Dear Silja E-Book

Birte Viermann

• Herausgeber: Books on Demand
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 278

Veröffentlichungsjahr: 2024

Beschreibung

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

Leseprobe

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 priorities are crystal clear and almost always one hundred percent understandable to me.

You are not moody. You don't let fear or frustration influence your decisions. I can think of a hundred stories of people in your situation who overexert themselves, who don't want to accept help from others, who stress their environment with their quirks, etc.

We don't have any of that.

We agree on almost everything in no time at all. It is easy for me to support and advocate for your decisions.

I know I'll be writing here about the few times when that's not the case, but those are actually the exception.

Allocating time, determining what kind of support is useful, assessing the people around us, deciding what we spend money on – we think so alike, it's almost like working with another version of myself. I've sometimes felt like this in projects with you before, and of course now it's a huge benefit.

Moreover, you have twenty years of personal development under your belt, professionally and in your private life. You can say things clearly, you always manage to cope with the incredible realities of your illness, you see beyond the horizon of your suffering.

You still manage to enjoy what there is to enjoy. And you've kept a great sense of humor.

You know that the things I do for you are quite a bit of work, and you support me as best you can.

It's like we've said so many times before: the disease sucks, everything else around it is ideal. This also stands true – absolutely, every day and again and again – for you and the way you make the tasks easier for me and for all of us.

I know how extreme the situation is and how much it demands from us as caregivers. But I also appreciate that it is the absolute luxury and beginner's version, being in this together with you and for you.

Thank you for that.

Dear Silja, December 28th, 2021

I'm sorry you're living in so much fear. I had no idea how bad it was.

We're together in the middle of a chaotic time. Lluis is away for Christmas, I'm with you for two whole weeks after not having been here for a long while. That's why it's also a kind of shock to see how bad things actually are: how sensitive you are, how much help you need, and how much it knocks you out when things don't work.

The heater in your room is broken, the temperature you need (a constant twenty-four degrees) can't be maintained by the second heater alone. I call the housing association, which tells us that it's hard to get a plumber over Christmas, wait for days for their return calls and spend hours on different hotlines. We find a moment where I can leave you alone, I quickly run to the hardware store and carry an electric heater home.

It takes me quite some time to realize how much this scares you. You can't just pull yourself together when your basic needs aren't met the way you need them to be, instead you're immediately confronted with terrible symptoms. It doesn't matter if the food is a few minutes late, you have to talk too much or the room is too cold – your body reacts immediately with massive tinnitus, migraines, cold and flu symptoms and various pains.

We move you to the living room where it's warmer, and you're totally out of it for three days. I begin to understand what a crash is. This is what people with ME/CFS call the state after exertion and overload, in which all symptoms worsen, often massively, and which can last for hours, days or permanently. You need time to recover from this crisis, which would be a small thing for healthy people (one of two heaters is broken!), and of course my life also becomes more strenuous as a result.

I sleep in your bedroom and spend the days in the kitchen on wooden chairs that make my back ache, but I don't want to disturb you by crossing the living room on the way to my bed during the day. (On the last day I remember that there is a comfortable armchair in the bathroom that I could have used all that time, but so it goes ...)

We order a fitter, think it will get better, move you – and bring you back to the living room when we see that the temperature is still not enough. In between, we coordinate with the neighbors to make things more urgent with the housing association, so that someone is sent at all between the holidays.

Besides, the washing machine breaks down, fuses blow out, I run to the hardware store again.

In the end I get my period and it's so painful that I would rather lie down, but your needs are more important and urgent.

In actual fact, these Christmas vacations are pretty awful. I understand now how exhausted Lluis must be after taking care of you by himself for weeks at a time.

In addition to all the acute things, I fill in application forms in which I have to write down a time log and realize that I actually need just under twelve hours a day only for activities related to your care....

In any case, I now understand your illness a little better. On the one hand, I am grateful to you for how little you complain. On the other hand, I didn't realize how bad things really are for you, and thought a lot of it was just oversensitivity.

I am sorry for that.

And it makes me see many things in a different light. I wonder whether I should not have understood all this much sooner. Or whether you should not have described your condition in more blatant terms.

Or did you? Did I prefer to believe that you only called me in the moments when you felt bad? Did I prefer to believe that things were going up and down instead of always downhill like you said?

I'm sorry for how much I didn't understand and how much you suffer.

And you're right, of course, talking about it more wouldn't have made anything better. But what a tricky predicament: if you, as a sick person, say how bad you are, it is hard for others to hear, and they may turn away. If you don't say it, they think you're exaggerating and don't take your needs and complaints seriously.

As if you weren't already juggling enough difficult things.

Dear Silja, January 10th, 2022

Again and again, the current situation makes me reflect about what it means that you are my little sister and I am your big one.

We don't have a big age gap – a little more than three years – which has made little difference in adulthood.

After a bit of getting used to the fact that as an adult, of course, I should no longer automatically think of you as more inexperienced and less competent (as one seems to quickly do as an older child), we always saw each other very much as equals, more like friends. Sometimes with the added bonus of more closeness, sometimes with the drawback of shared family history and reduced tolerance for the other one's quirks. In any case, it's been a long time since I have perceived you as smaller or weaker in any way. I appreciate your clarity and wisdom, your humor, your willingness to dig into issues. Now that I am taking over your administration, I see what a tremendous job you have done. I do find it difficult to organize your life, and I am not limited in my strength by an illness, nor are the fears and humiliations that come with the sickness mine.

Your way of coping doesn't cease to impress me. Your cognitive abilities, but also your capacity to accept things, learn and take the next step, even in the most difficult situations. Witnessing this, I look up to my little sister.

- And then, in the middle of the current situation, where suddenly, I have to do and decide things for you again, a very old sisterly feeling emerges:

You are the little one, and I have to protect you.

Months ago, when it first occurred to me that you might not get well again, that triggered a strong reaction: Not on my watch! It is my job that you are ok.

I understand that this can't be the reason I suffer from our situation.

It's nice to feel a deep connection with you.

But as part of our roles as adults I should see you as your own, strong and clear person: I may miss my brilliant, warm, bright and witty sister – but I should not want to save my little sister.

The saving part would ultimately only be about my image of myself, and not about you and me as we are today.

Care: So many things don't matter

When you're sick, things taken for granted in a normal adult life become optional or even luxuries.

Celebrations and customs become meaningless.

Up until her birthday in October 2021, Silja did celebrate a bit. She opened packages, sent photos of them. The following Christmas is completely swallowed up by her illness. I decorate the infusion stand with a string of lights and the socks she got as a gift, but I do it more for myself and the parents at home. On New Year's Eve, we worry about how best to shield Silja from the noise at midnight. There is no energy to start the new year with any kind of awareness as we used to. Silja is just happy that no one is partying in the house and tries to sleep.

There is basically no privacy.

One day, I fold Silja's underwear before leaving so that this job isn't left for the (male) friend who takes over the next nursing shift. Silja just laughs and says that it's been a long time since she cared and that of course he has already handled her underwear.

Later, I get all sorts of information about my sister, doing all her paperwork and attending her doctor's appointments. And I also see all her private emails when I need to look for something that I need to take care of in her inbox.

Hygiene and aesthetics take on a different meaning.

In the past, Silja almost never went out without makeup, liked to buy clothes, and was conscious to keep her good shape.

The fact that she can no longer shower and wash is nothing more than that, a fact. – And it is surprisingly easy, both health-wise and aesthetically. Maybe the people on the internet who say you should only wash your hair every few weeks are right after all. Or maybe Silja has exactly the hair and skin types which make it work. Anyway, her hair looks totally ok and her body odor stays almost normal, except for the times when she runs a fever and sweats a lot.

Of course, the fact that she can barely change her clothes and that she gains weight in her last weeks is still unpleasant for her.

Silja can handle these things quite well overall, which is a big advantage. It helps her to be present in the moment, i.e. to simply notice that some things don't work right now and that the body wants to lie down and rest, and not to dwell on these things and struggle.

A similar process happens to all of us surrounding her: It becomes clear that many things are simply luxuries. Privilege of healthy people who have the energy to worry about them. And that other things are more important in Silja's life now.

Pulling down my sister's pants and helping her onto the toilet is unusual the first time I do it, then it's not anymore. On the one hand, it helps me that I've been working with people's bodies for years and have no reservations around it – and on the other hand, Silja is simply the same person she's always been, and as she can't do it right now, I have to. This doesn't change my image of her, nor her dignity, nor anything else.

Everyone who takes care of Silja has to cross this threshold, and in the end it's just the way it is and not a problem.

Dear Silja, February 22nd, 2022

I am hurt. Pissed off and annoyed.

And I find you ungrateful.

We had discussed that I could work in Berlin if I visited regularly, and you wanted to refer some of your former clients to me. You never had the energy to do it, and that's okay, of course.

I organized it myself as much as possible. It feels nice to do a little bit of something else besides spending time with you.

Also, not having zero income while I'm in Berlin contributes to my feeling of financial safety.

Plus, I always love working with new people and in new places.

Since I last saw you, leaving you alone for longer periods of time has become increasingly difficult.

During our phone call tonight, Lluis asks me not to work for the next few months. It would hurt you too much, because you can't do it yourself anymore. And some of it would be with people you know, and you would feel it somehow, and it would be an additional burden.

I do get that, BUT.

That's exactly what I tell Lluis. That I have to hang up for a minute and I'll call him back soon.

And then I'm mad: this is the only thing you can give me back, damn it. And you promised. And then kept putting it off.

Yes, it's the disease. And I still feel rejected. This back and forth between promising and not doing. Again and again, I get the feeling that you have done something for my sake that is not really right for you, and then you take it back.

It hurts.

A part of me wants to go through with it. Wants to lie and work behind your back – what I do during my breaks is none of your business.

I continue ranting to myself some more. I feel controlled and constricted. I make plans and think how much I deserve for the situation to be different.

And then I calm down. I remember how stressed you were last time when I had to leave. How Lluis asked me not to work right now – "these months are crucial".

I realize that you never begrudged us healthy people anything.

And I wonder what it would do to me not to be able to work anymore.

And then I let go of my wish. Too bad, yes. Another thing that the disease eats up. But I won't argue with you about it. And I can organize myself differently. I don't have to work in Berlin. It will be okay.

Breathe. Feel. Don't dwell on it.

(Even if I still have to practice that one ...).

Care: "Silja" becomes "she”

I observe how Silja slowly exists less as a subject and more as an object to us as her caregivers.

Lluis and I now make many important decisions for her. The question is no longer "What do you want?" but "What does she want?". It's more practical that way, not to wait for the right moment when Silja has energy to answer our questions. Talking to Lluis is a relief because we can decide and discuss much more, much faster than I could with Silja.

And I can imagine how much this must suck from Silja's perspective. It's patronizing, as if decisions were made without considering her opinion. As if we don't recognize her as an equal any longer.

This whole situation is a difficult balancing act. Silja is handing over more and more responsibility to us, and being involved in every decision would put far too much strain on her. At the same time, of course, it's important that things happen her way and that she remains in control on key issues.

Sometimes I'm impatient with this. It's a constant guessing game about what's important to her and what isn't. I prepare things and then often have to wait for days or weeks until she can take care of them. I have to keep pulling myself together, slowing down and seeing her perspective.

And I notice how quick I am to push. How taking care of Silja sometimes simply becomes a task, logistics. How Lluis and I no longer say "Silja" but "she" – it's clear who we're talking about anyway.

I don't think these things can be avoided. They are practical, and we have so much to do, so much to take into account. But sometimes it strikes me, and I stop and mentally walk through these steps: "She" is Silja. My sister. My brilliant, fun-loving, humorous, very special sister.

And she is alone, trapped in her illness. I will try to see and represent her as best as I can.

Dear Silja, March 16th, 2022

Isn't it weird that I am writing a book now?

I don't know if you would find this beautiful or if it would make you sad.

I hope it gives you some comfort that something you loved so much is helping me cope.

Writing was your thing.

I could edit and review texts, but I always said I wouldn't know what story to tell.

Now you are my story.

And I am crying because a human brain connects dots that it shouldn't: Of course I am not using you and your destiny. My writing is of course not taking anything away from you, even if you don't have the opportunity to write anymore and I do. But there is a little voice inside me saying just that. It says that I should be able to swap: I won't write a book, and in return, you'll get better. It's that simple. OK?

And then I catch myself. I will have to pay some attention to this guilty part in the months to come. It is both logical and totally nonsensical to look for such a trade-off, to find reasons and causalities where there are none.