Quite a personal ramble, about stuff.
In the run up to this Christmas I had been in a dark place. Privately so. Most people who see me day to day see the ‘best’ of me: my professional self in ‘performance and service’ mode, or my social self at the times when I’ve saved the energy to be walking and talking, engaging and enjoying.
Most people don’t know or fully understand that before I do any activity (from cleaning my teeth to running a choir), I have to conserve energy, summon the strength to be active despite the symptoms of the chronic illness that I have, and plan symptom management carefully, etc.
Most people don’t know or fully understand that after a cuppa & catch up, or teaching a lesson, or any activity, my symptoms worsen and I will usually have to endure a ‘crash’ – and must plan to leave time and restful circumstances after any activity, for recovery.
A lot of people don’t understand that ME/CFS (and many other chronic illnesses), are not ‘just being tired.’ The symptoms are complex and variable, and can range from joint pain, to migraines, to brain fog, to muscle pain, to physical weakness, to intense fatigue, to nausea, to stomach issues, to an extreme inability to regulate temperature, to extreme sensitivity to noise and light, to dizziness, to crippling loss of stamina for mental and physical activities, to sleep disturbances, to ‘phantom skin scrawling’ sensations, to throat issues, to breathing issues, to strange nerve pains, and many other symptoms besides.
Some people also don’t understand that there can be good days and bad days, and good and bad moments within each day – which is quite different from the rather black and white (and completely false) thought model of ‘you’re fighting fit or you’re lying down helpless.’ ME/CFS can leave you unable to move at some times or to endure any stimuli at all, and yet able to function ‘well’ for short periods of time at other times (often with payback symptoms afterwards).
Situations such as this can be very hard for people to understand due to lack of education about them, and to societal or personal biases. ME/CFS is often worsened by many of the ‘panaceas’ generally touted to promote health (eg exercise, or obsessively strict diets that require a lot of mental energy), and the illness is a burden to manage, to explain and to cope with mentally, as it tends to strongly impact all areas of a person’s life. And often the worst parts of an ME/CFS sufferer’s experience go unseen by others.
The dark place I was in before Christmas was a state of general fed-uppery, fed by my health having very much worsened, and the amount of struggle it was taking to manage things. The large jumps from being in bed in the dark most of the day, to the few hours I spent out and about, working or socialising & often being quite dynamic (that’s my personality and my job type), can feel a very strange juxtaposition at times.
I think one of the very hardest aspects of it all – and it’s hard for me to admit this as I love my own company, generally enjoy living alone and thrive on feeling independent – was the sense of loneliness. Loneliness in not being fully understood by many. Loneliness of presenting a ‘front’ to the world and dealing with the hardest stuff alone (mostly by choice – I have wonderful friends and family who DO get it and who are wonderfully supportive – but day to day I have it generally set up so that I can recover and prepare alone, and then see people when I’m in ‘peopling’ mode. Maybe I need to change this at some point so my home life is more social and people can see more of the me squashed on sofa in PJs! Humph…). Loneliness of the strange Jekyll and Hyde ness of my self alone and my self with others.
And then with that also comes the sadness and frustration of not being able to live life to the full in the ways I’d love to. The sadness and frustration of having to say no, again and again, to wonderful activities, opportunities and people who I love. The sadness and frustration of feeling behind other people my age in terms of adult ‘life goals’ (some of which I still very much want, some of which I don’t necessarily). Of feeling like a ‘lesser catch’ as a partner for someone, due to being able to do so much less, and having this unpredictable and very limiting illness (not helped by my previous partner having left me because I got ill. Ouch.). Of having to drop so many things I love. … I could go on but you get the picture, I expect. I was SAD, and whilst it was given relief briefly in my deep connective chats with a few very close friends, or was distracted from by meaning and purpose in my wonderful work with people’s singing voices, or by playing games with friends or netflix, the sadness wasn’t going away, and it was going about with me weighing me down, in addition to the symptoms of the ME/CFS. Tough!
Then, amidst a really bad crash, I zombie-drove to my parents home for Christmas. One of the first things we did after I arrived, was go to a Christmas Carol Service in the tiny, ancient, beautiful Binsted Church very near where we live. I hadn’t intended to go, having been in bed most of the day and just driven all the way there, but FOMO and something in my heart made me join in. I am SO glad that I went. Being together with my Dad, Nephew, Sister, Brother in Law (and Mum, in Spirit, who was singing elsewhere), in this tiny Church which I grew up near, was quite moving. The Church was so full that we had to take up a whole pew behind the choir stalls – and my nephew did brilliantly at not running around for a whole hour while the service went on. When the choir started singing ‘Once in Royal David’s City,’ and processing in, it was dramatic and sweet and sombre and beautiful. They were robed in red and white, and some of them are people that I sang with as a child and young teen; both in local amateur dramatics and in the Church choir. Some of these people had been part of the Church community I had embraced when I decided to get baptised aged 8, and confirmed a few years later (I’m not particularly attached to or thrilled with many Christian beliefs / symbols nowadays – but at the time I was reaching for spiritual community, and they were what I could find, and they were wonderful).
When it came time for us to join in with the first carol, all standing up and connecting with these ancient, powerful (and of course often flawed and outdated), traditional words and tunes that so many have sung before, the floodgates opened, and I wept. My Dad noticed and gently placed a hand on my shoulder, which gave the tears full permission somehow. This was a gentle, supportive, no-drama, affirmative gesture which was just what I needed. Thanks Dad. (Dad aka Mikee)
Being part of a spiritual community, thinking about the bigger things and spirit, singing together, feeling the presence of my family around me, and being a participant in a community event rather than a leader of it, felt like something my soul had been thirsty for for a long time. “He was little, weak and helpless, Tears and smiles like us he knew. And he feeleth for our sadness, and he shareth in our gladness,” – just what a lonely soul needs to hear and to believe.
This was a wonderful start to a very heart-healing Christmas visit. And makes me think about ways I might seek out spiritual community locally, and whether I can prioritise the energy to be part of one in addition to the other things i’m doing, whilst managing illness. I think my soul might need it. One of the reasons I lead community singing is because I believe in the importance of a community space where people can connect and sing together, feel like they belong, and possibly experience something spiritual (or not, as they wish), but without all the messy, violent and exclusionary dogma of most (all?) religions. And I am proud to say that I think I provide a lot of wonderful community experiences for people through the GLOW Choir which I still run (and which I prioritise heavily in terms of energy use, without a single second of regret). But I haven’t prioritised being part of a local spiritual community myself, in which I don’t have a leadership role. I think this might be important for staying sane and in perspective whilst managing illness and life, so… to be continued and explored. I have some ideas. Thanks to someone wonderful.
Re the rest of the Christmas visit – I have to say I am incredibly lucky that my family are so, SO lovely and supportive and respectful. The 5 days or so I spent with them for Christmas has been very healing, happy making and a wonderful break from my usual location, activities and routines. The feeling of companionable family sharing a house and connecting / disconnecting as needed, has been so good for my heart and soul, and drove the loneliness quite away. The care and acceptance with which they acted around my “odd” sleeping hours, wearing sunglasses inside, disappearing for a lie down regularly, etc., was healing balm. The chaos of children and Christmas was a nice momentum to relax around and aim my energy towards, and it was nice not to be in charge of anything much for a time. And to be off facebook! (I love a lot about fb but it can be very draining!).
My nephew was a sweet fireball of energy. My sister and brother in law were lovely to chat to and be around – and they brought with them A CAT. Oh god the endless source of happiness and joy that is a cat! Tic Tac is a kitten, fluffy and curious and purring and prowling and such a joy. He brought me a lot of feline happiness, and it made me resolve that when I can afford the finance and energy to change my living situation, I’d love to live somewhere worthy of a cat (eg small back garden, cat flap to garden, more than one room, space for cat litter tray and food bowls etc.). I’d also like to live somewhere that I can have friends and family to stay; as whilst my beloved studio home is the perfect refuge for me for now, it’s just the one room, so I can’t have people sleep over without getting extra exhausted, overstimulated and making the health stuff worse. Being able to have people to stay, and still have the privacy I need to manage my illness (and just generally manage me to be honest), would be so wonderful and would help make a home feel like a home. * takes a pause to dream about potential / ideal / possible / impossible homes… * One can dream… and hopefully eventually act on some of those dreams. And eventually creating a cat-worthy guest-worthy home is a nice dream to mull over.
Over Xmas, I had some great chats with my parents, played charades with Aunts and Uncles, and spent part of most afternoons connecting with my Grandparents nearby. My Granny (Rosemary) is very ill at present with Parkinsons. Her current situation has prompted sensitive and caring behaviour from everybody, and a few deeper conversations about life, death, family history, fragility of things, and the like. My Granny can’t often follow conversation at the moment (though sometimes she can and it’s SO wonderful when she does), or being read to, so one afternoon a group of us went over there together and sang her some quiet Christmas Carols with improvised/remembered harmonies. My nephew chose ‘We Three Kings’, and we just managed to skip the gloomy death and tomb verses in time, which wouldn’t have been a good thing to sing at her bedside. “Er let’s skip to the last verse, ok?” David and Rosemary Tristram, my grandparents on my Dad’s side, have been married for 65 years, are both kind and sweet, have been very involved in growing plants and flowers (see Tristram Plants on my recommendations page), and have given a lot to their family over the years.
It has been magical to reconnect with everybody, and to feel loved, needed, taken care of, accepted as is, and for the most part understood. What a massive blessing.
My amazing Mum, Emma Tristram (the same one who took Highways England to court to protect beautiful and important countryside, habitats and villages from being destroyed), loves cooking and is amazing at it, and did a wonderful job hosting Xmas for everybody, several times over (as family visited in staggered spurts). She also cooks for my Grandpa every single night, as he spends his days mostly with Granny at the care home she now has to be in, and it’s great for him to come home to family company and a lovingly cooked meal. Mum’s very in her element (one of her many elements!) when creatively cooking stuff up for folks in her kitchen. She’s also managed to do that on top of some health stuff, which is bloody amazing. Something else I really appreciate is that, although she’s not a vegan, she’s respectful of my choice to be so and always serves up fantastic creative plant based things along side the meatier Xmas dishes, and will sometimes buy fancy things in like the odd soya chocolate pudding or nut roast too. I keep my moral/ethical beliefs about animal use/abuse to the internet (or conversations where it’s welcome), and when we eat together we respect our differences, quieten “My beliefs are right!” type voices for the time being, and enjoy eating together.
It’s been amazing to share meals with loved ones twice a day (I generally eat alone most days due to circumstance, managing energy, and keeping odd hours), and to be cooked for and not have to worry about it or plan anything much. I’ve enjoyed helping out with the odd splurge of washing up or veg buying when I have an energy rise, and have very much enjoyed that helping out has been an optional extra rather than a pressured thing that HAS to happen VERY SOON, in the way things are when you’re running your own household and business and need to make sure you eat, plan, prepare, wash, buy, budget, promote, reply to emails (been off email for Xmas too – yum) etc etc. A great break.
We also created/discovered a few new Xmas rituals this year. * Yoghurt Chucking – this happens when you’ve tetrissed your fridge badly, and when you open it, a massive pot of yoghurt falls out, covering your Ma’s clothes, face and hair in Xmas yoghurt. Everybody laughs (including Ma), and it’s a nice moment. * Coffee Chucking – when you find a small amount of coffee that has been hanging around all year soaking up all the bad spirits (including the ones that tipped the yoghurt out of the fridge) and is too old to be good for drinking. You take it outside, accompanied by your Dad if poss or anyone else willing to join in/ witness, and shout something along the lines of, “bad spirits of 2018, BE GONE!” and chuck the coffee over your shoulder (prob your right shoulder?). It feels good!
Me and my Ma have also made a nice ritual of watching the Call The Midwife Xmas Special together. It was epic this year – do watch it if you want a tear jerker of a story. Takes a while for all the different threads to make sense, but once they start pulling together it’s brill.
One of my many marvellous Aunts, who is a potter and pottery teacher, shared something on twitter about that Japanese tradition of fixing broken pots with gold and the flaws making them more beautiful – celebrating their uniqueness and flawed perfection! She shared this with the idea that Boxing Day clumsiness could be made use of for such a practice, I think. Well, I broke a teapot on Boxing Day so, gold-glue away folks! (sorry)
So, this has been a massive ramble, but it’s all sort of tied together somehow. Have I been true to my title, in this probably public ramble? “Carols, Choirs, Tears, Fears, Health, Roots, Family, Xmas Rituals.” Let’s see.
Carols – they are ancient, moving, beautiful, annoying, uniting, appallingly bad, sweet and nice, bizarre and all sorts. Sometimes one sings them uneasily feeling aware of every odd word/outdated concept/confusion. Sometimes one belts them out for the sake of joining in tradition with songs that generations of people have come together to sing at this time of year. Sometimes they unlock tears and sense of spiritual belonging that have been locked up for a while. I’m in favour of analysing them and updating them for the sake of moving with the times in terms of morality and equality and respect. I’m also in favour of belting them out & enjoying them as they are as a piece of history and present – whether that be singing them in a church, round a kitchen table, or in the dark walking around beautiful villages and forests, like my family used to when we were young. (Binsted is still under threat from road destruction – don’t let Highways England get away with it! Planet Earth, Binsted & surrounding areas, and our wildlife and wild souls, deserve better!).
Choirs – it was moving singing next to one of the Church choirs I sang with as a youngster. Both for seeing familiar faces from life times gone by, and for singing in a spiritual context. Being allowed to break open and weep at the power of song, reminds me internally (rather than as feedback from choir attendees) of an aspect of the power of community singing, and gives me extra motivation for the work I will do with GLOW Choir Brighton in the coming year. Witnessing my Grandmother connect with and, I think, enjoy and be soothed by, our singing to her, when words and conversation weren’t generally an option, reminded me again of the power of music and song, and of another reason why I do what I do. Singing with my Mum round the kitchen table connected me with many times spent singing with the family, often led by her, and to how grateful I am to her for helping me learn to sight read (fairly well!), and to discover and own the joy and power of group singing from many different eras and genres. My sister gave me a silly book of Christmas Carols with the words reworked to be sung from the point of view of various (naughty) cats, which me and one of my marvellous Aunties had a fun time singing from on Xmas day. I was out singing in the fields nearby to blow away the cobwebs, and heard my Dad singing back as he searched to find what wild flowers were blooming on Xmas day this year. I found a book at my parents’ house that a singing student and occasional GLOW choir member had written, which was a nice connection.
Tears – see the aforementioned Carol Service eye-leaking incident. Also, still struggling with managing health stuff around life stuff; witnessing my Granny’s deterioration; having some other tricky family health situations in mind; and the general reflectiveness that a visit to the family home can bring. I enjoyed not talking about my life much this visit though – just enjoying company instead. I did have a good short “real chat” moment with my brilliant Dad though, who said, “how are you,” and listened to my knee jerk answer AND my deeper answer which was, “fed up.” He was brilliant and said, “I’m glad you can say that, it’s important to be able to.” He’s amazing, works so hard making the world a better place in many ways, and had to manage ME/CFS himself for the best part of a decade when I was a child. I know that seeing his parents aging, particularly his Mum’s condition at present, is very hard for him and his siblings, and a source of tears and deep reflection, and I think some pre-emptive grief too. He’s an amazing man of great emotional and intellectual intelligence, who’s not afraid to cry or be gentle, or to put his foot down and be the boss. Respect. Me and my wonderful sister had a few good laugh-cry reminiscing moments too. Yay.
Fears – oy vey. See above re the health issues. The possibility of not getting better. The likelihood that I will probably need and/or wish to do lots of things that my soul needs, but that will make my illness worse and cause suffering and crashes. The possibility of new love, partnership, making my own family pod with a partner (& cat& home?), and how impossible that generally feels due to illness, how I manage illness, and the potential to be made to feel bad about the problem as well as managing it. Finances. Global environmental disasters. Homelessness. Financial crisis. Nazis. Bigots. Not achieving enough in my lifetime. Potentially discovering there’s another illness underneath the ME/CFS. My Grandmother, and other close family members’, deaths. My own death. Disappointing people who have invested in me. Running out of toilet paper and not having energy to go out and buy some! Unhelpful thought patterns being triggered if I make myself vulnerable. Having to say no again and again and not knowing yet how not to feel broken by it. Being misunderstood and not always knowing how not to care about that. Bullying. Speaking out about veganism and being misunderstood as a food snob, rather than being seen as an activist against cruelty & for equality & respect. Losing my hard won body positivity, fat positivity, and level of self acceptance. Saying the wrong thing despite the best intentions, because of my own ignorance and blind spots. Being in the sea with creatures around. Tsunamis. Losing more abilities than I already have lost. Earth becoming a desert. All the green spaces being bulldozed for awful stinking roads. Bigotry, internalised and from the outside. Learning how to be loved by a partner without being performative at all. Being co-erced into doing stuff without the space/quiet to check in with my inner voice. Not using the skills and resources I’m lucky to have, not using them enough, not using them enough for the greater good, and not using them enough for my own satisfaction, while I’m around. Not having a room of my own to go into and shut the door. Spiders (I keep dreaming about them all the time over Xmas). All the fears!
Health – see start of the article.
Roots, Family – I think these two can go together! I’ve enjoyed learning tidbits about stories of family history. My Mum’s Grandmother (‘Ninnin’?) and things about her life – prompted by my Aunt Lucy wearing a ring of hers. My Great Great Grandmother on my Dad’s side, who was also called Hannah-Rose, and was Polish-Jewish – one of the reasons I’m very slowly learning bits of Polish at the moment, and maybe one of the subliminal aspects of why I enjoy and feel connected to aspects of Judaism. It felt v special to connect with & think about family of the past, and also watch my young nephew at play, and connect with my sister and her husband and chat about life and how we are finding it, and spend time with my parents, aunts and uncles. I think the lonely aspect of being ill and living solo and being self employed (quite different from being well with those other circs), made me especially aware (during this xmas visit) of how HUGELY lucky I am to have the support and presence of living relatives, who are very kind to me, who there is no massive rift with, and who have some shared interests and joys. I’m going to try to physically remember the sensation of their love, support and presence as I navigate the more solitary days between things. Much as illness may hold me back; love and support, purpose and peace, are motivating and can give energy of a kind, even if their actions require recovering from too. Much as life is a complex web (argh spiders) of many things, all worth experiencing and exploring; to love and be loved and to let yourself feel it, is a powerful thing, which makes it easier to be with different states and circumstances.
Xmas Rituals – see above re Coffee Chucking etc.
I hope these ramblings have been interesting to you. It’s been good for me to download from the brain!
A couple of other tidbits from the last 5 days: * I was proud of the Tristrams & co for managing to discuss a bit of political stuff, but with no rows, just a few passionately voiced opinions. The big political beasts did creep into conversation, but didn’t stick around long. It was well balanced. * Nobody said any annoying or upsetting stuff to me, which can be a danger at gatherings with any people, family or not, who haven’t seen you for a while. 100% thanks & hugs to my brill fam this year for being great with communication. * I also got a few texts from a small number of close friends whose connection has been a treasure this year. This brought love to my heart. Thank you folks. * I also had a wonderful time listening to podcasts by the brilliant Sofie Hagen, in some of my bits of downtime, which I would highly recommend! Check out Made Of Human / Moh Pod; and also Secret Dinosaur Cult, on whatever podcast devices you have!
If you’ve read my big fat Xmas ramble, thank you for your time. I hope you’ve gotten through your Xmas with some things to feel grateful for and pleased about, and that you’ve felt heard about the less good stuff too. However it’s been for you, here’s wishing you a happy, kind 2019. Much love and thanks for your brain time, Hannah-Rose xo