 years of living a life forever affected by the loss, something resembling something one can call life emerges to be lived and enjoyed. I hear that 14 months “is no time”. I trust it’s right. I now dream of a new life sometime in the future, to replace the nightmare.

ENHans, Hans, Uncategorized

Reaction to Hans’ Root Cause Analysis

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As Hans‘ parents we are not satisfied having read the Regional Pre-Hospital’s root cause analysis over the course of actions leading  to our son’s death on 1/1/2017.

At a meeting with the emergency services in March, we were told that in a root cause analysis you ask “why” until it stops making sense, and that Hans’ root cause analysis would be conducted by independent highly competent people.

The analysis arrives at a number of causes and action plans, but the causes are too superficial and the action plans too weak.

In the analysis is stated:
“Lack of specific training in very rare but very serious time-critical acute illnesses increases the risk of missing danger signals.“
 There is however no specification as to who will receive this training. All SFVs? The doctors employed? Nurses? The associated action (using the term loosely) is: “It’s recommended that the emergency service focus on ongoing information about rare but acute dangerous diseases, e.g. by using check-lists and seasonal varied postings and in time e-learning” To call this recommendation a weak “action” is almost giving it more credit than it deserves.

The Patient Compensation Board has found it probable beyond reasonable doubt that Hans’ died because of substandard visitation and the Danish Patient Safety Authority has found the Doctor responsible to demonstrate an unacceptable low clinical standard and sanctioned her to be under supervision for a year.

The lack of training (or rather clinical competencies) by the doctors on 1813 is according to the patient compensation board a probable cause leading to Hans’ death, but it is not the root cause. For that you must find the answer to the question: How can there be clinical incompetent doctors as backup for the visitator? Who hires them and why?

The doctors associated with 1813 have a very varied background. Psychiatrists, plastic surgeons, ophthalmologists, gynaecologists, etc.  There are also doctors with no specialty and – even worse – with no significant prior experience with emergency medicine.  Due to a conflict between RH and PLO, there are no (or very few) from the most relevant specialist area: General Medicine. In the original emergency medical care system (“Vagtlæge”), replaced by 1813, the doctors were required to be specialists in General Medicine and to have several years of experience in the field. One of the mistakes committed during Hans‘s course was that the doctor did not diagnose a meningococcal infection. She could/should have done that solely on the basis of the first 20 seconds of the conversation between Hans and 1813, and should there have been the slightest doubt, that doubt would be eliminated on the basis of the photos Hans sends in showing his petechiae and purpura. This is an opinion we share with the Danish Patient Safety Authority.

The purpose of a root cause analysis is to find the root cause behind an incident; thus the name. The motive for finding the root cause is to identify possible institutional or fundamental faults so these can be corrected and future occurences of similar incidents prevented.

This is where Hans’ root cause analysis fails completely. It should, on the basis of his and probably others cases ask:

“Is patient safety in the Region’s Emergency Services  impaired due to lack of relevant specialties and experience among staff doctors?“
The burden of proof that this is NOT the case must lie with the Emergency Services themselves.

It is very worrying that in a root cause analysis, where both the initial visitating person and the responsible doctor lacked both relevant training and experience and are sanctioned for not meeting required professional standards, it is not seen as relevant to draw into question the (lack of) experience and training as a possible root cause. It hard to believe that there should be clinical objective reasons behind not looking at this and we suspect that the potential political consequence of drawing the organisation and basis of 1813 into question has spooked the involved professionals. This even more so, as it comes to light, that the chairman of the analysis team was NOT the independent outside expert we were promised, but rather the CEO of the emergency services. I.e. this person decides whether to question management decisions regarding required skills and experience that he had originally made himself. Very disappointing, but not surprising, that it never becomes a topic.

Here I also want to note, that the argument “Mistakes were also made under the old scheme” as a complete strawman. Yes, mistakes will always be made when humans are involved, but it should be obvious that they are more likely to be made by a doctor with no specialty and no relevant or current emergency  medical experience than by a doctor specialising in general medicin and current year long relevant experience.

Lacking a proper analytical approach to these questions we can only speculate and will also ask:
How many lives will the conflict between RH and PLO cost before they put their squabbles over power and money aside and give the citizens the best possible Emergency Services?

ENHans, Hans, Philosophy

Grief

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Grief is peculiar.
Exceedingly difficult to handle, in reality unbearable and absolutely impossible to describe or explain. None the less, that’s what I will attempt.

Just as ordinary pain, grief and the love it represents, is subjective as it is experienced on the basis of the individual’s identity and emotional profile. To the grieving there are various bereavement support groups that it can be helpful to join. For parents who have lost a child, there’s some comfort and security being with other who are not just grieving, but also grieving for a lost child. It can be difficult explaining to the person who has lost his or her partner or parent why we avoid general bereavement groups when special bereavement groups for parents are available. I would never claim our grief is stronger or worse than others, but I do claim it is different. You can think of it similarly as you think of love. Love for parents, partner and children can not be compared with respect to strength, exactly because they are all different in nature. The love you have for your children is infinite and not least unconditional and that’s what puts it apart from any other love. Love for parents might be similar, but it is still not the same. Here, I believe, we have a possible answer to why bereavement over a child is different from any other bereavement. It’s generally accepted, that grief is expression of love towards a party that are no longer present. And when that love is special in it’s infinite unconditional nature, it’s not so strange that the grief is too.

We are surrounded by the most wonderful people. Family, friends, acquaintances, colleagues – all have the greatest sympathy and do whatever they can to help. Often people do not know what to say when we meet, which is not so strange given there really is nothing to say. Nothing can reduce the pain, the loss or the grief. Typically, we end up with a careful “How are things?” and normally I reply honestly that things are not very well. “It’s improving”, I often say, “but very slowly”.
Occasionally I meet someone who has a desire to demonstrate that they they, to a certain degree, understand what I am going through. It goes like: “I know it’s not the same, but I also got hit very badly when I lost my…” here insert “father”, “mother”, “brother” etc.
I lost my father when I was 17 and I still have unresolved issues from my fathers death, something in connection with Hans‘ death, after nearly 40 years, I am finally beginning to discuss with a therapist. And believe me: It doesn’t even get close.
There was recently an article in a Danish paper, outlining how parents who have lost a child have a shorter life expectancy and a higher rate of sickness and injuries.  Parents die from suicide and accidents. I am in two on-line and one real-life bereavement groups. There are over 200 parents who have lost a child in the on-line groups. I have yet to meet or hear from a single parent who has not at one point or another considered suicide. I have heard of old people who choose to follow their life-long partner to the grave, but I have actually never heard of anyone choosing to follow their parent. There are no-one among the parents I have gotten to know, who in the ½ year has taken their own life, but there are a few for whom I am deeply concerned, primarily because I unfortunately possess the translation guide enabling me to interpret their comments on hopelessness and lack of meaning in life.

Grief is subjective and impossible to explain. I have attempted, well knowing I would fail, but maybe I have still provided a small glimpse into what is happening under the hood. I don’t hope anyone thinks I am claiming that our grief somehow is more important or otherwise more “right” than anyone else’s. I have just noticed – with all of us – an expressed feeling that it is different, and I have now shared my thoughts with you as to why that might be.

ENHans, Hans, Philosophy

I am father to Hans, who is dead

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Most of us really don’t want to change. Why should we? What we want, are small adjustments to the original model. We want to stay the same, only a better version.
But what happens, when something so disastrous happens, that we just change? We change from being a well-known person to an unknown.
So when you see yourself in the mirror, you recognize yourself, but the person inside you, is a different person.
– Naja Marie Aidt

When Hans died, my life changed in numerous ways and with subsequent significant consequences in the short, medium and life-long term. One such consequence, one I share with other parents in my situation, is the total destruction of the existing “I” and the associated deep existentialistic and self-focusing review of what make up important life values.

I was 55 years old when Hans died, and like most, I had a composite identity with a developed personality and my own personal type as backdrop. I was a father, a husband, colleague, football fan, amateur photographer, fitness instructor, neighbour, friend, private pilot etc. – as most other people with a patchwork of an identity. That identity existed on the background of general optimism, humour, openness and joy.

Even without rules or conventions, it is obvious that in the time right after your child dies, you are solely the grieving parent. This is universally accepted at least until the funeral. After the funeral there will be some well-meaning people around you who will have the attitude that you need to get on with life, and that it will be good for me to “do something else” and to “think of something else”. There is some truth in this, but very few understand the time horizons we are dealing with.

In the world of grieving we talk about living your life in two tracks. One forward looking track, which over time will develop into a “normal” life; a life, where I can do all kind of things and generally look to the future. The other track is the grief track. Here, I can look back and cultivate my grief – that is, my love -for Hans. What we learn from talking to other parents much further down the road from their loss is that the building of your forward track takes a long time. At least 2 years, in some cases longer and in a few tragic cases it never happens. As an indication consider the “Parent Association Lost a child” where all volunteers have themselves lost. They have a rule, that to become a volunteer, at least 4 years since your loss must have lapsed. That is, they estimate it takes at least 4 years before you can consider yourself well on the way in your new life. When after several years you learn to switch between the tracks at will, it becomes like breathing. You decide when to take a breath… unless you wait too long, and then the body forces you. Those, who master it, can chose when to cultivate their grief and love, for example by visiting their child’s grave and by that, ensure that their “normal” life is free from unwanted changes to the grief track.

What I need to understand – and thus unwillingly force my surroundings to understand – is that I am currently 100% in the grief track. This means my identity, the way I see myself, is 100% father to Hans, who is dead. Alas, I do other stuff, I work and I am happy for my work – probably mainly the fact it distracts from an unwanted reality. I act in day-to-day life as a friend, colleague, husband, neighbour and all the other stuff, but I do not see myself as anything but what I feel I am: Father to Hans, who is dead. That IS my identity.

The construction of the new “normal” life is very much about making my identity composite again – to include other elements than just the grieving. Father to Hans, who is dead, will always be a large part of my identity, but it is my objective, that over time it should not be the only thing making up my identity. I, as I were, have been destroyed. My identity and my values. This means, that part of the process, besides the construction of a new identity, also includes learning to live with and adapt to my new set of values. In the end both my surroundings and I need to accept, that I will never be anywhere near the same person I was, nor will life and relations with me be the same. What I have experienced is comparative to a personality-affecting brain damage.

The lighthouse, which have guided me through life particularly in relation to my children, has always been “happiness” and “joy”. Americans express it very well in their declaration of independence: “…they derive rights inherent & inalienable, among which are the preservation of life, & liberty, & the pursuit of happiness”. The right to the pursuit of happiness. Not happiness itself, obviously – you cannot legislate that, but everyone has the inherent right to pursue their happiness. If I, by one of my children, am asked: “What would you say, if I …” the answer is the same predictable: “If it makes you happy, it’s right”.
I too have the right to pursue happiness, but I have neither the ability nor the desire and I most certainly do not have happiness itself. I am, ½ year after Hans’ death, deeply unhappy and incapable of feeling joy.

Therefore, when I cannot find happiness or joy, the next thing to look for is any meaning. What is the meaning of my life? Is it meaning enough that others want you to be? When in our grief-groups we discuss the topic of suicide, a standard statement is: “You need to be there for your children, your partner, the rest of your family and your friends; think how unhappy they will be, if you were to die now.” I was somewhat taken back, when I read the reply from one of the mothers: “Yes, they (the family) will, but I can’t find enough meaning in my existence if it’s purely for others”. Ouch! That statement brought home to me the bottomlessness of our shared feeling of despair and unhappiness.

With other parents, I have thrown myself into the fight to reduce the number of fatalities from meningokok and meningokoksepsis. Firstly, by working with health professionals from the region, in order to change processes, actions and culture in the health system. Secondly, by promoting public information in order to reduce time before meningitis is suspected, brought to the attention of health professional and treatment is started hopefully resulting in an ultimately better prognosis.  THIS is right now the meaning I can find in life. A desperate search for meaning in Hans’ death. A reaction against fate: It just CANNOT be right that such a wonderful boy dies without some good coming out of it.

Based on messages we have received from parents, it is likely that the initiatives have already saved lives. If the most important of the changes and actions the analysis teams come up with are carried out, it is very likely it will save even more lives in the future. More young people will be able to live out their full potential and not least more parents who will live a “normal” forward-looking life without a grief track but in company with their child.

At some point in the future, I will feel that I have done all that I can. I will be satisfied that I have done Hans’ proud. At that point, what is today the sole meaning of my life disappears, and I hope I have then built up a new identity and have learned to live with my two tracks so I can again pursue happiness, wherever it may lie.

ENHans, Hans

Letter to Hans from TK

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Hey Hans

I’m writing this with tears in my eyes…
Since January 1st I’ve found it hard to express my feelings surrounding events. People often asked me if I was OK or how I was feeling, and every time I would just respond vaguely. At the outset, I really don’t think I truly realised you were gone, and therefore I could not answer questions about it. First time reality hit home was at the funeral and that was also the first time I broke down. Every day since I’ve been thinking about you and about the inhuman suffering of your family. People often talk about how death has a purpose, but those people can shove it, as I am 100 percent certain they have no idea what it’s like to lose someone you care for! I can find no purpose in your death.
The word unfair suddenly gets a new meaning and now seems a not particularly strong expression. The word can not at all express how unfair and meaningless your death is, and particularly not yours! Because Hans, you were special.

You possessed some qualities that many could learn from including myself. You always knew where you wanted to go in life, but you never went without listening to other suggestions first. You were always understanding and you listened sincerely to what other people had to say. Whether it was a discussion about politics or something quite irrelevant didn’t matter, you listened and I have the greatest respect for that.
I remember an episode around when we were 15 where we talked about spirituality and whether there was more between heaven and earth, As many know, you were an atheist, a point definitely differentiating us. You explained why you thought as you did, and I, why i did. To my surprise, you listened to what i had to say without challenging it. You told me, you respected my point of view, but that you didn’t believe what I did, and that really made me happy. I convey this episodes partly because it represents the true spirit of Hans and partly because I treasure the memory for ever.

Before this episode it has not always been as amicable. A year earlier, after I started at our school we fell out for a relatively long time, over something pretty stupid. The truth is, I can’t actually remember exactly what it was, but I do remember I was sad about it. Because the fact is, i already cared a lot about you back then. Eventually we became good friends again, and have been ever since, which I am really grateful for. Since we became friends you have (as mentioned earlier) taught me some really valuable things about life, things I’ll bring with me, so many thanks for that. Thanks for being there when I needed help. Thanks for listening. Thanks for being tolerant and understanding. Thanks for being you.

In a couple of days, the boys and I are off to Roskilde Festival and I have to admit, it will be very different without you.
Last years trip would not have been the same without you. You tied together all the lose ends, organised everyone and everything and just made it all possible. This year, we’ll all be more responsible, and we have you to thank for that. First toast at the festival will be in your honour and I hope you somewhere can feel all the thoughts we are sending your way.

I maintain my position that we will meet again – even if you disagree.

I love you Hans and you will forever be in my thoughts as will your strong and brave family.

See you sooner or later 

ENHans, Hans, Philosophy

When reality hits

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Dear Hans.

In a week it’s been 4 months since you died and almost two months since I last wrote you a letter. Is that a long time or a short time? Time. That abstract concept has gained a whole new meaning in my life. There are practically only 3 blocks on my timeline that I can currently relate to: The time before you died. The time after you died. And today … what happens right here and now. Within each of these, everything melts together, especially what happened after you died but before today. Was it yesterday, last week or last month? Not only do I not know … I really don’t care. In fact, almost all of my life awake is about you in one way or another. If I do not talk about you or think of you, I do something to actively avoid thinking about you. Not because I don’t want to remember you, but as a self-defence, a free haven, as it makes me so incredible sad every time the reality of your death hits me.

Last time I wrote you, I had a whole lot of things going on. With others I worked to spread the message of how to recognize a meningococcal infection early enough to be able to do something about it and we have been working at different levels to change the culture of our health system so that we can learn from mistakes made; Among other things, from the mistakes made when you died – mistakes that really never gave you even the slimmest chance to survive. With the help of Danish National TV, we have launched a ship and we know we have already made a difference; probably already saved a life. It gave us a meaning in life – a real reason to get up in the morning. We could, spiritually stand shoulder to shoulder with you, together fight for future meningococcal infected, so they get a much better chance than you, Mathias and Christopher ever got.

Now, with meetings, documentaries radio and TV-appearances over with, we wake up in the morning with one less reason to get up. A little less meaning in life. In that, I know, we are far from unique. In our grief-group we meet too many parents who struggle to find meaning since the most important thing in their lives died. As a moth to the flame, I still go back to the group – though it always hurts me with its huge amount of the most terrible concentrated sadness. On the question of why I do that, the only answer I can come up with, is that it’s because no one else really understands. Communicating with other people whose frame of reference is the same as my own means a lot when trying to find answers to current questions of life – not least the very big one: What’s the meaning?

For the last few weeks, I’ve been so significantly worse than before, that I feared I was heading for a “real” depression. There is a lot of overlap between the way I have felt for the last 4 months and the classic indications of depression, but my state of mind is changing. Last time I wrote you, I was not feeling well. The intensity of the shock was decreasing, the pain was constant and the intensity of the loss was increasing. The intensity of all these emotions did however very from day to day – I could have relatively “good” days once in a while. Compared to how I feel now, it’s as those feelings then were almost superficial. At the moment I feel locked in a deep dark hole. My psychologist thinks, for various reasons, that I am not suffering from a depression as such. In the present, of course, it doesn’t really matter; I feel like I do, no matter what I or a psychologist call it, but I can easily see that if in the middle of everything I was going to have to treat a real depression, it would not make life less complicated.

Recognition is not binary. Recognition exists on many levels. Had anyone, on the evening of January 1st, 2017, asked us if you were dead or alive, we would answer that you were dead. The lowest level of recognition is the factual. We were also then in the deepest shock, so on all other levels there was no realization. As the days went by and as they became weeks, I realized on several levels that you did not exist in the present. You were dead – I couldn’t call you, I couldn’t watch you play football, I could not embrace you … You. Were. Not. There. It is an indescribably hard and painful realization, but for my part, it was a piece of cake to take in, compared to the next, to what I am experiencing now: The recognition that you will not be there in the future. It’s as if you continue to die, again and again. First, you die in reality. Then you die in the recognition of the present. Next, you die in the future – and that happens every damn day I wake up to face it.

As you may know(!), I have been contacted by a clairvoyant who tells me he has been in contact with you. You and I were both equally sceptical about that kind of thing before you died. Before I talked to him, I had the perfect control question. No matter how sceptical I am; If you answered that question … I would know you, or some element of you, really were somewhere in some form. Unfortunately, “it” does not work that way. I have nevertheless opened my mind and thought: OK, it could be right. Perhaps the energy of life is permanent and independent of the body. Then came the considerations: What would I get out of communicating with you? If you exist on another level, a level, I as mortal, simply do not understand, how can I then understand the communication that necessarily has a frame of reference in that plane? What if you tell me that the existence of that plane is so much better than the existence on the earth … why then wait for death? Why not just end this life and join you on your plane? Having considered this and many other questions I have, all in all, decided not to contact you through a medium. “What if Hans really has something important he wants to tell you” says a good friend. I can only say – you are/were the most resourceful person I know. If you have a message you think is important, then you’ll find a way to get it communicated to me. Possibly by contacting the same medium and ask him to pass on the message. Oh, and while you are at it, if at the same time, you could indicate the answer to that secret only you and I know, that would be really cool.

So what happens next? My love for you is as painful as it is strong. I will continue to try to use it constructively in my life while learning to live that life without you. I have yet to even get close to succeed. It seems to be an infinitely difficult task right now. At the same time, I will not forget my love for your brothers and your mother. For my sister. For friends. Unfortunately, it is also painful to see not only their grief over your death but also the grief of our inability, in the shadow of your death, to show and celebrate our love for each other.

Dear Hans. Trusted friend. My dearest little treasure. Hopefully, it will get better and easier over time. Time. That abstract concept has gained a whole new meaning in my life. Time hardly heals all, and in any case it works unbearably slowly.