‘Welcome to my World’, so said my youngest, V, when lockdown struck.
Almost six months on, I have a deeper glimpse into V’s world. But this is not a temporary world as for most of us.
For V this shall not pass. Not so much.
V was diagnosed ten years ago at eighteen with Asperger’s Syndrome (a high functioning autistic spectrum disorder – ASD). V struggles with aspects of social communication, such as reading certain social cues. Chronic anxiety, depression and the need to retreat means V is socially avoidant outside the home. Online is where V’s world exists, with friends of many years.
How can you have real friends you’ve never actually met? Such was my worry, before I started blogging. Now I know…we can and we do. Heck, I met my husband online…but that’s another story.
Lockdown world over means confinement to our home and garden (if fortunate enough to have one), leaving the house only for essentials and no socialising with anyone outside our household. Now we are keen to relay our lockdown tales of where we walked, how we ate, what we did or didn’t, how we coped, what we binge-watched (Ozark, anyone?).
Safe to say, a good few said sod the toilet roll, so long as there’s gin…
But lockdown brought a dark side. A shocking rise in domestic violence. A seeping loneliness for those isolated from their loved ones. And a hard toll on mental health for many.
The internet became our refuge, our place to keep in touch and communicate. But imagine if your social life is always online and not just for lockdown? Watching the world before you achieving, doing, laughing, playing. As some say, living your best and so-called perfect life.
And V cannot do any of it. This does not mean V is a social misfit, whatever that actually means. If it means not being the same as everyone else, then I know which I’d rather be. I wonder how much lockdown has changed us all in a world those like V know too well.
A doctor once told V they were “special” with a “gift.” I wish I could have brought that doctor home with us so she could have heard V’s enraged and wounded response.
If feeling like I’m drowning means I’m special, then I guess I must be.
V wants a life, of course. And I think about my life now, too. The longer I stay home, the longer I don’t want to go back out there. I don’t like the world out there. Our beaches are overrun. Our roads are chock full of traffic, walkways too narrow and difficult to socially distance.
As for pubs, no chance.
Finding myself housebound (broken ankle) on the heels of lockdown easing, threw me for a loop. Only now, nine weeks later, I am starting short walks outside, unaided. Very soon, I hope to drive again.
But I’ll let you into a little secret: a part of me can’t wait, but the other? I’ve lost confidence, I’ll admit. I don’t want to go back to navigating busy supermarkets with a facemask steaming my glasses, getting covid rage all over again when someone invades my space. I don’t want to people-dodge all over again.
‘Now you know how I feel, every day,’ said V.
V is right. Now I do, but only a little.
And there is light. Always light. V’s world never fails to surprise in different ways.
For example, masks are now compulsory in the UK in shops and of course anywhere medical. But V wore masks long before Covid-19. Having read a couple of years ago about a high risk of a SARS-like virus soon to invade the west, V purchased a large pack of masks from Japan and wore one to a hospital appointment last year.
You bet it raised some eyebrows and quizzical stares.
This might sound odd to some, but it made perfect sense to V, who not that long before had been struck down and admitted to hospital with an unknown virus. Why risk a repeat?
Thanks to V, we already had our masks at the ready when Covid struck.
Who knew? V did.
And something else: a mask serves dual purpose for V.
‘I feel safer with a mask, more secure’, V recently told me. ‘It makes eye contact easier, I don’t have to worry what the other person thinks…I’m not so anxious about them or myself…’
This reminded me of part of V’s diagnostic testing for Asperger. Reading the Mind in the Eyes Test, developed by Professor Simon Baron-Cohen, which “…assesses the extent to which people are able to attribute thoughts and feelings to people based upon the expression in their eyes.”
The mask hides our facial expressions, so we “neurotypicals” are at more of a disadvantage reading subtle changes of emotion in others. For V who for instance, can’t tell the different between worry and anger, this is perfect. V has discovered help with social anxiety. This warrants further exploration, I think.
Ten years after diagnosis and our current crisis aside, V seeks to find a way out of permanent lockdown to pursue a love of travel, learning languages, of Japanese and Nordic culture, and of their art.
Pretty heroic, I would say, at the best of times.
While bringing her memoir, ‘Stranger in a White Dress: A True Story of Broken Dreams, Being Brave and Beginning Again’ to publication, Sherri’s articles, short memoir, personal essays, poetry and flash fiction are published in national magazines, anthologies and online. She invites her readers to share the view at her Summerhouse blog and is a regular contributer and columnist at ‘Carrot Ranch’, an online literary community. In another life, Sherri lived in California for twenty years, but today, she lives in England writing stories from the past, making sense of today and giving hope for tomorrow.
Sherri,
Thank you for your post. Labels can be restrictive. Even kind words can bounce unexpectedly. May V find the strength needed to succeed in all of his dreams.
I believe we all are differently-able. Once I was so quite a child that my parents thought I was retarded (an acceptable word at the time). And for a very long time I lived up to their expectations of not being social. Until the time they forced me into a social situation where I saw someone else getting picked on worse than I had been. I defended them – and of course became the new victim to a group of people I would never see again.
That new found confidence lead me to be active for many years in different ways, which was helpful for raising my own children – now however I find comfort in limited contact. I’ve ‘done my time’ being the social butterfly. Now being retired I can focus on doing whatever I choose. Which may not be fulfilling the potential that others may see.
I believe I will not loose my ability to be honest and fight (however limited) for justice. I suppose I have always been opinionated but not may would listen. I believe writing for a blog, and the friends I’ve made via the internet give me both right balance of confidence and anonymity.
May our growth only be limited by the individual choices we make to keep ourselves safe. Everyone is differently-able and should feel comfortable in stretching as well as withdrawing.
Jules, thank you so much for your honest, and insightful and kind words. Being comfortable with who you are and where you are in life is a great blessing. Words like ‘retarded’ and ‘backward’ (in the UK) leave life-long scars. A relative, labelled as backward at school in the 50s would today be diagnosed as dyslexic. That’s quite a situation to discover new-found confidence. I was labelled as ‘shy’ and surprised those around me when I stood up for myself. There is a big different between being shy and an observer 😉 There is a misconception about Aspies that they have no empathy. I would counter they, like V, have too much. It is exhausting when the mind never rests in perpetual anxiety. Getting the balance right between ‘stretching as well as withdrawing’ is essential. I am so glad you have found yours, and your voice, through blogging.
Thanks, Sherri. A captivating portrait of a life (lives) under (during) COVID. My best to V.
Thank you, Bill, greatly appreciated, that.
V sounds amazing, and it’s so true we’re just getting a tiny glimpse from quarantine what it’s like to have one of these conditions. Thank you, Sherri, for sharing an excellent post on Asperger’s.
And I thank you greatly…and have to agree, V is pretty amazing 🙂
Thank you, Sherri, for this lovely post. My oldest son and I are both OCD and the symptoms are quite similar. My son is worse that me because he also suffers from PTSD. He has more compulsions, but we are both obsessive. We are both germaphobes so this virus has been very tough for us. I also already had masks so we were also prepared. I find it quite pleasing in a way that people have to wear masks as it is so much more hygienic. Isn’t that awful? Your son is not alone. And I’ll tell you a secret, Asperger’s and OCD people are usually very intelligent.
I am on the same page as you, Robbie and don’t think it’s awful at all. V and I are just the same. I can just imagine how tough its been for you and your son, and PTSD too… I get that. Long before Covid, I dreaded going inside any public place and having to queue up with people hacking and sneezing everywhere. I got ill more than once that way, despite being an avid hand washer. This is exactly what V wanted to avoid, weird looks or not. And thank you for sharing your secret…you are spot on 🙂 The very best to you and your son in these challenging times, Robbie.
I have become very sick from people coming to work sick, Sherri. I also picked up swine flu on a flight from the UK. Other people don’t care and they just carry on sick or not. I was so ill with swine flu I avoided shopping centres and the office as much as possible last winter. This year we’ve had lockdown and I haven’t been sick once. I can relate to both you and V too.
Ugh…tha’s awful, Robbie. Swine flu of all things… I totally agree. When I lived in California, I flew every summer ‘back home’ to England with my three children. Those long haul flights always, I mean always, gave me such bad colds they went into repeated sinus infections and bronchitus. Like you, wearing a mask and being housebound pretty much for the last 6 months, I haven’t caught any bugs. In January, my husband had a terrible cough that lingered for weeks. A young man in the office was very ill and had 2 weeks off sick at the time, but he gave whatever it was to most of the office. Mercifully, I, V nor my mum (84) didn’t get it. Who knows what that was? They are all returning to work full time from next Monday, having worked mostly from home. Many, understandably, are very nervous. As V’s carer and Mum living with us, I am too. Hubby and I need both to stay well…and I know you understand that kind of anxiety, too. I am so glad to have this conversation about the other side of lockdown, Robbie. Take care, you and your son, and continue to keep safe and well <3
It is good to acknowledge the positives, Sherri. People are more aware now of how viruses are transmitted and that is a good thing. Hygiene has definitely improved and hopefully, these good things will last. I hope you and your family make the transition back to working in the office easily and keep healthy.
A great point and thank you, Robbie, you too <3
Great post, Sherri. You’ve expressed responses to the lockdown that will be the same for many, I think. Your anxiety about re-entering society is something I fear also. We haven’t had a lot of cases here. We’re pretty safe in Australia, particularly where I am. But recently, there’ve been a couple of cases near me and I’ve been anxious about going out – more anxious about having it and not knowing and then spreading it, strangely enough, than having it. I certainly don’t want it, but more than that, I don’t want to give it to anyone else. This is one thing I don’t want to be known of as a super-sharer.
It’s interesting that you have been able to gain an insight into V. life’s through the lockdown and that she has been able to explain the similarities, even if they are only in a small way. We are all suffering the loss of plans that remain unfulfilled this year. It must be more difficult when it is hard to find a thread of hope to hold onto.
I hope your ankle is healing well and that you ease yourself back into a happy and safe life outside and that V is able to enjoy working towards some of her own goals too.
Take care. SMAG! 🌻
Thank you, Norah. I am glad to hear you are relatively safe in your part of the world, but yes, even one or two cases is enough to make one nervous. Here in Somerset, we have had over a thousand cases, but that is nothing compared to other areas. In fact, we are one of the lowest in the UK. But I’m sure you’ve seen the numbers here and they are not good, though so far, apart from some localised rises, things are staying low and relatively under control. So far…but the schools have just gone back and most are going back to work, though hesitant. My husband included, as of next week… so we are all quite nervous at the moment. I know what you mean about worrying about spreading it to others. This is what makes it so insidious, we just don’t know. My middle son was very worried about being a super spreader. He lives in Brighton and said it’s been impossible to socially distance there with so many cramming the streets. He is young and not worried for himself, but very concerned about giving it to any of us, especially since we were shielding my 84 year old mother. But the kids came to stay at last after 6 months (we socially distanced in the house and no hugs…hard, that!) and we are all fine. I am on the mend and walking outside little by little…driving soon hopefully! Now to gain back some confidence, not easy in present times. Keep safe, Norah and I’ll do the same…and thank you for your kind thoughts for V. SMAG 🙂
It is hard to socially distance with family. We have Father’s Day coming up on Sunday here and we are still told ‘no hugs’ unless you’re in the same household. We’ve actually been hugging our grandkids for a while. It’s difficult with the little ones. We do what we can when we’re out and about though.
I was a bit sad for my granddaughter and her friends last weekend. Our restrictions had eased for a bit and we were able to have – I can’t remember the number but more than 10 – in our homes or in outside gatherings. Then there were a couple of new cases and the restrictions immediately went back to 10. My GD had been invited to a birthday party that day which then had to be cancelled because there were more than 10 guests and the increased restrictions (back to 10) were effective immediately. It seems a bit pointless in some ways. They are together at school, in bigger numbers, every day, why not at a birthday party? I was surprised at how well GD accepted it and the changes that were made to the celebration. The birthday girl dropped a cupcake and a candle off to all the guests and asked them to video them blowing out the candle. While they didn’t Zoom it, which I thought they might, another friend is zooming her party. Such a different experience for everyone. Yep, we all need to take care and beat this bug! 🙂
I will be thinking of you this Father’s Day with your family, Norah. What a lovely idea to blow out a candle on a cupcake, if not at the party itself. You must be very proud of your Granddaughter for handling the disappointment so well and at such short notice too. That’s tough for children to handle. Our restrictions still mean no more than 6 people gathering outside and only two households together inside, but can stay the night. Grandparents were allowed to hug their grandchildren some while ago. I can’t imagine not being able to do that, I am so glad you have been able to hug yours. My middle boy formed a bubble with his older brother and partner, so essentially they were one household coming to ours, but we still only met Mum (Granny) in the garden, socially distanced. We had just had a heatwave but the weather that weekend turned cooler and rainy. Still, rain or shine, we didn’t let that stop our long awaited family BBQ all together 🙂 As you say, we are all just trying our best under surreal circumstances. I am seeing my chicks again next weekend for my birthday and can’t wait. Have a wonderful Father’s Day celebration, Norah. SMAG! <3
Have a wonderful birthday, Sherri. It will be so nice to have all your chicks together again to celebrate, and your Mum there too. Enjoy the celebration! Hopefully by this time next year, you’ll be able to celebrate ‘normally’.
Thank you so much, Norah. I did have a really lovely family birthday, it all worked out very well. I hope too your Father’s Day worked out for you and your family. Yes, let’s hope things next year we will all look back on this time and say how glad we are it’s all over… I’ll catch up with you asap, Norah. SMAG! 🙂 <3
I know I’ll be glad when it’s over, Sherri. Stay safe and well. 🙂
Me too, and thank you, Norah, and same to you. And of course, always, SMAG 🙂 <3
🙂
Reblogged this on A View From My Summerhouse and commented:
September already and here we are. Greetings once again, dear friends, I hope you enjoyed a good summer, pandemic aside. My plans went awry then revived and I am writing, mending and walking again. Progress! Great to return to Unsung Heroes at Carrot Ranch. My post explores a personal take on lockdown, Asperger’s Syndrome and social anxiety in a different world. As always, keep safe <3
Just this morning I had an encounter with a cashier at the co-op who didn’t understand that there were two varieties of “pink” apples, and I was struggling because I sometimes forget one of two-name items. She said it was “a pink” and yet I knew it was “a ____ crisp.” So, I asked, “A pink crisp?” She got snippy and said, “Yes, a pink.” I said, “But not a pink lady.” I didn’t want to get charged for the more expensive of the two apples. Again she got irritated and repeated it was “a pink.” The point is, I felt so frustrated, understanding that there were two varieties and I didn’t want to be overcharged but I forgot the full name of the one I selected and the cashier didn’t hear me that there were two different pink apples.
It’s in moments like my encounter that I feel so deeply for how easily neurodiversity is dismissed. Whether autism, brain damage, dementia, stroke, stress, menopause, or other causes, it’s deeply frustrating to not be able to be understood. For those who live with issues constantly, it’s more than frustrating. I agree that V is heroic, dreaming for the future, and living daily life in balance.
COVID is a phenomenon that has struck us all. It has created global lockdowns and shared emotional responses. It’s a chance to understand what lockdown must feel like for those who don’t need COVID to feel shut out of life or not heard or afraid to interact. My greatest hope is that people can develop empathy during this time.
Huh. I’m struck by V’s response to masks. I have had a weird sensation lately, actually LIKING my mask despite fogged glasses and sweaty chin. I have felt like it takes less energy to go out in public, although I also feel sad that I feel more disconnected, too. When the apple issue rose, I definitely felt disconnected from the cashier. Somehow we need to be more mindful of the silent heroes among us.
Wow, Charli, how I relate. Your ‘pink apple’ interaction was no light thing and the way it left you feeling. I am sorry you experienced it. Thank you for pointing out the many ‘hidden’ reasons for brain-fog, including menopause and how we need to be more mindful of them all. On top of which, stress and anxiety does not a clear mind make! Overload sends our memories scrambling and sometimes those right words do not arrive… getting snapped at does not help! The longer I am not going out, the longer I don’t want to. And I get the mask security too. But also like you, I find my growing sense of disconnect troubling. I am beginning to understand on a deeper level how V got to the point of becoming socially avoidant. This creeping isolation and insecurity…it can overtake. My early lockdown experiences of going out to ‘The Wasteland’ have left their mark even now. And it was people invading my space and coming too close and hacking and sneezing around me that did it. It sucked all my energy and I returned home exhausted. I wonder how I will return to those days of going food shopping on my own when I can drive? I am not looking forward to it one bit. V’s every day world. Thank you for sharing your experiences and wise insight, Charli. As for pink apples, here’s a story: V’s favourites are Pink Ladies, I kid you not. Just yesterday, Mike went out for groceries and as he left, I called out, ‘make sure to get V’s Pink Ladies, not Golden Delicious. As for Pink Crisp, I havne’t heard of them! <3
After reading your words, I continued to read ALL of the comments. Your words moved me as did the responses. The old saying ‘walk a mile in someone else’s shoes’ came to mind and reminded me how lucky I am to have not had to deal with the issues that other have.
What we read/hear about in the news is nothing compared to what every individual in all walks of life is having to contend with. Reading the responses, allowed me to see beneath the big picture, and know each story, while the same on the surface, is totally different when you look inside the ‘home’.
Thank you for sharing your story Sherri, as well as everyone else who has taken the time to respond.
I feel strongly led to write ‘what lies beneath’. I have endeavoured, over the years, to explain Asperger’s and the way it affects my youngest and our family to bring not only awareness but acceptance, more than grateful to Charli for allowing me the opportunity to do so here. It’s an honour, encircled as we are by our fellow Ranchers. Thank you so much, Ann, for taking the time to read the post adn comments and your kind and considered response.
Love this post, so relateable my friend. The more I feel I’ve become a hermit and quite enjoyed the empty streets in the first few months, with our traffic-laden streets, the more anxiety I get driving in the rat race. And V has it right. The eyes are truly the windows of the soul, if you know how to read. <3 Stay safe my friend, and cheers with our pretend margaritas. <3 xoxox
Thanks so much, Deb, I love what you say about the eyes and V <3 I know exactly what you mean about those quiet months, skies so blue and nature having a beautiful though sadly short-lived breather. Now the rat race and resulting anxiety is worse than before. More important than ever to keep vigilant and stay safe. You too, my friend, and cheers to you and all of that! <3
And back to you my friend. <3 xx
<3 My friend xxx
So much potentially to pick up in this thoughtful and moving piece, Sherri. I want to say plaudits to V for rejecting the special label – I think it’s less prevalent in health care than it used to be, but it’s a damaging attitude, designed to protect staff rather than people who use the service. It also crops up in some religious cultures, including the Catholicism that blighted my childhood. Hey Ho!
Arrgh…that’s a tough experience to come through, Anne. So sorry you had to endure that. Thank you for your thoughts on this. I feel I would like to go further in developing it at some point. I’m way behind here and everywhere at the moment, but thanks so much for reading in my absence.
I’m so grateful to have discovered your blog, Sherri, after you popped by mine for a visit!
I’ve spent the past six months here in Los Angeles exploring this new interminable reality through my own blog, and trying to find a path forward through it. I can at least say it’s been a period of renewed appreciation for the virtues of kindness, patience, human contact, and moral imagination. What things might look like on the other side of this I can’t speculate (it’s hard to predict how pandemic-induced PTSD will affect things moving forward), but I hope we at least emerge a more empathetic people — more sensitive to the everyday realities of those unlike us.
Until then, all we can do is use the tools of communication we have at our disposal to express ourselves as honestly as possible. If this post is any indication, your blog will be one to follow…
Hi Sean, likewise, I have learnt a lot in just one of your posts (so far!) and it’s great to meet you! 🙂 Thanks for much for the follow at The Summerhouse and for commenting here at Carrot Ranch. I’m honoured and deeply grateful, thanks to Charli Mills. for the opportunity to feature here at her blog as a regular with my Unsung Heroes column.
I hear you on all fronts.
The cost on mental health and PTSD will be incaluable. Not to make light of it, but I felt I came close to losing it a few times when out there in the ‘wasteland’ in the early days of the pandemic doing the weekly essential grocery shop for my family. A broken ankle just as lockdown eased saved me, I think!! Not my husband though, who on top of working full time had to pick up the slack. These are crazy, surreal times.
And I wonder how it must be for you in LA now. I lived on California’s Central Coast for almost 20 years, my children are all dual US/UK citizens. My now ex was born and grew up in LA, the grandparents, my in-laws, lived there. For a short time before all that, I lived and worked there on Wilshire Boulevard. Many many years of memories of my life there…but never during a pandemic.
But yes, communication and honesty is vital. I really appreciate your insight, thank you so much for reading, Sean.
Sherri,
My wife and I — both native New Yorkers — have had the good fortune to be able to work from our home here in L.A. the past six months; we haven’t left the neighborhood and have barely left the house! That’s had its own challenges, none more so than the fact that all our family is in NYC and we just don’t know when we’ll see them again; it could literally be years from now before we’re reunited.
At least she and I have each other’s continued company, and perhaps at some point in ’21 we will make our escape from L.A. — as many are now considering in California’s new climate reality — to return to New York. We’ll see.
Right now, I’m not looking past November 3, because here in the United States we are facing down two completely different possible realities — one hopeful, one horrible — so I can’t plan beyond the impending threshold at which we branch off decisively in one direction or the other.
SPC
Sean, I wish you and your wife all the very best in the coming days/weeks/months. So much hangs in the balance, I get that. My adult children and I are heavily invested in California’s present troubles and it’s worrying future, and of course when it comes to the election… we can but hope and pray not for the horrible… I hear first hand from my decades-long friend in CA about it all and stories shared by her son-in-law, a firefighter just returned home to his family after weeks away for long stretches up in Big Sur and such. Tragic, all of it. I remember a terrible fire in SLO when I lived there, how the sky turned orange and brown on the central coast for days. But that was just one big fire… now, it’s truly horrifying. We here in the UK are also experiencing wild swings in the climate, with a noticeble change to more tropical temperatures but we don’t have air conditioning. You’d think we’d be used to the heat after living through 115 degree summers, but it can “only” be in the high 80s here and it feels worse somehow! Sean, I know the pain of being separated from your family and not knowing when you might see them again. I hope you will be reunited sooner rather than later and that you find your way back home, wherever you decide that will be. Take care. Sherri.
Thank you, Sherri. Such a powerful and important post.
And, as always, so well written.
Best wishes to you and yours.
Emma 🙂
How lovely to read your kind words this morning, dear Emma, thank you . I hope you are keeping safe and well in West Sussex, a place very dear and close to my heart 🙂 <3