Congresswoman Gabrielle Gifford…”Gabby”

November 17, 2011

Brain Injury Rehab, Health, Home

Although the events preceding Feb 18 this year are pretty much a blur, superseded by the horror in our lives, I do remember the shooting in Arizona.  I remember wondering what the world was coming to…wondering how we had become a world of people, however damaged any individual might be, that any number of us valued human life so little.  Then Mike’s catastrophic illness struck our house and with unwavering, laser beam like focus, my energy and attention were concentrated on Mike’s healing, recovery and rehab so I lost sight of almost everything else.   My focus has remained on Mike’s recovery and has excluded almost every distraction…and it has paid off.  Mike has made tremendous gains.  As I say that, I realize that those of you who don’t see him daily might think that he’s back to his old self and that the past 9 months have rolled away.  Not so.  The tremendous gains are infinitessimal…and we have days of gain and days of regression.  While not 100%  he’s about 1000% beyond the vegetative state that was foretold by the neurology docs back in February.    But back to Gabby.   Which is the title of a new book she and her husband, Commander Mark Kelly have written with the help of a writer.  It chronicles not only her recovery but is quite autobiographical as well. 

On Monday night Mike and I watched Dancing With The Stars.  I watched it before Mike got sick and he laughed at me.  Nothing could compel him to watch it then.  When he was recovering in the hospital we would try to find TV shows that would capture his attention…there were few…and Dancing With The Stars was one. He loved it.  I presumed it was the music and the colors.  He has continued to enjoy it after the hospital and when I recently asked him what it is he likes about it, he tells me the movement.  But anyway.  At the end of the show on Monday they announced the Diane Sawyer special interview with Congresswoman Gifford and they spoke of covering her rehab process.  My little ears perked right up and I hit the record button on the TIVO.

I was keenly interested in watching this.  My interest in the interview was limited…again with laser beam focus…to the certain things (this) inquiring mind needed to know.  I had long ago noted that there was no doubt that as a Congresswoman, Ms. Gifford would be afforded the best medical care available.  I didn’t really envy her that…a girl (or boy) uses all their assets.  Every one.  I lusted after that congressional level medical insurance she had available to her when I had to fight tooth and nail to get Mike into rehab at all…let alone a world class rehab some distance from home etc etc.  I remember wondering out loud to Mike’s case manager or my State Reps legislative assistant, “I bet Congresswoman Gifford’s family didn’t need to launch a full frontal assault on her insurance company to get them to approve admission to neuro rehab!  I wonder if her insurance suggested to her family that a SNF (translated as nursing home) was more than adequate in meeting her needs?  I wonder why my insurance is not held to the same standard her insurance is???  Ours is government service insurance, albeit State Government, by all reckoning it’s good insurance…so why the double standard?”   There were no answers then, but even as I asked those questions I understood they were rhetorical and knew that life wasn’t fair.  (After watching the interview and definitely after reading the book Gabby, I can tell you with absolute certainty,  just as I fought the devil himself every way possible to get Mike the care he needed, there is no doubt in my mind that Commander Kelly and the Gifford’s would have launched the same battle in my situation.  We are kindred spirits…the Congresswoman, her husband, her mother and I.  No limits people.)   But, back to what it was I needed to know from this interview.  Reasoning that she had received the best possible, most leading edge brain injury treatment available, I wanted to see what I could learn, what Mike might not have gotten, that I could incorporate into Mike’s recovery. 

Ultimately, I found out two new, very small, things.  One is that music therapy is extremely useful in language recovery in aphasia patients.  Music resides in multiple locations in the brain where language/communication seems to reside in two small areas a couple centimeters apart in one section of the brain.  Old familiar songs are almost automatic in their recollection of words, and singing them…as well as other songs…can stimulate the language centers and word retrieval to pull information from other parts of the brain and aid in the rewiring process.  (So I’m on a quest for a home Karaoke machine…LOL)  The other thing I learned is something I can’t validate…and Mike’s speech therapist questions…but somewhere I heard or read that Congresswoman wasn’t slurring her words, and her husband was glad, as he had been told that in general when a brain injured patient slurs their words in recovery it doesn’t seem to go away.  Mike does slur his words…and I have been assuming that would correct itself in speech therapy.  Mind you, if it doesn’t, WHO CARES??  But in the event it makes him self conscious, I would like it to be corrected if possible.  Now I wonder if it can be and must conduct some research.  On the monumental list of things to overcome, it is the absolute lowest priority…but it has made it to my punch list and there it will stay.

Ultimately, what I saw in the Sawyer special was that the Congresswoman’s  rehab program itself was no different than what I saw every day for 32 days while Mike was in rehab.  The glaring difference was in the length of rehab.  Congresswoman Gifford was afforded something like 4 months of rehab.  Mike, and the rest of the average joes on the streets, are afforded 30 days IF they can get into rehab in the first place!  In retrospect I’m not sure whether or not I could have taken 4 months of rehab even as I know some extra time would have been helpful.  Mike’s hospitalization before rehab was about 2.5 months in intensive care and acute care.  I was chomping at the bit for him to come home already and resume some kind of normal life!  I had not taken the time to think through that normal was going to be a new normal and it would be several months until our lives could really come close to anything that resembled a more familiar normalcy. 

 Bear in mind, however, I am a woman who knows no limits and will do whatever it takes to make something work.  The night before Mike came home he was still sleeping in a Vail bed (the hospital bed has a nylon mesh tent, or cage, with a ceiling, all around it to prevent the patient from getting up out of bed during the night and getting hurt.  It’s used if the patient is a significant fall risk.)  Only a few days before, his hands were encased in soft restraints…mitts with no thumbs, padded like boxing gloves, intended to prevent him from pulling his trach or feeding tube out, and they remained on any time I was not physically present with him.  Congresswoman Gifford either didn’t attempt to pull her tubes, or, since she had private duty nurses…or so it seems…someone was watching over her at all times to prevent such actions.)   Irrespective of this, I naively thought coming home would be some magic bullet that would make everything better.  I had not anticipated that the sleeplessness and wandering that dictated his hospital nights would carry over at home for months.  And, since he could not be unsupervised for safety reasons, it also meant I would have sleepless nights for months.  After listening to him for weeks asking to go home, I had not anticipated that once he got there, he wouldn’t know that he was home…and would repeatedly ask when we were going home and worse, try to leave to go home.   So, I think, that with something between the 1 month Mike received and the 4 months (or thereabouts) that the Congresswoman received, some of that confusion would have subsided and the transition to home would have been easier on him (certainly on me) if he had been afforded a longer rehab stay. 

Don’t get me wrong, I don’t begrudge the Congresswoman her months of rehab.  A little jealous maybe…but hey…like I said earlier.  You use all your assets and are foolish if you don’t.  Her medical condition from the gunshot could have demanded that she receive in patient medical care in addition to the rehab that Mike did not require…I am not privy to that information and would like to think if that were the case our insurance company would have afforded Mike longer care and not tossed him to the curb.  I worry far more for those people who are in the same boat as Mike or the Congresswoman and have crappy insurance or NO insurance.  Mike’s total in-patient bill clocked in at $1.2 mil in billings….how does the average joe on the street manage that if they have crappy insurance or no insurance?  How does somebody who is not as resourceful as I or the Congresswoman’s family manage to bring a patient home in the state Mike or the Congresswoman was in and manage it?  Heck…how does the average person who is not as pushy and resourceful get their family member INTO rehab when faced with what I was faced with?    What happens to the family whose loved one comes home in the state that Mike or the Congresswoman are in and who cannot retire…or if they are retired, their retirement does not afford them the luxury of staying retired in light of the new, ongoing, huge, medical bills required to sustain life for these folks?  Who cares for the person whose life is in disarray neurologically (or physically) when the family must work to afford medical care and treatments? 

It is a sticking point for me and has been for a long time.  A truly great country is only as great as its people.  I firmly believe the first responsibility of a government is to its own people.  I cannot reconcile (though I understand the need for) foreign aid when we have such economic disarray and imbalance in the classes here in America.  I resent, as a taxpayer, that congresspeople in general are afforded, on my dime, some superior level of medical care that is not afforded to every single citizen in the country.  I further resent that my tax dollars fund stupid government agency research projects that are superfluous and frivolous and intended only to use up budget dollars so that at the end of the budget year they won’t lose the money allocated to them and look at future loss of funding.  And I genuinely and truly resent that my tax dollars are spent funding other countries when there is so much need at home.  If America is the land of opportunity, I would argue that so is every other country.  The opportunity is in the people and their ability or desire to seize the moment.  I don’t think it is up to us to concern ourselves with their governmental inequities.  We are not the patron that we think we are and I argue that we should not be setting ourselves up as such.  Our abilities to be the mightiest nation in the world are diminished by our economic disarray, our corporate greed and the fact that we have turned the industrial revolution on its ear sending (or allowing) all of our manufacturing to leave our shores (due to corporate greed).  There’s an old saying about champagne tastes with beer pocketbooks.  Another about not having a pot to piss in or a window to throw it out of.  Well, America, that’s all of us.  The fact that there is inequity in health care, housing, the fundamental ability of the families of America to provide food, housing, lights and heat for their children, is an egregious disservice that, in my opinion, should dictate a steep reduction in foreign aid as we take care of our own at home a little better and get back on our feet.  That it is couple with an astonishing amount of federal debt is beyond absurd.  Revisiting foreign aid and agency budgets  should be followed closely by a look at health care for every citizen.  Though Obama has tried, I think his health care plan falls far short of hitting the mark and it’s time for all this partisan BS to stop getting in the way of the people of the country and their best interests.  I would personally volunteer to look at government spending and oversee the budget process of the agencies to ensure that the money that is taken in is spent as the taxpayers see fit.  There’s a lot of waste and your average housewife living on $50k a year and under could easily remedy the country’s financial excess.  We do it every day with our own budgets!  

But I’ve gone off on a tangent again…one which I didn’t intend.  Back to Gabby.  I think the book was ok.  Since I had a very focused reason for reading it, the autobiographical parts, particularly Commander Kelly’s, were superfluous and redundant.  But a nice story.  The Congresswoman’s personality, strength, charisma was evident in chapter one so time spent in driving that home in later chapters  was wasted on me.  For others, those for whom that type of indomitable spirit is somewhat foreign, the repetition was probably good.  I was reassured that Mike had received the same fundamental therapies that a Congresswoman receives with differences only in length of time, access to distant experts, money to fund them (oh what I would give to have Mike and me spend time with Dr. Nancy Estabrooks and speech therapists that work in our home instead of dragging across two towns or driving two hours to get to them!).  I was thrilled to see on a very personal level, that there are individuals out there that are like-minded with myself…I’m a bit of an anomaly around here and people are taken aback by me and my determination and drive I think.  But hey!  I was raised by essentially a Navy Seal…I’m told that explains everything!  LOL   I was more thrilled to see in the book that the Congresswoman’s staff has undertaken to lobby for victims of TBI to ensure that they are able to have access to the same level of care that she received.  They are certainly in a position to do so and I suspect we will see a strong advocacy for health care and in particular brain injury health care come out of the Congresswoman when she returns to work.  I did feel compelled to write her staff to thank them for those actions and to ask them not to forget the victims of anoxic brain injury.  I think Congresswoman Gifford would like that and expect no less.  LOL.   

I think we’ll see a lot out of the Congresswoman when she is recovered.  I hope she will stay in politics…our country needs more politicians like her.  She has done a really good job of keeping it real.  Whether or not enough of her language communication skills will return in sufficient time to be able to articulate  and conduct a compelling campaign remains to be seen…as does whether or not she will have the stamina, as brain injury is very fatiguing.  It may not be in the short term…it may be in the longer term that she returns to politics.  I sincerely hope she does though.  Regardless of whether she does or not, this is a woman from whom we will continue to see big things and who will address them to helping her country and its people.  As much as I love politics, I have little use for most politicians.  I take off my hat to Congresswoman Gifford.  Not for her recovery from her injury, for we face similar circumstances through a different catalyst…though I do wish her a full and speedy recovery… for her political views and the person that she is.  Gabby…you go girl!  The sky IS not the limit!

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