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 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.

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.