Posts by st_ournewnormal

Hi, I’m Suzanne… I may be disabled, unable to return to work, but I hope I can still be of service to others. I had always been blessed with good health until the fall of 2013, when I began to have stroke-like symptoms. After months of misdiagnoses (you can read the whole story here) I was diagnosed with ICL (idiopathic CD4 lymphocytopenia) and PML (progressive multifocal leukoencephalopathy) and began to trudge my road to recovery.. This blog is for all who have survived a brain injury of any type as well as their loved ones, caregivers, or those trying to adapt to a "new normal" after brain injury. hope it might help anyone with TBI, MS or Parkinson's or any other brain injury because although your will never be the same, there is always hope of improvement. I hope you'll join me on my journey.
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.

Thanks, Big Sister

Yesterday was Mother’s Day.

And there are a lot of people out in the world who may not have physically given birth to a child or even cared for one on a full-time basis, but who make a defining difference in the lives of others during their childhood, or even in their adulthood.

Last year, I wrote a post about my mom, who did the best she could under the circumstances, after becoming a widow with five children at the age of 44 in 1957 (not exactly the best time to be a woman in the workforce). With Mom at work from 9 to 5, Patty was the one who arranged for me to learn typing in summer school, helped me get my first job, etc. etc.

When I talked to Patty on Mother’s Day and wished her a Happy Mother’s Day, she said, “I’m nobody’s mother” and laughed.

I replied that she not only helped to rear her two younger siblings, not to mention a beautiful, talented stepdaughter, but also the thousands of adolescent boys at Gonzaga College High School in Washington, D.C., where she has been the librarian for many years.

In mid-December, 2013,  Dr. Zurab Nadareishvili, the head of stroke at Suburban Hospital, did the last test to try to find the cause of my diagnosed “stroke” and  it, too, was negative, like all the others had been. Dr. Nadareishvili, who I will always be grateful to, admitted he didn’t know what’s wrong, but would call Neurology at Johns Hopkins Hospital in Baltimore and arrange for an inpatient admission, where they could do a more complete workup.

Patty drove me to Baltimore, and waited and entertained me during the hours before I was admitted.

But that was just a very small part of what she had done to try to find the answer to my perplexing illness. Ever since my deterioration began escalating in October, she called any contact she had who she thought might help us understand what was happening to me. (And my sister knows a lot of people, believe me.)

Five days after admission, I left Johns Hopkins with the correct diagnosis,finally, after five months of incorrect ones.  I was transferred back to National Rehabilitation Hospital  about a mile up North Capitol Street from where my sister works. She  came by every day, brought me salads, food, and my favorite drink, an Arnold Palmer (black tea mixed with lemonade).

If that’s not the definition of a mom, I don’t know what is.

My gratitude and love for her is boundless.

Thanks, big sister.

 

 

 

Book Worth Reading: ‘Stronger After Stroke’

Although it turned out that I hadn’t had a stroke, I still found many things in this book that I could relate to, especially a chapter about finding a purpose in your life despite any disabilities you may have.

So the day after the story about my case was published as the “Medical Mystery” in The Washington Post, I was riding home after a long, exhausting day at Johns Hopkins outpatient rehabilitation therapy, I remembered the chapter from “Stronger After Stroke” by Peter G. Levine  on finding a new purpose in your life. I realized how many of us brain injury survivors are isolated in our homes, no longer able to live independently.

That day, I had met several other brain injury patients while waiting between appointments. Several of them were in their 20s, with injuries sustained in car accidents, who were still having issues and were isolated at home, while their friends were at college or work. I just came across  a Facebook group for the younger crowd Peter mentioned in a post on his blog. It’s called Young Stroke Survivors Global Network.

My brain injury didn’t happen until I was 59. It was a lot easier for me to accept at that age; I had already had a career, two beautiful sons, and even grandchildren.

I remembered the chapter from “Stronger After Stroke” on finding a new purpose in your life. I realized how many of us brain injury survivors are isolated in our homes, no longer able to live independently. But what if it had happened when I was 20? My life, as I knew it, would had been just getting started.

Thus the idea of a blog, eventually christened ournewnormal.support, seemed the best way to reach other brain injury survivors and their caregivers.

How has your life’s purpose changed since your injury or diagnosis? How are you coping? If you can offer any suggestions to aid in our recovery, or the well-being of our caregivers, please share them in the Comments section below. I would also be very grateful for any leads on hopeful or inspiring people’s stories I can share.

We may be limited in mobility, but we still have talents  and can make a difference to others who are struggling, be they survivors or caregivers.

This is my attempt to be of service to my new “tribe.”

I hope you will join me on this daily journey, as we trudge the road to happy destiny.

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.

 

Anniversaries of Illness and Recovery

Today marks three years since I was released from National Rehabilitation Hospital on Jan.11, 2014 after being transferred there for nearly a month of therapy from Johns Hopkins Hospital, which is where I finally got a correct diagnosis of PML and ICL.

Anniversaries of losses are always difficult for me.

In the last few months, I have been fighting depression after realizing that I am no longer capable of handling my own finances. To be honest, even before my brain injury, I was not all that good at it. But paying my own bills gave me some sense of having control over my life.

I have since come to the conclusion that I can no longer keep everything straight. Of course it took me months of overdraft fees, late fees and other financial mistakes before I would admit it.

That was the last shred of my illusion of independence that I finally had to give up.

My caregiver has described me as ” fiercely independent” and, believe me, it wasn’t meant as a compliment. It wasn’t meant as an insult, either. It just made it more difficult for my caregiver to help me.

But after I’ve worked so hard for three years to accept a “new normal,” it was very difficult to admit that some things that were never my strengths to begin with, like handling finances, could not “come back” because I never had them in the first place.

If I thought giving up work was hard, this one really tested my self-image.

One of the things I’ve really struggled with in writing this blog is how to be honest about my situation without being hopeless. Because hope is essential to recovery.

In my brain injury support group, I am so grateful for the honesty of my fellow family members; it is reassuring to realize I’m not alone in these struggles. However, I have not been totally honest with them.

I am extremely tired of fighting with insurance companies to be able to continue the therapies, both traditional and alternative, that  I need to in order to keep the gains I’ve made these past three years. So I just decided to pay for it myself, and ended up in debt.

If you had told me when I was discharged back in 2014, that three years later, I would still be struggling to regain my short-term memory, the use of my hand and my speech, I would not have believed you.

But that is the reality. Brain injuries are not like broken bones, they don’t heal “good as new.”My belief that hard work and determination is all I needed to “get my life back” has changed to hard work, determination, and my entire disability check.

As I look back over the past year, I can rejoice in the birth of my fourth grandwonder, but I am also humbled because his parents are hesitant to leave him in my care without a “normal” person to watch me while I watch him. I certainly don’t blame them, but it is an indication of how far I still have to go on this journey. (The fact that here is in the 90th percentile for weight doesn’t help, since I can’t really handle the weight with my weak arm.

Please write in the comments below if you have any suggestions for mourning your losses, while still staying hopeful.

I could really use your help.

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!