Today would have been my father’s 72nd birthday.  He died almost 20 years ago, but a lot of who I am and who I want to be come from my time living with him and my time learning how to live without him.

He was a kind, gentle, peaceful man.  He was always searching for God, trying to do his best for his wife and family, and working hard for us.  He worked as a large HVAC unit repair person my whole life.  When he wasn’t doing that, he loved to write and read.  He read about religions, was fascinated by the different Native American cultures and beliefs, and read about quantum physics and molecular science.  Dad didn’t finish high school; he dropped out and left home at approximately 15.  Much of his childhood story remains vague to my family, but we know something wasn’t quite right there.  But he was brilliant.

My earliest memories are of him writing in notebooks on the porch or in the basement.  He wrote through notebooks and notebooks with his thoughts –  on the books he wasreading, quotes he wanted to remember, and his own stories and poetry.  I have some of his writing but I got one particular notebook probably a year ago.  It wasn’t until recently that I opened the notebook again for the first time since I got it from my mom.   This notebook was entitled, “The Dark Book”, scribbled in the top right corner of the cover page.

There are a lot of poems in here.  It is where he drafted my uncle’s (his brother’s) obituary. It is where he wrote poems about me having cancer.  It is where he let himself be consumed by the tragedies of life.  It was hard to read through, knowing that the mourning pouring out of these writings were never really seen by our laid-back everyday dad.

I came to this poem,  and instead of my father, myself, my uncle or anyone else, I thought of the humans I work with.

This empty reality

Heavy embrace

pressing the wings

to the side

unable to unfold

remembering flight

and too

the perils that await

grounded spirits

Now, there is no sunshine to warm this poem up. This *is* from his “dark book”.  But hear me out – there is a lot of grief in being a person who lives different; someone who can’t do what other people can do; someone who can see and ache for goals and dreams that are just like other people their age.  There is a lot of grief in loss of who you were, who you expected to be, who you want to be.  That is thepopulation I work with.   But hold on…

This is a sad poem. It is also truth.  While there are many moments of happiness and hope and success and progress, there are moments to feel this pain.   My father felt this.  And it hurts to know he felt this pain.  But it also reminds me that I felt that pain too, when I lost him.  I see this poem as a gift and it makes me happy because nearly 20 years after my father’s death, he gives me reminders of being human, of remembering the whole picture, of loving all of the rose, even the thorns.  He gifted me his words at this time so that I could see that despite the grief,  we have heavenly creatures, grounded spirits, all around us here on earth.  The strength to smile and move forward piece by piece, the endurance of the people I work with and their strength of soul is one of the most celestial elements of what I get to see and do.

Even in dad’s heartbreaking words, I find peace.  He is no longer in pain, he is no longer suffering and looking for an answer.  I inherited his empathetic demeanor and for that I am constantly humbled and grateful.  Loss is pain.  It is also growth in the midst of adversity. For all of you out there struggling with grief, loss,  and pain – know that the coin can and does flip;  and this, too, is also temporary.

With love, grief, and gratitude…

Robin

It had been a rough week and I was questioning what I was doing with SNR and how I was going to pull off a very lofty set of personal, professional and community goals amidst all the other things going on in my world and the world around me.

All it took for me to turn the ship around was a phone call from someone who needed my help.  I don’t have a God complex (I can’t save you) and I don’t have an overinflated ego (it is appropriately inflated).  I do find purpose and meaning in helping others, but I had the honor of providing  the person on the other end of the call something that they had been struggling with …

Hope.

When the prognosis is poor or uncertain, we crave it.  When we are fighting battles – whether they are medical, societal, emotional, or other, we build with hope.  We seek it when we need to keep going.

Through my own life experiences, I have ridden the rollercoaster of hope.  That one time I thought I was going to die and the doctor said, “If you’re going to have cancer, this is the kind to get…”(Weird way of putting it, but ok.)  The time that the young, naive romantic in me saw a lingering glance of a first love and thought, “Maybe we can make it work.” (We couldn’t).   The time I held my newborn… (twice).  The time when my dad moved his hand in mine when he was in the ICU and I was convinced the neurologist had to be wrong about him being braindead because he moved his hand… (He was 100% right- dad was gone).

Hope isn’t always a gain/lose scenario. In my experience (as noted above), it is more of a rollercoaster with highs and lows.  In dealing with medical disorders, diseases and deficits, I have seen how hopeless a patient/parent of a patient can get.  Practitioners and clinicians are not hope dealers.  It isn’t our fault; we have to be straight forward and give our best clinical impressions along with worst case scenarios. We can’t candy coat it or provide all the possible rights because the odds aren’t ever in our favor.

As practitioners and clinicians, however, we don’t always have to crush diagnostic hope.  To me, diagnostic hope is where the doctor tells you your odds, identifies limitations, provides labels and gives you options.

Over the years, I have heard so many patients be relegated to their disease or disorder through the destruction of diagnostic hope. In reviewing statistics, discussing with experienced clinicians, completing evaluations, going through research etc, we can identify that the odds are stacked against a patient.  But who are we to say they won’t be the one exception to the rule?  Who are we to say we are not going to get anywhere based on first glance, second glance, or even 14th glance?

The great unknown variable in any rehabilitative scenario is the individual.  In order to treat the individual, you have to be able to provide them with some form of hope. You have to give them a goal, you have to provide them with support.  You have to let them know they aren’t crazy, they aren’t alone, and there are ways to keep going.

Maybe we should look at including a component of our professional practice as hope dealers – finding the silver lining and highlighting it with one of those gel highlighters that will NEVER come out if you get it on your clothes.  I am not saying that you should say, “Everything happens for a reason, ” (Don’t.  Ever. Really.  Just don’t say it.  That is not the thing to say to a person in crisis or coming out of crisis. I promise you, as a thoroughly traumatized person myself, I can attest that it can earn you a swift throat punch if said to the wrong person at the wrong time).

Just in that one phone call, I empathized.  I said, “I understand.”  I identified that their concerns and frustrations were valid, and I offered to help in any way I could.  That made all the difference for them. In the time that they have struggled, they haven’t felt heard or fully understood.  They can now look at the situation with a little hope, where before there was desperation and helplessness.

In turn, it gave me hope that in continuing to travel this road, I am on my way to reach the goals I have set for me.  My gift is the type of therapeutic intervention I can provide.  I will use my gift to spread hope along with the tasks, strategies, supports and education I can provide my patients.

In my daily life, I will try to consider the diagnostic hope that hides in every poor standardized score, every indicator of deficit, difficulty or decline.  I will try to use it to be a hope dealer.  I have had many a hope dealer in my life, and I want to be sure to pay it forward to the people I serve.

This post’s element is Hydrogen.  Atomic number 1,  atomic mass 1.00784 u. Lightest element, highly combustible.

In a person’s body, it keeps your cells and joints hydrated.  It allows for the removal of waste and toxins.  It works as an antioxidant, reducing inflammation in your brain.  It is required for the neurotransmitter dopamine, that helps to produce the happiness/reward feeling in the things we do or enjoy.

What we really know, though, in general as humans, is that it joins with oxygen to create water.  H2O. It covers the earth, it makes our bodies, it is the reason we all have overpriced water vessels that can keep our water-based drinks cold for 62.5 hours*!

I have always been a bit of a fish – I love to swim, be in or around water.  As an adult, I enjoy kayaking when it is possible.  As a child, my favorite memories were of going to the YMCA, special trips to the lake or a beach.  It could be that my body needed the input that water provided,  my mind needed the think space that only swimming  could provide, or that my heart and lungs needed the rhythm to keep me steady.

In my last post, I likened oxygen to the people and things that brought me to life.  Hydrogen, on the other hand, can provide great benefit but also immense trouble.  It can flow with the other things that bring meaning and joy, or it can be a literal bomb.

I want the hydrogen in my life to be a part of water- wrapped with the things I love and breathe in, a place for me to exercise my mind and body.

But sometimes it is not.  Sometimes the hydrogen is alone and unstable.  When this is the case, things go the wrong way.  Whether on land or in a pool or toes deep in the ocean, it creates waves.  It moves you.  It takes from you. It pulls you under.

This is what my patients and their families are going through.

There may be deficits or difficulties that are slow and steady and reveal themselves as the child goes through school.  Academics can produce so much pressure at such an early age for kids that by the time you realize something is wrong, they have produced all of the coping strategies to keep from feeling like they aren’t smart enough.

More adults are being diagnosed with different forms of  neurodivergence, leading them to seek assistance after an entire childhood and adolescence with only their own coping mechanisms to support them.

Then there are difficulties unknown – some biological mechanism wreaks havoc on a brain and they have to relearn how to think, talk, move.  Sometimes these things are episodic.  Some are chronic.  Some are fatal.

Finally you have the situations where timing plays a part in a drastic change – a car accident, a fall, a knock to the head that leads to hospitalization and again, relearning all of the skills appropriate for life.

These are the hydrogen bombs.  They hit families hard, radiate out, and strain every aspect of being from their unit.

My job in their lives is to be the calm waters they come to.

Still a component of hydrogen, but a stable one that can take them in, clean them up, and help them heal.  Don’t get it twisted – I am FAR from the second coming; but I am a person who has epic amounts of understanding and compassion and a sense of duty to help where I can.

I have said it before and I will continue to say it time and time again- I learned from Lynne Drazinski, legendary rehab SLP and all-around great human, to look at what we, as professionals in neurological rehab care,  get to do.  It is an honor and a privilege to be a part of my patients’ care.  Every child, adolescent, or adult that I have treated has helped shape me into a better version of me.

I would love to take credit for their successes, but in reality, I was just the water.  They were the ones who got in, worked out, and made it to the other end of the pool.

*62.5 hours is a rough estimate of an imaginary water vessel that I have created in my mind.