Gabby and me

Gabby and me

I’ve received suggestions from family that I should blog about the similarities between Gabby Giffords and me.

We both had brain attacks; mine from the inside and hers from the outside

We both had bone flaps removed and replaced to stop the swelling in our brain.   She got a composite replacement; mine was the original. We both conducted our rehab and surgeries at TIRR and Memorial Hermann in Houston, Texas.  We both have spouses as caregivers and caregivers who travel; although her caregiver travels millions of miles further than mine.  We are both too young for this to happen. So concludes the similarities.  Some lessons learned that I would love to share with Gabby and her husband, given the opportunity:

The brain can recover

You can be a fully functional individual again

You will still love the things you loved

Never give up…the harder the work the better it gets

It is a hard (expletive deleted) trip, but it’s worth it

Adaptation

Webster defines adaptation as “the process of adapting:  the state of being adapted; adjustment to environmental conditions”

Adaptation is what I do to lead a productive life and enjoy the things I did pre-stroke.  For example most of my adaptation stems from having to deal in a one-arm world with an immobile left arm (I was a lefty prior to the stroke). So to cook, exercise, read, etc. I need tools that allow me to perform with this limitation.  

For example, try to make a key lime pie with one hand! Just separating four eggs with only a functioning non-dominate hand is daunting.  After having a stroke, you slowly realize that some of the things you’ve done before, you can no longer do. You have two choices: 1) Don’t do it. 2) Find the tools you need to make it work.

One night while visiting my sister in Las Vegas, I had a bout of insomnia and found myself watching infomercials. At 4 a.m. one caught my eye, the Egg Yolky egg separation tool. I realized that this tool could be a breakthrough in allowing me to cook again and solve my key lime pie problem!

Meet Egg Yolky.

Click here for more details on Egg Yolky

I have learned to use many other devices to help me overcome a one-armed world. More posts will be forthcoming to share my secrets.

My husband, Bob,  has started a blog in connection with this one:  Caregiver Bobby.  His blog can be found on the left sidebar titled “Bob Bacon’s Caregiver Survival Guide” and covers practical tips for caregivers.

Vanity

Sometimes I dwell on my life before the stroke – July 1957 – May 16, 2006.  I truly try not to because I find it counterproductive and who wants to attend a pity party. When I do allow my thoughts to go there it is generally because I come across something I used to be able to do and can no longer such as bicycle, travel, run, and drive. What got me thinking about my pre-stroke life this time was our friends Paige and Fred Fletcher who are in Taos for a conference.  Fred sent me a text reminding me of a run we did together in Taos years ago.  It was a particularly good run because I was able to keep up with Fred and his wife, Paige and they are real distance runners. To that end, I thought I would post a pre-stroke picture.  On our way to Taos…

Running, allowed me to eat and drink what I wanted and kept me in the work game. I loved exercise and I loved looking fit.

So I enjoyed attention to my appearance. Not for vanity but more like a sport. Fashion, fun shoes, cool and outlandish outfits…I still worry about my appearance, though it’s a different worry now. I need to stand straighter, hold my drooping left shoulder higher and pull up my jeans on the left side. Now it’s about noticing the left side and fashion that works with a stroke.  My husband wishes I would apply the same energy to my physical therapy.  But looking good in spite of injury is important. It is important to my therapy. I mean, what’s the point in working out if you can’t “kick-up” some cool fashion along with it? I wish someone would invent clothes that worked for my left drooping shoulder and shoes that fit over my AFO (ankle/foot orthotic).  Currently I am limited to wearing white socks and tennis shoes every day!  I feel like the poster child for the glamour magazine’s “fashion don’t” section.

We have a mantra:  Let’s revel in the things we can do and not in what we can’t.

In The Beginning

Think of John Ritter, then you think of me and why I’m writing this blog.  He died from an aortic dissection.  I also had a dissection.  I had one in my brain and survived.  I sometimes wonder why. But I did and had to learn how to deal with life all over again. It takes a tremendous amount of effort to come back, but I have to say it’s worth it.  I am in recovery from a dissection and have been for the last 5 years.  I am writing this blog from the perspective of someone in recovery and will offer practical suggestions for stroke rehabilitation, for both the stroke survivor and their caregiver.

My story is important because it is truthful and inspiring and it offers hope to family, friends, caregivers and medical professionals a that person can have a productive life despite a severe stroke. 

When I had my stroke, a surgeon told my husband to give up, thankfully he refused. How many other families might have had this same experience?  They need to read about the potential for a full life despite the stroke.

This information is topical and timely because there is neither predictability nor a cure for strokes, but a tremendous amount of interest in a medical problem that costs U.S. citizens $43 billion a year.  It is estimated that four out of five American families are impacted by a stroke.  There is a tendency for people in the brain injury community to view us as people who can’t do something.  This couldn’t be more wrong.

I still love all the things I loved before, fashion, exercising, hanging out with the girls, socializing and having a good time. The point is that in spite of the tendency of those around me to marginalize me, I still love these things.  I just have to approach them differently.  This blog will share how to do these things again and provide shortcuts to a productive life.

Every once in a while I surprise myself and do things that I could have done before the stroke.  Today that thing was to fix the toilet.  It would not flush this morning.  I removed the top, jiggled the chain and this caused the tank to start filling with water.  The reason this was significant is after the stroke there are many things I won’t even attempt.  I am trying to adapt this “can-do” attitude. Now granted, the problem that needed fixing was inside my home.  I need to tackle outside issues and get out of my comfort zone.

An anecdote, if you will allow me, is that I sometimes watch reruns of Sex And The City.   I watched one yesterday where Aiden was moving out of Carrie’s apartment, and as he was walking out, he noticed she was trying to fix the toilet.  He offered to help and lifted the lid and said to her “The ballcock needs adjusting.”  She said to him.” Ok, you cannot leave now because we can’t have the last words we say to each other be ballcock.”  I laughed and laughed about this again as I was fixing my toilet.