(This post is in response to the huge outpouring of comments on my previous post “Time to Move On.” To better understand this post, go and read the previous post along with the comments.)
I’m sorry that you are having to deal with what you are dealing with. You don’t deserve it, you didn’t do anything wrong to get here and it’s just not fair. My feelings for your situation run very, very deep as I’m sure you can understand. I truly wish I could take your struggles away.
In my response to your previous comment I asked you what it was from my post that scared you to cause you to respond in such a manner. Now I think I understand. Thank you for clarifying. Please let me try to explain my world a little bit better.
The dance between the caregiver and the one who needs care is delicate and takes its toll. The one who needs care (in my situation, my love, Maggie) had battles to fight that I can’t imagine. How does one come to terms with, as you suggested, 2 Christmases, 2 birthdays, 2 Halloweens, etc.? Maggie chose to mix denial with a choice to live every single day to the fullest. She/ we chose to live every single day like there wasn’t a time bomb ticking and that it wasn’t 2 Halloweens, 2 birthdays, etc. For giving it a time frame was essentially giving up. Doctors and their bleak outcomes can go suck it.
I asked Maggie back when all this started if she wanted to sell the house and travel the world for the next few years. She said “absolutely not!” I kind of thought she was crazy at the time but I went with her wishes. Her logic was sound: “If we travel the world for X months and then come home, then what? Do I lay down and die? Now that the final trip is done is my life over? Do we just wait? No, we should continue on with our lives like we have planned.”
Later, I asked her if she really thought it was worth it to go back to law school. She told me “Absolutely!” Again, her logic was sound: “Me graduating from law school is my dream. To deviate from that dream would mean that The Cancer won. And, besides, what if I didn’t return to law school (for the remaining six months) and six months later I was still alive and doing fine? I could have graduated in that time. What if I live another two years? In those two years I could have been a practicing lawyer and helped a ton of people. Or I could have sat at home being depressed waiting to die. That second part blows.”
Even later, I asked her again if I should delay my school. Like a broken record, she said “Absolutely not! Going to Acton has been your dream for years. If we let The Cancer derail us from our dreams then The Cancer wins and we lose. Besides, what if gradation time for the class you WOULD have been in comes around and I’m still alive. What a horrible waste of time and life that would be that we spent waiting for me to die. Who would want to live like that? You should never live waiting to die.”
Every single time we had this conversation I asked her “But, my sweet love, what if things get bad?” And every time she smiled her beautiful smile and said “Then we’ll deal with that if and when it happens. We’ll move forward until we can’t. It would be much more sad to have sat around waiting for misery that never came than to live life to its fullest and one day have to slow down and eventually call it a day. A moment wasted is a moment lost.”
And that’s what we did. I hope this blog tells that story. We never one single time said “we can’t do that because of The Cancer.” Instead, we said “We are going to live our lives just like we planned, following our dream together, hand in hand.” We made that decision and lived it out.
I can not put myself in your shoes. I can not at all wrap my head around how it feels to be told by my doctor that I have two years of doing stuff left. But I can tell you from a very, very, very experienced perspective that your happiness is completely in your hands. It’s a choice. Every morning you wake up you choose Path A or Path B. Yeah, yeah, I know that fate has dealt a tough hand but that’s not really something you have a choice in. That’s done and you are going to have to come to terms with that. But how you face every day, that’s your choice. If you are going to have a limited time on this earth doing stuff (LIKE WE ALL DO!) wouldn’t you rather spend that time smiling and having fun?
From the caregiver’s perspective, I can offer you this. First, you have absolutely no clue what it’s like to watch the person who you adore, worship, live for, love, would die for, would light your eyelids on fire for, would peel your skin off for, etc. suffer. Just like I have no idea what it’s like to be told my life will be cut short, you have no idea how it feels for someone who loves you watch you suffer. So stop that judgmental attitude right now. This all around sucks for everyone involved. There’s no measuring stick, awards for being the most upset, or bonuses for being the most pissed off. It sucks. Yeah, I got it. I’ve been there, done it. Get over that part and I say this not because I don’t care, but because, as you stated, the doctors told you two years. TWO YEARS! You don’t have time for this crap!* Is this REALLY how you want to live your last two years? There are so many more magical moments that are within your grasp! Grab! And don’t let go! Keep grabbing!
* Do any of us, really, have time for this type of fatalistic mental masturbation? Go get busy living!
As a caregiver, well, I can only speak for me and from my experience, there is absolutely nothing comparable to watching someone you love slowly fade away. When they suffer from pain and discomfort it’s torturous. Making matters worse, when you are given the drugs and the control to give the drugs that will help numb their pain but get to watch those same comfort-giving drugs take away more and more of whom you love, you struggle in a way that I hope most people never have to understand. Knowing you have to choose between your loved one’s comfort and your own desire to just talk to her one more time is… well, heartbreaking doesn’t quite do it justice. Let me digress with a story.
She was breathing hard and could barely talk. Something had taken my Angel’s voice away. She had a far away look in her eyes but I recognized the primal look of panic and fear. Yet, despite our years of working through problems with discussions, we were both prisoners to the silence. Her breathing was heavy. Her whole body heaved as she fought for air. There were two labored parts to her every breaths: one was the effort to breathe in and it shook her entire body. The other was the effort to relax and let go. Both showed on her face. Both hurt my eyes.
The only tool I had was morphine. Morphine worked to slow the breathing by tricking the body into thinking it didn’t need another breath. It threw the whole gotta-breath sensors off allowing for less urgency and panic. It also numbed the brain and let the body relax overall, allowing for a more tranquil state of mind to develop. Stoned. Not a fun, ah-this-is-pretty-fun stoned but a wow-I-don’t-have-to-breathe stoned. So, here I was, the giver of relief and the taker-away of my sweet heart. And I got to choose. It was my decision and mine alone. I of course wanted her to be comfortable and for the suffering to end. But the cost was that I had to say goodbye. I held that string in my hand. Can you say you understand that pain? Can you really comprehend what it means to be a caregiver caught in that moment? I still can’t, really. But I did. I chose. I chose her.
Amy, I’m very, very sorry that you are in the situation you are in. Oh man, just writing this blog entry is challenging my emotional fortitude. You have to understand, though, that the people who are around you that are suffering WITH you and will be until this is done, however it ends, because they love you. You are mourning right now. While they might not know the pain of the poisons that are being pumped into your blood, they are suffering from a different sort of pain. I can promise you (and if you read more of my blog posts) every single time I watched Maggie get chemo it just ripped apart my insides watching her being eaten by the poisons they served up to beat down The Tumors. I have no words to describe the misery I felt watching her melt under the oppressive crap pumped into her veins.
The one thing I can say for sure, the one thing that sticks out in my head as her dying wish is that she wanted me to be happy. She felt that there was absolutely no reason why my suffering should continue after she was gone. She never felt… Well, she and I had many conversations about what would happen after It. She steadfastly insisted that that it didn’t matter. After all, she would be gone, no longer with me and that my life was now all about me.
What kind of flowers would you like at the funeral?: I don’t care. I’ll be dead. What kind of flowers would you like at my funeral?
How do you feel about cremation?: Sure. Whatever. I’ll be dead. I’m pretty sure I won’t care.
Do you want any particular songs player at your memorial?: No, I’ll be dead. I won’t care. Is there a song that means something to you?
If we choose cremation, where do you want your ashes spread?: I don’t know. Where would it be meaningful to you?
If I start dating will you haunt my new girlfriend?: No, of course not. I just want you to be happy. Unless she’s a bitch and mistreats you. Then, yes, I’ll make her life miserable.
What should I do with your shoes?: Give them to my friends. I won’t need them any more.
Amy, I can’t imagine your situation and you can’t imagine mine. But my desire to move on does not imply anything about my relationship with my wonderful wife. In fact, were she here speaking to me, I suspect that she’d be telling me get on with it. I’m 100% certain. She’d only want me to be happy which is, I’m certain, the same thing you want for every single person in your life.
As many have suggested, I’ve been mourning a long, long time. Every day I sat and watched the life fade from my sweetheart’s eyes I cried. Many times we’d cry together because we were both so, so unbelievably sad. It hasn’t been two months. It’s been three long years of sadness with some fun party times sprinkled in between. Three years of mourning. And I’m so tired of being sad. So, as I stated in my last post, I’m done with it. It’s time for me to move on.
I hope you can understand this, not because I need you to, but because one day your loved ones will look to you for strength. They will be scared and you’ll need to give them permission to live life and be happy. They will feel guilt you can’t imagine. They will be scared and hurting. And that hurt doesn’t just stop one day like it did for Maggie. This is the kind of hurt that pays for psychiatrist’s Porsches. Give them the gift of permission to do what ever they need to do to heal. They will love you more for it. I promise.
I wish for you all the best that life can give you and that you can wring out of life. God Speed on what ever journey you choose.
Now, with that said, I’m done with this, too. I’ve already been a caregiver once. I’m sorry I can’t offer more. I’m headed out to a pool bbq with friends where I’m going to laugh and swim and eat and have a great time. Then I’m going to sit on top of the same exact roof of the parking garage where we held Maggie’s memorial to watch a fantastic fireworks display. I’m going to oooo and aaaah and smile and laugh (and I may even shed a silent tear or two but don’t tell anyone, please.) I’m going to have a fun, fun day. And you know what’s great? Maggie’s coming with me. 🙂