Monsters of One Kind and Another

Today is one of those days when I really need to stay away from Facebook. It is not just the obvious time-suck that I am trying to avoid (rather unsuccessfully, at that), but the engendering of the proverbial green-eyed monster. Yep. Everyone whose kid is being good, loving to write/read/obey/not act like any kid who lives in my house, everyone who is going on a fabulous trip, and everyone who is in general happy with his or her life is making me crazy at the moment. This is, of course, ridiculous. For one thing, I am not having a bad day, week, month, or even year. Finally. I simply seem to lack the basic human capacity to be happy for anyone today. Yes. I know. This is entirely my problem. See? Staying away from Facebook….

Unfortunately, my envy-monster is not the only one I’m seeing evidence of on social media today – or yesterday, either. The other two monsters kept me on the verge of tears yesterday – for strangers, no less, and I am afraid I’m too tired to do it again today. You see, one of the bad guys is cancer – in this case a stage IV brain tumor in a four-year-old. This is not my story, and I couldn’t speak to what the family is feeling or going through, even if I wanted to. I just hate the monster. HATE it. And yet I can’t leave it alone. I can’t just ignore the posts that are showing up on my news feed from disparate friends from Virginia Beach to Jacksonville. So I cry and pray – really eloquent prayers like: “Oh God, oh God, oh God. Be with them and thank you and oh God, oh God, oh God.” Our own cancer battle was a horror to us – and it still is a lot of the time…and it was a GOOD NEWS cancer diagnosis – with clean scans and remission and all that. And it was and is the single worst thing in this world that has happened to our family. I hurt for me and for them and for everyone, and I am having a hard time with happy. Because there be monsters here.

The other monster I’m struggling with today was perhaps best described by a certain Elizabethan playwright as outrageous fortune. We sometimes call it bad luck, Murphy’s law, or the effects of a fallen world – generally depending on our spiritual background. It is the bad things that happen…like massive, fatal car accidents that take children and devastate families. It is another horror that I cannot pretend to understand or explain, but that I cannot ignore. So I hug my loved ones, live my life in the best way I know how, and pray for all the hurting people out there – even if those prayers are wordless groans for pain I cannot fathom and fear in depths of my heart that I didn’t know I had until they started hurting. “Oh God, oh God, oh God….”

So there be monsters here. Petty ones and nasty ones and horrific ones and probably stupid ones. I hate them, but they give me words that I never found before I knew them. Maybe owning that reality will be the thing that allows me to enjoy the good things again. We are fighting to celebrate victories rather than to fear possible defeats, and seeing that facing the monsters works better than pretending they don’t exist might be a step toward that. I am also trying to come to terms with the reality that sadness and anger resonate with me more than hope does. (Cue worried phone calls from parents…I’m fine – don’t worry!) It is real to acknowledge that I miss my friend who was taken by cancer and that I don’t want to lose anyone else, and it is true that I don’t want anyone to have to bury a child or a spouse and that I hurt for them when they do. “Oh God, oh God, oh God….”

Are you fighting your own kind of monsters? Are they real or are you afraid they’re only in your head? Does that actually make them any less real?

I wrote the above, and then realized that it is mostly about me. Which is normal, I guess – I’m the one I know best. But it feels wrong to only share my reaction to something without giving you the chance to see the real stories if you want to. It feels selfish. “Oh God, oh God, oh God, help me love others and not just indulge my vicarious pain; let me remember that how I feel isn’t the main story here!”

A dear friend who has been fighting a monstrous grief of her own for the last year reminded all of us that a simple, practical, financial kindness to a grieving family is of more help than you might think. “There is nothing that anyone can say to ease the pain…nothing. But this tangible act of giving can keep a family from having to think about or worry about financial matters. Because sometimes, it takes all you have to just breathe.” Here are links, if you want the stories to touch your heart too…it may not be easy, but it is life in the trenches – and I think that is where we are supposed to be. So maybe Facebook isn’t so bad, after all….

http://bensauer.blogspot.com/

http://www.gofundme.com/94wk7o

 

 

 

 

Empty Pages

Last year it was easy to write about what was going on, and it was even easier to spew out how I felt about it. The feelings were complicated and often seemed to contradict each other, but they were so close to the surface and I felt so entitled to them that it was a fairly simple thing to put them into words. This year…not so much.

So, what is going on? Well, Adam is in remission and has now even had the port that was used during his chemo infusions removed. That minor procedure happened yesterday, so it is all over except for the lingering soreness as the incision heals. Many of the side-effects from chemo are also still lingering: the most notable is the peripheral neuropathy which cause both pain and numbness in Adam’s hands and feet, but there is some remaining sensitivity to cold weather, muscle weakness, and general malaise (which is French for “I feel like crap”) as well. And that is on the physical side. Our family’s emotional stability has been, thus far, one of the biggest casualties of the cancer battle. We are all just a bit…crazy. Having kids on the cusp of puberty go through the trauma of watching a parent go through what Adam went through…well…let’s just say that losing our cool happens. A lot. To every single one of us. Often all at the same time. It’s loud. I mean, really, REALLY LOUD.

How do I feel about it? I don’t even know. I am so tired of being so tired. I’m thoroughly sick of my own internal whiny monologue…you know…the one that keeps becoming an external whiny monologue, or sometimes dialogue? I am so ready to feel better that I feel guilty for not feeling good. How’s that for emotive? Really? Could it be any more about feelings? Yes, that ephemeral aspect of the human condition is completely monopolizing my coping skills…and obliterating them. I am accustomed to being able to trace my emotional responses to some real thing that is happening and then to dealing with that concrete thing and then to feeling better. It is a lovely little system that I have always been fairly adept at engineering…until the real thing that I had to deal with was something so huge and all-encompassing and beyond my control. I cannot make myself or anyone in my family better, no matter how well I engineer the machinery for coping. I really hate that. Really, really, really. HATE. IT.

So many of the pages of this year so far are empty. I have nothing that I want to say. I’ve said it all and it is all still there anyway. Talking it out doesn’t help this time. We are still taking life one hitched breath at a time, and can still do nothing but wait for the wounds – physical and emotional – to heal. And pray. I’m doing a lot of that. Many of the prayers go like this: “Dear God…I don’t know just, oh GOD.” And I’m pretty sure that’s okay, because He does know. I hope for some direction soon, but for now…I’m just trying to learn to be.

We are okay…and we aren’t. We are better than we were…and we are worse. And this is life. And we will take it one day at a time. And I hope to fill some pages along the way.

 

On apologizing…

I have a friend who used to punctuate all of our outings by sending a post-mortem apology email. Most of the time there would be anywhere from two to six stay-at-home moms who had gotten together and talked non-stop to the first adults we’d seen in days. We had a lot to say, and this one friend always worried (after the fact) that she’d been offensive in some way. She hadn’t, but she always issued a preemptive apology anyway. We still laugh at her about this…and then say we hope we haven’t offended anyone by laughing…. She actually starts most conversations by issuing a blanket disclaimer, so we’re good now! And that is how I wanted to start this post – by apologizing for not being more diligent in updating my blog. I don’t actually expect anyone who reads it to be angry about my lack of writing. In fact, the argument can certainly be made that I hurt no one but myself in my procrastination. But then I thought of the apology issued by the meteorologist in the Birmingham, Alabama area who issued a mea culpa yesterday regarding the failure of the weather center to correctly predict where the snow would fall. Contrast that with all the officials in Atlanta who have been blame-shifting. The weather people said nothing, so the news people blamed the city, who blamed…the people of Atlanta for going to work and school and for not knowing how to drive in the snow. One early apology in Alabama let everyone focus on those who still needed help, while most Atlantans are just pissed off. They are helping too…because that is what is needed. We southerners may not be experienced at driving in the snow, but we do take community emergencies just as seriously as do our neighbors to the north. It was the same weather, y’all! It was exactly the same storm at about the same time and meteorologists from both states missed the forecast. Two different cities made similar mistakes and had similar traffic problems. (Because, not for nothing, weather is hard to forecast correctly!) The difference is the reaction of the people in charge in the aftermath. Claiming fault and apologizing is hard, but we teach our kids to do it for a reason: it’s the right thing to do and it often really helps.

So, am I apologizing for not writing more? Sure. Because I’m sorry that I’ve been doing other things when this is what I actually love, and my laziness is no good to anyone. And the part I didn’t mention about my uber-apologizing friend? She infected the rest of us. We all do it. We all love to talk and we love our adult time, even though several of us are no longer at home with kiddos all the time, but we also want to be careful that we are understood and not offensive. We want to communicate well, and even when we are snarky, we don’t want to hurt each other. It’s not a bad thing to be careful of. And it’s fun to laugh at all the apologizing too….

Don’t Look Now…But I Feel Pretty Good.

In the immortal words of a dear friend: Farewell 2013 – don’t let the door hit you on the way out. We have not enjoyed much of this year. (That is what one refers to as understatement…I understand if you didn’t recognize it as it is underrepresented in my communication!) So no…not much fun over the last year, or at least for all but the first two months. But here I sit in my suspiciously clean and tidy living room with a fire burning and a tree lit, drinking a cup of particularly delicious coffee and aware that I feel pretty good. Adam is back. He hurts and he’s often frustrated by the lingering side-effects of chemotherapy, but he is here. Which is something I won’t take for granted anytime soon. He even looks the same again…only thinner. I am trying not to hold that against him…. He has often tried to share his weight-loss plan, but I’m not actually that desperate! We hope and pray that 2014 will be an easier year – a time of healing, repairing, and reaching out. We have no guarantee that we will get that kind of year…and we will deal with that when and if we have to. For now, I am going to enjoy my hope. I’m going to plan vacations, budgets, and daily routines that don’t include trips to the Cancer Center. I’m still going to have to make allowances and adjustments for the ever-changing landscape of life and I’m going to hope that some of those unexpected moments bring joy instead of grief. When I see truth – even devastating truth – I settle more firmly into the skin that God gave me. That is what I want for this year: the opportunity to settle into this new skin our family has been given. I guess I’m still taking deep breaths and trying to stay present. I’m just enjoying these moments more than most of the ones from the last ten months.

Is it really Christmas?!

This is now the third draft of this post. I hope it will be the final one, but there is certainly no guarantee of that. I have so much that needs saying and so little capacity to say it well. So. Merry Christmas. We love you all and are so thankful for your love, prayers, and support over this year. And, oh my, thank you God for the end of this year! We are at an end and a new beginning. It is apropos. All treatment is complete, and we begin the remission journey. For the next five years, Adam will be scanned, examined and tested at regular intervals. If, by God’s grace, he is still cancer-free at that point, he will be considered cured. We will at some point be capable of being happy about that, but for now, we are simply numbly grateful that we are done with treatment.

For right now, we are trying to recapture a home and family life that aligns with what we used to have. You know, the kind where we spend time together instead of each hiding in our rooms. I want to start cooking and eating together and planning for the future again. Adam has to relearn how to do all sorts of things – from buttoning buttons to typing to balancing all his responsibilities at home and at church. We have to forgive ourselves, each other and everyone else for hurts intentional, accidental, real or simply imagined. And we still cry a lot. We hope we’ve learned to be gracious with others and with ourselves through this ordeal.

This Christmas isn’t about giddy excitement – except for with the kids who absolutely CANNOT calm down…. But for us, it is about comfort and consolation. Peace. It is a quiet sort of joy and that is all I have the capacity for. We barely made it…and only by the grace of God and with the help of loved ones. But that isn’t a bad picture of life.

So here is your virtual Christmas card in blog form…with no pictures because…well, you know. I look like crap! Everyone else is cute…. We are here. And we have great hope for 2014: we are tentative and wounded, but we are trusting and healing.

Farewell 2013. You are the year brought to us by cancer and we will not miss you, but we will never be the same and will be thankful for the lessons we have learned and the love we have given and received.

A Really Good Weekend

Good things can be really hard. Or hard things can be really good, maybe. This weekend we had a concert celebrating the end of Adam’s cancer treatment…even though he is only 20% done with radiation. (Which finally started – praise God!) We had a hard time getting all the details together, we had a last minute scheduling issue, and none of our family was able to come. Adam is so much better, mentally and physically, but he still has a long way to go to get back to anything resembling where he was this time last year. Our kids are also doing so much better…but they are still adjusting to Adam as parent again. And me? I’m still trying not to be angry about the things I can’t fix and the things that I have to do, largely by myself, because of Adam’s continued fatigue, weakness, and neuropathy issues. Sounds like a recipe for a great time, right? Or maybe a disaster? But it was great. So amazingly great in it’s real life imperfections.
The concert was wonderful and we so enjoyed meeting and chatting with Jeremy Casella, the amazing artist who graced our church with his music. It was emotional – he played a favorite song of mine that was sung at the funeral of a dear friend. I bawled. It was also joyous, musically and socially. We saw friends who’ve been praying for us faithfully for months…and as a church family, we took the chance to take a deep breath and be without worrying. At least, that’s what I did, and I hope everyone else did too. Sometimes life sucks…but God is good all the time (all the time, God is good!). I loved our Veteran’s Day…because I love any day that involves sleeping in and then reading for an hour or two. But after that, I actually got some details around the house taken care of…and it is so freeing to feel vaguely on top of life! I also spent several hours shopping separately with each of my kids. And we all enjoyed all of it! It is amazing! We got new shoes for Ethan amidst extended explanations of the inner workings of the world of Pokemon. His feet are now only 1/2 size smaller than Adam’s…we are calling him Big Foot. He also finally got a haircut. He probably lost two pounds of hair. We were just a bit overdue on that…. Kara and I went shopping and she got a dress that 1. I approve of, 2. she loves, 3. fits correctly and 4. was on clearance!!!!! That never happens. So, yeah, she did decide that her stomach pain was appendicitis…but we got over that. And yeah, the winter coat I got Ethan is too big, so I have to go back again and return it…but it was still a great day with my kids. And we needed that.
It was a weekend of joy with friends, but bittersweet memories of one who is missed here, as she has gained heaven sooner than those here who miss her. She was brought to mind by a song, by a tv show and by the knowledge that she would understand that I like being with my children more now than I ever liked it when they were little. It was a weekend of remembering those who have served all of us by the work and sacrifice in the military – including all four the my kids’ great-grandfathers. A combat Vet and family member thanked me for the inspiration that my blog has been on his personal journey home. I’m humbled by the very idea. I want people to like what I write, but I never imagined that God would use my words to reach and inspire people as He has. It was a weekend of preemptive celebration – cancer treatment isn’t over, but the last phase has finally started, and the end is in sight. And not for nothin’, Adam has felt no side effects at all so far. Talk about a contrast from chemo…. We are doing well and the end of my rope is back in my hand, instead of being barely visible in my rear-view mirror. “One day at a time” feels manageable again, rather than feeling like walking blindly through a sandstorm. So I will enjoy the gift of peace and leave tomorrow’s worries till tomorrow.

Not so angry now….

So, I haven’t been writing here much recently. All I really had to say was that I was angry – the toxic kind of anger that had no productive side and did not spur me onto greatness in literature. Or any other kind of greatness either. Think of it as chemo hangover: I was so tired of being in charge, of having cranky kids, of “keeping” my crazy husband (who definitely needed a keeper), and of cancer in general. Some of those things have abated a bit, but others rage on. Still, I am better and so glad for it. Adam was marked today, so he has officially begun the final leg of the treatment journey. The marks are “not yet permanent, but they will be eventually.” We don’t have any idea what that is about, but we can say that as tattoos go, they are pretty tame. We shall therefore be thinking of more kick-ass versions to add to his collection after this is all over! And maybe I will finally go through with getting one myself. We are, however, fairly cheap when it comes to things like this. Stay tuned for further developments!

In other news, our post-chemo celebration is coming up on Saturday November 9th. We are working out the details of paying our special musical guest, Jeremy Casella, but we are really excited about the evening. He will also lead worship at our church on Sunday, so come to one, the other or both!