One year. One whole year. I just can't believe it.
A whole year in which we could have had fun.
When I visited her in November of 2017, while she was in the hospital, she told me she was looking forward to a vacation at our place.
She talked about chilling in our pool, going to Chicago and just relaxing. Since her doctor told me to be very positive, because my sister really needed that, I went along with her dream. Of course hoping that she would be able to visit us during the Summer, but meanwhile trying to prepare for the worst.
It's so overwhelming, to think about everything that happened after I had to leave her, to fly back to the United States.
Although I am still very thankful that I made the decision to visit her, I wish I could've stayed longer, could've done more.
She must have felt so terrible in her last weeks, in that horrible other hospital, where we all hoped she would have the best chance of surviving her disease, because they had 'the expertise'. I am not sure what they were experts in, but certainly not in humanity.
It turned into a horrific experience, one that I would not even wish upon my worst enemy.
Her last evening and night must have been unbearable. And there was nobody she felt understood by. That's probably what still gets me the most. How could they just ignore (well, they gave her the usual Dutch medication for people who are exaggerating in the eyes of the doctor: paracetamol) her pain level of 10? How could they just let her wait until the next morning? And how could they, even at that time, while the doctors made their rounds, and checked upon her, ignore her pain? Or in my opinion, ignore her as a human being?
How could it happen that they didn't even take her seriously enough to examine her properly? Why didn't they test her blood levels, like they did every evening? Why didn't they order a scan earlier?
In fact it already went wrong the afternoon on the day before, when the intern pushed the camera way too hard into her fragile body, which caused internal bleeding. Internal bleeding which they started doubting about the next afternoon, after doing her standard blood tests almost half a day later. Only when her blood results were so far off from normal, did they order a CT- scan. Not even an emergency CT-scan, just a 'regular' one. When she later collapsed, they finally decided to take her seriously, and turn it into a emergency CT-scan.
When they performed the scan, they must have realized how bad it actually was.
I am still wondering what the doctors thought, when they found out what was happening inside my sister. Did they ever blame themselves? Did they reflect on their behavior? I truly hope so.
After they found out, they did all they could, unfortunately, that wasn't enough, since her body was already weak to begin with, and a whole afternoon, evening, night and morning of internal bleeding probably didn't help either.
When I found out later on that they even restrained my sister while performing all of these surgeries, I felt so powerless. So helpless.
My sisters last hours were simply horrible. She must have felt what was going to happen. She must have been so frightened.
My sister lost her battle, while feeling all alone, in a hospital that she despised, with people surrounding her that she didn't know.
When the doctors knew there was nothing more that they could do, they called the family to be with her. At that point she wasn't even able to breathe on her own anymore.
I watched everything happen, from my phone screen, while sitting on the stairs of our house in the U.S.
I cannot describe how that felt. When I saw her, lying there, in the white hospital bed, I knew she was already gone.
She passed away very quickly, after they shot down all the machines. Those machines were the only things still keeping her 'alive'.
People always say 'everything has a reason', 'you get what you deserve' and 'You don't get more on your plate then you can handle'. I used to be one of those people. Not anymore.
I don't believe in these sentences anymore. Sometimes life just isn't fair. I keep looking for meaning, but after a whole year, I still haven't really found it.
The passing of my sister taught me a lot of lessons though:
- Be a good listener to (the) people (close to you), even if they don't ask for it.
- Look for the reason behind behavior, don't just judge the behavior.
- Everyone fights their own battle.
- A lot of people listen to you for a few days or weeks, after that, you don't hear a thing. They just let you drown (this might be related to the 'everyone fights their own battle thing').
- Some people surprise you by being there. People you never expected it from.
- Dealing with people who are mourning is hard for most people, because it (subconsciously) mirrors to them that life is ending.
- In grief you might renew relationships that were broken before, because you share the same story.
- Some people are really good at pretending to feel fine, this doesn't mean they actually are. Don't just ask what they need, show your love by simply being there.
- The closest people can give you an extra kick in the butt, because they don't understand what grieving /mourning looks like and decide to chose their own path.
- Mourning takes a lot of time.
After writing all of this down, I realized that it sounds rather negative. Unfortunately, this is what I have experienced. I don't think that people respond like this on purpose, but I do think there's still a lot to learn for a lot of people about mourning and how to help people who are mourning.
There might be a job for me here. I might need to specialize myself in helping the people surrounding the mourning person, teaching them HOW they CAN help.
Here's to hoping that the staff of the hospital where my sister stayed at, did their share of reflecting too. We had a meeting (me in the middle of the night, from the U.S.) with the professor and doctor who were responsible for everything. That meeting was very disappointing. All they did was trying to cover everything up, afraid that we might take further steps.
Months later, my mom did take further steps, she wrote a letter (that I revised) to the hospital and asked for a new meeting, with more staff. She recently (yes, almost a year later) went back to the hospital and had a better feeling after this meeting.
Hopefully this meeting has accomplished the only thing that we, as my sisters family, found useful: that nobody else gets treated the way she was treated. That their communication would get better and more emphatic.
I haven't read the summary of the meeting yet, hopefully it will satisfy me too.
If you are dealing with loss at this time too, I highly recommend reading the following books (both written by Belgian Clinical Psychiatrist Manu Keirse):
- Helpen bij verlies en verdriet - Een gids voor het gezin en de hulpverlener.
- Kinderen helpen bij verlies - Een boek voor al wie van kinderen houdt.
(Sorry both are not translated in English, as far as I know).
And I highly recommend to take the time to feel your feelings. To go right through the mourning, instead of putting it aside. It is a lot of hard work.
I have felt very lonely this last year. I know part of that was the way I was handling things. I kept most of it to myself. I subconsciously chose to mourn inside myself, instead of sharing it with others. This is who I am, I am a loner. It was the only way I could handle it. It probably wasn't always easy for the people surrounding me, but I hoped they would get it.
Unfortunately, not everyone did and my way of mourning and the way other's perceived it, had very difficult consequences. Consequences that are still leading to even more mourning. Feeling even more lonesome and betrayed.
So, here I am, one year after the passing of my sister, and I have to re-invent my whole life. Myself. Again.
Everytime when I think that there's probably not a whole lot more that can be thrown at me, there is. The question 'why me'? is not very helpful. I haven't really spend time answering that one.
The question 'why?' might not really help either. The question: 'What can I learn from this and how can I become a better person than I was yesterday?' is a very important one to me.
So, here's to writing down my goals, because I have read multiple times that writing or speaking about your goals will help you to achieve those goals:
- I want to become a grief/mourning specialist, to help others deal with mourning (from others/themselves) better.
- I want to start working with a group of grieving / mourning students at the High School that I work at, to help them out.
- I want to learn how to share my own needs better, in order for others to be able to help me better.
- I need to be more connected to my friends, the people who really care about me and know me.
Or as Manu Keirse says it:
The most important thing you need to know about mourning is that it never ends. You simply learn how to live with it. You keep working on it, and you keep trying to reconcile. Death ends a life, but it doesn't end the relationship.
Mourning isn't possible without love.
You don't need to talk to comfort someone, lovingly being silent, while mourning with someone often helps more.
Don't talk about solutions, because there is no solution to be found.
What helped me, was writing everything down. I have written a whole book about it.
If my book will ever see the light of day? Time will tell.
As a start, I set up a new FB page, called: 'Good Grief'.
Are you mourning too?
If you want to, feel free to share your story in the comments, because 'gedeelde smart is halve smart', as we Dutch say. Or use one of the other ways to connect with me:
Sharing = caring, thank you!
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