Home > Family, FTIAT, Guest blogger, Love, Reflections > FTIAT: I will not sit idly by…

FTIAT: I will not sit idly by…

Chris (From the Bungalow) and I met face to face in March 2012, when I flew to Chicago to join him and his wife in shaving heads for St. Baldrick’s. Before that meeting, Chris and I had been blogging buddies for nearly a year. In light of our frequent thoughtful exchanges, I fully expected my introversion to be subdued even in the face of our first meeting. It was.

If you’ve been here a while, you know Chris inspired me to read the life-changing Donna’s Cancer Story. You know implicitly of his eloquence and ability to persuade; but for that, I would have a much fuller head of hair right now. What you may not know is that he’s also a father, a musician, a music therapist and one hell of a friend. My offline life is better for knowing Chris, and I trust you will understand why when you read his powerful words below.

Recommended post: Blissfully Bald

I will not sit idly by…

“They’ve ruled out everything else. I have ALS.”

As I listened to my mom speak those words, they didn’t make sense. Somehow, it never really registered with me until just now, right after I typed them. There has been an underlying malaise these past few months following the loss of my parents’ house to fire, and shortly thereafter, the sudden loss of my maternal grandmother to cancer. But that diagnosis… those words? Superficial until now. I didn’t want to accept it. I couldn’t.

Me, age 18, with my mom and grandma about two weeks after losing my grandpa to cancer. We lost my grandma this year.
My mom is dying, and I am helpless to stop it.

Lou-fucking-Gehrig’s Disease, terminal in 100% of cases. Terminal? How?! How do we not know a goddamn thing about this? How did this happen?! Forget about that. How is my mom handling her prognosis? How is my dad handling it? My sisters? Me?

What am I supposed to do now? What is my mom supposed to do? I have more questions than answers. That’s an overwhelming place to be. I’m sad and angry. She lost both of her sisters when they were in their 30’s, lost both of her parents to cancer, and now this? An innocent, loving, caring mother and grandmother sentenced to death at some not-so-distant point in the future while her body slowly shuts down? Bullshit. It’s not right. It’s not fair.

And yet, there’s this voice in my head that keeps whispering to me…

Surrender, it says.

I’m angry, and I want to shut it up.

Surrender.

No!

Surrender.

It won’t let me go…

The woman who grew me with her own body, nourished me with the same, nurtured me with empathy, enlightened me with bedtime stories, soothed me with back rubs as I fell asleep, protected me when I saw monsters in the dark, developed me by teaching me how to do household chores, empowered me with her absolute confidence in my abilities when I had to play a clarinet solo in high school or fretted over a final exam in college, prepared me for family life by showing me what a good wife and mother looks like, and countless other reasons I’m the man I am today… The woman who saved my life as an infant–literally–and many times over figuratively the past 36 years… She’s dying and I’m supposed to “surrender”?

Someone tell me how. Please… I can’t do this. I’m going to be sick.

(I’ll be honest. This is where I lost my shit. The floodgates opened and I had a bit of a breakdown. Feel free to take a moment here with me if you need it.)


Composing myself now, I revisit the word, “surrender.” I go back to Deb’s post on the subject, and that sense of oneness that is just as elusive as it is familiar begins to reveal itself again to me. It’s as if I’d forgotten what it feels like to fall backward into still water, only to rediscover its all-encompassing embrace. In Deb’s words:

The word “surrender” continues to resound through me, but it’s not just a word. It’s a feeling. The feeling is built from acceptance that there will be bad, and there will be good. There will be sadness, and there will be joy. There will be pain, and there will be relief. All of these things will be regardless of what I wish or how I feel about them.

That last line warrants repeating. “All of these things will be regardless of what I wish or how I feel about them.” I like to believe I have a certain level of … let’s call it “invested responsibility” in my life. I can’t say I’m “in control,” per se, but I can take ownership of most things that happen to me; however, when it comes to those things that do not happen “to me,” but have a direct impact on my life, I have to surrender. What choice do I have? I’ve long maintained that acceptance is one of the quickest routes to happiness, or in this case, a slightly dulled sense of pain. There are certain things I can do, but curing ALS is not likely to be one of them. Therefore,

I surrender.

I surrender to the cycle of life. Everyone who lives is born and must pass. I will be present to the moment and engaged with the people I love to the fullest extent possible during the time in between.

I surrender to life’s ups and downs. Life is an adventure. There will be times when I’m joyful, and times when I’m mournful. I will extract all there is to learn from both, and honor them equally.

I surrender to love. Fear is love’s enemy. Whenever possible, I will follow love and exude love’s offspring: hope and strength.

One of Lao-Tsu’s verses about water from the Tao Te Ching comes to mind:

Water flows humbly to the lowest level.
Nothing is weaker than water,
Yet for overcoming what is hard and strong,
Nothing surpasses it.

I sink more deeply into my chair now, surrendering to gravity, to the invisible sludge that’s laid anchor to my spirit. Like water, I slip through its grasp, occupying the deepest regions of my being, beyond the reach of fear and hurt.

Stillness.

My mom is dying, and I am helpless to stop it.

A surge. The dam breaks, and my momentarily peaceful being is transformed into white-water rapids. This is not the end, but a beginning. I am not powerless. Regardless of what I want or how I feel, it simply is. I may not be able to stop the progression of my mom’s disease, but I am able to show her the strength of my love. Certain things simply are beyond my power, and to those I must surrender. To those aspects within it:

Never.

Me, age 21, dancing with my mom during our Mother-Son dance. That's Gramps in the background. He's survived two types of cancer so far.
For this I am thankful.

Chris
More information about ALS can be found here.

last : Batting 50 | Ode to Jay : next

Advertisements
  1. October 19, 2012 at 6:02 am

    Chris: this is devastating. And beautiful. And I have to admit, I got goosebumps. I pray my son loves me the way you love your mother. You are so blessed to have her now. So just love her every moment that you can. And get a lot of things in her handwriting. And hold onto each other. My heart is with you. You are so lucky to have a mother who gave you the gift of love.

    • October 19, 2012 at 6:09 am

      Thank you so much, Renee. That’s good advice. I do feel lucky. I hope she feels just as lucky. Or proud, since my capacity to love is largely her doing.

  2. October 19, 2012 at 6:05 am

    Hi Chris. This is the first time I’ve visited your blog. I try to keep things simple, so I will just say: Your mom did an awesome job raising you! She will always be with you.

    • October 19, 2012 at 6:10 am

      Thank you. 🙂

    • October 19, 2012 at 7:29 am

      Well said. Chris very beautiful post…death is never welcome but your mom is a blessed woman to have a son like you…may God bring peace and comfort to you and each one of your family, hugs!!!

      • October 19, 2012 at 7:35 am

        Thank you!

  3. T
    October 19, 2012 at 6:50 am

    Powerful and well said. I know you’re as proud of your Mom as she is of you! Cherish all of the moments, past and present, while you are together and laugh and cry as they move your hearts. God Bless you and your family. I will keep you in my prayers.

    • October 19, 2012 at 7:35 am

      Thanks, T.

  4. Running from Hell with El
    October 19, 2012 at 7:27 am

    This is breathtaking. I forgot to breathe while reading it. Surrendering . . . and yet still fighting . . . beautiful. Your mom did well, and you’re doing well by her. Take care, friend.

    • October 19, 2012 at 7:36 am

      Thank you, El. It means a lot coming from an exceptional writer like you.

  5. Linda Choiniere Hahlbrock
    October 19, 2012 at 8:19 am

    Chris, our children are our legacies. Your mom has done well!

    • October 19, 2012 at 11:41 am

      Thank you, Mrs. Hahlbrock!

  6. Denise
    October 19, 2012 at 8:35 am

    Beautifully said, my dear boy!

    • October 19, 2012 at 11:43 am

      Thanks, Mom. ❤

  7. October 19, 2012 at 9:00 am

    “I surrender to life’s ups and downs. Life is an adventure. There will be times when I’m joyful, and times when I’m mournful. I will extract all there is to learn from both, and honor them equally. I surrender to love. Fear is love’s enemy. Whenever possible, I will follow love and exude love’s offspring: hope and strength.”

    This piece is phenomenal. I’d never thought of fear as the enemy of love before, but it’s so true. I’m sorry to hear about your mom, but I hope you’re able to find peace and serenity somehow.

    • October 19, 2012 at 12:48 pm

      Thank you so much. I’m glad that resonated with you.

  8. October 19, 2012 at 11:28 am

    Beautiful, my love.

    • October 19, 2012 at 12:57 pm

      Thanks, Karin. ❤

  9. October 19, 2012 at 1:04 pm

    Chris, I know very well of what you speak. I met my wife while her mother was in remission from cancer. She had already gone through a LOT of chemo, and had lost both her breasts and part of her intestines to cancer. Shortly after I met her, she was diagnosed with metastized bone cancer. I could buy my wife a house, I could move her from Dallas to Chicago, I could work 80-hour weeks, I could drive Tamy forth and back to her mom, but there wasn’t one single thing I could do, and not a single thing SHE could do, which was worse. For a relationship that was only months old, that was a hard thing, especially for a stubborn SOB like myself. When your dad is Mr. Fixit and he raises you with the idea that you can fix anything, what do you do when hit with a death sentence for your newfound, hopefully soon-to-be mother-in-law? How do you impress the lady you desperately want to share the rest of your life with?
    In an odd way, we were lucky. Tamy’s mom had enough of the fighting, and told us she was ready to surrender. I was actually more of the problem – Tamy accepted that right away. There were a lot of talks, a few fights, and more than one round of tears on both sides, but I finally accepted her mothers wish. And for a reward, Tamy’s mom lived long enough to see us wed, and to know her daughter would be loved the rest of her life.
    Well done, sir. Well written indeed.

    • October 19, 2012 at 6:39 pm

      Wow. That’s a pretty amazing story, John. It’s often difficult discerning those things which we have power over and those we don’t. Thank you for sharing that here. And thanks for your kind words.

  10. Laura
    October 19, 2012 at 3:01 pm

    Hey, Chris… I love you. That is all.

    • October 19, 2012 at 6:40 pm

      Hey, Laura. I love you, too. Go hug Mom for me. I’ll see you for Thanksgiving.

  11. October 20, 2012 at 1:10 am

    I have been totally unable to get to your blog for about a week now. Blogger having a hissy fit I think. Today I can.
    Thank you Deborah, and thank you Chris. Acceptance is so hard, and so right. My father’s funeral was four weeks to the day from his cancer diagnosis. I was lucky that I was able to accept the good, the bad, the vile and the heartwarming. If I had not been able to ‘surrender’ or ‘accept’ I would have missed many precious moments. Chris, I am sending so many good wishes your way.

    • October 20, 2012 at 7:29 am

      Yes! I think that holding onto those things over which we have no control steals our attention. There’s very little room for being present to those precious moments when our focus is on an unattainable goal. Thanks for the good wishes and for your comment.

  12. October 20, 2012 at 5:38 am

    I am stunned by the beauty of this. I fought my brother over our beloved fathers diagnoses of Alzheimer’s and his decision to stop all his medications when he lost the love of his life, he survived her by only 13 months. My surrender, though painful was immediate. My brothers well I think sometimes he is still struggling.

    You are so fortunate, so blessed in your great heart and hers. I am writing through tears, they are for you and your mother.

    • October 20, 2012 at 7:39 am

      Thank you, Valentine. Your story reminds me of the song “The Luckiest” by Ben Folds.

      I’m sorry your brother is still struggling with the loss, as I’m sure you are to an extent. Surrender/acceptance is sometimes the best place for healing to start.

      I’m glad you connected with this. Thanks so much for your comments and your tears.

  13. October 20, 2012 at 9:45 am

    Beautiful, just beautiful. I connect with these words. Thank you both.

    • October 20, 2012 at 9:58 am

      I’m so glad you connected with this. Thank you.

  14. October 22, 2012 at 11:52 am

    (Leaving a meaningless comment for the sole purpose of subscribing to follow-up comments.) 🙂

  15. October 22, 2012 at 1:04 pm

    Being able to surrender is a huge gift. Sometimes we will have to do it over and over again, but luckily, there is no stipulation that says we can’t. This is roughest of roads and toughest of experiences. I lost my step mom in just 8 months from diagnosis to stage four brain cancer a decade ago. We were very close; she had been in my life since I was 11 and helped me find God and a safe place to commune with him in my heart. She filled in the gaps where my own mom couldn’t, and when we lost her, a part of me died, too. It took me a long time to accept the whole situation, as I was also newly sober and acceptence and surrender did not come naturally. Eventually, I did, though, and her light continues to shine and be reflected in me, even if only now and again. A shooting star crossed the sky the night of her death, and I caught a glimpse of it just in time as I lay in my bed clutching my Bible sobbing. I knew it was her spirit-that God was telling me she was up there, and every time I look up at the stars to this day I feel her presence.

    My heart is with you as you do your very best to be supportive and positive with your mom and your family. You are a wonderful man, as has been represented by your blog, your honesty, and your willingness to share your emotions, and I know that your mom must be incredibly proud. Beautifully exposed, Chris. Thank you. 🙂 XOXO-SWM

  16. October 23, 2012 at 7:11 am

    Thank you, SWM. We all have our moments, ugly and beautiful. I do, anyway. I’m sorry about the loss of your step-mother. I hope someday I’ll leave such a positive impression as a step-dad.

  17. October 23, 2012 at 4:21 pm

    Beautiful. Soulful. Just live you and your spirit Cheis. And your lovely mama. It’s not fair. It’s just not. Xoxo

    • October 23, 2012 at 5:36 pm

      It’s not. Thank you, Katy. ❤

  18. Angelina Libby
    October 26, 2012 at 1:41 pm

    I am one of those people who subscribe to everything happening for a reason. Today Mary Tyler Mom wrote a guest blog that brought me to The Monster in Your Closet which led to me reading this. Surrender is something I’ve been fighting with for almost 4 years. Every time I think I’ve let go I find another connection I didn’t realize was there. It is my daily battle. Thank you for sharing this with us all. There is nothing more precious than the bond between mother and child. I will pray for you, your family and your mother.

    • December 17, 2012 at 7:25 am

      Thanks, Angelina. Surrender is difficult. We think we have so much control over our lives, and we do, but it’s not always where we’d like it to be. I have control over how I respond to the things that happen in life, but not many of the things that happen.

  19. November 16, 2012 at 10:50 am

    Beautiful – again.

    • December 17, 2012 at 7:25 am

      Thank you.

  20. November 27, 2012 at 5:53 am

    Hi. This woman was kept alive for 20 years with a certain medicine and she’s still kickin’! I found this on YouTube.

    http://www.youtube.com/user/SurvivingALS?feature=watch

  21. December 4, 2012 at 12:31 pm

    Chris…just found this post…i’m kind of in shock for you and your family and don’t seem to have many words. But I wouldn’t leave your post without saying I will think of you, your dear mother and hold you all in love and light….Stay as centered as you can my internet friend….

    • December 17, 2012 at 7:28 am

      Hi, L. Thanks for your comments. I’m still a bit in shock. We drove down to visit my parents along with the rest of my family for Thanksgiving, and it was upsetting to see how much she’d changed in just a few months. She says it’s progressing slowly, but it affects more things at once as it does. Thanks for the love and light. ❤

  22. janeggg
    December 6, 2012 at 11:17 am

    oh boy, new to wordpress, new to you and now crying! fabulously written, heartbreaking and so truthful. fabulous xxx

    • December 17, 2012 at 7:30 am

      Thank you. janeggg. I’m glad you found the post.

  23. Robin
    December 18, 2012 at 4:55 am

    Two years ago today I lost my husband of 32 years to cancer. He fought long and hard until one day he said I’m done, I can’t do it anymore. From that day until his death from that horrible desease he had a peace about him. He had done all he needed to do in his life. He danced with his youngest daughter at a wedding, even if it was her brothers. He saw all 5 of his children go to college, become productive adults. He had seen his legacy in the eyes of his grandchildren. You have given that to your mother. Now you and your children are her legacy and she will live on in the hearts of all who have known her.

    • December 18, 2012 at 7:09 am

      That’s a really lovely thought, Robin. Thank you. I’m sorry to hear about the loss of your husband.

  24. November 25, 2015 at 5:58 am

    Deb,

    By synchronicity (synchrodestiny?) I was led back to this post this morning. I won’t go into the details of how and why because I’d basically have to write the history of the universe. (Isn’t that how all synchronicity works?) Suffice it to say, I needed to read this today, this morning, and it was ridiculously implausible that I should simply stumble upon it.

    Thank you for encouraging me to write for your FTIAT series. I could not have known at the time that my future self (three years later!) would need it in this moment. Who knows if/when next I’ll need it. ❤

  1. October 19, 2012 at 5:48 am
  2. October 26, 2012 at 5:36 am
  3. November 30, 2012 at 6:17 am
  4. June 10, 2013 at 10:01 am
  5. November 25, 2015 at 2:00 pm

Please weigh in--kindly!

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: