Kindness

Running through my neighborhood I run past bikes strewn across lawns, kids running through sprinklers, scooters left haphazardly on the sidewalks, pictures drawn from chalk. A family packing up the car for vacation, two parents and two children. All evidence of the happy lives going on behind the front doors. But is it really?

You never know what’s going on behind those closed doors. Who is using those bikes? Should there be one more? Is the picture drawn by a child who is sick and cannot join in the more physical activities? One parent is supervising. Is the other parent inside, or is it something more sinister? What we see is just a tiny glimpse of someone’s life and we shouldn’t even begin to guess at the reality. What do people think when they see me? I probably look fine to others when I am out running. Maybe they think “good for her, she’s taking care of herself by running. She cares about her health.” Or when we are out walking our dog, talking with each other. Do they think “what a nice, happy couple walking their dog and enjoying their time together?” We go on with our daily routines which makes it appear that we are typical people just going about our lives. Rarely can others see what’s below the surface unless we show them. At our house there are no toys or bikes outside but a stranger happening past wouldn’t think anything of it. They might see our dog and cat looking out the door and think that a home with pets is a happy home. There is no evidence that I am broken. No evidence that behind the walls of our well taken care of home is unfettered grief and heartbreak. Even in public, though I feel like a shell of my former self, others may look at me and think I look unhappy but they certainly would not see the extent of my anguish (unless I am crying, which does happen quite a bit).

Even when Ariella was in treatment a bystander observing our family wouldn’t think anything was wrong (unless Ariella was showing off her bald head). We had fun, Ariella played outside, we looked just like any other happy family. We wore good masks. The worry and fear wasn’t evident. We looked carefree, like we had it all, when in reality we were facing our worst nightmare.

The point of this is that you never know what someone is dealing with. My temper is short these days. I rarely smile, and have no desire to make small talk. Strangers may take that as rudeness. But I can’t help it. But when someone shows kindness, by a compliment, or just with pleasant greeting, etc., it can offer a little brightness to someone who just may need it.

I have experienced a lot of kindness from strangers recently, even when I feel like I don’t deserve it. Here is an example. Well this man is not a complete stranger. He lives in our neighborhood and (I’m saying this in a joking way) accidentally traumatized Ariella one Halloween. I think it was her fourth Halloween so she would have just turned three a few weeks prior. She was a pirate. When we got to his house for trick or treating he opened the door but remained hidden by the wall. After a few seconds he jumped out wearing a gorilla mask and loudly roared. Well that scared the shit out of Ariella. She jumped, screamed, cried, and ran away, knocking off her bandana. For the longest time after that she wouldn’t walk past the house and would frequently talk about the “Gorilla House”. She even remembered that her bandana came off. She eventually outgrew her fear of the house and even trick or treated there, but she never forgot that one night.

I’m telling this story because we never knew this man personally. Trick or treating was our only encounter with him during all the 12 years we’ve lived here. And then Ariella died and he came to the Shiva house (I don’t know if he was at the funeral). I’m not sure how he knew our situation but I think he knows David’s mom (everyone knows David’s mom so it’s a good bet that’s the connection, and I’m pretty sure that’s what David told me). It took a minute before I realized who he was but then I joked with him that he was the one that traumatized Ariella years before. I hadn’t seen him since the Shiva but the other day when I was walking the dog he was sitting outside on his deck and saw me walking by. He made it a point to check in with me and sincerely said I could let him know if there was anything he could do. I didn’t even see him at first, he called my name to get my attention. He could have ignored me. Who wants to talk to a grieving mother you barely know? I truly was touched.

The number of people that followed and continue to follow Ariella’s story astounds me. Many, many strangers invested their thoughts and prayers and energy into Ariella. Following a child with cancer is no easy feat. While at times it can be quite uplifting it is often emotionally draining. Strangers get to know those kids, care about those kids, and too often the children do not survive. And yet these people we have never met followed her to her last day and continue to follow her legacy through Ari’s Bears. Strangers sent Ariella cards and gifts when she was in the hospital. They have sent us bears and donated to Ari’s Bears. They comment here, let me know I am not alone. Many who live local to me, whom I have never met in person, have offered real, tangible help (for example grocery shopping for us). In a world where it’s so easy to focus on the bad, we need to remember there are truly, kind people.

Acquaintances and strangers that go the extra mile when clearly they do not have to helps get me through. They remind me there is good in the world, that people are generally caring, that there is some lightness in the dark. We would expect this from our family and close friends and we have mostly gotten it (though for the record, a comment on a facebook post here and there does not equal support) but ever since Ariella was diagnosed I was surprised and pleased at support we received from people we had never met. Many of them have become our family. Especially the cancer families. The pediatric cancer world is supportive by nature. Though the families are each fighting their own horrific battles they still take their time and energy to support other families. And then when the unfathomable happens the bereaved parents community reaches out. Again, these parents are in a never ending state of grief and yet they want to support others who are going through the same thing. The pediatric cancer and bereaved parents worlds are the most supportive, caring clubs that we never wanted to join.

So again, you never know what someone else is dealing with. You don’t know what’s behind that smile, behind those doors, beyond the surface. Everyone is going through something. No one’s life is perfect and a little bit of kindness goes a hell of a long way. An act of kindness may make a huge impact on someone, even if you don’t see it right away. Even if someone is not kind to you, be the person who will show them some kindness. They just might be the ones who need it the most.

Only the Good Die Young

Last night I went to a concert. A sweet friend invited me to go see Billy Joel with her. I actually accepted without hesitation. I love Billy Joel, I had seen him twice before, and it’s definitely more mellow than some other concert experiences. I figured maybe if I continue to force myself to get out then one day I will stop just going through the motions and will actually find myself enjoying these experiences.

Surprisingly to me I did not waffle with this decision in the days leading to the concert. I thought I would experience the panic and terror that I typically experience when I need to go anywhere. And this wasn’t just anywhere. This was a packed stadium filled with noise and activity and people, many of whom I would know, with no escape.

I’m not sure I can describe how I felt at the concert. It was a good show but I certainly didn’t get into it like I would have in my previous life. I wasn’t distracted from life. Not at all. In fact it brought back memories of the couple of concerts to which I took Ariella and made me think about all the concerts she will never get to attend. I was trying to imagine whether or not she would have liked it, would have enjoyed the music. There were a good number of children there. But it was mostly an adult crowd for which I was grateful. But this is the thing about grief. It really does invade every single aspect of your life. Whereas before I would go to a 3 hour concert and not have my main focus be on my child, now she’s all I think about wherever I go, whatever I’m doing. There is no distraction.

That all said, I am glad I went. Even though I spent much of the show thinking about Ariella, it still felt like a bit of an escape. I can’t adequately describe the experience. I’m actually not exactly sure how I feel about it to be honest. I think I was able to do it because it is unlikely that a Billy Joel concert would ever have been an experience that I shared with Ariella. And music. Music has a way of helping even though it can tug at the emotions. I’m not sure I can say I had fun. Maybe it was fun. I wasn’t wishing I was at home instead so that’s something. And it was entertaining. I’ll take that.

Today, however, I’m exhausted. I think I’ve been trying to do too much in an effort to get out of my own head. Going out, doing anything is exhausting. I’m fortunate that I don’t have to pretend to be okay with my friends, but the interactions are still tiring. I have a hard time participating in conversations in a meaningful way. I’m sad and I don’t want to be a downer (even know I know they don’t care). Interacting with strangers or acquaintances is even more tiring. Because I generally don’t try to fake it I know I must come across as unfriendly and miserable. It’s easier just to stay at home and not have to interact with anyone. I’m trying to find that balance because staying at home staring at the TV doesn’t do me any good either. But I think I need a few days of that. There is no escaping your grief. Wherever you go it follows you like a shadow, threatening to tear you down, bring you to your knees without warning. It’s okay if that happens at home. It’s terrifying when it happens in public.

I don’t think I have become any more adept at navigating grief but I am learning that while nothing really serves as a distraction, there have been activities that have been therapeutic. Writing of course is probably number one. Running/exercising is probably the activity that comes closest to actually being able to distract me from my emotional pain. The pain doesn’t stay away of course but the endorphins that are released with physical activity must help. Music as I have mentioned certainly has a therapeutic role and the other day I did some pottery painting which was also quite therapeutic. Brief moments of time where I can focus on something not instead of the pain but in addition to the pain.

Despite finding those brief moments where I feel almost okay, I still just don’t see the purpose or meaning of living anymore. Ariella was my purpose, my reason for being. Taking care of her was my most important job. There is nothing else that can give my life that same meaning. I don’t have someone else that needs me like she did, that needs caring for. That I can love and raise. I force myself to keep going because that’s what she did in the most impossible of circumstances. But I don’t want to. Parents who have been in this position assure the newly bereaved that we will learn to live again. But that only makes me more sad.

Exercise and Routine

It never ceases to amaze me how long it takes to get into shape, and how quickly we fall out of shape. I used to exercise daily either by running or going to the gym. I used to love running and was actually pretty fast. I hadn’t exercised since Ariella was in the PICU. Even though I was home some nights and still working part time I was too exhausted to drag myself out of bed to get to the gym before work. You see, nights in the hospital were not conducive to sleep. Nights were fraught with beeps and alarms, vital signs and transfusions. Some nights the lights had to be kept on and doctors were in and out throughout. So even though I did actually get fairly good sleep at home it was not enough to make up for the lack of sleep when in the hospital. After Ariella died I wasn’t motivated at all to do anything, much less exercise. I honestly didn’t care about taking care of myself. What was the point? Nothing mattered.

I finally decided that it was time to do something. Even though I don’t much care right now about my health I realized down the road I just might and would regret not taking care of myself earlier on. So a couple weeks ago I forced myself to go to the gym. Not necessarily on a regular basis but to try to get back into a routine. The gym is actually one of my safe places. I don’t know many people there and those I do know, know my situation and will ask how I’m doing but stop there unless I pursue it further. I’ve been doing some classes at the gym and it’s actually quite therapeutic. It’s an hour or so of distraction from reality. And it also helps to kill time. By the time I roll out of bed and get myself together, take our dog for a long walk and then go to the gym, I’ve managed to get through half a day. I’ve been running twice. I am nowhere near where I was when I was running on a regular basis. I think part of that is because I hadn’t exercised in a while, but I’ve also noticed that since Ariella died my heart rate and respiratory rate are higher. And sometimes I find it hard to breathe. Stress and grief impact your physical condition and that combined with an increased heart rate from exercise makes it quite difficult. But again it’s therapeutic. So I will keep trying.

Though it helps to have the structure and routine and to get out of the house for a bit so I’m not lying on the couch all day staring at the walls, it also saps my energy and at times makes me panicky. There comes a point anytime I’m out that all of a sudden, I’ve had enough. I need to be home. I’m careful about what I agree to do because I need to make sure I have an escape if I need one. I’m worried about going back to work because of this. On the one hand it will be good to be able to fill my days but on the other hand I’m terrified that I will breakdown and not be effective at my job. I have a very hard time concentrating on anything and I can only hope that work helps channel my attention into the job so I’m not so distracted by life.