Comfort

Comfort, comfort, comfort, the word keeps chasing anxiety around in my head. I heard it so many times after my daughter passed away--I hope XYZ brings you comfort. I never completely understood what it meant. How can you truly find comfort in any situation where people hope you will? Comfort apparently means "a state of physical ease and freedom from pain or constraint," or "
the easing or alleviation of a person's feelings of grief or distress." Where would that come from? Another person? Anti-anxiety medication? I have no idea.

The closest I ever came to a feeling of comfort in the days after losing my daughter is a blue blanket. It's a fuzzy, light blue blanket that I'd bought to put on our guest bed. It somehow ended up in the family room. One day when I was sitting there in my usual miserable, half-aware state (this would be within the first 3 days or so after her death), a friend of mine put the blanket over me, saying I looked like I needed it. And somehow, that was comfort. That she knew to put it on me, the way it felt at the time. I still look at that blanket and think "comfort." 

Now, almost 6 years later, anxiety has percolated to the surface. I've been through a lot the past few years, and hadn't realized how much until I went back to a therapist today. I went back because of various issues I've faced with my husband, and those have REALLY brought up anxiety. In catching her up on my life, I described the past few years--my own breast cancer treatment, my mother's current battle against it (her third, and toughest), my parents' dysfunctional interactions, the stress of working full-time and having two young children and trying to do it all JUST RIGHT. 

I suppose it makes sense that putting pressure on yourself will eventually make you crack. But, and I'm sure I've written this before, it doesn't happen. I keep waiting to completely break down to a point where someone shows up to take care of me and I'm finally relieved of all responsibility. It just DOESN'T HAPPEN. Maybe that's not how I'm wired. Maybe I refuse to relinquish responsibility of my children. I don't know. I sort of wish for it, but maybe not.

So comfort. That would be the next best thing to a total breakdown. But where do I find it? Where is it this time? 

I haven't written in my diary for many years. I'm thinking I need to start again. Maybe some measure of comfort can be found in its pages. I feel I wrote my way back to sanity before, maybe I can do it again. I feel like I don't know myself, don't know what I feel, need, should ask for, or do. 

Comfort. Desperately seeking comfort.

Dragging

Yes, it's May again. And I'm still here, though obviously not writing all that often. I've all but stopped writing in my personal hardcopy diary. Stopped a while ago, not sure why. But am feeling the need to write it in again. I know it's there for me if I ever want it.

This past weekend was Mother's Day. My husband worked his usual Saturday and Sunday overnight shifts, which meant I spent Sunday as I always do, grocery shopping, cooking, doing laundry, and keeping the kids from going upstairs and waking up their dad. The grocery store was full of dads picking up cakes, flowers, and balloons for their wives. I was a little annoyed, though I knew there wasn't anything we could do about my husband's schedule and Mother's Day is a holiday created by Hallmark, right? Just to sell cards?

Tomorrow is my birthday. I took the day off from work, though in past years, I haven't. Who wants to work on their birthday, right? The plan is for a bike ride (on my new bike) with my husband, then he'll make me breakfast (Eggs Benedict, particularly time-consuming to make), and take me to lunch. Nothing big. I'm just glad to not be working.

Ever since Sunday I've felt like I'm dragging myself around, body, mind, and heart. Next Wednesday will be 5 years since my girl passed away. Once horrible May is finally over, I get to look forward to my first follow-up mammogram since my surgery and radiation. I feel SO heavy I can't even describe it.

May started out just fine. We had my daughter's birthday party on May 3. My in-laws were here for it, and the kids did really well with them. May 4 I did my first (and possibly only) duathlon. It was a lot of fun. I signed up for it because I wanted something to look forward to in May. Now I'm wishing it was at the end of May, because I'm mostly dreading the next couple of months.

June marks not only the anniversary of my mammogram but also my biopsy, and then of course I had surgery last July. Like my daughter's death, I was maybe cushioned by shock, or inertia, through all of that last year. Now I'm having that sort of horrified anxiety, did all that really happen? And getting sick to my stomach thinking about it.

It's over, I'm safe. That's what the therapist used to tell me when I would go in for grief counseling. And I'm pretty good at telling myself that, talking myself through whatever. I just wish this heavy feeling would go away! I've joined some local running groups. Tonight is a workout at a high school track with one group. I've gone the last couple of weeks and enjoyed it. Wasn't planning to go tonight, but my neighbor/friend is expecting me to. I'm not sure whether running will help pull me out of this semi-stupor or if I'll have trouble picking my feet up fast enough to actually run. I signed up for an "adventure run" tomorrow night, which sounded fun at the time. Now I feel like I'm not going to be able to enjoy it or anything else this month. The members of one of the running groups will be at tomorrow's event, and they know it's my birthday. I'm hoping to focus on just that.

A friend of mine suggested (back when my daughter died) that maybe I should change my birthday. She said it again earlier this week when I told her I was feeling so heavy. Honestly, that never appealed to me. It seems like more work than it's worth, and there will always be someone who doesn't go along with it. Most likely, my parents, who still never mention the death anniversary of their granddaughter.


As people told me, it doesn't get easier, you just get better at living with it. But sometimes it is a little harder.

Resigned

I started this post months ago. It's the only one I saved but didn't immediately publish. I guess I wanted time to think about this one a bit more. The stages of grief. Something I've looked at over and over again. Having studied them in various psychology courses in college, they ran through my head from the beginning. But I knew I wasn't going to go through them in order, or that I'd ever reach acceptance. A friend and follower of this blog sent me an article a while ago on the subject. The stages were originally intended as a way for someone to look at their own death or illness, and was later generalized to apply to others. The basic stages are denial, anger, bargaining, depression and acceptance.

I wrote the paragraph below and sentence that follows several months ago.

Acceptance is what you do with a job offer, a compliment, or an apology. You accept an invitation or a gift, not death. I don't think anyone ever says "I accept" when being told someone close to them has died. Never. Instead, you battle with it, wrestle grief, cry, scream, sleep. And at some point, you give up. At least, I have. I was so angry, so sad, I wore myself out. And I've stayed worn out. I start to get angry, but lack the energy to sustain it. It might be that I finally realize there's nothing I can do, that I can't bring her back, that she's gone, that the accident really did happen and the daughter I thought would outlive me has now been gone for THREE years. It might be that I was so angry and so sad for so long that I don't have the energy to be that angry or sad anymore. Or maybe I'm part of life again, not part of death, and can't make myself part of it.

Whatever the reason, I have resigned.

Today, I sometimes feel myself tipping into grief, as though it's a cliff I can fall over. And I generally don't let myself. I went for a bike ride the other day, and in the first few minutes, heading out of the neighborhood, I passed a fire engine with its lights on, siren blaring. For months after losing my daughter, the sight of an emergency vehicle made me freeze up. I never saw the ambulance she rode in, but she loved fire engines, and knowing that her last ride was in an ambulance where she probably couldn't hear the siren still makes me sick to my stomach. Seeing that fire engine immediately made me tense up, and I immediately started pulling myself back from the ledge. I could consciously understand why it caused that reaction, and realizing that again made me absolutely freak out. Everything now is at a conscious level, where I feel as though I can control more of my reactions.

As I told a friend, it is in some ways harder once you get farther away from the incident that you will forever grieve. Initially, it's easy to predict what will upset you. Pretty much anything will. As the years go by, things you haven't been exposed to yet, or the most random things you'd never consider could upset you. I watched a movie sometime last year, Flight with Denzel Washington, that absolutely made me break down. I can't even remember now exactly why. Something about the scene with him in the hospital, the way the people spoke to him, reminded me of being in the hospital saying goodbye to my daughter. I couldn't watch the movie. And I know that type of situation could come up again at anytime.

I haven't accepted that she's gone, I've resigned myself to that reality. One thing I wish I could do is create a list of dos and don'ts for those helping others deal with grief. I have tried to describe some of those here over the years. A friend recently posted this article which articulates a lot of the things I feel, especially the very first one: http://sojo.net/blogs/2014/01/13/new-normal-ten-things-ive-learned-about-trauma

The one thing I'd add to the list in the article is don't expect those who've suffered trauma and loss to ever accept it. I feel as though my strength embodies my forever acting out against it. I've thought of myself as "relentlessly happy" throughout. I felt in the beginning if I could act "as if" long enough, I would actually be happy. And maybe it worked. I didn't accept, I became resigned to the fact of the accident and my daughter's death and started living around it. At least, that's how I see it now.

Happy 7 Birthday

She would have been 7 today. I've been thinking to myself over and over, "It's her birthday" because it seems less and less real every year. Just as at first the horror of her death was inescapable, now her absence is even more inescapable. The danger of moving away from grief is that you always move away from the one you grieve, as if it is grieve itself that keeps you near. I hate that though, she wouldn't want us to remember her death. But she was so young when she died, there isn't much of her life to remember.

I realized over the weekend that my son is now older than she was when she died. We have officially passed through what I think of as the dangerous time. And in doing so have left her behind in yet another way.

I've also left behind the idea that people will forever think of me as that poor woman who lost her daughter. It's a part of me, but not who I am. I am not my job, I am not that woman who had breast cancer, I am not that woman who lost her daughter.

I saw this picture on the Michael J. Fox website for his foundation. And that said what I've been trying to sort out for years--what happens to us isn't who we are, it's what we do in response. Yes, yes, and yes.

This year, I will again have dinner with my family, and our former nanny's family (which now includes a husband and baby). We'll send my girl 7 red balloons, and eat cupcakes in her honor. 

I've been remembering some things about her, little things we did together, little things she did. I remember taking her to the store one day, and the Colbie Caillat song "Bubbly" came on. She swayed back and forth gently, it was a perfect embodiment of the words of the song. I still look back and expect to see her in her carseat doing that whenever the song comes on. When I was pregnant with her little sister, I came down for breakfast one day. She and her dad had already eaten, but as soon as I started eating, she said "Bite?" And took a giant bite out of my bagel. While at a birthday party at a local bounce place for her best friend, she sat in the room while presents were opened. At some random point (well before the end) during the process, she said, "All done!" and jumped out and ran out of the room. A couple of months later, we had Christmas Eve dinner with friends (her best friend's family) and when my friend told everyone to sit down, my daughter did--right in my friend's lap. She wasn't all that snuggly, so it was a surprise to see her do that.

These are moments not captured in pictures or video. And they, like the pictures and video, are bits and pieces disembodied from a life. I hate that they will forever be out of context. Two of my friends have girls that are close to the ages of my two girls. It absolutely breaks my heart to see pictures of them. I actually avoid looking at times, but in some way, it's nice to see how my girls would have been. I didn't have a sister and was excited to see how my girls would have each other.

My second born has risen to the task of being the big sister. She and her brother are so close, he actually told me one day that she is his best friend. I wish she had a big sister here too, though she does seem to understand that she does have a big sister, she just can't see or talk to her like she can her brother.

I still get a lump in my throat thinking of all this. I posted a video of my girl on my FB page today for my friends to see, so those who didn't meet her can get to know her. A few people I've met more recently have asked about her, how she died, etc. And I'm completely open and honest. I'm not just that woman who lost her daughter. I think they know that, even though they haven't known me for long. I'm glad to talk about her, I always will.

Misery Loves Company, For a While

Tomorrow is my very last day of radiation. It'll be the 30th session. I had a lumpectomy on July 26 and start radiation on October 10. After this, I make the rounds of my doctors again (surgical breast oncologist, oncologist, radiation oncologist) and at some point, start taking tamoxifen.

Yesterday, I told my husband I'm ready for this year to be over and am hoping next year is better. He agreed, and said something about how his Chinese horoscope said it would be a really bad year. At first I thought, "Well, it wasn't really a bad year for YOU." But of course cancer happens to families, in some ways. Still, I don't think of this as the worst year ever. Maybe if it had been worse, if I'd had chemo too, or it had affected other areas of my life more than it did...I don't know, I just don't think of it as horrible. Not nearly as horrible as losing my daughter.

I realized that while I initially seek out those who are going through the same thing, I don't want to limit myself to just being with and talking to those people. When my daughter first died, I did seek out grief groups, other mothers who'd lost children, wanting to know that I wasn't the only one experiencing this. I think that comes from a desire to know others have lived through it, and wanting to know how. I told one mom, seeing her on the path ahead of me makes it a bit easier for me to keep walking it.

The thing is, I also need to look around and see others, people on different paths, and maybe to step onto those paths once in a while. After experiencing all of the things associated with breast cancer, the same seems to be true of another misfortune. I don't want to live in grief, or pain, or any of the other negatives. There are some who experience tragedy and continue to live in it forever. I don't want to, and maybe that's why I seek out others.

A friend asked me, shortly after my daughter died, whether I would feel more comfortable in a group of others who'd lost children. I told her that while I did need that sometimes, I also needed others because I didn't always want to be reminded of that. Ten months after my daughter's death, a friend from college, who I hadn't seen since I was pregnant with my firstborn, came to visit. His timing was perfect. Something about his appearance, his very presence, was comforting. He was the one who suggested I start this blog.

One of my old friends from high school said she'd read a study, something about how we have a desire to reconnect with those who knew us before...before we became the mother who lost a child, the divorced single mom, the breast cancer survivor, the mom of 5 children...whoever we are now. I saw a group of friends from high school recently, and while they know of these things that have happened to me, I somehow feel like their perspective of me is different than those whom I've met more recently. I like having all those different pairs of eyes look at me, see me in different ways.

I never try to escape or hide from the facts--I did lose my daughter, it sucks. I have breast cancer, and that sucks too. These will always be my realities. I'm also a mom of two young children. I'm a runner (well, not this month, but hopefully soon), a writer, a wife, and numerous other things. I want to be all of these, and not lose myself in the tragedies. Isolating myself, either completely or with others who are hiding in grief, would, I feel, prevent me from being anything but a grieving mother.

I looked recently at pictures of myself from the year after my daughter died. I won't lie, I look like hell. People asked at the time why I allowed others to take pictures. My second daughter was a baby, and that was her first year of life. I didn't want her to wonder why no one ever took pictures of us. She'll understand (I hope) someday why I looked so horrible, and why I let people take pictures anyway. And she'll also know that while I was miserable at first, eventually I moved forward.

"I'm Fine"

Breast cancer? Really? Because I haven't been through enough yet?

My first mammogram quickly became my second, then two ultrasounds. A week later, I had a biopsy and needle aspiration. On July 26, I had a lumpectomy and sentinel node biopsy. My lymph nodes are clear, but the small lump turned out to be microinvasive. As in, invasive cancer rather than precancerous as initially suspected. The tiny level of microinvasion puts me into a whole other class of treatments.

I'm currently awaiting the results of the BRCA 1 and 2 genetic test. I've seen the surgeon more times than I can count. Had my first appointment with the oncologist a couple of days ago. The gist of that appointment was that if the test is positive, bilateral mastectomy is probably my best choice. If not, radiation. And either way, at least 5 years of tamoxifen with its laundry list of potentially horrible side effects.

Did I mention I'm still recovering from surgery? It wasn't nearly as bad as my 3 c-sections, but having an incision right along where your bra strap hits is pretty awful. Wear just the wrong thing and by the end of the day, you're rubbed raw. And you can't move your arm around too much or it gets sore and swollen pretty much all the way around from your front to your back. So I haven't exercised much until this week. When I saw the surgeon a week after surgery, she asked when I'd return to work. My response: Um, I was supposed to take time off other than the day of the surgery?

I'm tired. Tired because my body is healing and because my mind is overwhelmed. As another woman put it, in addition to everything you're already doing, you also have to be "cancer patient," thinking about what to do next, researching treatments, diagnoses, etc.

Dr. Susan Love is a cancer researcher who last year was diagnosed with leukemia. She wrote a blog post describing why she doesn't like to be called a survivor. Her main point is that survivors have lived through something, something that is over. Cancer isn't ever over. It can come back, it can get worse, and it can kill you years after you thought you'd "survived" it.

Yesterday my surgeon said something about how tough it is to make decisions under pressure. This, however, is something I'm more than familiar with. As a friend put it, it sucks to be an expert on so many tragic things. I can talk to a parent whose lost a child and really understand, and now to other cancer patients. I would love to stop being the expert on tragedies. The experience does help in some ways. I know not to make decisions when I'm not thinking clearly and I'm very good at recognizing when I'm not/can't.

This is different than losing my daughter in so many ways. In that case, while we had to make a lot of decisions initially (memorial services, selling house, etc.) eventually all that was left was living with the grief. There are obviously things that make that worse, like her friends all starting first grade this year. But I don't have to make decisions anymore. Breast cancer, on the other hand, could require a series of decisions over the rest of my life. And ugh, I hate making decisions. After my daughter died, I tried not to make any because I questioned my judgment.

And the decisions I'm making now are like the worst type of gambling ever. The doctors rattle off one statistic after another, none of which applies EXACTLY to anyone, and you have to throw them all together in some sort of grotesque shaker so you can roll the dice. Out comes my choice and then I see what I win or lose.

I'm fine. When someone asks how you are, is that what you say? Most of us do. It seems though, that my parents and in-laws (perhaps as a result of their age?) have started being more honest. How are you? "Well, I had surgery for my gallstones and it didn't go quite right and I have to go back..." Not really what people expect to hear. I'm honest with my friends, those who I've kept updated about my treatment. I'll tell them now that I'm tired, wish I didn't have to deal with this. But usually, I say, I'm fine. I suppose it's my way of not overwhelming myself or anyone else with reality.

My Story

Recent events have made me wonder about my story. There are many, many events that have happened and I'm sure I record not only the actual things that happen but also the way I feel about them. When I tell others, am I really telling them the facts? Am I telling them what happened or am I describing the way I want them to think about me?

A friend has recently suffered yet another loss, on top of two other big ones she's managed to live through. I wonder how she will someday describe these things to someone new, someone who didn't witness them, because the way I see them and her reactions to them seem to be quite different from her perceptions of the events and her reactions. I also wonder now about the things she's described to me from her past, things that happened to her before we met. Were some of these more horrible for her than she lets on?

And in this, I realize that my story can be whatever I want it to be. For months after my daughter died, I didn't want to be that woman, that woman who lost her daughter. I feared that would be my entire identity. Over time, as I met new people, I didn't always tell them about her. I realized a couple of weeks ago that it's actually painful to me for someone to not know about her. If it's someone I'll never see again (e.g. saleslady at the mall) it doesn't matter, but someone I will see repeatedly, such as a neighbor, needs to know so that I'm free to talk about her whenever I need to.

So my story includes my daughter--the good, the bad, and the ugly of it all. It also includes everything I went through, which yes, is sad and horrible but is real. I can't claim to tell the "real" story, what someone simply reporting the facts might tell. But I hope I'm honest, I hope I convey my true feelings and the impact it's had and continues to have on me. I am strong, I can make it through days and weeks and even months now without feeling that impact. But for two years, I couldn't see straight because of the grief. There are things from that period of time that I don't remember and probably never will. Other things I wish I could forget.

My friend seems to be working hard to try to make her story as even as possible, despite all of the horrifying events that make her life full of more peaks and valleys than she might care to acknowledge. I don't want everyone in the world to see all of these in my life, but they're there, and I hope that at least I'm honest with myself and those closest to me about them.