Dear all,
From the bottom of our hearts we wish you all a wonderful Advent season full of hope, joy and love.
May your souls be infused with faith, your bodies be charged with warmth and your minds grow in gratitude.
Enjoy this calm time of togetherness, gifts from heart to heart and awareness of your senses.
May the light and hope of Christmas guide you into and through the new year.
Things are unchanged here. My health has further deteriorated, frequent longer and more extreme (sub)ileus states that cannot be treated, more and stronger pain whose management is without alternative (morphine), more and stronger nausea that isn’t even treated with high-dose iv medication, unstable low weight (no increase or even stabilisation despite several changes in Compounding TPN), more and more serious issues because of the motility that again lack in treatment, palliative treatment that also lacks in management options… stagnation… frustration.
The only treatment option (that might (!) improve things) is complicated due to the complexity of illnesses and manifold damages of the enteric and autonomic nervous system, vascular system, pre-surgeries… and location.
No matter how optimistic I am I have been getting weaker by the continuous physical stress on my body and also the lack of perspective.
I wish I could give some positive updates, but the truth is even more brutal than I could describe it here.
Nonetheless, along with the everlasting support and love from my mum there is still hope and light within me. We still choose to fight.
During this time we are even more aware of our limitations, but also the impermanence of life. We are grateful for the little things in the present moment. They guide us through the darkest days.
(Chronic) Illnesses Do Not Take Holidays During Christmas
Christmas should be one of the happiest times in the year. Now imagine your days are controlled by your body’s symptoms, medicine, interventions, hospital stays, doctor visits, surgeries, pain, weakness, vomiting, nausea… hopelessness, frustration, isolation. How can one enjoy these days when you cannot even take a bite of some of the wonderfully scenting cookies since you are fed through a line into your heart, when you cannot go outside on Christmas markets or through the snowy forests as you are tied to your bed, the clinics, lines and tubes, when you cannot meet friends and/or family because of uncontrollable symptoms and lack of mobility, when you cannot decorate your home with candles and ornaments due to exhaustion and since the hospital is your second (first?) home…?
For the past years I have spent most of the Christmas time in the clinics, recovering from extensive surgeries, treating ileus states, isolated during the pandemics, in lots of pain and lots of crying. Nonetheless, I have kept the spirit of Christmas in my heart. The Advent season is the end of the year and hence, a time to reflect upon our experiences, actions, words and thoughts. It is also a time of new beginnings. It can only improve.
Aliveness and stillness go hand in hand – silent snowfall, starry nights, merry jingle songs, colourful lights, vivid hustle.
The more Christmas Eves we celebrate, the more my gratitude for life grows. It doesn’t matter how dark the present is/seems to be, there is always hope and love. I know that I can always rely on my mum’s support and love, I am not alone. Christmas is a time where family and friends celebrate together. Take a moment and be grateful for your loved ones.
Christmas raises nostalgic feelings along long ago memories, child-like laughing, believing and wondering. For me, a time without worries and a time without illness. Flying reindeer, Christkind, dancing elves through pines. We should all take a moment to remember the magic that arises from the belief in wonders, the curiosity and the Vorfreude (joyful anticipation). It will brighten us up. Solstice, brighter days are ahead.
Because of the progression of my illnesses, things have been getting worse and worse and every day we live in uncertainty and lack of perspective aside from massive suffering. As a child I knew ‘everything will be ok soon’ – all will be well in the end. I had to accept that this time won’t come anymore. Nonetheless, Christmas somehow permeates this feeling of safety, cozy warmth and comfort through my body and mind. It also reminds me of the temporariness of life and suffering. It lifts me up.
What can sustain hope if everything is lost and broken? Look wider, zoom out, the balance of the universe is always present. You are not alone, because you are a tiny part of everything, of different communities, your family, other chronic illness fighters etc. In practise, look around you, how can we spread happiness and hope around us? We should see the big(ger) picture and reflect, seek and offer help. And hope will rise again.
In my opinion, the true meaning of Christmas is to spread compassion to others, think of others, especially those that need support the most. The most generous gifts are honest support, giving love, time, joy, friendship, companionship.
What will follow is shared laughter, the creation and reflection of shared memories that bind and interconnect us. Christmas has a very unique way of bringing people close(r). This again infuses my heart with hope. There are possibilities, there is potential…it might not improve my state or my life, but humanity’s in general.
Re-focusing, concentrating on my (micro and macro) environment, away from myself only, is equally important as the growth of self-compassion. Be kind to yourself, be more mindful and aware. You will see, suffering inevitably belongs to humanity. Re-focus. What will your new year resolutions look like, where do you want to go, what do you want to create? What are your deepest wishes?
Enjoy the little things*. Take your time to notice the little things and moments that help you through the day and cheer you up. Now take a deep breath and be aware of the present moment, appreciate every little bit. The little things define our lives and give us a purpose. They are part of the whole, the whole net of beings and interactions, they are the little knots, the twinkling stars in the wide web. What are your tiny stars? Take your time to actively recognise the little things and show your gratitude. It will help in raising mindfulness for the present moment and the acknowledgment of what truly matters. Moreover, it reduces negative feelings and thus, increases health.
Being kind to others and oneself means being more mindful and aware, paying more attention to our environment, others’ and one’s own feelings. Us chronically ill people are grateful when others pay attention to our problems and needs, when others try to understand what we are going through and think about how to support us.
Altruistic behaviour (selfless concern for others) benefits our physical and mental health and relieves physical pain (see various studies: Midlarsky et al, 2007, “Altruism, Well-Being, and Mental health in Late Life.”; Post, 2005, “Altruism, Happiness and Health: It’s Good to be Good.”; Wang Y. et al, 2020, “Altruistic behaviors relieve physical pain”). It makes us happy to make others happy, we feel valuable and needed as we benefit society. We interact with others, we become alive and more active. It increases gratitude and self-esteem. For people with chronic illness altruism means spending time for something else than the illness, it can distract, motivate and engage again. Furthermore, it gives us a purpose and direction again in the midst of all the suffering and constant cycles that chronic illness brings. Altruistic behaviour removes negative feelings and improves health.
Top altruistic deeds during the Christmas time
- Donate. Clothes, toys, money, your time, your support, your knowledge,…
- Volunteer. E.g. in homeless shelters; help refugees to settle, the language..
- Help someone in need. Take your time to listen to his/her problems and show your empathy.
- Pick up the trash in your local area, the city forest, near the river bank,…
- Do you have a special talent? Bring joy to others by performing a Christmas poem, singing, dancing or something else in the general public, in the elderly home or the children’s hospital.
- Care for nature. Plant a tree, build an insect hotel, travel and eat sustainably, …
- Tutor and/or mentor pupils that cannot pay for it.
- Support a foundation that helps people, animals or nature in need. For example, https://www.care-for-rare.org/en/home/ , https://www.elhks.de/forschung/unser-foerderansatz/ , Greenpeace, WWF , https://www.dnr.de/ , https://www.nabu.de/ , https://www.culturalsurvival.org/ , https://www.ifaw.org/international …
- Give gifts from your heart. Be creative.
Kindness (re)connects us – to others and ourselves. Kindness brings hope. Kindness brings gratitude. May Christmas be all year.
Follow Charles Dickens’ advice:
I will honor Christmas in my heart, and try to keep it all the year.
May you all take this magical Christmas spirit within you into the new year. And recall Plato:
Kindness is more than deeds. It is an attitude, an expression, a look, a touch. It is anything that lifts another person
Keep that magical, wishful spirit of Christmas. Recall Christmas Eve as a child. Hesse describes it pretty well in the following poem.
Weihnachtsabend
Am dunklen Fenstern stand ich lang
Und schaute auf die weiße Stadt
Und horchte auf den Glockenklang,
Bis nun auch er versungen hat.
Nun blickt die stille reine Nacht
Traumhaft im kühlen Winterschein,
Vom bleichen Silbermond bewacht,
In meine Einsamkeit herein.
Weihnacht! - Ein tiefes Heimweh schreit
Aus meiner Brust und denkt mit Gram
An jene ferne, stille Zeit,
Da auch für mich die Weihnacht kam.
Seither voll dunkler Leidenschaft
Lief ich auf Erden kreuz und quer
In ruheloser Wanderschaft
nach Weisheit, Gold und Glück umher.
Nun rast' ich müde und besiegt
An meines letzten Weges Saum,
Und in der blauen Ferne liegt
Heimat und Jugend wie ein Traum.
Have a look at the poem ‘Weihnachten‘, too. So be grateful and appreciate this time. More poems and thoughts here.
More to follow soon (about the uncertainty in chronic illness, some philosophy and thoughts, therapy and care(givers),…).
* Listen to Tom Rosenthal’s ‘Little Joys’/’Little things of the finite’ which is about the importance in finding meaning in the little things in our life (that are still left), the longing to connect, the identification through the interconnectedness and also the temporariness of nature. In the constant flow of time the little things are the sparkling stars that guide us. There is always hope, even in the darkness.
Vita's Little Journey 