Guest post by Judy Freed
The Power of This Pause
For just a moment, there is a pause.
A pause from the years of well-intended, ill-informed inquiries:
“So, what have you been up to lately? What do you do for fun? See any good movies? Go anywhere exciting? Get together with any friends?”
For this moment, nobody is asking me these questions. Instead, there is an awareness that “normal” day to day life has been interrupted. The questions now are almost always something like: “How are you doing?” “How are you holding up?” “Are you ok?”
Finally – questions that make sense to me; questions I can answer without collapsing into a too-often told tale of flaw/failure/futility. Now – I can talk more of feeling and less of doing, without fear of being judged for it. Now, it is commonly understood that I have not gone anywhere in particular or done anything terribly exciting – Understood because everyone else is temporarily in the same boat. And in some ways, it is a relief to share this communal isolation.
Still, though, I remain largely invisible. Most other people are noticing – for the first time – the experience of days and nights and days and nights with little or no human touch/ no social gatherings/ nowhere in particular to go/ no consistent distraction from whatever it is that might be arising from within.
For me – I know this territory, having inhabited it initially (over a decade ago) with the same shock and disorientation, eventually easing into a rhythm that somehow sustains me.
As I watch others publicly posting comments about not knowing what day it is, or not bothering to wear clothing, or not being able to resist eating more than might be appropriate, or feeling like they are losing their sanity because their “social being” needs are not being met – I get it. I’ve been there. And something in me wants to scream at the top of my lungs: “Get over it! You’ve been experiencing this for a few weeks. Do you have any idea how many of us have been living this way, and will continue to live this way – long after you have resumed your socially satisfying, dashingly dressed, sufficiently scheduled lives?”
The unleashed anger leaps out like a fiery flame, surprising me in its unsympathetic fury. It screams: “Do you mean to tell me that all this time I could have been given healthcare appointments without having to put myself in environments that stir up severe symptoms?” And “Do you mean to tell me that all this time I could have been invited to participate in a plethora of personal, professional, and performance gatherings, without having to expose myself to countless chemicals and scent-saturated situations?” And then the big burning bang of blame: “Do you realize that if you had just been willing to accommodate my requests for being fragrance-free, I would not have needed to live a socially distant life?”
Then just as sudden as the rising of rage, swiftly comes the sadness -the grief underneath, the longing for what has been lost and cannot be re-claimed. The years of hands not held, hugs neither given nor received, experiences not experienced.
And here is where this all starts to sound so strongly self-indulgent, as if I am pining for pity. So in case there is any confusion (in my own mind or yours) – I’m deeply aware of the suffering all around me, as people everywhere are dying and distant and in dire desperation. While I wouldn’t mind some compassion and kindness, I do not mean to paint a poor-me picture. That is not the lens through which I generally see the world or my life.
I hope, instead, to portray a perspective of possibility, patience, presence, perseverance, and ultimately peace. I aspire to be a vessel for the sharing of gifts, guidance, and grace. And so, I will close with these offerings of awareness and prayer: All – yes, all – is temporary. And tomorrow’s story has not yet been written. And who I am today, how I show up to the currently unfolding circumstances, how I do or don’t open my heart to all of it, how many blessings I observe and give thanks for – these are the things that shape the path ahead.
May we stay open. May our conversations connect us ever more deeply. May this powerful pause serve to awaken, to renew, to transform.
And if you ever ask me what I’ve been doing for fun lately – rest assured that I will simply smile serenely, while skilfully suppressing the urge to swat you. And I will continue dreaming of the day when I am gloriously greeted with: “Tell me about how you are being a rock star of resilience”.
∞
Judy Freed is a theater artist, musician, dancer, writer, and psychotherapist. She is passionate about using creative expression, theater, and performance to build community, break down barriers, and reveal the common threads that weave our stories together. More information about her therapy work and her art can be found at her website: judyfreedhealingarts.com
Seriously "Sensitive" to Pollution 
Very well said, thank you for writing this very compassionate piece. Our very unique community has been experiencing this social isolation as a means to protect ourselves, while others freely wear their chemicals since we’ve slowly and painfully uncovered what we were facing…and Now those others are gaining a glimpse of our reality. But as you eloquently stated, their world will allow them to resume activities while we will resume our position of sitting on the sidelines and taking one for the team, so that they may continue to wear their chemicals and enjoy freedom. Something about that feels off, but we’ve been accommodating them for so long, the thought of giving up their perfumes would be outrageous and a violation of their human rights….so I’ve been told….hearing the whining about loneliness, social distancing depression and anxiety sounds like balancing the scales, if only to give those that are deaf to our pleas a glimpse of our reality. This does nothing to solve our lack of freedom issue, but hopefully moving forward, maybe this knowing may help us in creating legislation for a scent free environment and eventually oblige companies to disclose ingredients in perfumes and scented products as did the tobacco industry, thus allowing an awareness and conscious choosing of buying and using those products. Let’s hope this pandemic sets the stage for a new awareness…
Yes, Nat, to envisioning a new level of awareness for all! Thank you for your kind words.
Thank you Judy.
It is refreshing to see one like me who has retained communication skill your insight adds clarity to my personal situation. I can’t help but wonder if getting rid of the scented products would be enough to allow me to resume a full life I am sure it be a great start but I sometimes feel ill from chemicals when I cannot identify a scent. It goes without saying there are many things that should be taken out of the environment not just scents. While removing scents not being enough is the first thing I write it is not the most important part for me it is just how my brain now works on a grab it while you can think it bases with memory issues take away the grace of free flowing organizing of thoughts based on priority… this may become so jumbled I erase it lets see where it goes.
While I think we need to share outside our comfort circle this and so much more that nobody wants to know….
I quieter more personal bit of me has been given a voice in your words here I will not tamper with your perfect expression:
“Then just as sudden as the rising of rage, swiftly comes the sadness -the grief underneath, the longing for what has been lost and cannot be re-claimed. The years of hands not held, hugs neither given nor received, experiences not experienced.”
The parts nobody sees or normally hears loss grief… and for me as family members stumble over trying to accommodate my illness to include me and I bravely pretend there accommodation was enough… wearing masks and getting thru events only to be bedridden for a wk or more after… I watch them I refuse to let there attempts be in vain too…. I will not let go of all ever is that shortens my life so be it. There has to be something worth the bother of living when living becomes so mundane sad and painful. I make what may seem like strange choices while living with mcs others would think safer is better… and we are surely not all the same.
While I am locked away the people I love are changed by this too .. on top of that they are aging… we are all leaving here… I don’t want to miss a chance to connect so I make choices… what is the sense of being on earth alone to those I loved pre mcs I owe something to … I owe them to try my very best to sustain a relationship with them so they are not another notch on mcs belt… yep for me there is a lot more loss then my own … people losing me … tho today it may not look like much of a loss to those who love me it is I try to never forget this.
I have read the most common reason of death for folks like us is suicide I don’t want to go to deeply into this mud but should anyone need to chat about it this is a topic I am familiar with… The anger and grief you talk about which I rarely see in print are just two of the lock down emotions there are many more we don’t often share on web pages. These struggles are taking out some mcs people by suicide. If I was to raise a voice it would be in attempt to spare as many as I can from that fate at the same time… I would not suggest a shrink… but support in living this …kind of life… lack of works here.
I understand the higher path of the spiritual in this situation the reach for meaning beyond what was my normal understanding .. to put substance behind the loneliness put some clothes on grief and take a look at it from a higher level outside myself when I could not bear to sit with it any longer… I have learned many more ways to sustain my soul while in lock down… while being stuck. One bit I read seemed to fit went something like this … when we cannot expand physically we can attempt to expand vertically… I can’t explain it very well but it is one thing I experienced during the long bed ridden beginning of my first bed ridden lock down… for me it seemed to come naturally without any effort it was only in reading it after wards that I recognized the experience.
I have run out of steam and no longer know if what I wanted to say got said but I did want to say Thank You Judy cause your works spoke to me in what i recognized as my own truth… if I did that then maybe for today that is the best I can hope for … here is to tomorrow for us all keep thinking about tomorrow and looking for ways to heal
peace to you all
Judy wrote a follow-up on facebook:
I reread this today including my post made July 1 2020. I notice how I have changed since then inside where nobody else would notice, best to put a maybe there maybe they notice I can’t be sure it has not been voiced if any have.
20 days after I made that post my one sister died after a long heroic battle with cancer. She passed at home as was her wish. I traveled to her town and talked to her on a cell phone as I looked at her through a window. That is a covid memory that will remain with me all my days at one point I lost it and stood at the window yelling let me in… I just needed to hug her hold her hand. Covid has robbed many I know I am not the only one. I limped along on Dec 19 my brother passed from a sudden illness lung related but they did not say covid. March 2021 my other sister died suddenly from a stroke. She too had been ill a long time with lupus it was obviously ill a decade but had been so resilient for so long it came as a shock.
All of us who do this mcs dance have losses from the disorder but we have other losses too. We have more important things in our lives than mcs and covid…. I could be so off that statement is wrong for all others I don’t know but just now that is how it feels. There are more important things like those we love and our experiences we can share with them. Believe me I know there are times when your not well enough to do any engagements or choose not to set yourself back by making the attempt. I have some regrets from missing times with loved ones that will always be there too… I also have great memories from other times I was just well enough and just crazy enough to take a chance. I am not urging anyone to do anything except think of what life is to them and what is worth the bother and the chance.
I have been very lucky to have had wonderful family support some of that is one now and is sorely missed. I urge you to be grateful for the support you have the love you have. I urge you to show your gratitude now. To reach out and chat with loved ones who are new to this sort of lifestyle. Pass on the tools in your toolbox that have sustained you thru lock down as in some things we are the experts.
I am limping if I thought I was in a strange head space before it is magnified now grief is not a good bedfellow and I know this will be a long process. There is not much good that comes from the loss of loved ones except maybe there few words I can pass on to wake somebody else up to shake them out of the self pity …. yep I know self pity I got the t shirt… I suspect it visits most of us. I don’t think it adds much to a life really mostly it just takes from what I can tell. Shake it off if you can and reach out to those who love you.
I wish you peace
PS I have made a find a product that I can use to wash hair and body that does not make me sick… it is called bambonature hair and body wash… I am not sure if posting products is allowed but I am trying it anyway this one has made a big difference to my life and worth the trouble. I hope it works for you. There is one other thing laundry soap Simply Clean on back order right now and hard to get but also worth the bother. I am now completely loyal to these two product that took me years to find. I buy them online as few stores sell them also worth the bother.
Sandy
Oh Sandy ((( ❤️ ))),
I am so sorry for your losses. So many in such a short time… and the sorrows are compounded by the lack of closeness at the end.
Know that they are always a part of you, even if their physical forms are gone.
You shared a lot of wisdom here too, thank you for that.
In the absence of safe humans to be around, I have spent a lot more time gardening, with native plants, developing a little wildlife (bird and pollinator) friendly corner of the world. So much gratitude to some local garden group angels who have picked up and delivered the plants I’ve wanted to add.
I used to garden in my old place in Toronto, and it brought a lot of joy to people who passed by. I was the first to really get into it at the front of the house, where it was visible by the sidewalk of the busy street I lived on. People would stop me in the winter as I was shoveling snow to ask about the garden and share how much they enjoyed it and looked forward to seeing the changes as different perennials came in and out of bloom… Over the years, many other places along that stretch added flowers!
It’s so important to find and spend time doing something we love, even if we are barely able to do anything, as there will always be something we can engage with in some way, that can bring a bit of joy to our lives.
Re products, I am happy you have found some that work for you, and hope they don’t reformulate!
We can be very individual specifically re what we do and don’t tolerate using ourselves, but it’s good to know of products others find safe, as they are ones we can often tolerate on others who want to be safe to be around us, even if we can’t use them personally.
I hope things get easier soon, for you, and for everyone.
❤️
A very late reply from me Linda so for the delay maybe it was fate as it comes just when a kind word carries more weight that it may on other days.
Thank you for your kindness and caring.
I am very happy to hear you have a garden that you love that a part of life has been reclaimed. Any small joyful thing we retain or get back needs to be celebrated it happens so rarely.
We all work on tiny bits of what we can control being that a garden our social expression or in taking control of our personal environment it can mean so many different things. The importance of it cannot be said loud or often enough.
This may reaching some but it also fits perfectly with how I am feeling just now…. this one word… yep I looked it up
Autonomy Definition & Meaning | Dictionary dot com
the condition of being autonomous; self-government or the right of self-government: The rebels demanded autonomy from Spain. a self-governing community.
it is not just that though is it .. it is also in some way wanting to control others to make them stop using products around us that makes us sick… ( I mean the us in a general way) It may well mean fighting for some rights make changes to autonomy is respected in the system we live in of taking out the bits of bad code. I am tired so think I will leave it there for now. Once again thank you Linda.
I have had people say I am trying to control them when I have had to impose boundaries to control my health, as they were taking away my capacity to function autonomously by choosing to continue to use products that cause harm and disability, and they did not want to accept any responsibility for the harmful disabling effects they were causing once they were made aware of them.
Some people say they have a right to use what they want in their homes/gardens, but when their choices cross property lines into our homes or yards, they are infringing on our rights to exist, and their right to do what they want in their space does not give them the right to do that in my space (air, etc)