The Face of Despair

This email was one of several that was truly cathartic for me. It felt like I put it all out there for everyone and anyone to see and I didn’t have a single care in the world about it. I was in the moment and wanted to share what that moment was like. We all have these moments but we’re private about them and I was too. I felt compelled, however, in this instance to dismantle the myths associated with bravery and courage and strength. This moment taught me beyond a shadow of a doubt that when I’m seemingly my most vulnerable, I’m in reality my truest self. Vulnerability is not weakness but dishonesty and insincerity is. Truth, although painful sometimes, is the only sustaining force that will enable one to endure the battle of Life. It is the weapon of choice for the courageous, the brave and those who dare to be real. I’m simply trying to be one of them.



February 11, 2008
Subject: the face of despair

I hesitated sending this photo taken of me this morning February 11, 2008 but I’ve decided to go ahead for several reason, not the least of which is the need to “keep it real”. So often we hear tales of another’s sorrow and despair but we never really see it. The phrase, “she puts on a brave face” has been ringing in my head all day today and I wonder what exactly that brave face looks like. Is it a face that only smiles and hides the sorrow I think people actually want to witness on some level? Is it a face that is rigid trying to mask despair? Is it a face that shows all emotions when they arise? I don’t know the answer to these questions. I only know that when I feel anything, I feel it deeply and completely. When I feel blue, sad, sorrow or even despair, I have learned that I need to sit with that particular emotion a while. It isn’t my preferred state of being or state of mind, so it is imperative to me to understand why it is presenting itself so that I can reclaim my more comfortable state of mind, which is joyful. I’ve come to realize that my emotions last week of irritation and agitation waned into a dark despair that I carried all weekend long. I can’t say that my sorrow is related to anything in particular, rather it is related to everything in general and that everything became overwhelming these last few days....

I am very happy to report, however, that since this morning, tiny miracles have happened throughout the day that have helped me purge this sadness.

For days my emotions have been just below the surface of my being and they would spill over occasionally and with little warning. I kept having this sense of dread and yet nothing specific would come to mind. It was this constant nagging presence that was picking at me. I felt as if the hope that people were continually giving me and what I was so desperately clinging to was turning to vapor before my very eyes. In its place was darkness and anxiety. I found myself worrying about Aria and I can’t even tell you what exactly I was worrying about; nothing specific and yet everything. I found myself thinking about her being so sick and so fragile and so weak and quickly I would here a voice “shhhhhhhing” me saying things like, “She’s going to be fine! There’s an 85-90% cure rate! Her doctors are so optimistic! She’s doing great!” Another voice would counter with, “Yeah, I know, but what if?.......” I knew this was the voice of anxiety. It always is. Anxiety is the master of creating situations that don’t yet exist and never do come to pass. Still, there it was, following me everywhere I went and with everything I did. I couldn’t escape its grasp and I became so sad, so, so sad. I mentioned to Doc what was going on and how I was feeling so conflicted about what I knew in terms of how I ought to feel so positive and yet I was feeling so negative. Doc, as only he can do, said something to me that nailed my reason for despair. He said to me very gently and tenderly, “Honey, there are no promises and no guarantees.” The air was sucked out of my lungs in an instant for that was exactly my dread. We have to believe and do believe that Aria will be fine. She will be cured and she will go on to live a wonderful and beautiful life but....
Just before I snapped this picture with the handy computer-cam we have, it hit me. For the last few days, this nagging dread, this looming despair has been invisible in a way. So I figured out how to see it.

“Ol’ Henry”, our farmhouse, has a quirky main entrance. When you come through the front door, you are immediately in the dining room! It is so weird and at the same time so grand! It is the meeting place and it is the place where we sort and organize for the day. It is the central station of the house. Over the weekend I noticed that I was resisting the front door. There was an energy there that I didn’t like. It was strange and cold and dark. There was an extraordinary feeling of oppression, not around the farm or the house as a whole, but only the front door. I realized this morning that the oppressive, dark, cold, energy I was so aware of at our front door was Death.

This is the unmentionable. It is the thing we don’t talk about, we don’t face, we don’t include in the pool of options. It is something we all know is the ultimate inevitable but it so rarely lingers on our front doorstep. Yet, that statement isn’t exactly true, is it? We can feel so peaceful about death knocking on the door of someone who has lived a full life and seems ready to go. It seems natural and it is. For many, the process toward death is one of a lingering presence that changes as the inevitable draws near. I don’t know what exactly that change is. I imagine it to be a gentle knocking and an acceptance of knowing what is knocking and then an eventual welcoming as the door is slowly opened and death enters.

It is in no way acceptable that death knocks on the door for children. I think we can all agree on that one! I know many find comfort in looking toward God, knowing he has His reasons for taking a child so soon. I don’t find any comfort there. I have my ideas of heaven and hell and death in general, but that is another email. For now, death is lingering on our doorstep. Our 4 year old daughter is at risk and I must surrender everything to a process I don’t fully understand and certainly have little control over. Rest assured that I don’t hear any knocking nor do I see any attempts to knock. Death is merely a presence..a dark cloud that I go through every time I open the front door. I deliberately take a deep breath now and I stand straight and confidently. My head is held high and I tell myself that we are, in this moment, all alive. I walk through death holding Aria in my arms knowing it is not her time.

Once I realized this, once I had a visual on the source of my despair, I saw my despair join death and I left them together.

“She puts on a brave face!” I am quite certain that I am as brave when I smile full of joy as when I cry with tears staining my cheeks in sorrow.
~j

Aria's habits

I know I’m repeating myself when mentioning the effects of steroids. It cannot, however, be emphasized enough just how profound the changes were and how deeply effected we all were by them.

Giving Aria steroid treatment is something we have to do to this day as part of her chemotherapy. We accept this as it fits in the entire package of treating her cancer. What is so hard to accept, however, even now, is that she has cancer. You may be reading that thinking, “Really, even after a year of dealing with it you’re still having a hard time accepting it?” I would answer an honest and hearty, “Yes.”

On one level I feel defensive and want to say, “Of course I accept that she has cancer. It is what it is and we’ll do whatever is necessary for her!” On another level however, it isn’t that I don’t accept the reality of it, I’m simply still shocked by it. I can’t believe it. Still! It makes me wonder about death, for example, and the initial shock that happens followed by years of what I think would be like shock waves. Moments of heart-wrenching grief and sorrow that sometimes appear out of nowhere making one fall to their knees in sorrow and longing for the deceased. I suppose any tragic event could elicit these shock wave type moments. The steroid treatment is shock wave that I face with Aria every month. It is one of a myriad of things about her entire cancer experience that is shocking and perhaps that’s why it takes so long to accept. Each little thing has to be faced, processed, grieved, accepted and eventually transcended. This is no over-night task. This is not something one accepts and then is able to ‘move on.” Maybe some people can do that, but I’m not one of them.

In many ways I’m still grieving and when I read this email about the incredible changes that happened to Aria in such a short time, it brought me instantly back to that month of wondering if she’d ever come back. The changes were so severe that I kept wondering if I ought to be preparing myself for her to remain this way. It was almost impossible to imagine her coming back and what that would look like. It is essential that I mention that the changes were entirely steroid driven and were in fact temporary. Aria is back better than before!
Subject: Aria’s habits
Date: February 11, 2008 2:59:49 PM PST

In the last week or 10 days, Aria has developed these odd little
‘self-comforting’ habits that are fascinating to observe. On the one
hand, I watch her like a scientist and I feel almost emotionless. I
observe and collect data. On the other hand, I am her mother, so it is all I can do not to be in tears consumed by an overwhelming sense of sorrow. I’ll have you know, I have no problem with tears or with sorrow, but I do have a problem with being consumed by both so that is part of my present battle. I am fighting against being consumed by my anxiety and sadness. Staying in a place of consumption does very little in the big picture of goodness.
Since Aria had her haircut, her ears have been exposed. She loves them! It is like she has discovered them for the first time and perhaps she has because up until this time, they have been hidden beneath long hair! Although, now that I think of it, she wore her hair up a lot and her ears were exposed then, so I think it is safe to conclude that this fascination has more to do with steroids, boredom and comfort than a new physical discovery. Regardless, she plays with them constantly! She folds them forward and back, tucking them in toward her ear canal. She’s also taken to picking at her lips, which has become a little nasty. Her lips are dry and pick-able, but this is something I am urging her to stop doing since infection and lip sores are common enough already. So, I gave her a “lipstick” that she can call her own. I’m hoping that she’ll take to rubbing on the lipstick constantly instead. We shall see.
She also likes to rub her pointer finger over the top of her eye. She gently takes her finger across her eyelid just below where the bone defining where her eye-socket is. Occasionally, she’ll bring her thumb into play as if she’s going to give her skin a little pinch. She is puffy now so I’m sure her eyelids feel swollen and weird, which is why she wants to play with them. I can’t help wondering if she has a strange new sensation when she blinks. It makes me think of how my face feels after going to the dentist and getting numbed up. I feel as if my face is swollen and I can’t help but touch my cheeks to see how disfigured I’ve become. I wonder if it’s a similar feeling for her.
The last thing she’s started doing is to gently pick at her cheeks near her mouth. This is actually quite adorable. She’s taken to eating toast with butter pretty much every single day a few times a day. Toast creates a cascade of crumbs that stick to her mouth and cheeks when she eats. She meticulously picks off the crumbs and continues this new sort of grooming long after the crumbs are gone.
Imagine for a moment putting those three behaviors together. There she sits cross-legged at the kitchen table. When she’s done eating, she often likes to remain in her chair with her head resting on an extended arm. She’ll sit there with only her thoughts. Sometimes her eyes are open and sometimes not. She likes to take her right hand to her right ear and flick the top of her ear over. Her fingers flick and then move to her lips where she gives a quick pick and poke and then upward to her eye socket where she gives her right eye a methodic rub and then her fingers trail down to her cheek where she picks invisible crumbs. Her fingers then race back to the top of her ear and the process is repeated. She can do this for a long time! She’s completely calm and nothing about her movements are stressed or hurried. I sense that she is giving herself some kind of pleasure..a mindless way to pass the time that keeps her connected to the body that is changing so rapidly and feels so sick. I wonder if she feels separated from herself somehow. I wonder if this constant touch keeps her in contact with herself.
These changes have been subtle and slow as I’ve told several of you recently on the telephone. I received quite a bit of warning about possible changes so I felt quite prepared in some ways. However, I’ve come to recognize that these changes are very similar to the process of change I experienced when I was pregnant. I read everything I could possibly get my hands on when I was pregnant with Reo. I noticed that after I had memorized the present month I was in I would skip ahead to the next month or 2 just to see what lay ahead. I remember the anticipation of the changes. I remember wanting to feel pregnant and look pregnant and that feeling and look seemed to take forever! Until suddenly one day, voila! no denying it, I was a butterball! It seemed in some ways to happen over night and yet I know that the changes were subtly happening over days and weeks and months. This is exactly what’s been happening to Aria. As I look at her mood now, which is withdrawn and sad, I can recall the slow process of getting to this point. I was told that she would be hungry and her mood would swing, for example. Indeed over the last 2 weeks she has steadily increased her diet. I hasn’t been like she wants to sit and eat an entire turkey. However, she wants noodles for breakfast and within 30 minutes is hungry for yogurt and she can eat an entire bowl and 30 minutes later she wants toast. It is a constant need to eat something throughout the day as opposed to eating enormous amounts of food at once. Her mood is interesting in that she is 4 years old and already susceptible to an array of emotion throughout the day. What has changed are the triggers that set off her emotions. Toast falling on the floor is life shattering. Having 4 pieces of toast on the plate instead of 2 even though she’ll eat 4 pieces is just too much for her eyes to digest. Rianna coming too close to her makes her scream in a panic. She hates taking a bath, something she loved to do before she got sick. These subtle little changes have created in her a magnificently different Aria. It is a process and we are weathering it as best we can. It helps to document to it and I thank you for providing the venue in which to do just that!
~j


Aria mindlessly picking her lips. You can see how bloated she is and how distended her belly became.


Aria is bending her ear into her ear canal. You can sort of see that her lips are completely dry and covered in sores.


There's another picture of Aria looking at the camera when this series was taken. Most of the time, however, her eyes were closed and this is was her pose.


Even when trying to be playful, she would rub her eyes, face and toy with her ears.