Month: March 2020

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I am not Okay

If you were to ask me how I’m doing you would get one of several answers, depending on current mood and how honest I feel like being. Surviving. Hanging in there. Taking it day by day. But the truth is, I’m not doing well at all. I know I’m not alone in that. Plenty of people are not doing well. But it’s not the same. For the better part of 2 years we had to constantly be on guard. Make sure Ariella’s counts were okay before making plans. Plans cancelled at the last minute. Vacations cancelled. Witnessing Ariella miss out on the things she loved so much; dance, camp, school. The things we are all missing now. But the difference then was we were alone in it. We were missing life, yet life continued to go on around us. Constant reminders of what we were missing while we were camped out in a hospital room or stuck at home. I know that if Ariella was here it wouldn’t be a walk in the park. I know there would be frustration and complaining and attitude. I understand why parents are anxious and stressed and worried. But you’re not alone in this. There is a solidarity, a comfort in knowing the world is right there with us. I can’t speak for David but I felt very much alone throughout Ariella’s diagnosis and even more alone now, despite the support we have. Because there are few that understand how this situation affects someone who has already experienced significant trauma. PTSD is very real and very prevalent among bereaved parents. Everything about this is triggering. The fear of loved ones becoming ill. The constant reminders of hospitals, life support, ventilators, masks, all of it. Hearing people complain about homeschooling, being stuck with their kids. As I said, I know it’s not easy. I’ve been there, home or at the hospital with Ariella, when she couldn’t go anywhere. It was hard, especially when she knew her friends were doing things without her. But it was also fun, and rewarding, and special. We got creative and crafty. There were game nights and movie nights. Lots of time spent reading together. Please just keep that in mind when about to post on a public forum about how terrible it is. It is terrible in a lot of ways. And there is nothing wrong with venting frustration. But not in a public forum. When so many people wish for a second they were in this with their loved ones, whether a child, spouse, or parent.

It had been questioned if the cure is going to be worse than the problem, in the context of the economy. I have a very real fear about the cure being as bad as the problem, not financially but in terms of mental health. This isolation is going to take its toll on a lot of people and I worry about the emotional suffering people are having to endure. As I mentioned, those who have experienced trauma are likely to be experiencing PTSD or other symptoms of anxiety. Anxiety symptoms are ramped up for those who already had anxiety and those who didn’t seem to worry about anything are now getting a taste of what it’s like to live with anxiety. The world is on edge. Everyone is at the very least unsettled, but there are I’m sure a large number of people having difficulty coping. Even as an introvert I am missing the social interaction and connection. The gym was my release. It was the first thing I got back to after Ariella died and has been the only thing that has made me feel okay. I am grateful to my gyms for doing live stream workouts, but it’s not the same. And though my leg is healing, I still can’t run, which was my ultimate way of forgetting everything else and just being in the moment. I think in the end, some will come out of this much stronger, but others will be traumatized and continue to suffer. I was already suffering, not sure how much more of this fear, uncertainty, isolation, I can handle.

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Pandemic

I can’t not write about this. This pandemic provides a fascinating study in human behavior. David and I did our weekly shopping Saturday morning. We go to Trader Joe’s and are always there on the early side. But this day we wanted to be sure to be there right when they opened. And we were. Along with the rest of the community it seemed. But I was pleasantly surprised. The shopping itself felt frenetic, but mostly due to the sheer number of people in the store. The aisles are narrow and it was hard to get around. But most people were reasonable (other than the guy that was running through the store and slammed into David with his cart) and not hoarding (except for the lady with 10 packs of meat, all of the frozen vegetables, and multiple gallons of milk). David found a pack of toilet paper that we didn’t need, made a joke about selling it and put it back on the shelf. No one around us then fought for that last pack. Overall the mood in the store was pleasant. Making jokes for some levity, understanding we are all in the same boat (except that one lady who didn’t seem to give a shit), and just getting along. Though they had to have been exhausted and frazzled, the Trader Joe’s employees had big smiles and were friendly and helpful, as usual. We were able to get everything we needed that Trader Joe’s carries, except cabbage. We knew we would also have to go to Wegman’s to pick up some things Trader Joe’s doesn’t carry. I was pleasantly surprised there as well. Though there were people in the store it wasn’t nearly as frenzied as Trader Joe’s. Of course the store is bigger so everyone was more spread out. A lot of things were picked over but again, with the exception of a couple of people with cases and cases of water, most people seemed to be reasonable and rational. In the media we see the worst. We see the worst in people, we see the worst case scenario, we see the panic. We see so much of the bad that we often overlook the good. But the good is there and the good is how we are going to get through this.

In my previous post I said I wasn’t worried about the virus. I’m not. But I’m extremely unsettled, as I’m sure most of us are. All the talk of ventilators and ICUs and lungs and breathing brings me back to exactly one year ago, when that was our life. I was already thinking and thinking about that time and am having the same feelings, same anxiety, same emotions. More than just remembering, I am living it again. The only thing that has kept me sane was exercise. Going to the gym is not the right thing to do (and as I am writing this Governor Hogan just issued an order closing all gyms among other things) and I hurt my leg running a couple of weeks ago so I can’t run. I went for a walk but it just doesn’t have the same affect. Without exercise I feel even more restless, unsettled, anxious, and stressed. I am desperate and actually ordered a Peloton bike. Won’t be here until the 31st though. Without working and with no place to go, there are so many more hours in the day to fill. Much more time just to think, be alone with my thoughts. It’s not a good thing. As challenging as I know the next few (or more) weeks will be for parents, I would give anything, ANYTHING to be in that position. So please, please just stop complaining about being quarantined with your kids. You are not special, you are not the only ones in that situation, and complaining doesn’t get you anywhere. The individual complaints are just plain ridiculous. Because this affects EVERYONE. David and I were supposed to go to Boston in a couple of weeks. See some friends and support another foundation. We don’t have much to look forward to so when we do, it helps us get through the days. It’s disappointing, yes, but everyone across the country is dealing with disappointment. Instead of complaining, think about how you can help. How you can make things better. And be there for those who may find this even more crippling because of their personal life experiences.

I started this post talking about human behavior. And you see all types in times like this. Those who are helpful and those who cause harm. Those who worry about the greater good and those who are selfish and will do whatever the hell they want because this is a free country. But along with that I think mental health gets lost. Anxiety is serious and does lead to some of this behavior we are seeing. The feeling of having no control and trying to exert whatever control we can over a situation. I learned in February 2017 that no matter what we do, we do not have ultimate control. But for others, this may be the first time they really feel a sense of that loss of control. Some have the capability to take this in stride, go with the flow but others may not. So do what you can to help. To not make things worse. To be there for those who may not be doing so well.

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Isolation? Fear? Been There, Done That

The country is in a state of panic. Mass hysteria. And I feel nothing. Do I worry about loved ones? Sure. But am I at all worried about myself? Not the least bit. I’ve lived through this. The fear, the need for quarantine, the worry I could pass something, anything along to my immunocompromised child. The worst for me has happened. This doesn’t phase me one bit. Other than the fact I’m wondering if there will be anything left at Trader Joe’s tomorrow when we do our weekly shopping.

This is serious. Of course it is. But yet people seemed to have lost their perspective. They seem to be more upset about what they are missing, or what their child is missing, rather than why they are missing these things. I completely understand the disappointment. I understand children, high school seniors, college athletes, being devastated about missing experiences and events. What I don’t understand is the complaining about it from the adults. Pain and disappointment are a part of life. This is temporary. Instead of complaining about how awful it is (not that people are dying mind you, but that your plans were cancelled), be grateful that this too shall pass. Be disappointed. Be sad. But stop fucking complaining about it all over the place. There are much worse things, like people actually dying from COVID-19.

I have pretty much given up Facebook (on the personal side, I of course still keep Ariella’s page going). Yesterday I made the mistake of going on. I went on to check if the schools had done anything because it is often on Facebook before emails are sent to staff. And what I found fascinating was not the number of complaint posts (and there were many) but who seems to be panicking and complaining. The cancer families I follow, the ones who should be panicking the most, who should be upset about more quarantines and isolation, are the ones who seem to be taking it in stride. Because this is their lives. They live this daily, virus or not. What I saw from them is the same thing I am feeling. Anger. Anger that this has been declared a crisis leading to immediate funds for vaccine and treatment development. Not denying that this is a crisis. But so is childhood cancer. And yet it is not taken seriously. There is no outrage. There are very limited funds to develop treatments. If the response to childhood cancer was similar to the response to the coronavirus, maybe just maybe there would be better treatments rather than decades old toxic chemo. What’s the difference? The difference is that coronavirus reaches everyone. Childhood cancer affects children and is “rare”. Yet more kids have died from cancer. So I’m not worried or panicked but I am furious. I am furious that childhood cancer does not get the attention it deserves because it doesn’t affect as many people.

I am also outraged over the behavior of many. Cleaning out stores. Stealing equipment that health care providers and the immunocompromised people actually need on a daily basis, not just in light of the virus. Hoarding supplies. There are still a lot of unknowns but it seems to me that most of us will be okay after a little inconvenience. And that inconvenience is necessary to protect those that may not be okay if they contract the virus. Acting selfishly, worrying only about yourself, is disgusting in these times. I read somewhere that people were having trouble finding baby formula. That is scary. If people would be reasonable. Buy items in a reasonable manner rather than clear the shelves. Then everyone would be able to get what they need.

I say I’m not worried. I’m not. But I understand it. If Ariella was here, I would be scared for her health. So I understand worrying about loved ones. But I just don’t get this mass hysteria. That scares me much more than the virus.