To be, or not to be…assertive. That is the question I pose to you.

My hospital room when my assertive  appendix demanded its release.
The view from my hospital bed on Memorial Day.

Being assertive is a challenge for me, but apparently not for my appendix, which choose Memorial Day to demand its freedom. That evening, I happily complied, and a surgeon put my appendix, and me, out of our misery.

(BTW, I’m perfectly happy without that little wormlike appendage to my colon. I’ve recovered quickly, thanks in part to the many doctors over the last century who contributed to the development of laparoscopic procedures.)

The day after my surgery, an interesting dilemma presented itself–to defend myself, and risk offending my surgeon, or to stay quiet. I choose a middle ground, and I’d love to know what you would have done.

To be assertive may risk causing offense.

In my memoir, which is written and soon to be agent-ready, I explore the roots, manifestation, and consequences of my excessive agreeableness. I own the sad truth that my inability to stand up for myself made it difficult to stand up for my son Matthew during his long rumble with a childhood brain tumor.

For many years, I was well aware of my reticence toward speaking up. There were times I tried to be assertive, but mostly I stayed in my comfort zone where others’ needs took priority over mine.

Being assertive is outside my comfort zone.

But with my uncomfortable truth ready to be laid bare to the world on the pages of my memoir, I’ve been making a concerted effort to be stronger, more assertive, to speak my truth.

Part of what makes it hard for me to speak openly is my fear that I’ll offend someone. That’s what happened with my surgeon.

The morning after my appendectomy, the diminutive man with thinning hair, square glasses, and nutmeg skin stopped in to check on me, and give me my discharge instructions. In a thick accent, he sped through the dos and don’ts. I caught a few snippets–showering was OK, swimming was not, no lifting, call his office if I had any problems.

“So I don’t need to schedule a follow-up appointment with you?” I asked when he finished.

“Yes, you do!” he said with a laugh, “I just told you that.” His laugh didn’t hide his derisive tone.

What I wanted to say, also with a laugh, was, Well, you have a very heavy accent and you talk too fast, so don’t blame me.

But that seemed rude. I was afraid I might offend him. I didn’t want to sound prejudiced.

So what I said, with a smile, was, “Well, you gave me a lot of information, and I’m just trying to take it all in.”

This was growth for me. In the past, I might have said, I’m sorry, I must have missed that. Or I might have been too embarrassed to say anything.

I took a step in the right direction by not taking the blame, and not feeling the shame. But I regret not being more assertive, and I don’t know how I could have responded without offending the person who had held my life–or at least the life of my inflamed appendix–in his hands.

I regret not being more assertive.

The dilemma is, when you want to stand up for yourself, but you don’t want to offend someone in a way that is antithetical to your beliefs, what do you do?

Since I’m learning to navigate these new waters of assertiveness, I’ll ask you–

What would you have done?

Happy Positivity Day!

Today is Friday the 13th, a day some people truly dread. For others, these unlucky Fridays provide a whimsical excuse for all that goes wrong. April was the most recent time a Friday fell on the thirteenth. When I shared some thoughts about it, I received a comment by this writer suggesting that every Friday the 13th should be considered “simple life day.” I loved the idea.

But I’ve changed my mind.

Today, I declare that Friday the 13th henceforth will be known as “Positivity Day.”

There. It’s official, at least, in my world.

I have good reason to choose this new designation. One month ago, on an unlucky Wednesday, a family member called to say she was diagnosed with a brain tumor. It was too early to reveal her identity, but now I’ll tell you that it was Mary Beth, my only sister, my confidante, my beautiful, talented, caring, spirited, chronic illness warrior partner.

It was the second time a brain tumor crashed into my world. The first time, it was Matthew, my 11-year old son, who was no longer my “Little Einstein, or my “gazelle,” and we couldn’t figure out why until a brain scan revealed the problem.

There are so many similarities in Mary Beth’s and Matthew’s stories, it’s eerie. “Surreal,” my sister and I kept saying on the phone.

My sister’s tumor, a benign meningioma the size of an orange, was removed in a nine hour surgery. Last week, I flew out to spend time with her, and saw first-hand that she is doing amazingly well. Amazing as in, less than a month post-surgery, Mary Beth is feeling and functioning better than at any time in the past five years when her journey of pain and weakness began.

Matthew’s recovery was not so dramatic, but equally amazing. At 32, he manages his independent life better than many older, wiser adults. If you didn’t know what he’s been through, you’d never suspect what he’s been through. My memoir, in progress, tells of my struggle to parent Matthew through his challenges, a struggle that exposed the depth of my personal weaknesses. A perfect life could never have taught me so much.

My own brain still struggles to wrap itself around this recent brain tumor surprise. There are life lessons hiding in it, yet to be discovered. With time, I’ll find them and work them into my writing. I have to get back to work on my memoir manuscript. It has a new chapter. Or perhaps a sequel, as my sister suggested.

Today, I’m going to find positivity in everything. Already, the day is exploding with examples: the sky is blue, the sun bright, the AC ready for the afternoon’s humidity. My Rose of Sharon shrubs have popped with pink and purple flowers, the white balls of blooms on my hydrangea are bigger than my head. My coffee was perfect this morning, and I’m sitting in my PJs tapping away in my quiet, cool dining room. Matthew will be stopping by this weekend to visit, and Mary Beth texted this morning to say she is full of joy.

It’s working! Positivity reigns!

 

If you find positivity in an unusual place today, or any day, please share it with me! You just might nudge another reader (or me) toward the same discovery.  

 

 

 

 

The anomaly of my story.

photo of head bust print artwork
Photo by meo on Pexels.com

I almost missed it—National Brian Injury Awareness month, recognized in March.

Maybe it wasn’t on my radar because I don’t talk much about my son’s brain injury; I talk of the brain tumor that caused it. They are intertwined in my story, the tumor in and the injury to his brain.

Not much of my story falls neatly into predetermined categories. Our whole rumble with a brain tumor, diagnosed when Matthew was 11, was an anomaly; it was never black and white, always shades of grey, like brain matter. Before and after his diagnosis, Matthew’s condition was a square peg surrounded by round holes.

  • His symptoms were not consistent with a brain tumor. He had no headaches or seizures, for example.
  • He was so smart that even when his cognitive skills declined between third and sixth grade, he maintained Bs and Cs, contributing to the delay in his diagnosis.
  • His tumor was low-grade and benign, but destructive.
  • I don’t say my son had a brain tumor, I say my son has a brain tumor since it was and is still there, clinging to his brainstem, inoperable.
  • Yet I talk of surgery. The brain tumor itself didn’t cause the brain injury; it was hydrocephalus—fluid trapped in his brain by the location of the tumor—that caused the damage. The hydrocephalus was relieved through brain surgery, drip by drip over years and years
  • A brain tumor isn’t technically a TBI—Traumatic Brain Injury, usually caused by assault or accident. You’ve probably heard of TBIs in stories of football players and wounded warriors. A brain tumor is an Acquired Brain Injury—ACI. Ever hear of that? Neither had we, and it was hard finding the appropriate resources for recovery. We didn’t fit in anywhere.

And, the most important anomaly, the one that makes my story one of hope rather than one of despair:

Matthew’s recovery didn’t stop after five years, as we were told to expect. It didn’t stop after ten or even twenty years. It continues today, amazing him and us as he advances and thrives in life. It’s the only anomaly that really matters.

Sometimes being the square peg is a blessing; I wouldn’t miss that for the world.

Last year, I shared this story about when Matthew was carted away for surgery:

“I’ve been in those shoes – watching as your child is carted away to be cut into.”  

I wrote that recently in response to a fellow writer’s blog post about her son’s surgery.

In my case, the carting and cutting happened when my son Matthew was 11.  It was after three years of increasingly odd behaviors and unsettling personality changes that left him, well, not Matthew.

Three years of doubting my gut and listening to others who knew him less than me.  Three years of fighting my instincts, my husband, and my family.  Three years of wrong doctors and wrong diagnoses.  Finally fighting them, too.

Then, in one moment, clear as black and white on a grainy MRI image – the right diagnosis.  Validating and devastating.

Brain tumor.

The day they carted away my child to cut into his brain, the moment Matthew was out of sight, I fell apart.  It wasn’t entirely the brain tumor or even the cutting that made me crumple.  In fact, we were told he would “bounce back.”  It wasn’t a “serious” tumor, we were told.  Although the bean-sized growth was inoperable, clinging to Matthew’s brain stem, the havoc it had wreaked could be fixed.  We were told.

I crumpled into a hot mess of tears because the three years finally caught up to me.  I cried for all that Matthew had endured, all that I had endured, and because we did endure.  I cried with relief that he would bounce back.  I pictured Matthew running once again like a gazelle, as he did before, when he was still the old Matthew.

I cried so hard I couldn’t see.  There was nowhere in the hospital to go for privacy.  My husband Michael walked me around with my face in my hands, as I tried not to gasp and squeak like I do when I’m in ugly cry mode.  We found an alcove under the stairs in the main lobby where I could try to cry myself out, but we couldn’t stay there long.  We had to get back to the waiting room so they could find us when Matthew was done.

In the waiting room, adorned with colorful paintings and cushy chairs, my blubbering stopped, but not the tears running down my face.  Looking around, I saw that no one cried but me.   How do they do it, I wondered? Someone here’s gotta be facing a more serious operation then Matthew’s.   How can they not be crying?  Parents sat around playing cards, most of them in pairs or small groups – probably grandparents there for moral support.  Some folks even laughed.  But only I cried.  In fact, in the entire Boston Children’s Hospital chapter of our lives, I never saw anyone cry there.  I still don’t understand.

To Michael’s relief, I finally stopped my deluge of tears.  We were able to pretend to read and do a crossword puzzle.  Hours later, a nurse came out to tell us that Matthew’s surgery was successful, and shortly after, we were by his side.  My precious child, so fragile, so brave, the four inch bandage on his shaved head the only evidence that he had been carted away and cut into.

That day was November 3, 1997.  That day, hope broke through the persistent cloud cover, attempting to dissipate it tear-droplet by tear-droplet.  But it would be another year before we realized the true import of the day.   As it turned out, that day was just the eye of the storm.

 

March is National Brain Injury Awareness month.  For information, go to www.biausa.org.