Dear Silja: My sister, a poorly researched disease, and a death that honors life

By Birte Viermann

Silja is a joyful person and has her own special ways of making life magical. She has wonderful friends, a successful career and diverse interests and hobbies.

She falls ill with ME/CFS* and bit by bit has to give up on all of of the above. In the end, she decides that the only wholesome step she can take next is to end her life.

This is the story of how her sister Birte and her family and friends deal with Silja's last weeks and her death. It is a story of care-taking, grief and pain, but also one of community, deep connection and - in the end - love for life.

*Myalgic encephalomyelitis/chronic fatigue syndrome is a severe multisystemic disease that is quite common, but poorly understood.


Keywords: ME/CFS, LongCovid, PostCovid, caregiving, assisted suicide, death with dignity, grief, death, mourning, personal development, relationships

• Language: English
• Publisher: Books on Demand
• Release date: Mar 20, 2024
• ISBN: 9783758339110

Birte Viermann

Birte Viermann is a psychologist, change coach and bodyworker. "Dear Silja, ..." is her first book.

Book preview

Umph. Poured out and smacked on the floor, sticking. I try to get up, but the floor pulls and drags me down almost violently, like a father who pulls his daughter to the floor to give her cover during a bomb attack. It does not let me get up. Pulls me down as if it were for my own good. Always fighting a resistance. Annoying. Torturing, tugging. I no longer have a big voice to raise against it. My but I want it to be different cannot be heard in the distance anymore and increasingly chokes in my throat. I have less and less strength, like a withering flower. A few dry petals have already sailed to the ground. I surrender to the process. I always do whatever is still possible and wait for the things that are to come. I don't even wonder anymore how it will continue, because it always does. But otherwise, not much happens anymore. And as powerless as I am now, it doesn't even seem bad to me. Reaching for my keyboard, I feel how I'm gradually losing my strength here, too, and that soon I'll be closing the laptop. Maybe that's how it will be. A life that becomes quieter and quieter, taking place at ever smaller intervals and withdrawing more and more from visibility, from audibility, until it eventually falls silent.

Silja Viermann

(Translated from German)

Contents

Appendix: Silja's farewell letter

Rose petal – Silja Viermann

Dear Silja... online

Information

1. ME/CFS

2. Grief

Shall I?

A butterfly on my finger. The wings delicately folded together. This world of cells and structures that accomplish the highest feats – flying, a thing a human could never do. It folds down one wing and looks like it can't decide whether to fly or stay. All right, my butterfly, for a short while you may still play this game, sit here as if my hand was eternal, and then you take off. Just take off, unstoppable, and you go for it. You gooooooooooooooo

Silja Viermann

(Translated from German)

(You can find more texts by Silja at birte-viermann.de/LiebeSilja.)

Dear Silja, April 2022

– That's got to be the name of the book.

I have to write about what is happening to us this year. Your illness, how I feel about it, how life changes around it, your wish to die.

Writing helps me to better cope with it all – and now I know that I have to write this to you.

You can no longer speak, and barely listen. Months ago already, you cried when realizing that you could not say all the necessary things any longer – and certainly not everything you would want to say. As if the disease was slowly suffocating even this tiny amount of self-expression.

For months we have only been communicating about bureaucracy and the practicalities of your care.

The last time we talked about anything else was three weeks ago, and it was about euthanasia. For five minutes.

The last time we actually just chatted about trivial things was probably New Year's Eve, when you were doing surprisingly well for an hour.

Sometimes I don't know if it's worse to always notice in retrospect that something has probably happened for the last time, or if it would be harder to be aware of it in that moment. So far, I've always just lived in the moment and enjoyed whatever was possible. I think that's basically a good thing. But then sometimes, it just hits me afterwards.

That's why I want to tell this story. I don't want to just be the organizer of your life (and your death), and then all the people who love you scatter and deal with their pain by themselves.

I want to tell our story, a sisters' story.

I want to write down what I long to tell you, but cannot.

I hope that you'll help me cope with my grief in this way. That through writing to you, I will know that we are doing this together, and that you will be visible and tangible once again. I want to feel you in this text, and for others to see the sister I had.

I want to write about different things.

What our everyday life is like.

How this difficult situation brings along with it wonderful gifts and people.

How I experience the illness.

How taking care of you changed me, and you, and our relationship.

Who you are, and who I am, and the story we share.

What you have meant to me and my life and when I will miss you and hope I will not lose you.

I hope for all of this to find a place here.

And for it to give me peace, and you too, somehow, in some way.

Dear reader,

What is this book about?

I have accompanied my sister Silja on her journey with the serious but little-known disease ME/CFS over the last few years.

Silja was ill for almost ten years, and in the end needed help and care 24 hours a day. Her condition constantly deteriorated until there was no quality of life left and so she finally decided to end her life through assisted suicide.

So much has happened in this last year – for Silja and for all the people around her. Dealing with the issues of nursing and illness has been intense, the relationship I had/have with my sister has transformed a lot, and so has my relationship with life and death in general.

I have to (and I want to) write about all of this here because it helps me, and because so many of these aspects are underrepresented in everyday life in our society – even though we will all die, and even though most people have already lost loved ones and sometimes accompanied them and cared for them.

Through all the difficult things I have experienced in recent years, it has felt incredible to always be supported and sustained by people who were close, and sometimes not even so close, to me.

It is my hope that this book might provide a bit of support to others, and that it will invite us to talk to each other about these difficult and actually ubiquitous topics.

There are two more things I want to point out:

In essence, this book is about my personal process during this very special time in my life.

Sometimes the disease ME/CFS is mentioned, an illness that is so little-known that treatment errors are common and patients have to suffer even more than they anyway do. If my book contributes a little to spreading knowledge and thus creating more empathy with the people who live with this condition, I would be pleased.

However, this book is explicitly not a medical document, and all facts mentioned are based on my memory (which can be wrong) and the individual case of my sister. There is no general information on ME/CFS here.

Similarly, when I refer to paperwork, treatments, or administrative processes, this only describes Silja's story and is not meant to be a guideline for others.

And now, welcome to this book about my sister and what made her the beautiful person she is. This is my farewell to Silja.

For a little while longer, this book will be a home of sorts for me and my grieving process.

And then, I hope it will touch, help or inspire you.

ME/CFS and how I came to be my sister's caregiver

About ten years ago, in her early thirties, my sister Silja showed the first symptoms of ME/CFS without knowing it at the time.

ME stands for myalgic encephalomyelitis, CFS for chronic fatigue syndrome. ME/CFS is a severe multi-system disease that can affect virtually everything in the body: nervous system, cardiovascular system, metabolism, hormones, immune system ...

The course of the disease can vary greatly, but in my sister's case it was a constant downhill struggle.

Over the years, Silja had to say goodbye to virtually every area of her life – at first, she was sick more often, she had to work less and cut down on leisure activities. Then, at some point, she had to give up work altogether, she was completely housebound and could only have company for short moments. She was no longer able to take care of herself, go to the bathroom, or to do anything except rest for long stretches of time. She could not read, write, watch television, or surf the Internet anymore. She was less and less able to speak, until it was impossible to do so on most days.

She constantly had various pains and ailments such as migraines, palpitations, abdominal cramps, a sore throat, muscle aches, tinnitus and lots more.

In all these years, she has always tried to understand her disease and behave in the best way possible, trying out endless treatment options and changing every aspect of her life in the hope of bringing about improvement.

During the last two years of her illness, she involved me a little in her daily life. Most of the time she didn't want to burden anyone and handled everything herself, which was another huge effort for her. In the last year, I was responsible for her interactions with government authorities and doctors (that alone felt like a part-time job) and I took over a small part of the daily caregiving.

In the last months before Silja's death, at the time when this story begins, I was in Berlin one week a month and I was there for Silja 24/7. I slept in her living room, cooked for her, brought her medication and treatments, took care of the household. During the rest of the month, this work was done by her partner Lluis, with a little assistance from wonderful friends and caregivers who helped out now and then during the day.

Besides that, while living my normal life at home, I organized a care team (getting to know people, briefing them, putting together work schedules), researched information about medication, cures, medical products, talked to doctors and government authorities, filled in and submitted applications (care benefits, daily assistance, nursing aids...) and much more.

This is what my life looked like when I started writing to my sister because she no longer had enough strength for conversations.

Topic: First conversation about euthanasia

October 3rd, 2021

I'm in Berlin, slowly getting more involved in Silja's care and daily life, understanding a bit of what's happening for her and how it feels. Mostly, we talk about practical things that are coming up, but today's talk goes far beyond that.

Silja tells me that she's thinking about ending her life, but that she can't do this to us – her partner Lluis, her parents, me, her friends – because we love her so much. I have a very clear and immediate reaction: Of course I would understand, and absolutely accept it, if you don't want to live this life anymore. It feels completely wrong that Silja should suffer because we love her. That suffering for our love's sake should be more important than what she wants. It can't be. I tell her that, even though I have no deeper knowledge about the issue and what it entails.

- And she is so relieved. We are sitting together, holding each other and crying. It feels right to tackle this difficult issue together.

I know that the implications of this haven't quite sunk in yet. It makes me sad to know how desperate Silja's illness makes her and how alone she has been with these thoughts. I promise her to research the subject and agree to walk this path with her as best I can, should it come to that.

And I suspect that everyone else she loves will feel the same way – even though I can understand that she is afraid to talk to Lluis about it because it will hurt him so much.

We both end the conversation with beautiful, strange and mixed feelings. Silja is relieved that the topic is possible. This alone gives her energy for the moment. I am glad I could be there and that my reaction was good for her.

I start thinking of a thousand practical details. And I notice I feel vaguely guilty: What kind of person am I to discuss and research this? Shouldn't I feel worse about myself? Am I using this dramatic story to get attention?

So these are thoughts that I will also have to take care of in the coming weeks and months.

But today, for now, I get to enjoy the fact that I was able to do something that makes Silja happy.

Memories – sisterhood stories for which I am grateful

Our relationship has lasted all of your life and most of mine. We've shared so many important phases and developments. I want to mention some of them here, because you were so much more than the suffering (and the miracles) of your last days.

My little sister

I think one of the first memories I have of you is the feeling of my nose in your soft baby hair. How wonderful you smell and feel, and how our mother tells me to be very careful.

Which I am, of course.

And proud.

I am three years old, and I think it's great to have a sister. I love your little fingers, your movements that are new even to yourself, and my wonder at this tiny body.

I'm super curious how to take care of a small baby and I'm very happy when I can help (or my parents make me feel like I'm helping;)

The fact that you are in the world is exciting and interesting and full of love.

- Of course we are also children who sometimes argue or get on each other's nerves.

But here, during this first phase, a base of love and care is formed, built on good wishes for you, and an effort to do things right, so that everything will be well for you in the world. So that you'll have everything you need.

I like feeling connected with you in this way.

Care: My personal retreat

I'm sure I'll be writing a few more times about what's difficult about the caregiving situation, so maybe I should start with a fact that surprised me and that has been true all along: I love being with Silja and taking care of her.

Here in Berlin, her illness seems easier to stomach for me than when I'm far away. It feels good to be able to do a few little things, at least.

And I just like being with my sister, always have. Even though we can be together less and less during the time I spend in her apartment, there are always moments where we can simply enjoy each other's company. The joy of being near Silja always outweighs the heavy feelings.

My tasks are pretty basic: housekeeping, easy nursing activities, bringing things to the bed, administration and communication with the team and authorities. There is not a single thing that I really don't like doing, and the things that are harder for me, I still enjoy doing for Silja, and they come easier to me than if I had to do the same things for myself.

Also – and this is a bit of a surprise – it's almost a meditative experience to be so attuned to someone else's immediate needs. There are no long-term plans, it's never clear what we can accomplish in a day. The goal is to take care of another person's needs with absolute accuracy, and it basically clears my head to deprioritize everything else.

During the week I spend in Berlin, there is nothing on the agenda. Taking care of my stuff is entirely optional – it's nice when it works out, but also ok to just forget about it. My days are completely full, I only do inherently meaningful things, I don't procrastinate, I don't push myself to do anything, I don't think about what I should be doing. I just do.

I've always thought that maybe I should attend a meditation retreat – now it feels as if the situation contains one.

Dear Silja, December 12th, 2021

I have to thank you for being so easy to take care of.

I get all my tasks with preliminary research, sometimes summarized, sometimes with lists of links and contact details. Your