I think since asking for participation from others to find a space and voice to express themselves regarding how it has felt to be facing SARS-COV-2 otherwise known as COVID-19, it’s equally fair that I share my own experience. Again like everyone else this is a personally reflective piece and only belongs to me and is my personal story. No right, no wrong just perceived experience. my story, a story.
I shared a post earlier last year explaining that I had experienced COVID personally and it was not pretty, not at all. March 6th marks the year since I contracted it, I have no doubt of its origins. I am in no way willingly opening myself to round two however, I have been vaccinated but life will remain alert and limited until the autumn booster which will cover all 4 (and future) variants. No risks feel worth it for me! Once was enough, it was awful. The long term effects are shocking. To be fair initially I had no idea that is what it was and I didn’t reach out for further help when I needed oxygen at home for fear of catching the virus (you know, if you are a parent and are worried if your child is still breathing in the middle of the night but equally you don’t want to turn the light on in case it wakes them. Irony similar to that) anyway as explained in the previous post this was a mistake on my part and the post viral fatigue took 4 months of my life, not to mention all that sequentially followed. Even now. I am still a little fatigued and my mobility is reduced further. Huge grace however in having equipment that can aid. The reduction is most likely temporary due to shielding and being (almost) sedentary for most of the year. I continue to have moments of breathing difficulty but my X-ray, 3 months on after the fatigue lifted in June, was clear. This means little however other than how fortunate I am not to have scarring, for which I am deeply grateful. It may be that the virus has strengthened my asthma, it may be that my heart is needing a check up when the hospitals have calmed and it is safer to attend appointments. It’s not major though, very minor all ECG’s are ok. A little arrhythmia but I was experiencing tachycardia and continue to have unexplained blood oxygen saturation anomalies throughout the day. However I can breathe well enough so I’m not concerned but it has been a very up and down emotional and physical journey. The woman in this article explains is perfectly, still today I am having bouts of psychological distress as a result. Hey who wouldn’t though facing potential fear of death when most unexpected (most of the time) https://www.stylist.co.uk/fitness-health/wellbeing/how-long-covid-affects-your-fitness/482580
However unlike this woman I am not experiencing fierce burning lung pain and I deeply feel for her and her story and the all too many (now 1 in 5) with these symptoms ongoing. My fitness isn’t anywhere near where it was (and I have MS so it was already an interesting mix) I need physio to recondition my body head to foot, build strength back where it has gone due to both long covid and the sedentary year (I’m sure it will be a little longer). I experienced many of the symptoms this woman has, period changes slipping into early perimenopause (maybe it will reverse who knows), the rash, 4 bouts of scarlet fever apparently common in long haulers perhaps a compromised immune system (seems to have stopped now though), the breathlessness but only mild in moments and reducing as time moves on. Tachycardia and oddly varying blood oxygen levels anywhere between 88-100 with no pattern to it. It does appear to be easing also mostly but not entirely gone. I’m sure with time it is easing and everything is okay but the experience left its psychological mark and I’m most certainly not prepared to take any risk of reinfection.
Warning ⚠️ Real Information
People seem to suddenly feel secure due to having had their vaccines except the AstraZeneca is only 72 percent effective at stopping severe infection (although this is much better than the flu jag at 50 percent that has to be said) and we have a variant now spreading the world and increasingly in England 250 new cases a day increasing around double every month from South Africa. The AstraZeneca so far has only proven 10 percent effective against. This is false security and I am concerned for the millions which with time whom will start mixing and travelling around the U.K. thinking they are safe when so far scientific evidence is clear they are not and are likely to be reinfected. I shall wait for the autumn booster jag which encompasses this variant, I’m taking no chances, I’ve had this virus it was bad and stole months of my life (even now it’s still minorly floating around)
I just know I’m not willing for round two and worse than the first time which was pretty bad. I feel it is deeply neglectful of governments not to tell people the truth and I’m concerned about what looks like a rise again in Europe just as I’m aware restrictions are soon to be eased, quite a percentage of those cases are South African, Nigerian and Brazilian and it’s not good for the AstraZeneca inoculated. I share this for anyone reading please take heed and don’t make foolish travel plans this summer even in the U.K. the game will change and the stakes are high. It’s not what you are being led to believe and if you are unsure please research this for yourself, informed choices are always best. Caution, information then choose. PCR tests are not 100% they also do not mean it can’t be picked up during travel in poorly ventilated and situations where one is in vicinity of an infected person (again please research its well documented since last year) and I’m predicting the more common use of the quick 12m tests at home which are less effective at picking up especially new variants which are becoming less detectable for longer. Let’s see. I’m off the aim of this post here but feel someone has to say it, government doesn’t seem to be listening to science (but are we surprised after last year). Sorry I feel passionate about this and hope there will be an actual enquiry and families will be compensated for some outright avoidable errors her and across the world. Apologies for. The off track moment but someone needs to inform what current scientists are saying and the concerns they have raised and the lack of making this knowledge available to the general public so they can act with insight and wisdom. I’m sorry to all who may not, may you remain safe and clear from infection and this will pass soon. Our autumn boosters are the key they are in the making and will cover all (or most) variants of concern as they are arising using a different part of the virus which is more steady and not changing quickly.
Back To The Point Of This Post
Anyway back to my story. In the midst of this equally I was undergoing a chemotherapy treatment for Multiple Sclerosis which as far as I am concerned has been a massive success in suppressing the autoimmune problem causing the illness. So by some miracle, whether it be that I am female, age, have asthma which reduces the number of Ace2 inhibitors the virus can attach to reducing viral load, whatever the reason I am one of the fortunate ones. Much deep deep sympathy for those less fortunate and to all of the families grieving as a result. My heart goes out to each and every one of you.
Beyond COVID and recovering from the post viral fatigue life has been odd as I said very up and down symptomatically and psychologically. I’m sure that’s not a word others may choose but for me it fits. I’m pretty sure there are plenty other choice words too.
I initially was deeply affected by poor mental health during the post viral fatigue and as mentioned in my previous post had no clarity of mind. This caused some distress. I’m usually rather forbearing but this really got me. Initially I think it was as a result of the actual illness then I experienced it similar to PTSD as described by the woman in the previous article.
I found that what I needed most was a deep break to metaphorically breathe and regroup, and despite the shock of COVID-19 itself the universe had equally gifted this space.
It has been nice to have more time (albeit limited due to college and work) to get to know my daughter before she moves forward in her life. I will eternally be grateful for this. Also to with time learn how to reconnect with my family and grow to appreciate each of them more in their unique personalities. It had opened my eyes to the genetic aspects that carry along our lines and I have become more interested in this systemically and historically. My nana has vastly researched the family history leading right back into the early 1800s. So I don’t need to follow that line as this is her passion and I’m sure she will continue but what it does offer is the contemplation of lineage and a call to touch and reconnect deeply with these family roots. Places in Ireland, Scotland, a small patch of Northern England and believe it or not South Africa! Issues of class, much affluence surprisingly, life stories that have hidden truths only revealed later in life and questions still unanswered. So this is beginning to take shape within my art and writing exploration.
I’ve rekindled with my guitar and have begun writing and singing, also with my bagpipes (to strengthen my lungs and improve mind agility). Reconnected with piano, however, wary of the repetitive strain injury caused by rushing pace. Music is beginning to be my life once more, I have missed it deeply since having my daughter. But more music music as opposed to pop etc. Gentler, expressive. Also I am about to begin to learn Cello properly, I can play a little bit very basic and have reconnected with the flute and violin (albeit sporadically).
During this pandemic it has always felt important to help others, particularly contributing to and nominating key workers with gifts of thanks (organised by a wonderfully kind and thoughtful community member).
Also we kept (and still are) the art studio open throughout, online. Keeping that lifeline open in difficult times and when possible also offering help within another online support group …among other things. It felt and still feels important just to provide spaces for people to hold in the tide.
Personally, again, it has been a time for deepening insight and clarity. Changing habits that no longer serve well-being. Noticing what is holding back growth in my own mind, of my own doing. There has been deep cleansing and freeing up… ironically within restriction.
My mum has been getting my shopping, her and nana are now having frequent walks to fill time as this is her second furlough and nana is bored. My youngest sister has been very present and supportive lately and periodic outdoor time with a couple of my nieces has certainly been interesting. I’m hugely missing my other sisters, dad, nieces and nephews though as they live in England and we are not allowed to cross the border for now and as I said I won’t be until I’ve had the autumn booster. I’ve made a better point of being connected to them though especially given our shared losses this year, we have lost a parent and sister. I love them all so much. This feels so important. I’ve retracted a bit from friends but we each have our own stuff to work through just now and I trust it will pick up as is supposed to be when the time is right. This time (outside of supporting others) has felt like a healthy retreat and balance, this is important.
I’ve been reconnecting with relaxation and old friends from a particular relaxation and heart space, it has felt deeply healthy and I’m grateful for each moment spent. I’m long not the person I once was. I am in touch with this being I call ‘me’ far more deeply and understand and respect this ‘self’ much better. I’m not that insecure scared little girl that had to find healing. There has been much support along the way and meditation, contemplation and relaxation have been key to getting here. I know what is needed and I wish to nourish this. I’m so grateful to the network that has made opportunities to practice this again throughout the pandemic. Thank you.
After being unwell stability, honesty and nourishing that which supports well-being for myself and others has become the priority.
I have chosen to remove myself from personal social media websites because their ethics and mine are not matched. It also wasn’t helping my well-being, I felt manipulated by the apps and the chemicals that it has been activating in my brain. However I’ve had to settle for this moment temporarily in these platforms for the sake of participants within my art projects/ exhibitions. Helping both others and myself to share in our humanity, creatively together. Somehow contributing and offering a space that reduces the darkening edges of struggling mental health within people en mass in this moment feels important. Although personally it’s not for me I recognise removing myself entirely especially with the art process would be a selfish act.
I choose ethical and moral balance and these platforms are harmful. For now I will work creatively with what is there, but soon I hope to find more ethical options. I’m working on learning SEO, web design and personal networking in ways that I hope to not need social media platforms at all but given the public involvement element of my artwork this may prove massively challenging. I know there are other routes but this takes massive time and I need to work on this. Baby steps. Let’s see what manifests.
I also have chosen to practice my artwork more ethically and eco friendly. It’s time to support the earth as it supports me and all of us.
For me art is a hobby in time I hope to also raise money for charities. However, for now, I feel helping others to find or share their voices, pulling people together in our shared humanity is my aim and purpose.
Holding the space for now, creatively, may only be a small offering but it’s something. Anything to lift. Along with this the exhibitions have been offering people something to look forward to in times when it felt like there was no light in a long and dark tunnel for so many.
I never imagined being a year on and still in the same situation with this pandemic it both blows my mind yet paradoxically offers great peace and space. Personally it has felt like a year of my life never really happened but it has. This notion is still in deep reflection and contemplation as it leaves a rather profound question which I will come back to in a later post. It has me asking things like what life actually is? What is all this activity we ‘do’? and how do we fill time with it? Is it even necessary? But as I say these are big questions for another time.
I have learned very much about this being I call ‘me’ ‘I’ ‘Stacie’ as I mentioned and hope to continue deepening this.
There have been many moments working with memories of times past. Helping to reflect on how I came to be the ‘me’ I know today. Some happy, some sad, some joyful, some full of sorrow, some change etc but all a part of who ‘I’, as a collective ever moving and evolving story, am. Just human like the rest of you now with questions of what I have been doing with time.
For now my mental health has dipped again but only mildly and is back on way to finding balance. I don’t know about any of you but sleep has played a major factor in general well-being along with all the afore mentioned and it has again been pretty off, it can make one feel confused, exhausted and physically very uncomfortable among other things.
However on a lighter note for the first time in 3 years after my chemotherapy treatment I am finally able to braid my hair. Small things.
The familiar balance that I often find my way to has been interrupted a few times and I am learning to stop what brings this, how to manage it better. Having green fingers helps. A lot to be said for gardening, house plants improving mental well-being.
All in all it has been quite a mixed bag, my family & I have had two significant deaths as I mentioned which continue to permeate especially around significant dates. Externally in my perception of the world there is chaos around and equally a healthy purge within. As devastating as this is and continues to be in terms of how it is affecting people, their families and friends there has equally been a change, a shift in world energy that is starting to address much of what wasn’t working previously. A healing and yet equally, either unknowing, not noticing or without this being a preference or personal priority so many just wish to go back to what was and also a mass of misinformation and false security. Perhaps there is a need inside to wish the experience away, understandable but potentially costly. There are so many mixed views of what is ‘right’ and ‘wrong’ in people’s personal perceptions, a lot of which driven by personal desires, felt gaps and need. At times I have felt baffled by what some prioritise but I’m not here to pass judgement it is just a noticing and feeling of mixed emotion.
There has been both my daughters 21st and my birthday whilst we have been shielding (as well as the rest of the family now)
Christmas was very much online and different but my family are very resilient and actually felt like it worked well. Much of my time was taken preparing all of the technology to make this happen. I’m grateful the feat was achieved and although not the same it somehow managed to feel almost normal.
The politics have been appalling but I chose not to use this space for this topic other than already mentioned in terms of public safety illusions. Dismal.
The closed businesses, buildings and in moments humanities blatant disregard:
I have felt much sadness for the most vulnerable and the families both here and across the world that have either newly found themselves facing poverty or having what was already a struggle perpetuated. As well as the mass grief for well over one million. The play out with vaccines has also been rather shocking and I’ve been rather surprised as to who has actually been offering more help towards a balanced approach worldwide and who hasn’t, I’m not particularly shocked at the later but more by those countries making vials and genuinely willing to help. Those whom are usually depicted in our western society as ‘bad’. This actually popped up prior to this pandemic on a couple of occasions particularly in areas of war torn countries. However I suppose bad guys can also be good guys in varying moments. The old terrorist vs freedom fighter dichotomy. If we take a moment to look at our lives alone I’m sure there are many minor (or major) moments similar within our choices and behaviours.
For me much has changed, how I chose to be in this world has changed, who I choose to interact with (which is different from loving care and compassion those continue to apply) and how I am internally has grown vastly. I know this being that is ‘me’ much more deeply and less solidly.
So to sum it up there were serious, sad, moving, stressful, loving, and grieving times matched with inner awareness, personal growth, bonding, confidence growing, warm, laughter filled moments.
It has felt confusing, disorientating, intense, isolating and currently I’m feeling all of the things I hadn’t previously especially the distance from people, the growing deep wish for moments of physical and emotional affection.
I have found understanding around what matters most for me personally and to those around me and I chose to honour these as much as I can.
It has felt important to really connect with people not via the digital blanket that surrounds us but as humanly as possible via phone call, voice to voice, person to person. This is how I choose to move forward. Video calls have their place very much also as there is something in at the very least seeing another human being, their gestures, their body language their smiles, their eyes all of the fundamental foundation connection and basic relationship building necessities. This is the only way for connections to work well and flourish happily. You know, the chemical bonding stuff which is utterly essential.
There has been much re-evaluation and I’m sure there will be more in the next while.
Having faith and hope have been key factors in getting through this moment and all that has arisen. I have been moved by a huge sense of togetherness in the times it arose and just how much work people put into creating a sense of this, I’m grateful for each and every moment of this as it has arisen. We are not alone and although we may get lost in our own stories and focus the moments of shared humanity, togetherness as a human race and connectivity have been real healers and bringers of hope.
I know it returned a lot to every person for themselves but I think it’s turning again. Like the waves, in and out. If only us humans would learn what is healthy and good for us generally.
Faith And It’s Role
I’m not personally a church goer. I feel faith and spiritually are wider and embrace many principles within differing religions but I respect each and every faith and belief. I decided however I needed a small window into how this pandemic has affect those whom do attend churches/ mosques/ synagogs etc and although couldn’t access most I had a small window into the Church of Scotland so my selection only reflects part of a wider array and I wondered how all of you whom are faced with not being able to access your places of worship are feeling, how you are affected. I captured some images just to highlight this moment in time, again as I say it’s only from one space due to restrictions but I’m sure it reflects a sentiment within many spaces for now. I was just curious.
This isn’t everything and doesn’t open overly deeply but it’s as much as I can articulate in this moment. There is so much more and I’m sure I will get there with time. Also some life is naturally personal. Equally for now I’m sure each of you will have your own stories to tell and I look forward to hearing them if you wish to share. This is something I would like to explore more deeply with you.
The Being Human Exhibitions
I’ve collected a good set of quotes and selfies for Being Human In Lockdown in 2021 – A Year On and look forward to altering each submission digitally into artwork to help people let us know how it is for them now. This will be the last in the series (I hope perhaps I will add a relief version once this becomes an endemic instead) and I hope it captures a good selection of the world wide feeling through all of this.
I hope my sharing helps in some way.
To those whom are gone 2019-2020