Category Archives: Hans

Don’t look down

“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.

I am not bothered with birthdays

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.

How fast are dreams, how long do nightmares last?

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.

Hvor hurtige er drømme og hvor længe varer mareridt?

Med alle vores forskelligheder og med skæven til DNA’en er det nemt at bilde sig selv ind at vi hver især er helt igennem enestående. At ingen andre tænker, føler, mener og reagerer præcis som vi selv gør. Mit liv, som det har formet sig de sidste 16 måneder har vist mig, at forskellene kun er papirstynde. Når det virkelig går løs, når skaden er dybere end den yderste lak, så er vi alle meget ens. Jeg er med i en gruppe af over 300 forældre, der har fundet sammen omkring én ting: Det at de har mistet et barn. Det skifter lidt, men når man er i stand til at ånde i det forum med så meget tragedie og koncentreret sorg, så er det et rum hvor vi frit kan kommunikere med hinanden om følelser og om de ting i vores nye liv der er specielt hårde. Eller bare et offentligt sted, hvor man virtuelt kan skrige sin frustration over livets uretfærdighed, ud – med vished om at alle forstår og ingen fordømmer. Når samlingspunktet er tabet af et barn, er der i den grad tale om et tværsnit af befolkningen. Alder, uddannelse, geografi, baggrund, ekstrovert, introvert … alle mulige tænkelige kategorier er repræsenteret. Det slår mig gang på gang, at stort set hver gang nogen skriver om deres følelser omkring deres tab, deres kamp for at komme videre i livet og om de ting, der gør det svært, så er det ikke bare mig der nikker genkendende, men jeg kan se, at det gør alle andre også. Følelserne er de samme; tankerne, mismodet, håbløsheden… variationerne er dikteret af hvor lang tid siden man har mistet, ikke hvem man er. Reaktionerne og handlingerne er noget andet – de varierer, men følelserne de kommer fra, de er de samme.

Når det er nødvendigt, kan drømme være meget hurtige. Jeg regner mig selv for at være et rationelt menneske med kognitive evner over gennemsnittet. Jeg har flere gange i livet været i livsfarlige og kritiske situationer, hvor jeg har ageret roligt og rationelt, med øje for den bedste tilgang til det bedste resultat. Om formiddagen den 1/1/17 efter Hans’ første hjertestop, hvor de fik ham tilbage til livet efter 14 minutters genoplivningsarbejde, erindrer jeg at jeg roligt spurgte lægen hvad hans prognose var under de forskellige omstændigheder. På det tidspunkt havde vi brug for rationalitet. Lidt efter klokken 16:00, står vi så i et pårørende lokale, da en læge kommer ind. Han går til Jackie og mig, præsenterer sig og siger: ”Jeg skal meddele at vi har stoppet behandlingen”. Han pauser ikke unaturligt før næste sætning, så der går vel ½ sekund før han fortsætter. I det ½ sekund nåede jeg at drømme, at Hans var kommet sig i så høj grad, at de ikke længere behøvede at behandle ham. Selvom jeg kendte prognosen, selvom han var blevet overført fra Hillerød til Riget med lægeambulance og havde haft flere hjertestop lige inden… alt det var rationelt, og jeg var alt for bevidst om hvad den næste sætning fra lægen ville være, og min hjerne kunne i ½ sekund nå at opbygge et forsvar, en verden hvor Hans var kommet sig og alt var i orden… en drøm, for at holde lægens næste ord fra livet: ”Hans Michael er død”.

Så brast drømmen, og mareridtet begyndte. Jeg kan ikke svare på hvor længe det varer. Rationelt kan jeg læse fra ”de gamle” i gruppen, at efter 2-4 år begynder livet, selvfølgelig for evigt påvirket af tabet, igen at ligne noget man kan leve og nyde at leve. Jeg hører at 14 måneder ”er ingen tid”. Jeg stoler på det er rigtigt. Jeg drømmer om et nyt liv en gang i fremtiden, til at erstatte mareridtet.

Aussie! Aussie! Aussie!

As Rainman does, we find that our favourite airline is Qantas, and we flew with them from Tokyo to Brisbane. We had applied for our eVisas from home (they are free) and again got through the airport without any problems. Outside customs there are counters where you can buy sim-cards, and since we were going to be in Australia for a while and wanted to access social media on the move, we bought two 10GB data cards with unlimited national calls and SMS for around AU$ 25,- each.

After a short car drive, we arrived at our base in Ormiston, part of Redland City and close to Cleveland, a small suburb outside Brisbane. With a swimming pool, sundeck and day temperatures in the mid to late 30C, we were all set for a long period away from the cold, grey and wet Denmark. We unpacked essentials, rested and then ventured into Brisbane to meet up with the remaining family for a drink at the Riverbar, before a nice meal at the seafood restaurant Jellyfish in the best possible company.

We were still waking up relatively early every morning- typically between 4 and 5am. It gave us the opportunity to work a little online or to watch some of the Premier League football games live! It was initially a strange feeling watching football at 5 in the morning – over a cup of coffee rather than a beer, but I quickly got used to it.
It was also good to get a swim in early. At 7am, the neighbour’s dog was let out, and he objected loudly to the fact I seemed to be drowning whenever I swam lanes, so that was best done before then.  The day after we arrived, we went to one of the many fitness centres located in and around Cleveland. As we knew we were going to be spending some time at the Gold Coast too, it was important to find a centre with branches both places, and we had chosen GoodLife, as they also seemed to have a substantial number of Les Mills classes on offer, not least BodyCombat. I always enjoy taking BodyCombat classes at new places when I am travelling. Obviously, the whole concept is for the class to be familiar (similar) no matter where in the world you take it, but there are always local variations in style and presentations that can inspire to improve my own instructing. A couple of differences I noticed: In Australia for IP reasons, they can’t use the original tracks but have to use covers. That makes the music OK for the purpose, but not as good as the originals. Class exercise always draw more women than men, that’s true for Denmark too, but even more so in the classes I took in Australia. I managed to do six BodyCombat classes in the 3 weeks, and half of the time, I was the only man out of 30+ participants. Other differences were very BodyCombat technical, so I will spare you. The GoodLife fitness centre chain are open 24/7 – they have staffed hours, and when unmanned, members let them self in with a key-card. That seemed to work pretty well. The walk from Orbiton to Cleveland took us through some woods in which, there were known to be koalas. This time, however, our third trip to Australia, we never saw a single koala. Granted, we saw many other animals and we did not exactly go looking for them, but still… Cleveland Marina is a clear indication this is not exactly the redneck outback. Many big and beautiful yachts moored at the piers, and nice cars were parked, waiting for their owners returning back from their trips at sea. Coffee shops serve full breakfasts, all kind of coffees and a wonderful range of smoothies and milkshakes, and on a couple of occasions we made the walk to have breakfast out.

We went on a day-trip to Stradie (Stradbroke Island). A 1-hour boat journey across the bay, and we were ready to explore the island that with its shops and cafés had a kind of Maui/San Francisco feel about it – relaxed. We took the North Gorge Walk from which you at all times had an incredible view over the ocean or the gorge. On the two-kilometre walk, out and back, we saw sharks, rays, dolphins and turtles. We also saw a number of birds sitting in trees and a few eagles in the air probably waiting to make them lunch. Speaking of which, there are great places to eat and drink around Point Lookout! We had however brought our own lunch, which we enjoyed at the picnic tables by Brown Lake. Brown Lake, towards the west of the island, is big enough to have a beach, and we started what we have since made a regular ritual of writing Hans’ name in the sand as we are settling down.

Not all islands accept their island fate. Take King Island visible from Wellington Point. that daily fight to retain contact with solid land. Another day, while the tide was out, we walked on dry sand all the way out to the island. It’s worth paying attention to the tide table. Do not be a science denier; it might still work for the 45th US President, but trust me, the tide will come in, when it is well and ready to do so, and a trip wading back to land in shark-infested water with potholes to the right and left of you, is more excitement than I would volunteer for. Therefore, we stayed only a short while and made it back to Wellington Point and an ice-cream well before the tide came back in.

We would be celebrating the Christmas Holidays, Australia style, but on Christmas Eve, when Scandinavians have their main celebration, our hosts had put up a full Danish Christmas Dinner, complete with all the “right” food, including rice pudding. The fact that I got the whole almond and the prize, was probably due to the fact I personally ate at least half of the whole bowl – even if it took me till boxing day to complete the task. The evening was just one of hundreds of efforts everyone was making to ensure we had the best possible stay. We are so grateful for having friends and family like that!

The stay in Brisbane incorporated a stag night! 16 guys, starting out with lunch, going on a pub-crawl only “pausing” to take in a Brisbane Roar football game before finishing off the pub crawl in style… what could go wrong?  Well not a lot, really. Having said that, though, I have, at a ripe old age of 56, been to quite a few bars, clubs and pubs in my life, and I’ve managed to avoid ejection. During the ½ pub-crawl before the football game, we managed to be asked – ever so politely, mind you – to leave. Twice! I think it was mainly for being loud – there were some of the guys with football referee whistles, the blowing of which for some inexplicable reason seemed to annoy other patrons of the bars. The football game, frankly, was awful. Not only not played very well by either side, but Brisbane Roars were behind 0-2 at half time. The best thing about the game was the Roar’s Danish player Thomas Kristensen who after the game brought a signed jersey for the stag and posed for pictures with some of the inebriated company. What a trooper!

Outdoor sports is a big thing in Australia, the weather and the country lend itself well to activities such as football, rugby, golf, swimming and sailing. Being a Commonwealth country there’s also cricket – a peculiar Marmite sport; typically either hated or loved. A tournament called Big Bash has gained momentum. Based on 20-overs games with a lot of extra activities and entertainment thrown in, it has succeeded in appealing to the younger generation who, I otherwise suspect, would never have been caught present at a cricket game. We went to the Brisbane Heat v. Sydney Thunder game. Due to rain it was reduced to 17 overs, Sydney were batting first and managed a 4-149 against which Brisbane seemed to be struggling until the very last over, where, through a couple of great hits, they won the day and the game, 4-153. The game was OK for result excitement, though I don’t think I am going to make it a habit attending cricket games. One section in the stands was a pool, making it possible to watch the game while floating in a swimming pool. Can’t see it catching on at my local football ground.

While in Brisbane we had 2 embedded holidays. We spent around a week at the Gold Coast/Surfers Paradise and later a couple of days in Hunter Valley, New South Wales. Those trips will be covered in the next installment of my travel log.

We had brought ½ of Hans’ ashes with us to be scattered over the ocean. The plan from back home was to do this on January 1st 2018 – exactly a year after we lost him. New Year ended up being very emotional, a marker in time where it was natural to evaluate what we had been through in 2017. It goes without saying, that the year 2017 was the worst year of our lives. That is, our lives turned from ordinary happy lives before 2017 to disaster from New Year. Having said that, it was the life crushing devastating event of Hans’ death, which made it so. The year itself, oddly as it might sound, was remarkable in its own right. We experienced such an outpouring of love and support, not just from old and close friends, but also from every corner of our network. Many of our friendships have been cemented and we have formed new strong friendships. There is a lot of good in a lot of people out there. When on New Year’s Day it came to the crunch, we couldn’t muster the strength to do it. In the end we left it to the morning of the last full day, we were in Australia. We were up before sunrise and went to the Ocean outside Wellington Point. As we stood with the urn, taking in the spectacular sunrise, a sea eagle made a casual swoop past us, getting a lot closer than I have ever experienced them. We scattered the ashes, and stood for a while as another milestone was passed and then made our way back for the point. Astonishingly, the sea eagle from before came back and made another close fly-by.

The whole Australia trip with Hans’ ashes would always be very emotional, and it was. We had feared coming up to the 1st of January and the scattering of the ashes. As expected, it had been hard and emotionally draining, but we also felt somehow relieved. We were now past first occurrence of every special day: Birthdays, Christmas, New Year, Wedding Day, death day… It had not been easy, but we were through it. As we packed our suitcases and headed towards the airport for the stop in Vietnam, it felt it would from now on be somehow easier working on establishing a new life, a new future.

Reaction to Hans’ Root Cause Analysis

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?

Grief

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.

I am father to Hans, who is dead

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.

Letter to Hans from TK

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