Person staring out to sea and sky with quote "Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. -- Marianne Williamson

Survivor 2.0

Due to my brain injury, I am best first thing in the morning, because as the minutes pass each day, I tend to lose my energy and my ability to think clearly.

I decided to post to my  blog more often after the “Sister Giant” conference, put on by  Marianne Williamson, in February.
In the Samuel L. Jackson movie “Coach Carter,” one of his young players delivers the quote as a speech, and you can watch the video of it  here from MovieClips.com on YouTube.

This is the quote that has led me to reinvent myself as Survivor 2.0.

Fortunately,  I am now considered a “brain injury survivor.”

After finding a survivors support group, three years after my diagnosis, through the Brain Injury Association of Maryland, I have a new family and a new tribe. I used to have a work family, but now I can no longer work.

In my new tribe, none of us are quite “right,” but we share a new appreciation for life that comes from losing basic abilities like being able to walk, talk and take care of ourselves independently.

We are an adaptable bunch, learning how to cope with whatever challenges a brain injury sends our way. This path is not for the faint of heart, but for survivors who refuse to give up.

One of my favorite things is learning something new every day. I remember a young colleague at The Washington Post, my employer of 32 years,  who shared her favorite opening remark  to a new acquaintance was: “What’s something new you’ve learned lately?” She often said that it was a much better conversation starter then the usual “What do you do for a living?”

Now that my full-time job is trying to get a little better each day,  I ve found that question  a much better way to break the ice.

Because as Henry Ford said, ” “Anyone who stops learning is old, whether at 20 or 80. Anyone who keeps learning stays young. The greatest thing in life is to keep your mind young.”

So don’t be fooled by the white hair. I’m only 3, since that’s how many years it’s been since my diagnosis and the start of my recovery.

I hope you will join me as I follow wherever this road leads me and share any words of encouragement or struggle in the comments section below.

An attitude of gratitude

Each new day is an entry on my daily gratitude list.

When you click on the information on my diagnosis on the National Institute of Neurological Disorders and Stroke (NINDS) website, it reads, in part:

“In general, PML has a mortality rate of 30-50 percent in the first few months following diagnosis but depends on the severity of the underlying disease and treatment received. Those who survive PML can be left with severe neurological disabilities.”

When I was living through those first few months after my diagnosis and read that, I cried my eyes out. Since then, I have had three “stable” yearly MRIs, which means that each and every day, I continue to beat those odds. I’ve also welcomed two new “grandwonders,” as I like to call them.

So, every morning, before I get out of bed, I write down five things I’m grateful for.

The most common entry, as you may expect, are my sons and their families, pictured above during Christmas 2016.

Another entry is usually a book or something I’ve read that has given me insight or motivation.

Here are several of my favorites:

You Don’t Look Sick!  Living Well with Invisible Chronic Illness by Joy H. Selak & Steven S. Overman, M.D.

The Brain’s Way of Healing: Remarkable Discoveries and Recoveries from the Frontiers of Neuroplasticity by Nathan Doidge, M.D.

Stronger After Stroke: Your Roadmap to Recovery  by Peter G. Levine.

The Ghost in My Brain: How a Concussion Stole My Life and How the New Science of Brain Plasticity Helped Me Get it Back  by Clark Elliott, (Note to survivors: I suggest skipping to Part 3 where he starts talking about the solution. Parts I & II focus more on his post-concussion problems)

And, my caregiver is always near the top of my list. Caregivers, you are angels with skin, in my humble opinion (IMHO).

What are you grateful for? What tools help you stay positive? Please share your ideas and suggestions below. We’re all in this together and I know I need all the support I can get.

 

 

 

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If You Can Read This, Thank Your Brain

Before my illness (B.I.), I often moaned and groaned about how little time I had to read. I always wanted to get a T-shirt that had the Frank Zappa quote, “So many books, so little time,” on it. If only I could have all that time for myself, I thought, I would spend it reading.

After finally getting a correct diagnosis, heading to rehab, and realizing that now I had the time, but not the memory, to follow a lengthy story, it felt like I was losing one of my favorite pastimes.

So I turned to books that had short chapters and discovered “Until I Say Goodbye: My Year of Living With Joy,” by Susan Spencer-Wendel.  Here was a woman, dying of ALS, who lived every day she had left by creating memories with her loved ones, typing a memoir on her cell phone, as she lost control of her body, limb by limb.

And I thought I had problems???

After becoming a survivor of PML,  a feat that is nothing short of miraculous, NIH researchers tell me, my attitude of gratitude became a daily ritual.

So I kept on keeping on, and little by little, over the next 30 months,  I learned some strategies  to regain my favorite pastime. I now highlight each character’s name in my e-reader, so if I forget who they are, I can go back to the previous mentions and refresh my memory. Thank God for technology! I’ve also become a fan of audiobooks.

So during Brain Injury Awareness Month, I am grateful for my survival, and continue to pursue any professional treatment or therapy that will help me get as close to my B.I. self as I can.

I’ll never be the same, but this experience has made me so much more aware of what a gift each day is.

When I was first misdiagnosed as a stroke survivor, I did what every avid reader does: I looked for books on the subject.

So often we brain injury survivors focus on what we can no longer do, rather than on what we can do.

If you are able to read this blog, thank your brain. You may not be able to [fill in the blank] yet, but you can still read (or listen to it being read  to you) and understand this post.

Click here to find some more books that I’ve found helpful.

 

Frustration wordcloud

Lighten Up, Kid!

You know the warnings on some prescriptions that say: “Do not take this medication while operating heavy equipment.”

I would like to have the following warning sticker for those of us trying to recover from a brain injury:

Mature female student looking confused in class

Copyright Monkey Business — Fotolia.com

“HALT: If you are Hungry, Angry. Lonely or Tired!”

I admit that, because a brain injury survivor, I am normally angry, lonely or tired (except when I’m sleeping).

I have never worked so hard in my life, trying to get better …but, when I’m being realistic, I accept that it’s a process, not a destination.

Yesterday, at visual therapy, I felt like such a failure.

I just couldn’t get the exercises right.

Granted, I had probably pushed myself too hard that morning and the appointment was at 2 p.m. That’s way too close to my self-imposed limitation of 4 p.m. for any activities outside my home.

My friends and family remind me that when I’m frustrated it is MY expectations of myself that are frustrating me.

I would never be so hard on anyone else, and especially not on a fellow brain injury survivor.

But in my mind, if I was able to do something once before, I should be able to check it off the recovery list.

I have lost count of how often doctors, therapist and my support group members have told me: In brain injury, consistency is elusive, at best, and that pushing myself is self-defeating.

Trying to do too much, which has always  part of my ADD personality,  is no longer an option for me.

Lighten up, kid!

Thanks, Mom

When I was growing up in the early 1960s in Washington, D.C., it was nearly impossible to find a Mother’s Day card for my working mother.
MANUAL TYPEWRITER NEXT TO SEPIA PHOTOGRAPH OF WOMAN

FOTOLIA

The cards all seemed to be written for moms who did not work outside the home; but my mother didn’t have a choice whether to work or not.   At 43, she became a widow with five children, ranging in age from 12 to 3 (I was the youngest). And, as my sister said in her eulogy, our mother was no saint.

 

When my father died suddenly from a heart attack, like far too many in this world then and now, she self-medicated her depression with alcohol.  In 1957, AA was just 18 years old and women a rarity in the rooms. But now we live in a world with antidepressants and 12-step programs of recovery for any addiction or obsession, from eating to work.

After my brain injury, I remembered something my brother once said to me, “No matter how bad things are, I just think about how our mother woke up the day after Daddy died, with five kids,  no savings and a Grade 4 government job; life will never be that hard for any of us.” And he was right.
After this slow-motion brain injury gradually sent me from healthy to wheelchair-bound in five months, I realized that my mother had modeled a kind of strength that I had never really appreciated when she was alive.
As a child, I had compared her to housewives on TV, like Donna Reed and June Cleaver. They were total fantasy. 
My Mom, on the other hand, went to work every day and sent us through parochial schools and then we paid our way (mostly) through state college. She was determined that we would graduate from college, and 4 out of 5 of us did just that; my oldest sibling chose to work full-time after high school graduation.
No TV mom could hold a candle to this stubborn first generation Irish-American.
So once I beat the odds and survived two rare diseases, I was determined to get my life back and enjoy each day of it as much as possible.
I have set and achieved many small goals from being able to stand, then walk, and then being able to stay home alone safely. 
But the changes are so gradual, it often takes the reaction of a medical professional who hasn’t seen me for months to make me realize how far I’ve come.

So when they say my progress is amazing, I reply, “Thanks. My mom instilled a great work ethic in me  …  and I have never worked so hard in my life.”

Thanks, Mom.

 

About me

Hi, I’m Suzanne…

I’m an editor, writer, mother and grandmother. In the fall of 2013, I began to suffer stroke-like symptoms.

After months of misdiagnoses (you can read the whole story here) I was diagnosed with ICL and PML and could begin my road to recovery.

This blog is for anyone who has survived a brain injury,  and for their loved ones and caregivers. I hope it might help anyone who is struggling to keep a positive outlook when things look their bleakest.

From Survival to a New Normal

Today is Brain Injury Awareness Day, so it seems like an appropriate day to officially launch my blog, ournewnormal.support.

After I was diagnosed with my brain injury in December 2013, I heard a radio program detailing how many advances had been made in neurology in the last 25 years. MRI technology brought neurology into  a “golden age” with more discoveries than had been made in the 200 years before its invention.

One of the most exciting discoveries was neuroplasticity, the brain’s ability to rewire itself after it’s been damaged, to make new neural pathways after the injury–to detour around it, basically–to allow the brain-injured person to regain some ability to overcome the deficit.

Take it from me–this isn’t easy; and progress seems so slow and incremental.

I’m still in therapy three years after my diagnosis,  and I remain on the lookout for any treatment that might hold some promise for any improvement. (I’ll let you know if my current  course  of acupuncture helps.)

Through visual therapy, neurofeedback, CIT ( constraint-induced therapy) and electrical stimulation to improve muscle function due to disuse or damaged pathways, these newer therapies give me hope that the future is much brighter today for survivors like us.

New technology has advanced to the point that with smartphones and  speech-to-text software, I can write this blog despite my left hand’s incalcitrance.

So that’s why I feel it’s a great time to have a brain injury; I wouldn’t have had much of a chance of recovery without all these advances.

Tell me what therapies have helped you in the comments below. We all need to support one another.