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.