Monday, January 10, 2011

January 8, 2011 Tucson, My Home

*My husband and Gabby Giffords a few weeks ago*

It's 3:30 a.m. and I am so restless I am wringing my hands, making fists, letting out the tears I've fought so hard to hold back, until my family fell asleep. While I have kept my whereabouts to myself in the past, many may have figured it out while reading where I had my first couple of brain surgeries, a couple hours from here in Phoenix. So yes, you are right if you figured out I am in Tucson.

It's no surprise then that my emotions right now are a mess from what my community has just gone through. At one of the local supermarkets, a Congresswoman my husband and I have both spoken with on many occasions, my spouse quite recently, Gabrielle Giffords, was shot in the head. Six people are dead, including a 9 year old girl, and at least a dozen others were shot. Christina-Taylor Green, the little girl, is the age of my own two children. Giffords did not give speeches when she did these meetings. She just came to chat with her fellow residents; it was for that reason I have emailed her office over the years to discuss my frustrations and experiences being young, losing my career and so much more after being diagnosed with a neurological disease. I also wrote of the challenges of fighting for Social Security Disability and Medicare after so many failed brain surgeries, and the difficulties I've had a hard time finding doctors willing to care for me because of the rarity of my disorders. She has always been a good sounding board.

Tucson born and raised, Gabby Giffords is classic Tucson. She could be seen riding her horse, or sometimes her motorcycle. A Glock owner like myself, she is an advocate of gun safety and rights. Giffords shows what Tucson has been to me--I had a hard time adjusting to AZ at first, coming from FL--but Tucson, by population certainly a big city, but its residents have somehow found a way to keep its small town feel alive. It's perfectly normal here to have my 9 and 8 year old children in the car, and in the same brief stretch we take to my daughter's karate class it is perfectly normal to see someone riding a horse, another a motorcycle, a big group out for a bicycle ride, and on the way back we spy a coyote or javalina crossing the road. Wherever I go, I see someone I know--whether I like it or not! It took quite some time for me to just say the heck with it and not worry about what I am wearing because of always seeing a neighbor, a child's teacher, or one of my doctors or nurses. I have a service dog, and many store employees around here even know her name, some even keeping treats around for our visits. Things are pretty slow-paced here, no concrete jungle Interstate criss-crossing through, just streets which force a slow journey through town, the same today as it has been for decades.

A few years ago, one of my surgeries went very wrong, and while in the recovery room I had two cardiac arrests 12 hours apart. The second time, I didn't respond as well to CPR and I ended up on a ventilator. After 3 weeks in Neuro ICU and after getting off the vent, I was cleared to begin physical therapy at bedside only. The first time I sat up that's all I did. With their help I soon stood next to the bed holding the walker for support, not for long but it felt like eternity all the same. I was sobbing when it was over, exhausted. Eventually I was moved to the rehab part of the hospital, where I underwent several hours of therapy a day. While the physical pain was tremendous, I found that neuro-cognitive therapy proved much worse than physical. Standing, walking, getting in and out of bed, writing, using the toilet (hey it's harder than you realize), absolutely everything felt like I was a baby just starting out in life. I couldn't get things out like I wanted. The words were wrong when I spoke, so I tried to write it. I saw my hand moving on the paper, making letter after letter, writing nonsense, powerless to change it. I knew what I needed to say and to write but by body and brain couldn't care less. I cried myself to sleep every night in my hospital room, missing my husband and two small children who were a couple hours away; the loneliness, frustration and pain was unbearable.

All the doctors kept reminding me that for each day I was on the ventilator, it would take me at least a month of intense rehab for the body to truly recover. The brain could take longer. People simply do not understand this if they do not experience it themselves, and I frequently encounter the misconception from people expecting me to be fine, not realizing that while brain surgery patients take many many months in rehab just to learn to live again, we also are nearly always left with deficits; in therapy we also work on learning ways to adjust for those deficits, and how to adjust for them, because they become our new "normal."

I have my journal from the extended time in the hospital from this surgery as well as all the other surgeries I've had, numbering 21 at this point. During this most difficult recovery, at first it seemed everything I did was a jumbled up mess. My body was mixed up, my limbs not coordinating with one another, my speech and writing conflicted and confused. Change did take place eventually, slowly, one step at a time time. I don't know when I stopped crying every night but eventually that first night came...and then came a second...strength does return, physically and emotionally.

Those of us here in Tucson, we have suffered a terrible setback, one that has knocked us down physically and into our very being. But change, it takes place over time, slowly. We do not know exactly when we will be strong again, but it does happen, and it leaves us stronger inside than we ever were before.

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