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.





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 —

“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!