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.