Brave and Important

I mentioned in the last entry that one of the things I've been doing to help me through my own grief is reading books and blogs of others who are also struggling with the difficult work of grief.

Here's a link to a blog that I started reading about the time my nephew was born last spring; in fact, I got the idea for making the video of photos from my sister's pregnancy and from the birth of my nephew from this site.  The story of the family that's detailed in the blog is sad but so touching and inspiring:

                                 Chasing Rainbows

I started reading the "Darcy Claire" part first - but it will make more sense if you click on each of the children's names across the top of the home page in order from left to right (that's their birth order), Gavin then Brian then Darcy Claire. When you get to the Darcy Claire part, have some tissues ready and be sure to watch the video (the link is at the bottom of the entry when you click on her name).

When you've read that, find the Blog Archive list on the right-hand side and click on "2013" and then "April" - that's what was happening in real-time just after I started following the blog, and it's very dramatic.  Start reading at the entry from April 2013 entitled "A Piece of Pop" and follow it from there - you won't believe what happens as the story continues to unfold.  

Be sure to read the entry called "Without Ever Uttering A Word;" it's touching beyond description.  It makes me think of the many kids I've gotten to know through my job as an occupational therapist who aren't able to communicate verbally and who've made such an impression on me through the years.  And be sure to read the one entitled "The End;" it's potentially the most powerful blog entry I've ever read.

Some of the things that have struck me in particular as I've read the entries (and from watching the Darcy video) are how touching it is how Kate (the mom) never seems to mind having her picture taken, even in the midst of tragedy, how she repeatedly says she feels "privileged" even in the midst of what must have felt like excruciatingly hard waiting, and how she seems to need to do something to try to help herself through her grief, even as the tragedy unfolds. Some of the stuff she writes about how hard it is to function at all in a state of grief reminds me of how I felt like I was that first year after my dad went on ahead, struggling just to get supper on the table or to pay a bill or help my kids with homework.  I admire Kate's writing because, while she's hopeful and that fact shines through almost everything she writes, she doesn't sugarcoat some of the ugly of grief, and I think that's brave and important.

Memories and Exit Ramps

Traveling along the highway of life with a luggage rack loaded with grief, it often seems there are endless reasons and opportunities for taking an exit ramp, as situations and conversations bring forth memories from previous experiences related to pain and loss.  I try to keep my eyes focused only on the space illuminated by the headlights directly in front of me, but sometimes things on the side of the road or off in the distance catch my eye, and looking at and even following those sightings cannot be avoided. There are lots of things along the way that I didn't think I was going to have to face - some of which I hadn't even be aware before I'd traveled this very road - and, once I was and once I did, that we didn't think I was nearly strong enough to traverse. The triggers that force me to exit for pit stops can come from varying sources - reading about or hearing about someone else with a similar story, being asked for advice related to my own struggle, or even just watching others about whom I care go through a trial like my family has since the time when my dad got sick.

Interestingly, I think, at some of those exits are emotions that are strangely unlike those I felt while I was beginning my own journey down this rough part of the road, in this construction zone of sorts.  I remember the feelings of powerlessness, sadness, confusion, and anger from during that time, but, looking at it at this point through my "things may appear smaller than actual size" rearview mirror, especially if I am able to offer anything at all to someone else from this vantage point, makes me feel strong and useful, ... a Silver Lining I suppose, one that I hope translates into a benefit for someone other than just myself. 

Over the past couple of weeks, I have been slowed in the right-hand lane as I've watched my friend and her family bring her father to hospice care on Friday two weeks ago and then say goodbye to him on the following Wednesday, the exact time frame that my family had with my dad.  I remember how in my family's situation there was so much to do, an overwhelming amount of things in fact, and then there was nothing.  I know all too well the pain and the helplessness and the feelings of such utter loss and despair that they were feeling as they prepared for the funeral, and I remember how I thought things couldn't get any harder but then how in many ways it seemed like they did after I went home after the memorial service and found my job and other responsibilities waiting for me.  After my dad's illness and his death, it felt like the emptiness, the loneliness, and all the other emotions were something with which I didn't think I could cope or even survive, but somehow I found a way, as I know my friend and others in her family will too.

In addition to having the perspective from inside the rawness of the grief, I now have somewhat of an idea of what it felt like for those around me in those early days of peregrination; it feels like running in place or maybe like being on a scavenger hunt of sorts.  There is so little that can be done to ease the pain of those who have been forced to enter onto this highway; the best I can try to do is just to ease off the gas pedal in my own vehicle to let them merge into my lane, to give them a nod of acknowledgement, to let them know that they are not alone.

"There is a sacredness in tears" ~ Washington Irving

Struggling

Since my dad went on ahead almost two years ago and especially over the past year, I have been struggling with the fact that the way I see him in my mind is as he was when he was sick, but today when I happened upon a picture of myself helping him walk using his walker I was struck by the fact that he looked even more frail than I remembered.  So now I’m troubled by the fact that apparently I don’t clearly see him as he was well or as he was sick, although maybe the latter is for the better.  

It was excruciating to watch Dad struggle and to witness the physical and psychological effects of his illness as it progressed, especially because I felt that we had all but been promised that there would be improvement after he had gotten the "Magic Bullet drug," Avastin. My heart broke for Dad as I watched him struggle to grasp the severity of his illness, time and time again.  As long as I live, I will never forget the look in his eyes when he was struggling to get around on his walker one day not long after he got out of rehab and he stopped for a minute, obviously deep in thought.  I was holding onto the waistband at the back of his pants, and he looked back at me with tears suddenly in his eyes and said, "Am I handicapped?"  

"No, Dad!" I responded. "You've been through a lot, and you're having to work on some things, but you're going to get better."  I was so sure, and, from my perspective, so was everyone else around us, maybe not that he would be cured but definitely that his physical skills would improve with effort and with time.

But that didn't happen. He didn't get better; in fact, he got worse, and little by little his independence and then his life slipped away.  Or maybe I should say they were stolen, or ripped away from us, because saying they slipped away implies that we weren't holding on and fighting tooth and nail every step of the way, which we were, Dad included.

I don't think he realized that the end was very near for him those last couple of weeks; likely, the invaders in his brain - the cancer, the trauma from the seizure and the surgery, the chemicals in his body that collected as his organs were shutting down and could no longer filter out the toxins, and the array of medicines he was taking - clouded his knowledge of his rapidly worsening condition. I hope so - Dad didn’t deserve to be given a death sentence.  It was heartbreaking enough that the rest of us had to know what was coming down the pipe all too soon.  

Connections

As a child, I loved nature and the outdoors. When I needed some alone time, I would often grab a plastic milk crate and, with that in hand, climb one of the pecan trees in our backyard.  High up in the tree, I would place the crate upside down in the branches and sit on it so I could relax as I felt the breeze blowing through the limbs and watch what was going on below.

One thing I've found since my dad went on ahead is a renewed feeling of that love for the open air and the peace that it gives me; it makes me feel some of the connection to my dad that I, like many others who have lost loved ones, am seeking - so much so that we often end up noticing, watching for, and even collecting things that remind us of our loved one.  Just like I did up in those tree branches many years ago, these days I find peace in the sight of a rainbow or a particularly magnificent sunset or a bird that seems to be looking right at me for an atypical amount of time.

A few months after my dad died, I mentioned in conversation with a friend that I derived a little bit of comfort in having some of my dad's things with me - an old shirt of his, a pair of his socks, a book of his with the corners of some pages folded over where he had marked his place.  My friend, who had been through the loss of a parent before me, told me that she understood, and she predicted that at some point I wouldn't feel as strong of a need to hold onto my dad's things because I would feel connected to him through my memories instead.  She may be right, but I'm not there yet.

For as long as I can remember, my dad had a favorite pillow.  He was always a little particular about things that affected the quality of his sleep; I guess that came from getting up so early to run for so many years.  For years while I was growing up, he had an orthopedic-type of pillow that he slept on every night; he even took it on road trips so he would have that one instead of having to sleep on a hotel pillow.  There were several instances when he left his pillow behind in a hotel room, and, when he realized his mistake, he called the front desk at the hotel and with his usual friendliness persuaded an employee to mail it back to him at home.

When I went to the hospital to be with my dad when he first got sick, I brought a pillow from my house.  The pillow case was one that my daughters had tie-dyed months before; I thought it would be good to have an extra one at the hospital for Dad or whomever was staying there with him to use, and I knew the original design of that pillow case would differentiate our pillow from one that was hospital property.  That pillow ended up following us along during the whole time Dad was sick, going with us from the hospital, to rehab, to the hotel where we stayed when we took Dad to the Brain Tumor Clinic at Duke, to my parents' house, to the hospital again, and finally back to my parents' house.  When we brought Dad home from the hospital the last time, we bought about a dozen new pillows to use to position him to try to keep him comfortable in the hospital bed; we encased all of them in blue pillow cases which we'd also purchased just for that purpose.  The pillow in the tie-dyed case wasn't needed anymore, and so I took it to sleep on, first at my parents' house and later at my own house.  I sleep on that pillow every night now; it, like the outdoors and like some of Dad's things from when he was healthy, bring me some comfort in an unexplainable way, especially at night when I seem to need it the most. 

The pillow that followed us

I imagine that it is a universal struggle for those of us left behind to decide what to do with the belongings of the person who has gone on ahead.  Dad would tell us to get rid of it all; he'd think we were being silly and sentimental, and he would point out that it's just stuff.  And it is, but his possessions marked his place in the world, and, in a way, I feel like they still do.  

Everything that changes in my parents' house - even in my house and even in the world around us - is something that takes me further away from him.  The first few times I was at my parents' house [I know I should just call it my mom's house, but sometimes I revert back to referring to it as theirs] after Dad died, I found myself looking around for dust - not to check my mother's housekeeping skills but because I had read somewhere a long time ago that household dust is made up of mostly skin cells, and so I reasoned that some of Dad physically was still there.  I felt - and I still do to some extent - desperate to hold onto anything that has the possibility of making me feel connected to him.  

Along the way, we've cleaned out and gotten rid of some of Dad's stuff; we donated some of his suits and most of the many pairs of running shoes that were crowding his closet.  It felt a little like ripping off a band-aid, except for the fact that it still hurts afterwards too.  Again, I am sure he would have wanted us to give those things to someone who will use them, but letting go of any of it is still a really hard thing to do.  I just don't want to lose any more of him.  

As a Result

As a result of what my family has been through since my dad was diagnosed with cancer on October 23, I’ve learned that in the face of tragedy people will surprise you.

I’ve been surprised by some of the things not done or not said by certain people while my dad was sick and while my family has been grieving, but I’ve also been surprised by things that were done and said by others.  It’s been the latter that has kept the former from causing even more pain and grief.

As a result of some of these relationships, many of which have changed as much as I have over the past months, I struggle with the question of whether the actions or lack thereof are due to ignorance (not knowing what to say or do), insensitivity (not realizing how badly their support was needed), or indifference (not giving a Hoot, or at least being more interested in other things like having fun than in supporting me or my family), and I also struggle with the question of whether or not it even matters what the cause of lack of support from these people is.

Sometimes a bridge has been burned so badly that it is beyond repair, and what's really surprising about that is that in some cases I don't even have it in me anymore to care that I can't cross the River.

After a few months, it seemed like almost everyone I know assumed my time for grieving had expired and that I was back to living a normal life.  They didn’t see my tears as I lay my head on my pillow at night or hear my one-sided conversations with Dad as I drove to and from work each day.  How could I go back to “normal”?  I don’t even know what that is anymore.

As a result of what happened to Dad, I’ve seen up close that bad things can happen to anyone at anytime.  As a result of this blanket of grief, I have hurt physically and emotionally worse than if someone had stabbed or burned me.  I want something that I cannot get back, ever. 

I’ve learned to speak the language of Tears.  I’ve learned that Shock is a shelter but that it’s not one I want to stand under for too long; it keeps me from feeling my dad’s spirit and makes me do crazy things that don’t help me or anyone else. 

In much the same way it is a surprise to find your car with a flat tire, it has surprised me that some people with whom I’ve discussed so many things in the past have yet to say much or even anything at all to me about my dad’s death or how I have changed because of it. 

As a result of what I've observed, I've learned that no matter how badly your heart is broken, the world doesn't stop for grief.

I've learned that our background and circumstances may have influenced who we are, but we are responsible for who we become.

I’ve realized that I need to figure out how to watch the film from a few rows back so that I can see the whole screen before me.

I’ve learned that grief is a journey, not a destination, and that the only way to get through it is to focus on what’s in the headlights on the road directly ahead.