Have you ever been so happy that you were afraid? Perhaps that it was all a dream and you would wake up? Or perhaps that you were so happy that the gods themselves would strike you down?
That’s where I am right now. I live in fear. Of something that I cannot even see. A thing called Covid-19.
Am I Crazzy? Obviously, I freely admit that.
But am I over-reacting?
Unfortunately, probably not.
My partner Alan has asthma. He has for his whole life. That puts him in one of the high-risk groups.
Add to that the fact that his immune system has been weakened. First by food poisoning on our trip to Disneyland Paris in 2018 and then by the continued exposure to allergies brought on by our guinea pigs. He is just beginning to recover from those double whammies to his immunity. Now, this?
What do you do? How do you live with this fear when you are a high-risk or love someone who is?
Yes, the first reaction is to hide away. To close off @HomeCrazzyHome and wait for this thing to pass. And maybe if we lived in the country that is exactly what we would do. but in the middle of a medium-sized city, that had the first reported case of the Coronavirus in Wales that is not very realistic.
I feel horribly torn, too. The two people I love and live with have conflicting needs on this one. It would be almost impossible to self-isolate as they have coined the phrase. PanKwake is an extrovert. Yes, she may not like to leave the house, but she wants/needs to see people every day.
People who may bring the very thing I fear into our @HomeCrazzyHome.
To isolate her, who is not at risk, might damage the emotional health that we have worked so hard to build in our autistic child. She would be miserable. Yesterday, after a week with loud builders and little outside contact due to other forces, we made a trip to Cardiff for Build-a-Bear and TGIFridays.
Then I sneezed. Yes, I just sneezed. And I can’t help but wonder…is this IT?
So, if self-isolation is not viable. Then what do you do?
We are taking some precautions. Yes, we bought extra hand wash. And yes, my prepper tendencies are sending me on a big shop tripping this morning.
But beyond that, we are doing the type of adulting that makes me even more aware of our vulnerability. We are getting our lives in order. We are working on wills and are considering moving our wedding date forward.
You want to talk about things that push those fear buttons – that is it. To have a calm, sane conversation with your exceedingly practical and stable partner and have him agree that might be a good thing. As soon as possible?
This fear is not a stranger. It is an old enemy, in fact. I have lived with it twice before with my children.
The first time I tasted it was when my son, the one that is now at Cambridge, was three years old. We had waited to have him vaccinated because his older brother and sisters both had bad reactions every time they were. I thought if we waited until he was older then his body might cope better. We have the shots on Friday and all was well.
Until Sunday morning, when his temperature shot up very quickly. I was trying to bring it down with a tepid bath when he began to seize violently. I grabbed him and ran to the phone dialing 9-1-1. For the next half an hour I held my child wondering if he was going to die. Even as we drove fifteen miles across Texas county lines to the hospital.
That was not the end, though. For the next few years, he continued to have the absence seizures and myoclonic ones in his sleep. I remember lying in bed next to my sleeping son as his body jerked dozens or hundreds of times during a two-hour nap. I wondered…how do you go on if you lose your child?
I suppose some could say there is a happy ending. He did not die. He finished university, taught in China for two years, got married, completed a master’s, and is working on his Ph.D. at Cambridge. But he still has sleep paralysis at times.
So, when I was out to dinner with my second-husband and we got a phone call to come home that @PanKwake was having a seizure, it was like my nightmare had returned. In some ways, this time was worse. With my older son, I always knew that somehow I would have to find a way to go on, after all, I would have three other children who needed me. This time, though, all my other children were older, they did not need me. Within a couple of years, even my marriage had broken down. I was a single mother who lived for her child. And I lived in absolute fear of SUDEP – Sudden Unexplained Death in EPilepsy. I write about that experience in my current WIP, Night Walker’s Woman.
Jaycee paced back and forth down the hallway. She opened the door and checked on her sleeping daughter several times. She would pause there until she heard the raspy wheeze of her snores or could see the soft rise and fall or her chest. If she did not, then she tiptoed into the room and softly laid a hand on her tummy until she felt the gentle rise and fall of her chest that confirmed the child was still breathing.
SUDEP, it was a horrible acronym. Sudden Unexplained Death in Epilepsy. It was also her worst nightmare. The possibility that her daughter would go to sleep and never wake up. It occurred in just one to two percent of those diagnosed with epilepsy, but they were almost all either children, teens or young adults.
She shivered at the thought. It was not the first time. From Angel’s first seizure, Jaycee has scoured the Internet seeking information and support. On place that she received that support was an online forum run by the Epilepsy Foundation. Her eyes filled with tears as she thought of that first night that they were home from the hospital. She had come across a posting on the forum that would stay with her forever. A mother wrote about putting her daughter to bed for her nap. The child had begged and pleaded for another story, but the mother refused and closed the door. When she went to wake her daughter, she was dead. The woman was filled with guilt, not only over the death but the story as well.
Jaycee swiped her eyes with the back of her hand. She had to stop thinking about the worst, she told herself. But on days like this, it was virtually impossible to manage. Bad days always brought out the worst of her fears. Of course, there was no telling when Angel would have a bad day. Or why.
Though @PanKwake has been seizure-free for almost four years and the doctors have released her from their care, saying that she has outgrown whatever form of childhood epilepsy she had, there are still the rare days when she oversleeps and I slip into her bedroom just to listen to her breath. And once or twice, I admit I have climbed the ladder of her bunkbed and felt for the rise and fall of her chest.
But living with this feeling with your soul mate, the one true love of your life, is different. Wondering how far off the mark was Edgar Allan Poe when he wrote:
Could the goddess that I have come to see as the mother of all and love personified really be so cruel as to give me this man beyond my dreams, only to take him from me so quickly? Is it really better to have loved and lost?
Then, I shake myself. I tell myself that I am being irrational, that I am living in fear, and that does no one any good.
So, how do I live with Covid-19? Knowing that it could be a personal apocalypse, even if not a global one?
We do the practical things, like going shopping for that 30-day supply. You wash your hands more. You do those hard things too, like wills and maybe even civil ceremonies, in lieu of that ‘real’ wedding. You live in this moment. You hold hands as you talk about your worst nightmare. You cwtch and kiss a bit more and a bit harder. And you write stupid blogs, not because anyone reads them, but because writing has always been the way that you deal with your shit.
And you remember these words:
Goddess bless and keep each and every one of you and yours safe in her love,
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