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.

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.

Seven Months

It’s been seven months since my heart was ripped out of my chest and shattered into a million pieces. Seven months since everything changed but also stayed the same. Because besides living without my heart, my center, everything else is the same. I get up everyday, exercise, go to work. The sun still shines, the world still turns. Day becomes night becomes day again. People continue to live their lives. We continue to live our lives, even if we are just going through the motions. Everything is vastly different but impossibly the same.

Seven months and already the calls and messages are dropping off. I get it. I do. People have their own lives to live. They have other things to think about. They aren’t living with the devastation every day. We are not the first thing they think about. But you would think that family would be there from the beginning and that they wouldn’t disappear. And most of my family has been great. But it’s friends that have really stepped up. In some cases people I barely knew before who have gone out of their way to be present. Friends going through their own shit still make it a point to let us know they are present. And I am eternally grateful for those still here. I still need you. I will need you for a long time. Maybe forever. I may not say it or ask for it. It is very hard for me to be the one reaching out. I try to acknowledge every text and message. But sometimes it’s just too much. And sometimes I forget. But every text and message and phone call is appreciated. It does help to know I’m supported. That I’m being thought of.

I forget a lot of things these days. If I don’t respond to a message immediately I likely will forget to respond. Yesterday I made coffee and forgot to drink it. I couldn’t remember if I fed the dog. I forgot to leave something at the door for someone (though he forgot to pick it up so at least that worked out). If I don’t write it down it won’t get done. But even then I often forget. I need to set alerts in my calendar to really remember things. This is grief brain. It’s a very real thing. I am still in a fog much of the time. In my own world, where everything is hazy. I can’t see clearly. It’s a chore to get from point A to point B. Doing anything takes significant effort even if it doesn’t look that way. Because my mind is in the past. I am living in the past. Happier times. Wondering “what if”. Just, everything. This isn’t living. It’s merely existing.

I’ve seen some memes or posts saying things along the lines of 2019 sucked, here’s to a better year next year. But next year can’t be better. No year can be better. Because every year from now until I die is a year without Ariella in it. Maybe the sentiment is the hope that nothing tragic will happen but nothing worse can happen. I am living through the worst thing that could possibly happen to me. So I’m just in for decades of bad years.

I panic at the thought of the next few weeks, few months, few years. My respiratory rate increases, my heart races, and I shake. There is a pounding in my head, a lump in my throat, and pain in my stomach. Grief is physical. It beats you up, shreds you, and kicks you while you are down. It manifests in so many ways but I find for me sadness, apathy, and anxiety to be most prevalent. The anxiety has ramped up lately, I’m guessing due to the time of year. I just don’t know how I’m going to get through this.

The Days Keep Dragging

Another calendar month has come and gone. People keep remarking how fast the summer is flying by. For me it’s dragging. Every day is a lifetime filled with nonstop thoughts of Ariella. The thoughts change but are always about Ariella. About what we are missing. About how much I miss her. About how much I want to hear her voice and tell her about my day. About her days in the hospital. About what we could have done differently. She is all around me. Everything is a reminder. And I mean everything. Nothing is safe. She is a constant in my life no matter what I am doing or where I go. Some thoughts are happy memories though they make me sad, and some are tragic. Doesn’t matter. I can’t escape them. 24/7 I am missing my daughter. I count down the minutes until I can go to sleep once again. I survived another day. But then I wake up. Another day to get through. I force myself out of bed. I run or go to the gym, the only thing that remotely helps me right now. And I try to fill the rest of my day until I can sleep again. The summer can’t end soon enough. I’m anxious about going back to work but at least my days will be filled. I’ll have a routine. I’ll have no choice but to get out of bed. I’ll have no choice but to keep myself busy at my job.

Work though is going to bring its own set of worries. I work with children. Everyday I’ll interact with children near Ariella’s age. I will watch them learn and progress and grow. Some of my students I’ve known for several years. They know I have a daughter. They ask about her. They didn’t know she was sick. How do I respond when they ask about her now? Some of them are the same age, in the same grade Ariella would be. How? How am I going to watch these kids learn and experience all the things Ariella will never get to experience? I love my job and I love my students but this is going to be a real test. And not just the interaction with the kids, but interaction with the staff as well. I work in multiple schools so I don’t get to know staff at any individual school very well. But they are aware of the situation. I am mostly in the same schools as last year so I am dreading the first week or so back, having those conversations with people I don’t know all that well. I just hope that it’s far enough out that when they see me it’s not immediately on their minds. I am relieved to be in the same schools because the thought of adjusting to new schools on top of everything else was increasing my anxiety about going back. At least I’ll be dealing with the familiar (other than one new school).

I’ve got a little over three weeks left to fill before I go back to work. I’ve had so many offers for lunch, dinner, etc. and I appreciate them, I really do. I can’t accept them all. While doing nothing isn’t good, doing too much isn’t good either. I pay for it later. Interacting with others is exhausting. Making small talk is exhausting. No matter who I’m with it always hits me what I’m missing, what our lives are missing and as soon as I leave, the world comes crashing down yet again. I’ve always been introverted and even more so now I prefer to be alone most of the time. It’s actually quite the conundrum. I want to be alone but I need to fill my days. I don’t want to just mindlessly stare at the TV all day but I don’t want to go out and do much of anything. Nothing is the right thing so I am trying to find that right balance of not shutting myself completely off but also not exerting myself too much.

I never understood depression before. Anxiety and I had/have a very close relationship, I know anxiety quite well, but was not so familiar with depression. I just didn’t understand how life could feel so bad that one would have no motivation to do anything or be able to take pleasure in various experiences and activities. It made no sense to me. No matter how bad things seemed there was always pleasure and happiness to be had along with the bad times. I get it now. The root of the depression may be different, mine being situational, but I fully understand lack of motivation and being unable to experience joy. It is a dreadful way to live, feeling like there is no reason to keep on going. What is the point of living without happiness, meaning, or purpose? Why suffer through that? If anyone has the answer to that I’d love to hear it.