I’d like to talk a bit about quite a private subject that I’ve given a lot of thought over the years. In fact, it concerns me in my everyday life. Sorrow, grief and regret. Here’s my take on it.

The single most defining element of my life, is (unfortunately) Usher Syndrome. This extremely rare genetic disease that I suffer from, is a thing that defines me even if I don’t want it to. The day I received the diagnose eventually changed my life forever and also my perception of a great many things. The nature of sorrow is one of them.

An eye affected by Usher Syndrome's eye disease. The white-yellow part with the black spots is the retina with dead cells.

I’m sure those of you that are yourself living with a permanent and serious diagnosis have an idea of what I speak of when I talk of sorrow. Yet, for you that don’t, I’ll try to explain.

Grief That Won’t Let Go

As human beings, loosing things we care for is a part of life. Most of us will have to endure parents and other relatives dying during our own lifespan. Also, we will see friends die all too young from stupid accidents, drugs or even war. Loved ones can and will forsake us for others and leave us scrambling in the dust, trying to cope with rejection and sometimes deception and trickery of the very worst kind. When someone we care for, is fond of and love, leave us, we feel sorrow and we grieve.

To carry on reading this post, it is important to realise that all sorrow is basically the same, mourning someone who dies, or a partner ditching you, is not much different. The fact that something is gone from your life is the key element, not what or whom. When your whole life get turned upside down from a serious diagnosis, you often have to change focus and plans in a quite drastic manner. It’s not uncommon to experience sorrow-reactions in such situations. Sorrow might be great, big and black, clouding everything, or the more manageable kind that leaves us sad and hurt, but still alive and well. No matter what flavour, it’s still sorrow.

Sorrow may lead you to react with denial, guilt, anger and self-destruction, it may render you incapable of functioning in daily life and kick off a serious depression. In some cases the symptoms of the sorrow even match several of the criteria for PTSD (Post Traumatic Stress Disorder – “shell shock, war weariness”). The psychologists have been researching sorrow for many years, and they probably understand sorrow better now than 20 or 30 years ago. Still, I’ve done a little reading into the subject, and it is somewhat frustrating, because primarily existing literature and articles about sorrow, deal with sorrow caused by loosing someone, not something. The techniques suggested for treating people with complicated sorrow don’t always seem very viable for dealing with “my kind”.

Just won't let go..

Regardless of strength and psychological know-how, most kinds of sorrow we experience in life, are the kind that eventually passes with time. Time heals all wounds they say, and they are mostly correct. Yet, even when realising that sorrow is sorrow, regardless of cause, there is a crucial difference between sorrows, at least in one aspect. There is one kind of sorrow never really leave you. I’m talking about the kind of sorrow you are constantly reminded of because you have to live with the initial cause of the sorrow for the rest of your life. Permanently nagging you, eventually getting old and worn, but still and always there. Sorrow that won’t let go.

Handling It?

The most important thing though, is not that you feel sorrow, but how you cope with it. You can lock it up, ignore it, drug yourself with alcohol or other unhealthy substances, but it will still be there. That leaves you with little choice except trying to find some way to actually face it and live with it. There is no manual, no “Coping with sorrow for Dummies”,  and even though there are others living, facing and dealing with similar reactions, they are few and far between. Also, they are often busy enough with themselves. The fact that grief is extremely personal and often hard to explain literally complicates the matter.

Personally, I’ve found no easy way out, though, I’ve tried. I’ve had progress, I’ve got somewhere and I feel wiser today, but nothing I do can change the fundamental facts of my medical situation. In a psychological perspective, maybe one day I will be able to say that “I’m OK” and really mean it, but I can’t see it happening anytime soon. You’ll see smiles on my face and hear me laugh, and I can for a moment feel all right. Yet, there’s always that shadow, the imprint a severe diagnosis can leave on a person.

I’ve talked to psychologists about this. Sorrow is something that often pop up in the line of work that psychologists do, so they have training and experience in dealing with the subject. Still, the funny thing is, they are not really much wiser than I am. Techniques for handling sorrow might be to try focus on something ahead and get people moving, or role-playing conversations with the deceased and visiting a grave. But, what is there to focus on for someone with a permanent diagnosis? What does it help to say “time heals all wounds” and other similar and often used sayings?

My Way

This is no doubt a difficult and complicated subject, both for those it concerns directly, as well as those that live with them and try to help them. Sorrow can manifest itself in many forms and shapes and there is no all-round solution. In the end it’s up to ourselves how to deal and live with it. Some find comfort in religion, others in therapy. Personally I’ve never felt much for religion, I’m an atheist and happy with my choice. I believe in humanity and our chance and ability to control our own lives, despite the chaos. Here, at the core of my personal beliefs I have one thing that I find helps me.

For me a simple and unmistakable fact always remains. I am a human being. That means I’m able to adapt to and cope with the extremes, if necessary. I know we’re a species that have climbed to the position we have on this planet because we are able to adapt to almost anything. We might not have a good time, yes merely even exist, but we have a strength within, called the “will to live”. This is the result of thousands and thousands of generations of survivors and everything comes together in one single fact, we don’t want to die. When we know and realise this, we’re once step closer to coping with our lives, and sorrow too. It’s up to ourselves to use our massive reserves of inherited potential, all the ingenuity, skill, understanding and more than anything, the will that we possess, to define and change our lives.

This is all on a psychological level. We, ourselves possess the ability to heal ourselves. Whatever means you seek to use to help yourself, therapy, beliefs, drugs… They are just things that may or may not get you to a point where you, yourself, use your mind to your own good. They are not the solution, you are the solution.

This is my way, I’m sure. It doesn’t cure the regret in my heart, but the knowledge and understanding gives me no option but to carry on. I wish to live, breathe, love, drink, eat, learn, laugh and cry, and the pain will put a damper on it, but it won’t stop it. Other people with other beliefs will not find this suitable at all, yet, I can only vouch for myself. Even then, I’d like to suggest you try and taste the old saying “when there is will there is a way” and think a bit about it.

Have you experiences with sorrow that you’d like to share? Feel free to use the contact form bellow. Anonymization is fully possible. Otherwise commenting this post itself is an option too.