I read about Sue getting her dad's luminary for Relay for Life.
How she cried and cried, feeling that even two years later, the pain was so fresh.
I read about Kari fighting with family about moving on. Feeling ready to take steps away from living in the past, and receiving little support, in fact, receiving condemnation.
I thought about the concept of moving on, moving forward.
What we C's like to call breathing.
And I know that people think I'm doing it.
They see me walk and talk.
Laugh and cry.
Hug and shout.
Work and play.
Teach and learn.
And love, too.
I bet it looks like life.
Looks like moving on.
Sometimes I think it is.
Sometimes I wonder.
I guess it depends on your definitions.
One thing I always love about Robin is his willingness to delve into the myriad of meanings contained in a single word...its nuance, its context, its history, its origins.
We decorated Dave's luminary.
We went down to the track,
amazed and awed by
hundreds and hundreds
As I walked around the track,
one for each year that Dave lived
with death inside his head,
one for each year that Dave lived
with hope inside his heart,
I listened to The New Cars.
(The NEW Cars?? Oh well.)
Who's gonna tell you when,
It's too late,
Who's gonna tell you things,
Aren't so great?
You can't go on, thinkin'
Nothings' wrong, but bye,
Who's gonna drive you home,
Who's gonna pick you up
When you fall?
Who's gonna hang it up
When you call?
Who's gonna pay attention
To your dreams?
And who's gonna plug their ears,
When you scream?
You can't go on, thinkin'
Nothing's wrong, but bye,
Who's gonna drive you home,
Who's gonna hold you down,
When you shake?
Who's gonna come around,
When you break?
You can't go on, thinkin',
Nothin's wrong, but bye,
Who's gonna drive you home,
Of course, the answer is nobody.
Even though Zach swears he's going to come visit every single weekend from college so I won't be lonely.
Even though I have friends I could call.
Even though people say, "I'll be there."
The truth is...
there's nobody to drive me home,
not in the way they talk about in this song.
I have a friend, who is moving forward.
I'm happy for her.
But it made me realize how much I am not.
And I decided,
as the kids and I
all around the track,
And maybe it's even okay
to move back a little.
And I went back to the
And found some links I hadn't copied to this one.
So I moved them.
And read them.
And was back in 2005.
I'm not sure who will drive me home,
but for now, it's okay.
Here's a picture of the last Relay for Life that Dave attended. A time when HOPE was still part of our daily life. When our hope was for something we could see and touch, when we didn't have to remember that the real hope is for the eternal, when we still thought we could have more of the temporary.
I learned a lot on this journey. I'm still learning. Things like:
Grief is life-long.
The best memories hurt the most.
Time does not heal.
I can get better at living with a scar.
Living today does not devalue yesterday.
Strength has nothing to do with it.
Guilt isn't helpful.
It's okay to throw well-meaning advice out the window.
Real faith can stand questions.
Real love can stand just about anything.
I'm not the only one.
But I'm the only one living THIS life, THIS loss.
All that matters is the connections we make to each other.
Really. That's all.
I know there will be more to come.
There always is.
I'll share with you a post I found that I had written to other wives who were living with the same beast we had battled for so long...from Marg's Journey. I'm not sure if I'd title the words wise, but they will give you a bit of an insider's window, one some of you may have never seen. One I pray you will never live.
SOME VERY WISE WORDS - MICHELLE MEYER WRITES
TO ANOTHER SPOUSE CARING FOR A HUSBAND
WITH A BRAIN TUMOUR. (Reproduced with permission.)
Date: Fri, 16 Dec 2005 00:07:46 -0800
From: "Michelle & Dave Meyer" firstname.lastname@example.org
Subject: RE: tired wife (LOOOONG reply)
Whew!! Tired is right. I'm sorry, Lori, that you find yourself in this place. It's a difficult place to be, and you've been living it for a while, it sounds like. You're doing so much, taking care of children, a house, your husband and somewhere in there, even taking care of yourself. Take just a minute to take a deep breath and give yourself some credit for all you're doing. I'd give you a hug if I could!
A brain tumor can alter a person's personality, particularly tumors located in the frontal lobes. This can be very tough to deal with. For the caregiver and for the patient, too.
I haven't walked in your shoes, so I don't know if anything I say will be helpful at all. We were fortunate that Dave remained the same, sweet, loving and giving man throughout his 8.5 year battle as he was the day I married him. That's not to say we didn't have disagreements about this whole beast we were fighting. We did. I'm going to share some of what I learned through some of those hard times, and if it's not helpful, just delete it!
I learned that this journey we were on truly belonged to Dave. I was involved certainly, as were our children (5, 4, and 1 when he was diagnosed), but the actual journey was his. This was his life we were talking about, and I learned the hard way that the burden wasn't mine to take, no matter how much I wanted that. I was a witness, a helpmate, a supporter, and everything that happened affected me, it's true, but my life was not on the line. This was Dave's life, and ultimately, his death. I had to learn to be there with him and for him, whatever came.
Dave would never talk about dying, either. He was determined to live until his last breath. He would talk about treatments and research and what we were going to do, but never, ever about "what if..." He lived in the moment. There were things about that attitude that were wonderful, and parts that made it hard to live with. I tried to remain open and give him the opportunity to talk about things if he wanted to, but not force my agenda on him.
Now, marriage is a partnership, and it's important that both people have their needs met. I was fortunate that Dave would always listen to me and what I needed to talk about. He also was not in denial, in that he had all the legal/financial matters well squared away for us. But as far as needs go, in many ways, Dave's needs were primary. What he needed mattered most.
As far as ultimatums go, I've never seen an ultimatum improve a relationship. It's just not a good way to build trust or open communication or mutual respect or any of the many things required in marriage, or friendship for that matter.
Now, giving ultimatums is very different from setting boundaries. Boundaries are limits that keep you safe, help you meet your needs and keep relationships from becoming abusive. An ultimatum says, "Do this or else." A boundary is when we say, "This is what I am/am not comfortable with/about. This is what I need. This is what I'm willing to do."
As far as the kids go, that one breaks my heart. I feel sad that what your husband is going through is keeping him from being able to enjoy his children. I'm not sure what suggestions to offer...perhaps talking with him about setting some time that is just for the kids and time that is kid-free or quiet for him? Remind him how important his presence is to them, how much they love and need him, and create certain times, "kid-dates" if you will, when he can muster his energy and patience for a short time and play a game or throw the ball around or whatever. Perhaps he can rally his energy for this time and make it enjoyable, knowing he'll have some space to himself later. Then find a place and time where he can have peace and quiet to just watch tv or read or whatever he likes.
As far as the house being in top condition. Well, first of all....HA! You've got kids and cancer living in the same house. I think you're lucky if you can still find the kitchen sink! This is a place where boundary setting can be very helpful. You can say..."I'm comfortable with the kids picking up their toys twice a day. I'm willing to make sure they do that. If you'd like them picked up more often, you're welcome to do so, but my commitment is twice a day."
Also, I know for me, that when I want things clean, it's almost always about control. My life or my emotions or my head feels out of control, so I grab the vacuum, trying to establish some order, some sense of making things go right.
The fact that he wants to be with you 24-7, and is following you from room to room in order to be with you, speaks to the fear that's underlying his angry behavior. Anger almost always masks fear or hurt. Anger is a secondary emotion, a protective device. The most effective way is to address and respond to the underlying emotion. Imagine his fear. He has fought this beast for 15 years. 15 years! You don't say how old he is, but that's a significant number of years. He's beat it back twice, and now it's back again. He's scared that it will keep coming back, he's scared of losing you, he's scared of losing control, he's angry, frustrated, sad, confused. The reason he doesn't want a "reminder" is that he's got the ultimate reminder, throbbing, ticking, growing inside his very skull. And that beast robs us of many things. Ultimately, it robbed me of Dave.
I try to imagine what having that reminder in my skull might be like. And while I did live with fear, closely, for a long time, I'm sure that my imagining doesn't even come close to the reality of what it was like for him. Dave looked death in the face every day. He carried it around in his head for almost 9 years. What must that be like? And then I think about what a crab I am when I have a headache or a cold. And then I'd think about what Dave was dealing with. Wow. Humbling.
So my suggestion would be to respond to your husband's clingy behavior with reassurance. It's a paradoxical thing I've experienced over and over, especially in the parenting arena, but it's true for most relationships. The more we encourage someone to move away, the more desperately they cling, but once we say, "Cling away, I'll be here as long as you need," they suddenly get brave and independent...why? Because the need underlying the behavior was met, the person feels safe enough to venture out.
I'm going to paste a post that I sent to someone on another list about finding the balance in a marriage when you're living with cancer. Maybe something in there will ring true...
PROUD wife of Dave
"Serenity is not freedom from the storm,
but peace within the storm."
snipped post from Nov 04, 2005 to btcaregivers list:
"This road we are on is exhausting, treacherous. There is rarely true peace. It's certainly not what any of us bargained for. Dave and I had a tradition of watching the video of our wedding on our anniversary. Last year, as we did that for the 18th time, Dave said, "Boy, if you'd known what you were in for, you probably would have run for the hills." In that 18 years we buried one child, had another diagnosed with autism and lived with Dave's tumor for almost 9 years. It was certainly not in the fine print of whatever contract I'd signed! But I still would not have run anywhere but to him. While the journey wasn't what I envisioned, Dave was EVERYTHING I hoped for, everything I needed. The road we walked together was hard. Beyond hard much of the time. For better, for worse, in sickness and in health, we hit it all. But I wouldn't have traded a moment of that roller coaster ride with Dave for a safe, sedate walk in the park with anyone else.
The balance in our relationship certainly shifted over the years, over the course of this disease. I don't know that anyone actually has a "normal" marriage. Couples have to find what works for them. For us, it was ultimately important that in all things, we were together. We didn't always agree, but we were always a team, on the same side. Dave was a football coach, so football analogies come easily. Each part of the team is important to the whole. The quarterback may seem to be in control, but he can't do his job without the protection of the o-line. The receiver may run into the end zone, but he couldn't do that without the qb passing well or the blockers doing their jobs. So, while many thought Dave was depending on me, or that I was doing so much, in truth, they just didn't understand how to value all that he did, all that he was. He was more than my equal. He was my everything, my support, my protector, my hero. In the end, even after he had lost the ability to walk, to talk, Dave would pat his chest, wanting me to lay my head on him so he could stroke my hair, to give comfort to me. No, he couldn't take out the garbage or pick up the kids from practice or help me make any decisions. I won't kid you, that was awful.
But that is nothing compared to what it's like to not have his presence here. Kate was sick last week. At 4 am, as she threw up again, I missed him so. I remembered past times, holding a sick child, looking over that feverish little head, to see Dave's eyes smiling at me, saying, "It's ok, hon. She'll be fine. You're such a good mom."
Life is never what you expect. They say life is what happens to you while you're busy making other plans. In the bt world, we didn't get the life we wanted. We got ripped off. You're right that not many people in this world really understand, the ones who "get it" are few. And it's okay to have a lot of big, sad, angry feelings about what you're going through. Really it is. But don't stay there too long. If we spend all our time grieving the life we don't have, we miss out on the one we do have. And there are still blessings here. There is still joy.
Your husband is still here, still in your life, still in your arms. That in itself is precious beyond belief. Treasure it. Take a moment to breathe, fully, deeply. Look at his face while he's sleeping. Tell yourself the story of how you met. Remember why you fell in love with him. Hold on to that feeling with all that you have in your heart. Remember, you're tired, you're drained, it's true... but he's fighting for his life. Like others often simply cannot fathom what you're going through, we as caregivers can imagine, but not truly know what it is like for these warriors. All we can really do is love them, honor them, and walk beside them. I think at the end of our life, we will ask ourselves: Did I love? Did I love all I could? Focus on that love, that connection. In the end, it's all that truly matters.
I don't know if any of these words are wise, but they are heartfelt and come from love. Michelle"