Not That Danged School Bus Again!

18 07 2011

If you see it coming, get out of the way for Pete's sake!


I’m afraid I could lose my battle to Stage 4 breast cancer someday. It’s not going to be tomorrow. But then again, I could be leaving the planet far sooner than I ever imagined. Last week’s hospital stay was a shocking reminder of just how fragile life can be, how suddenly and unexpectedly it can come to a screeching halt.

No one ever plans to live to say, the ripe old age of 30, 40, or even 50. When we look out at the horizon of life, most of us see 70, 80, perhaps even 90. That’s the purpose of those “life expectancy in the United States” stats — so we know what we’re shooting for, what’s typical. But a late-stage breast cancer diagnosis acts as a zoom lens that brings that horizon line into focus at close range.

I’ve always envisioned a long life, maybe 80. I’ve had a pact with my bff Diane for years. We met when we were 19 and promised each other then – and on many occasions since – that we would one day rock in chairs beside one another. That was the plan. And it’s still the plan.

But a Stage 4 breast cancer diagnosis, well, let’s say it throws a little wrench into our deal. Do I believe I’m going to live a long time? Absolutely. I know that there are amazing new breast cancer treatments in the pipeline right now and that I have a good shot of living long enough to reach them. Yet, it’s somehow not a contradiction to also say that there’s a fear – a very real and justified fear – that I might not.

This is a long-winded way of saying that the bus analogy that comes my way, well, a couple of thoughts on that:

1. I hear it way too often, and

2. It’s a poor analogy.

First of all, what’s The Bus Analogy? That’s when I share my fear of losing my battle to this disease with someone and they say, “Well, heck, I could get run over by a bus tomorrow. No one knows.”

And over the past few months, I’ve learned that there are lots of versions of The Bus Analogy. There’s the airplane, car, Mack truck…you get the picture.

All of which are true. Except.

Except that if you really fear being run over by a bus, involved in a car accident, or on a doomed flight, you have a choice. You could opt out. All of these threats are outward. Mine is inward and I can’t escape it. It’s with me everywhere I go. I have no choice.

That’s the difference. And why The Bus Analogy — although I know it comes from the heart of people who wish to meet me on common ground — just doesn’t work. Not only doesn’t it work, but many times, it’s followed by a disconnect. I feel misunderstood, despite the best of intentions, and I get quiet. Conversation over.

So, what to do when you find yourself walking in these shoes beside someone like me?

Sometimes, many times, the best words are the simplest:

I’m so sorry.
That must be really scary
I can’t imagine.
I’m here for you.
What can I do to help you?

Or all of the above. Your heart is in the right place. Rest assured that anyone who hears your words, your attempt to calm the storm inside of them, knows that.

Copyright 2011, Amy Rauch Neilson

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23 responses

18 07 2011
Jennifer Wolf

How about, “I love you, Aim, and I would do anything for you. You are amazing, and wonderful, and strong and courageous”? (School)busses are dumb. Don’t think about them. Summer has just begun!

18 07 2011
Sarah E. Ludwig

What a beautiful post, Amy. You write so eloquently. This is a gentle way to explain to people who may not know what to say to you, or someone in your situation. I’m sharing it on Facebook for others to read.

Love, hugs and prayers to you, sweetie! xoxoxo

18 07 2011
kiapet51

My tears are flowing for you right now. You and others who have gone through what you are going through only know how you feel. You are so right about the “bus analogy.” Any of us can leave this world at any minute, but we don’t sit and dwell on it. Please excuse us who have no idea how you feel, and we believe we are going to say something that may make you feel better for one slight second, when in fact it may do just the opposite. One day you will be on that porch, rocking away with your BFF. Love you girl.

18 07 2011
Roxanne @ Champion of My Heart

Excellent points top to bottom. I’ve run into trouble with some people using variations of “I’m sorry.” Any suggestions on what to say when that one backfires?

18 07 2011
Amy Rauch Neilson

Give me an example of a “backfire” and let me see if I can help.

18 07 2011
Roxanne @ Champion of My Heart

“There’s no need to be sorry …” like somehow being sorry or sad or worried conveys negative mojo.

18 07 2011
Amy Rauch Neilson

Ok, Roxanne, here’s what I’ve got for you — don’t know if it will help or not (although I can tell you that I’ve not only spent plenty of time living in this kind of world — from the time of my Mom’s death from this disease in 1992 — but also have worn out the cushions of many a therapist’s couch), so here goes:

So, the person who is hurting says, “There’s no need to be sorry.”

Ok, let it drop right there — the “sorry” part, that is. Just be silent for a moment and let it go. Then move on to something else, such as, “I’m here for you,” or, “What can I do right now to make something easier for you?”

If that person continues to reject your outstretched arms, he/she just may not be in a place to accept love or help from anyone for that moment. It may be just too difficult — perhaps he or she is still in shock, etc. If that seems to be the case, you could say, “Hey, just know I’m always here for you. You let me know when you’re ready.”

The person who is hurting may simply not be ready to let anyone in, or may not even be aware that they are shutting people out and/or need others. You may try gently revisiting this situation with this person every so often, just gently from time to time reminding him or her that you are there, whenever, for whatever. Eventually, when they’re ready, they’ll let you know by letting you in.

Does that make sense/help at all?

Amy

18 07 2011
Lori

Well put Aimers…I love you, cuz

18 07 2011
Rita P

Perfection, Amy, sheer perfection. Been there, done that, and I personally wanted to bop ’em . . literally. . . . rather hard. U R far kinder than I.
If only cancer were a bus . . .!!
We love you, your spirit, and your willingness to lay it all out there for us to grasp in whatever way we can.
Enjoy His many blessings, and may the distance from here to the horizon grow very very long!

18 07 2011
Amy Rauch Neilson

Amen to that, Rita. May that distance to the horizon grow oh so long and very, very far away.

18 07 2011
Sandy Sherman-Sarlund

Wow, so very true. I understand on a completely different level (you know what I mean). I truly cannot imagine what you go through every day or how you remain so positive. You are always finding the silver lining to every situation and your glass is always half full. Cheers to you my friend. Let me know when you are ready for some chicken piccata 🙂

18 07 2011
nicole

The sting of thoughtless words seem to always haunt us. As I read this post I remembered back when my Alex was born 7 weeks early. Seven weeks early isn’t too bad except when you without oxygen for at least 10 minutes in the womb and it takes at least 5 minutes to get you going once you’re finally out. He didn’t have a single organ in his body that worked properly. He had 16 diagnosis’ and was on several medications, a ventilator, bililamp, feeding tube and just about every other life-sustaining device you can think of. And then the husband of a friend said to George and I when we packed our empty infant carrier in the car, “At least you won’t have to worry about being woken up by a crying baby in the middle of the night.”
What the???? I still remember all the thoughts spinning in my head at once, as God gave me the strength to graciously reply, “yeah.” And when we got home I was able to seek refuge in the arms of my man who reassured me that he too wished that Alex could wake us up in the middle of the night.
All to say…I will pray for that same peace that God gives when He gives you the grace to reply with His love and not return stupidity with our fleshly responses.
You’re an inspiration, keep fighting, He wants you here for a reason!!!
Nikki

18 07 2011
Amy Rauch Neilson

Nikki, How beautifully written. Thank you for sharing and I am so very very sorry for your pain. Thank you for sharing it. And I am so glad that like me, you have someone beside you to love you always and gather you in his arms when you need it most.

18 07 2011
Kathy

Thank you Amy. Your words, once again, are wise to those of us don’t know exactly what to say. I deal with it daily with my boss who has been diagnosed with pancreatic cancer. I don’t know what to say, what not to say, what’s right and what’s wrong. I think all of us “on the outside” don’t know that really, the wisest thing to do or say, is what comes naturally. As they say, “out of the mouths of babes” comes the honestly we all look for. So thank you. I don’t know what its like. I can only guess and like all your family and friends, I love you and you inspire me to be a better person. So to heck with the bus….how about this heat!!!!

18 07 2011
Amy Rauch Neilson

The heat is well, hot, and my prayers go out to your boss. There is a whole family of PARP inhibitors and I recently read about one that held promise for pancreatic cancer, just FYI….

18 07 2011
Bonnie

You know Amy, I had never really thought of it that way before. I had never really been able to articulate that inward vs outward difference. I think that none of us know the day we take our first breath in Heaven. Having had cancer creates for me anyhow, “that day” looming—like I have a time bomb in me, waiting to blow. I do treasure each day like never before. I’m not perfect and blow it by missing those moments –but I understand exactly what you mean. My cancer hasn’t returned but I live each day with knowing it could. I will pray for you, that you will know God’s peace and this will dispel the fear.
Thanks for being real. I think many will benefit knowing the best words to say to people fighting a merciless foe.
You are awesome!

Bonnie

18 07 2011
Sue

Amy, thanks so much for sharing this. I think a lot of people don’t know what to say, and you have so kindly helped them know what is acceptable.

I found a similar scenario when my twins passed away – I got all sort of stupid platitudes “things work out for a reason” and other dumb stuff, and although they made me mad and felt invalidating, I also felt embarassed because I think I might have said some of them myself before I knew better. Ah the lessons I wished I never had to learn.

You are far kinder and gentler about this than I probably was. And I admire your strength and courage.

I honestly can’t imagine how scary this must be for you – but I do hope that having friends (IRL and online) pulling for you bouys your spirits. It’s okay to be scared, but I hope that every once in awhile you get a few moments of peace too. Hang in there.

18 07 2011
Jen

Thanks for your wisdom aim! You are right….and I have used that bus analogy before. You made a great point! love you tons!!!!

19 07 2011
Jennifer Bopp Stegbauer

Dear Amy,
thank you for putting into words the reasons why I never like the bus analogy. I have heard it used in many different types of situations and always felt disappointed afterwards. I even tried to go with the bus analogy flow. It doesn’t work because the person saying it has just discounted the other person’s feelings instead of acknowledging and moving on. And this is no joke, I know a person who has a family member who really was hit by a bus and killed, and it was awful and tragic, a loss. These are feelings of loss, separation, sadness how it will be a change without that person that are justified even when a person peacfully passes in the night at age 100. Feel your feelings, express them when necessary, and move on when ready.
Love you,
Jennifer

19 07 2011
Elizabeth DeWaard

Amy–Remember the lady with the pink hair—–
Betsy

19 07 2011
Marnie

I love this blog discussion. This is an important concept and you “educate” with kindness. You have a grace about you that is learned by walking through the fire so to speak…you have experienced loss, pain, worry and fear that many others (fortunately) do not have to bear in their lives. As we have talked about our common experience of losing both our parents too early to cancer, I am able to understand your world to a certain degree (the tests/treatments, the effects of chemo on the body, the effects on the family when their loved one is living with cancer, the anxiety, the lack of control, the numbers games we play with ourselves, the urgency to live each day to its fullest, etc.), but it is true that I cannot fully comprehend what you are going through now – the “immediacy” or your fight is not “once-removed”. Keep your beautiful words coming. We learn from you and your beautiful soul imprints our own. Please let me know if you would like a dinner prepared, a toilet cleaned, or just a visit. (I could do all three as a package deal). Much love to you, Don and Theo.

19 07 2011
Franny

I’m so sorry.
That must be really scary
I can’t imagine.
I’m here for you.
What can I do to help you?

I do feel better now. Thank you for understanding my inability to before.

19 07 2011
Marie Petrides

Amy you words are so true. I must hear that bus story atleast 10 times a week. I realize that although everyones intentions are good and they only wish to bring us comfort it simply doesnt make life any different for us. I am battling stage 4 breast cancer since December. Although I refuse to let this disease get the best of me and I continue to try and live my life as normal as can be, it is still so hard at times. I find myself feeling like I am a square peg trying to fit into a circle peg…….I feel like I am not really sick like most cancer patients but I dont quite fit into the healthy catagory either. So for now I will continue to thrive and try each day to find my new “normal” way of living …..I wish you happy thoughts and may you continue to be blessed with peace of mind…..Marie

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