Stephen King, the renowned author who has scared us crazy with his horror stories, once described what frightens him most.
“I’m most afraid of losing my mind. You lose your identity, your sense of who you are, where you are.” –– Stephen King
I’ve witnessed the effects of seeing a loved one lose that sense of identity in a different way — through brain injury. And I’ve watched how she’s navigated the strange and frightening circumstances surrounding the Covid-19 pandemic.
My older sister, Molly has a severe brain injury from carbon monoxide poisoning, an accident that occurred in a hotel 25 years ago. Her husband, Walt, died at her side from CO poisoning. It was a living nightmare.
It is terrifying to lose your personality, your ability to reason and regulate your emotions, to lose your life as you’d built it and knew it, to lose your place in the world.
Molly has made impressive adjustments over the decades. She’s gone up and down, backwards and forward. Without a doubt, though, she is not who she used to be. As Stephen King fears, Molly lost her identity, where she was in life, and much of who she was. She is a different person and she carries on.
For me and Molly’s other family members, we discover who the new Molly is on any given day, and we do not guess who she will be tomorrow. I used to say that I redefine normal every day. More recently, I’ve stopped defining what normal is at all.
Living with Covid-19 and Brain Injury
Stephen King wrote a book that many people these days feel like they’re living in. King’s novel The Stand is about a viral pandemic, a particular strain of influenza, no less, that decimates most of the world’s population.
Sound familiar? In these difficult days of Covid-19, there’s a lot to be afraid of. Most of us know enough to be fearful and concerned and yet, not enough to know how to fully protect ourselves or our loved ones. Most of us feel some anxiety. We don’t know what tomorrow will be like.
We’re adjusting to our new lifestyles of staying home, physically distancing, working from our kitchen tables, and keeping our social contact with others from the heart – and remote.
Molly lives about 20 miles from me in a residential home with four other people who each have a brain injury. They are under strict lockdown, as are the other supportive- and assisted-living homes and nursing care facilities in Colorado.
Molly has her own bedroom with large windows. She and her housemates share several bathrooms and some common areas, including a big comfy living room, a kitchen, and dining room. She stays six feet away and mostly spends her time in her room reading, listening to music, and watching TV or movies.
Her residence is staffed 24/7 by professionals, heroes every day who come and go on eight-hour shifts. They care for Molly and her housemates by preparing meals, delivering medications, and providing watchfulness, company, and comfort. Everyone is very careful.
About once a week, I go to the house wearing my mask to deliver medicines, toothpaste, or other items Molly needs, and a large frappuccino from the take-out window of the nearby Starbucks. I leave everything at the front door and step into the yard as a masked staff person collects the bag. I can see Molly in the living room and we wave to each other and give the ASL sign for “I love you.”
Molly is being a real trouper. Like all of us, she’s missing connection in the ways she prefers. Hugs from her family members, close greetings with friends, and laughter face to face with acquaintances.
She’s following the rules and is doing pretty well managing her frustration – not easy for a person with a brain injury even in non-Covid-19 times. I call her every day and my best encouragement strategy is to remind her that she’s keeping healthy and that helps others to stay healthy too. She seems to appreciate having the larger mission of caring for others by doing the right things herself.
Living New Lives in a Changed World, Again
Many of us are experiencing various levels of confusion and fear due to a lack of knowledge or answers about Covid-19. These emotions and realities of life today are especially tough for people with brain injuries.
It’s hard for Molly to understand the widespread impact of Covid-19 and how dangerous it is. When I speak with her, I try to provide a hopeful outlook that we will get through this together, as we stay apart. I try to raise her spirits and keep her focused on the future.
I haven’t discussed with her what that future may be like.
I don’t know when or if she’ll be able to enjoy her hanging out and reading time at Starbucks, her manicure and pedicure treatments, having dinner with me or her family members at her favorite bustling restaurants. It was all yanked away suddenly and none of us know when or if we can settle into those social comforts again.
[Photo: Molly and I wear beads to celebrate Mardi Gras on 25 February, just before Covid-19.]
I know that the primary reason Molly has enjoyed these activities in the past is because she is surrounded by other people, side by side, shoulder to shoulder. When she’s out and about, she engages as best she can and she feels part of the larger world. She feels a sense of belonging in a crowd of people who don’t know she has a severe brain injury even though they may notice she’s different somehow.
I’m looking forward to hugging Molly and knowing that I won’t make her sick. I want to have her in the passenger seat of my car as she sings along to the radio the classic rock songs she loves. When that day comes, we may both be wearing masks. We will likely need to stay six feet apart from everyone we encounter. It will be a changed world and she and I, and everyone else, will be leading changed lives.
And yet, I believe Molly has made up her mind. She won’t be afraid.
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What are you most afraid of? How are the brain and mind different?
Please share your thoughts in the comments below.
We can learn a lot from each other, especially now. If you have ideas or suggestions about brain injury or living with Covid-19, please share them in the comments below. It would be great to hear from you.
Also, please share this blog post using the social media links below or forward it via email. It’s very helpful, and the more voices, the better. Thank you.
Finally, I hope you’ll sign up with your email on my website, and I’ll send you the first chapter of my book to read. You can read more of my blog posts here.
Take good care of yourself and others,
Lyrysa
Lamp post photo by Rory Björkman, on StockSnap.
Thank you, Lyrysa, for being the best little sister in the world. Your care for Molly is always so generous and loving and BRAVE! But never more than now! Thank you for being so helpful to Molly. I never dreamed that my hands would be tied as they are during this COVID 19 fiasco. Would would Molly do without your watchfulness and care. Thank you! Thank you! … Love you! Mom
Thank YOU, Mom. It’s all possible because of you. Love you, too.
I used to volunteer at Summit Care Center in Aurora until Covid. Today I was able to meet a friend who lives there outside. So things are opening up. Im sure you can visit more openly with Molly soon. That will be nice for both of you.
Thank you, John. Both my mother and Molly are fully vaccinated now. I’m still trying to get my first jab, but you’re right. Things will be better soon and we will all be able to visit more easily – and more closely than 8 feet! I’m glad you were able to visit with a friend. More to come. Take care, Lyrysa
Seeing a bright side even while it’s hidden is hope.
Thanks, Alice. I’m hopeful to a fault, and then some. Why not? We get by and stay close to each other with positivity and hopefulness. With love always, Lyrysa
Nice update Lyrysa. Thanks.
Thanks, Mike. I appreciate your attention and consideration. Take good care, Lyrysa
It’s so good to hear from you. I often wonder how your entire family is doing and of course I love hearing about the progressions Molly has made over the years. Keep healthy, wear your mask outside and know that this to will pass. I hope your mom is doing well, and it sounds like you are too.
BTW, is your book for sale, not sure if Barnes and Noble is open for business
I’ll home in Denver by Monday and can check then.
Blessings, Eileen Young
Hello Eileen, Thanks for being in touch. My book is for sale through Amazon and easily from my website. Let me know if you need any help. I also have copies myself. I hope you are well. I so appreciate your constancy and support. Take good care, Lyrysa
Hi Lyrysa – I was happy to get your email with a link to this blog post. I was actually just thinking of Molly and wondering how she — and you — were doing in this weird and awful situation, so this was very timely. I’m glad you are both hanging in there. Still fondly remembering my visit with you in Denver last year. Take care, and if you think of it, please give Molly my best.
– Al
Molly and I often recall your fun visit with us. Of course I will pass along your greetings to her, even at a distance. She will be very happy to know you’re thinking of her. Take good care and our best wishes to you and your family. Lyrysa
Thank you Lyrysa for including me in your email. You have the magic of writing so eloquently it simply captures ones attention. I enjoyed an update on Molly and am so glad she is doing so well under difficult circumstances. I still keep up with your family as a friend of your mother on facebook.. I feel like a part of your family and might have been under different circumstances and had there not been so much distance between Sally and I. We were like two ships passing in the night. My love to you and your family!
Hello Beryl, Thanks for reading and for sharing your thoughts. I’m so glad you are a part of our circle of good friends. Please continue to take good care of yourself. And my family and I will stay in touch with you. Lyrysa
Thanks for sending me the blog. I’ve always loved hearing from you. Can’t believe it’s been 25 years. Pleased to hear that Molly has such care, and comfort. I have news to share, and will email you personally. My best ways of dealing with the current situation are, cooking, yard work, and playing the piano. We did a little FaceBook live yesterday evening, as I played and sang a few songs. Loving my latest piano. A Steinway built in 1970. When things calm down, come see me.
Hello dear Marty. Thank you so much for reaching out. You are very kind. I always look forward to hearing from you and catching up with you. Your new piano sounds wonderful! And I think your activities sound perfect… and of course, sound just like the Marty I know and love. More soon. Take care and a big virtual hug. Lyrysa
Hello Lyrysa–reading this is the right way to start my day and have the right attitude. Thank you, and hugs to you and Molly, wish they could be real. Debbie
Thank you so much, Debra. I wish your hugs and mine could be real, too. Hopefully, one day soon. I need to write for our class column and pitch a story to Stanford magazine, too. It’s all on my to-do list. Thanks for your generous and kind thoughts. You are wonderful. Take good care, Lyrysa
Thanks for the update Lyrysa. Always good to hear how you and Molly are doing. Stay safe!
Thanks so much, Paul. It’s great to hear from you. Please stay safe yourself and take good care of you and your family. I’ll stay in touch. Best wishes, Lyrysa
Sometimes I feel the door opens for me to join with both you and Molly for a little stroll in the garden of life. It is Here I experience so much more than everyday life. I hope you and Molly enjoy the next hug very soon, please allow me to enjoy it with you. I love you. Your dad
Thank you, Dad, for your loving thoughts. We all love you, too. Lyrysa
Dear Lyrysa, it’s always wonderful to hear from you and know that you, Molly and the family are well and safe during these excruciating times. It must also be a challenge from day to day to keep Molly in good spirits and careful. I can only say how blessed I feel that Jerry and I live on ten beautiful acres in the Berkshires and have the space and serenity of nature around us. Stay safe my dear friend and keep me posted. Love you.
Thank you, dear Liz. You know better than most the challenges of these difficult times. And I know you will continue to be strong, grateful, and loving. It is who you always are. Thanks for your compassion and caring. Love you, Lyrysa
Great post. It made me think of a philosophical question. Is this virus harder on people who are fully cognisant but are dealing with crushing financial hardship or on people like Molly, who although doesn’t have financial worries, has lost her physical connections with her family and other people?
Hi Susan, Thanks for your thoughtful question. It’s one, I suppose, each person would answer differently. You are wise to view the possibilities from different people’s perspectives. You’re right that Molly doesn’t understand the complexities of carrying on with the stuff of life during Covid-19. She hasn’t been able to pay bills, do a job, or grocery shop and cook meals by herself in many years. She definitely does feel the pain, however, at many levels, of not being in contact with people she enjoys and loves. This is the biggest change to her existence, and I know it strikes hard for her. It is a fair and kind way to be in these times of Covid-19 — to think of what each person’s individual struggles and difficulties might be. Thank you so much for bringing this consideration to our hearts and minds.
Lyrysa – this captures and portrays so much! Times are truly challenging, and this inside view into your lives, with the extra challenge of Molly’s injury, adds depth and meaning for all of us. Thank you! YOU are a hero!
Thanks, Paige. You are very kind and I really appreciate your perspective. It is interesting how many of us are finding meaning in aspects of our lives that once seemed ordinary. For both large events and small moments, there is much to be grateful for and to be compassionate about in these challenging times. Take care and much love, Lyrysa
I agree with your friend who said “I can’t believe it’s been 25 years” since Molly’s accident. What an extraordinary journey it has been for your whole family. And it changed the trajectory of your life in ways I’m sure you could never have imagined.
Thanks, Barbara. The “ripple effects” of a loved one’s brain injury are an ongoing and constant challenge. I also know our family is very fortunate for many reasons. We have a great Team Molly, and I’m so grateful you’re a significant part of our team. Thank you.
thanks for the article I enjoyed it. You are amazing.
Thanks, Paige. You and your family are so important to Molly’s story and we think of you all the time. Stay well and take good care. ~ Lyrysa
I always feel better after reading your blog, thank you. We are trying to figure out how to get Henry moved to a place like where Molly is living but Covid makes this a challange. It is becoming increasingly more difficult to keep Henry positive because his living situation is so dreadful & then you add Covid & isolation & it doesn’t help. I may send him the link to your page so he can also read your blog & maybe that will help him.
Thanks, Dana. You are a kind and generous mother, caregiver, and friend. So many things are more challenging than ever right now. We will get through this, so I do believe it’s wise to begin your search for an appropriate place for Henry to live. It takes time but I’m confident you will find a good fit; one that works for him, and his family. Thank you, Dana. Take good care.
P.S. BIAC has a useful resource page of Residences: https://biacolorado.org/?s=Residential+&submit=Search&post_type=resource_directory
Hi Lyrysa, this is Ed West, one of Molly’s friends from SY and the Y’79 swim teams. I hope Molly, your family, and you are all as well as could be expected in the Time of Omichron. I got Covid two days before I was supposed to get vaccinated in late March 2021. I had a pretty bad case of it but even though I still have one permanent consequence, I feel very lucky to be “here” (so trust me, Molly‘s “isolation” has probably been well worth the “emotional” cost). Although I haven’t been to the last several ‘79 Reunions (but when I did go, I always made sure to find Molly and you if you two were there), I did buy your book when it came out, I also try to “check in” on Molly and you from afar “via” your blog and through our mutual ‘79 friends every once in a while – but less frequently than I should (like tonight) for which I apologize. Now that vaccinations/boosters are readily available, has she been able to have more visitors despite Omicron? How is she otherwise doing? How are your family and you doing? Best wishes to all of you for a better 2022!
Thank you so much, Ed, for reaching out. I am so sorry about your case of Covid-19. It must have been terrible, and very concerning. I am so sorry that you and your family and loved ones went through that. I am so glad to know you’ve recovered pretty well. Yes, the isolation and separation was vitally important and I’m relieved that me and Molly and our family and friends all abided the suggestions to stay safe — and we did. My older age parents, Molly, and family members are all fine and have stayed well. Now we are all triple vaxxed and still staying masked and keeping our distance, especially indoors anywhere. I’d love to catch you up on how Molly is doing (really good!) and hear more about you. I will email you. I am also planning a blog post in the next few weeks about Molly’s recent successes and news. Stay tuned! And thank you for connecting. Take care.