Sunday, August 30, 2009

Marty Speaks

I try in this blog to talk a lot about Marty, what she thinks, how she is doing, what her perspective is. At times I will try as I find the files to let her speak for herself. This little ditty comes from 2003 as she is starting a new career.

Bio Sketch -- Marty Kinard, Ed.D.

Once upon a time (1954) in a land far away (Dalhart in the Panhandle of
Texas) a child was born to two peasants who toiled in the fields from dawn
to dusk to feed their family. (Ok, they weren't peasants, but Texas
agriculture does involve toiling dawn to dusk.) The peasants looked at this,
their second child, and said "we shall call her Marty, for this means 'mouth'
in our ancestor's tongue." Marty grew strong and healthy and, living out the
destiny of her name, found both pleasure and talent in all things "oral."
While growing up, music and singing were passions, as was debate, and lengthy
conversations with friends. Given a bit of an adventuresome nature, Marty
learned to "talk her way" out of many interesting jams. While challenging,
the peasants found their child to be a source of humor and delight.

At 17, Marty left the family land and headed South to Texas Tech in Lubbock.
Continuing the oral focus, she majored in Speech Pathology -- and received
both Bachelors and a Masters degrees during the mid 1970s. During this time
she met a frog named Larry --- one kiss later (another oral miracle!), her
prince appeared and the two were married in 1976. The prince began an
"electrifying" career with Texas Power and Light. While Marty was "shocked"
by the number of moves required by the prince's career, she "charged" ahead
and followed him to four different regions of the land (Paris Tx, Muenster
Tx, Hillsboro Tx and Waco Tx). During this waltz across Texas, Marty
continued to work as a speech and language therapist.

In 1979, a male child was born to Marty and the prince (the child, Matt, is
now 23, a professional student who is currently a Teaching Assistant while
working on a master's degree in Mathematics at Texas Tech, Lubbock). They
looked at this child with favor and said "we shall call him Matt, which in
our ancestor's tongue means 'grow up, get a job, and support yourself.'"
Three years later, a female child was born (now 20 - Erin, a sophomore at the
University of Texas in Austin). Marty and the prince looked on her with
favor and said "we shall call her Erin, which in our ancestor's tongue means
'you have enough shoes, don't roll your eyes and watch the tone of your
voice.'" Both children thrived and have been great sources of pride for
Marty and her prince.

While working part time as a speech therapist and then as a college
instructor, Marty spent the majority of her time from 1979-1988 as a stay at
home mom to preschoolers, Matt and Erin. Alas, when the youngest child
reached the age of attending full time school -- Marty was faced with the
need to redefine how she spent a large portion of her time. (Woops, there
goes the ticket to the soaps, diet cola, and twinkies all day!) In a dream
three possible paths presented themselves as visions of the future. Marty
could get a full time job as a speech therapist (a path that looked rather
dull at the time). She could have another child (why push your luck here?),
or she could go back to school (duh,,, although not too lucrative, this was
certainly the most interesting of the three options). In that Marty was
living in Hillsboro Texas at this time, the nearest major university was
Baylor -- 30 miles to the South of Hillsboro in Waco Texas. Once again, the
legacy of her name prevailed, and Marty managed to talk her way into a full
scholarship from Baylor to pursue a doctorate in educational psychology -- a
fortuitous decision in that the family moved to Waco in 1990. The pursuit of
the doctorate in Educational Psychology ended successfully in 1993, as
attested to by the "Dissertation Circles" -- (those dark half moons under the

With degree in hand, kids ensconced in school, and husband thriving in an electric world -- Marty began a full time career in the field of
medical faculty development -- the mysterious appeal of which is that no one
really knows what it means when you say you do faculty development in medical
education. The flip side of the mystery is that the job market for this focus
is pretty limited -- oh, say about 5 positions in the great state of Texas --
who is proud to cast all of its votes for the next president of the United
States.... (whoops, got off track there -- a few loose associations cropping
up here!)

Essentially, for 12 years Marty taught physicians how to be effective faculty
members in their respective medical schools or residency programs. In this
role -- Marty directed a nationally recognized year long fellowship program
which selected 7 physicians per year -- and transformed them from competent
medical providers to competent educators of future medical providers.
Marty's area of specialty was teaching effective one-on-one teaching skills. This is captured by the circuitous notion of coaching coaches about coaching.
In this area, Marty individually coached about 200 physicians as they worked
teaching medical students and residents in clinical settings.

In May of 2002 -- Marty left the 12 year stint in medical faculty
development, and began to look for a way to reinvent herself professionally.
Having successfully coached many physicians, working with deep pathology
seemed like old hat -- and Marty decided what she really wanted was a way to
work with people's potential. A short time later, a series of seemingly
random events landed her in a workshop on coaching. A couple of dollars later
-- she was spending time on the phone with a group of fellow

(----There will be a paragraph inserted here in a couple of years ---- )

As a successful coach -- Marty looked on her life with favor -- she said
"ah... this is good -- I have a group of new friends and colleagues, I am
doing something I love that has enormous flexibility, that provides a sense
of connectedness and satisfaction, and that produces reasonable financial
gain. I can now go live happily ever after."

And she did ..............


Saturday, August 29, 2009

My Momma Taught Me Better

Caution -- Political Commentary Ahead

Today I went to my first and probably only town hall type meeting. I went to hear my Congressman, Chet Edwards, dance his way around the various and sundry crazies, like me, who seem to be attracted to this kind of circus.

I wore my little white shirt as my Organizing for America buddies requested and upon entering the convention center I was presented my very own, Heath Care Reform Now, sticker, which apparently made me the enemy of several hundred attendees. What had once been smiles and nods in my direction as I walked into the building were now grimaces and turned up noses. I don't know what I did.

I went to this little shindig with the idea of providing Chet with some cover for his apparently leftist ideas of Medicare and Medicaid. I've never felt part of the far left until I walked into this room. I don't think I changed any of my positions, I think it was the room and my 1000 new buddies in that room. It's pretty easy to be to the left when everyone else is so far to the right there's no room left.

This little meeting lasted about two hours. It was a great place to people watch; lots of red, white and blue clothes, people with funny hats, people with funny shirts and people who generally took themselves way too serious. There were way too many frowns.

I have known very conservative people all of my life, after all I'm a life long Texan. I admire many of these people. They are often hard working, loving, caring and kind people who just want to be left alone to enjoy their life. The people I know aren't mean spirited, they aren't rude, they aren't obnoxious. I can't figure out where some of these people came from, maybe their Mama just didn't raise them right.

Just for future reference, if you sit at the back of the room and yell stuff out in the middle of the meeting, no one really understands what you are saying and you sound kind of stupid. Just so you know, when you yell at the Congressman , "go home Chet", before the meeting starts, you sound stupid. And just so you know, when you obviously are getting help from Medicare and applaud when someone says let's get rid of it, well, let's just say you appear disengenuous, and maybe a little stupid. It's never smart to cut off your nose to spite your face.

I don't think all of these people are ignorant, I really don't. I know there are really strong feelings about this health care stuff. I know many really believe that ACORN is going to get special insurance rates and that everyone is going to have to share sheets in a hospital bed. I have strong feelings about this stuff too, but when you act so dumb I don't want to share anything with you, much less my hospital bed.

I would say to all we just need to listen more to our Mom, but I swear, the lady next to me was some ones Mother and she should have known better.

Tuesday, August 25, 2009

The Soup

We spent this last weekend congratulating my bride for making it to 55 years while starring at my daughter-in-law who is not quite 30 years old but will soon bring into this world another member of my family. Larry - Bob is his name in case I haven't mentioned it. I realize I am not the first person to watch as their children expand the family but I have to say it's way cool. We be propagtin' the species.

Marty had a good time at her celebration, though I think the magnitude and chaos are a bit much for her. She never was one much for crowds. We managed to go to WestFest one time and she said never again. It was just too much stimulation for someone who always tried to take in and understand everything all at the same time. She has always enjoyed visiting with people and talking, just not everyone at the same time. Regardless, she enjoyed the party, she enjoyed seeing family and good friends and enjoyed singing Happy Birthday to "me". Her Dad's birthday was also on August 23rd and every year, before he passed, they would get on the phone and sing Happy Birthday to "us" just as loud as they could. Marty also enjoyed and spoke highly of Sherry's new rendition of Happy Birthday, kudos to the very cool preacher's wife.

Marty's last sputum culture was -- hold your breath and don't read ahead -- clear again. Good snot for Marty, hip, hip, hurrah. Isn't it amazing what one will celebrate? We have been closely monitoring her white blood count, and though it's a tiny bit elevated Marty seems to be infection free, again. This will be, if you are counting, and I do and I am counting -- 25 days without any antibiotic. We haven't been clear this long since February of 2008 -- over a year. We're shooting for a month. So, you know the drill -- obviously everyone did it last time -- 1,2, 3 -- knock on wood.

Speaking of my daughter-in-law, Sarah, the one that's pregnant and carrying my grandson, Larry-Bob. She is doing quite well. Her wit and her frankness remind me so much of Marty. She has read books, planned well and will be well prepared for my grandson, though she may not be completely prepared for the doting GrandPaPa.

Sarah's mind, in many ways, works just like Marty's did. (Sarah, this is the highest of complements). She states the obvious in ways that are both entertaining and enlightening. I really enjoy reading her status updates on Facebook. Facebook status updates would have been a great forum for Marty, though she may have struggled a bit with the required brevity. Sarah and Matt are both great at these short, simple words of insight.

The other day Sarah posted, "if your pregnant in August, don't eat soup", which I really loved. I've already quoted her several times, with her permission, and I don't know if everyone gets it like I do. Maybe it's because through Sarah I hear Marty saying -- "it's hard enough, don't make it harder." Maybe it's because through Sarah's words I hear Marty saying in a quirky funny way, "don't avoid all of the rough parts (pregnant in August), just avoid those things that don't add value and make you hotter (the soup)". Regardless, I loved it. Sarah and Matt are going to be wonderful parents.

As this whole part of our journey continues to unfold, it really is the simple stuff, the occasional reminders, the remembering , the words or events that prod a memory that provoke the strongest reactions in me. Sometimes I don't even realize that it's happening. It's only later that I can really see why something catches my eye or touches me. And no, I don't think it's dwelling on what was; I believe it's celebrating and enjoying moment today because I know the past. It's good to have people around who know Marty's history, who can help me remember and who know what she was and who on occasion shine a light on what she was. I think it makes Marty proud.

Wednesday, August 19, 2009

Some Truths

Truth -- Marty will celebrate her 55th birthday on August 23rd. I don't know if any of us really thought we would be doing that. Three years ago it certainly didn't seem very likely, but here we are. God willing we will go to the lake house tomorrow and kids, family and friends will come and celebrate this minor miracle. A couple of statistics for you left brain folks out there. I can't remember where I found these stats so they may be a bit overblown but --- (I'm known for flaunting exaggerated facts) -- 50% of people who suffer from a ruptured aneurysm in the brain do not make it to the hospital and of those who do -- only 50% make it home. Marty beat the odds both times.

Truth -- Marty was always, or at least gave the outward appearance of a pretty tough lady. That fortitude, that toughness has served her well. She has had some of the most basic parts of life pulled from her. She has endured countless indignities. She has been as sick as one can be and not die. And, she's still dealing with life in the best way she can. She has lost the part of her that she most prized, her intellect and ability to communicate, and she has never, not one time complained. I know she gets sad. I know she understands what she has lost, but she still looks for ways to laugh and she has this amazing acceptance of her life. It's pretty amazing.

Truth -- They tell you in therapy that part of a stroke survivor's potential rests in the hands of their family and friends. Marty is really lucky in this. I have been able to stay home and care for her,and I've turned into a dandy little caregiver. Our children understand the meaning of family and they have been amazingly faithful and amazingly accepting of their Mother's new normal. My parents and my family have been incredibly loyal and faithful to Marty. They call, and they call to check on Marty. They come down, they come down to touch and see Marty. It really does make a difference.

Truth -- Marty has had wonderful medical care. In the last four years she has been in five hospitals, three rehab programs, and a sub-acute care center. She has had five surgeries and I can't count the number of doctors, nurses, therapists and nursing assistants that have cared for her. All but two were great. I wish everyone could see how talented and dedicated these people are. Trust me on this, care delivery can be great with the right people and we have had a lot of the right people. But, health care does need to be reformed. The cost, the complexity and the importance make change imperative. Obama is at least trying to make a positive difference. Oops, sorry, I lapsed into bleeding heart mode.

Truth -- Marty was no saint, I know that. Marty had one of those personalities you either loved or hated, but you never forgot. She left an indelible impression on a lot of people. Marty still does. Her quite strength, her resolve, her obvious love, and her perseverance still mark the people who know her and who get to know her. Over the last four years she has met and had an impact on a bunch of people. One thing that hasn't changed -- people who get to know Marty don't forget her.

Truth -- When I thinkg about it, knowing what Marty was before the stroke and seeing her today makes me sad. I know what she has lost. But, I love Marty and I am amazed everyday at her resilience and her capacity to live through each storm. We have lived through several bad weather days, we will live through more, but that's why God invented umbrellas.

Sunday, August 16, 2009

Holiday Anniversaries

When Marty and I came home after stroke number two I was strongly encouraged by my kids, my family, my friends and my doctor to go see a shrink. Now why in the world would anyone think I needed therapy? I'm bright, I'm strong, I'm...., well I'm me, perfectly sane, perfectly adjusted; and I was perfectly going nuts with anxiety and other stuff.

I heeded the advise. It was good advise and I got to talk a lot with a good listener. She tried a couple of different approaches, but mostly she just let me talk and synthesize all that had happened, and she listened a lot and sympathized even more.

I talked a lot about the events themselves and how the night Marty had her second stroke had just really stayed with me. The first stroke was a typical "the worst headache ever" and the actual event, the ruptured aneurysm, really wasn't the traumatic part of that stroke. The surgery and the aftermath of the damage, now that's a whole other deal.

Now the second stroke, that was a real event. January 3, 2006, we were celebrating our 30th anniversary as we had become accustomed, doing nothing. Word of advise -- if you get married right around about 1/2 dozen birthdays, Christmas and New Years -- you get pretty tired of celebrating, so we had quit really doing a big celebration, besides we had just returned from our first long trip post stroke one. We were partying hard by eating supper while watching Everyone Loves Raymond. Isn't that how you spent your 30th wedding anniversary?

We had just finished eating and Marty had gone very quite. I looked at her and she was slumped precariously to her left. The left side of her face had gone slack and she was drooling just a bit and she looked completely and totally helpless and afraid. Her left side was completely paralyzed and she couldn't really make a coherent sentence. My heart started to beat so hard against my chest I could feel my pulse in my head, I knew immediately what had happened and called 911. The rest, as they say, is history.

I still see that whole scene in my head from time to time. It's why I watch Marty so closely, it's why I ask her if she is all right every time she shifts, moans, or in anyway acts differently. It drives her nuts, it would drive me nuts to have someone hover like that, I can't help it. There are just certain movements, certain sounds that create this tremendous sense of anxiety in me, like it's all happening again. The therapist said it's kind of like post traumatic stress, only it isn't the same thing.

I know it's not the same thing. I haven't been shot at or bombed or beat up or threatened, but the feelings of anxiety that still sort of wash over me are as real as when it happened January 3, 2006. I don't know if this feeling will every subside, it hasn't yet. I still jump, my heart still races, I still start sweating when I see the body language of the stroke, even though it's just the body language.

The therapist says just knowing the stimuli helps. Marty would say talking about it helps, and I have talked about it with her and with others. Time also tends to assuage the intensity of the feelings, it dampens the heart palpitations. I wish I didn't get the adrenal rush, I wish all of this never happened. Unfortunately, I do and it did.

Probably the only real lesson for all is don't get married close to a holiday, it makes the anniversary kind of anti-climactic and you end up watching trashy sit-coms on TV for the celebration. By the way, I still can't watch Everybody Loves Raymond, and it's really kind of funny.

Friday, August 14, 2009

Stuff and More Stuff

Marty has been off antibiotics for two weeks. This is wonderful. She appears to be infection free and we haven't seen great and wise -- in about two weeks. I'm sure they really miss seeing us. But just to be safe, let's all take a pause, find some wood and knock three times, together now, 1,2,3 go. Thank you. Now if Marty gets sick, and you didn't knock ........

We did go see Marty's Pulmonologist on Wednesday, a wonderful Doctor named Mayee Rosario-Reglero. She is young, attentive, bold, aggressive and extremely knowledgeable, a great combination for any doctor dealing with the multiple complications Marty represents. Marty is what is called a complicated case, there's just a lot of stuff happening, a lot of balls in the air at the same time. It really takes people who know her, know her history, and know the patterns of her illness. Medical continuity is incredibly important. So we have Great and Wise the older and Great and Wise the younger working with us. It's a comfort.

We also went to Providence Hospital for a modified barium swallow study. This is where Marty sits in a chair in front of a fluoroscope and swallows barium coated bananas and graham crackers, yumm. This is all done to check her swallow reflex to make sure she is not aspirating any food or drink which in turn causes respiratory havoc and infection. I never knew what a big deal swallowing was and how strokes affected that reflex. There's a whole cottage industry of thickening and swallowing aids. We really take the whole swallowing process for granted. Actually we take a lot of things for granted, like walking, talking, coughing... lots of really fun stuff.

Yesterday we went to the movies to see Julia and Julie or Julie and Julia, a very nice and enjoyable movie. I'm starting to think all of this is turning me into a real girl but I liked this movie. Just to prove my manhood I'm thinking we will go and see GI Joe next.

Movies are a lot of fun though you when you are wheelchair bound you have to sit too friggin close. There are two first run theaters in Waco and the one we were in yesterday puts you up really close to a really big screen so you are constantly having to move your head to keep up with the action. With a dialogue intensive movie like J & J, it's okay, but when you watch stuff like Transformers it's just a big blur.

Marty likes going to the movies. She likes the stimulation, she likes the popcorn and she likes the Diet Coke. I have also discovered she likes watching baseball on TV. Who knew. She really follows the balls and strikes and outs and even occasionally offers a bit of commentary. Very cool. Once again, it's the little things, the little moments of normalcy -- or at least the new normal that are the best.

Monday, August 10, 2009

A Logical End

The current news often guides my conversations with Marty. During the elections, we talked a lot of politics. If the Olympics are big, they dominate, football certainly is something we discuss. We talk about who died, who got married, all the kind of stuff we are inundated with on a day-to-day basis in this era of 24 hour cable news.

Health care and health care reform is certainly a pretty consistent topic of conversation we have. Marty watches the news and follows along with what's happening a lot better than one might think and we try and stay topical in our discussions. Of late, there has been an excess of hyperbole and outright prevarication regarding pending health care reform legislation, in particular  the "kill granny" portion of the bill just out of committee. The hyperbole states that all senior citizens would have to sit through "end of life" counseling every five years; that the government would actually encourage older folks to just go away and die. Of course the reality of the language in the bill is that Medicare would now pay for this essential counseling so physicians and members of a persons family would actually know what a person wants at the end of life. Quite a difference.

This is a conversation I have already had with Marty. This is a conversation I have already had with our Minister, Jimmie Johnson. This is a conversation I have already had with our kids. If you haven't had this conversation with your loved ones, do it, save them some wear and tear so they know how you feel about prolonging your life, let them know whether hanging on to the last bitter end is what you want or what they think you want. It's really not that hard, especially if it's still all really theoretical.

For Marty and I this talk is based more in reality than theory. There have been more than one occasion when people have looked at me and asked, "do you know how she would want to handle this"? "Do you know what Marty's wishes are"? Yeah, I think I do, today. But, that's why I continue to ask what her wishes are.

I always start the conversation with, "Now Marty, I'm not talking about putting you down today, but what do you want me to do if you get a lot sicker?" She always looks at me to make sure I'm really not going to "put her down" today and generally says the same thing, "if I get worse, let me go". She is really pretty clear about it. Again, it's all pretty easy when you are having the theoretical discussion, when it's reality, regardless of what someone else has said, you have to make some decisions that essentially suck big time.

I asked Marty one time if she was afraid of dying. Like many things she paused for a couple of minutes before answering. I asked her again to make sure she was still focused on my question. Marty said no, she wasn't afraid of dying, she said it's just another place and way to be and she was really kind of curious to see the next step. After listening to her, I'm not afraid anymore either. There are a lot worse things than dying. (Does this all sound like a really bad song).

The reality of dealing with her death was really crystallized one afternoon when Marty was in ICU at Providence not long after her second stroke. Jimmie happened to be with me that day. We were all queued up with other visitors to enter the ICU for visiting time but they didn't open the door at the regular time. We waited and waited until they finally met all of us at the door. The nurse met Jimmie and I and she immediately said they were having trouble with Marty's blood pressure, it was very low and they had been trying to stabilize her.

When Jimmie and I got to her room they had her feet elevated and they were pouring fluids in Marty to try and elevate her blood pressure. As I recall it was something like 85/49, really too, too low, or as my good friend Dr. Lauren would say, "swimming around the drain". Marty was pale and barely able to wake. I remember getting my face close to her saying, "don't you dare leave me now, don't you dare." There was a pause, recognition, and Marty said, "I'm not going anywhere". It was surreal, it was like it wasn't really happening, it was like I was watching some lame-ass TV medical show, but I wasn't. I was the one they were asking, "what are her wishes".

All of this is to say, I think I know what Marty wants. I think I know how I will want to handle the inevitable. The question remains will I be able to do what Marty wants and not what I feel, which is to hang on tight and tell her not to go anywhere right now. If Marty doesn't bury me first I think I will be able to do what she wants mostly because I know she is not afraid of the logical ending.

Wednesday, August 5, 2009

At Random

Random, sort of mundane thoughts from August:

My oldest son and his wife, the mother of Larry Bob, our grandson, have been married for six years now. They come from a long line of long marriages -- my parents over 50 years, Marty's parents over 50 years, Marty and I over 30 years, Sarah's parents over 30 years -- in this area we are all blessed and apparently very stubborn. A complete unwillingness to fail in a relationship is mandatory for a long marriage.

Marty is doing okay. We have now gone over three weeks with clean snot, what a joy, really, clean sputum is a big deal for us. We went to check in with the Great and Wise this week and he was pleased. We have been trying to take Marty off steroids so she can get ready for the winter Olympics and we are gradually reducing that dose. Steroids are good things but they do depress the immunity system and they do keep you from participating in the down hill events. We are doing everything we can to keep Marty's snot clean by checking her meds, reducing exposure to sick folks and practicing super hygiene. We may start a movement -- Clean Snot for Marty -- everyone please cough in unison.

We are still waiting to get some blood test results to check for any other unknown infection. It's always very difficult to know if there are underlying illnesses with Marty. Two weeks ago she had a slightly elevated white count (indicates infection) but that could have been due to exacerbated asthma. Who knows, that's what great and wise surmised though. We should know tomorrow if we need to start Marty on more antibiotics. I hope not.

If all goes well we are planning on having my family down to the lake house to celebrate my Father's 81st birthday. He is the youngest 81 I know. He and I are going to get up early Saturday and go fishing for hybrids with a guide. If we can get Lyle (my daughter Erin's significant other) to roll out of bed he's going to go. My kids took me over Father's day and we had an absolute blast.

Last, Marty went on Medicare about a year ago. I have to tell you, we did this because we had no choice and we did it with a certain amount of skepticism and trepidation. Because Marty was initially signing up we were able to also secure a MediGap policy, which is a smaller policy to cover what Medicare doesn't. Summary, it's been great to this point. Medicare has been better in every way than our private insurance. I can report though that the prescription donut hole is real and it really catches you by surprise. I don't know how most afford it. Anyway, I'm sure not everyone has this experience. I still dread getting the explanation of benefits from Medicare and I worry that some issue will occur. To date, it hasn't, so kudos to government run health for the first year.