Parkinson's Day with My Doctor and Health Union

Yesterday was Parkinson’s day for me. Well, every day is Parkinson’s Day, and while this is Parkinson’s Month, an entire month where I get feted, but not given presents, ice cream cake, or ceremonial ear pulls, this was a different kind of Parkinson’s day since it began with going to the doctor’s office for a 10AM 4-month checkup.

My doctor is a good guy. He gets it, and I’ve been seeing him since September 27, 2016, which was the day that got this whole ball of neurological wax going. The point of going is to find out where I am on the UPDRS (Universal Parkinson’s Diagnostic Rating Scale). This allows the doc to adjust medications and other treatments.

At my worst, I was mid-30s (just a Parkie baby, though experienced with enough symptoms to know Parkinson's sucks). At my best, I didn’t have Parkinson’s, which was up until 2011, though it seemed to always be lurking beneath the surface, ready to explode long before the first tremors and urinary changes happened (always feeling the need to go and not having a “strong” stream).

Now, now I have Parkinson's and it's the new normal.

The last time I went to the doctor's office, it was the beginning of winter. I was at a 16. Wednesday, I was at a 20. After the winter, the doctor felt this was good. I had more of a tremor in my right hand than left hand, which was odd since I began on the left (left hand > left foot > through the head > right hand > right foot). Shaking is just what Parkinson’s does. I guess you could say, “I shake; therefore, I am Parkinson's.”

I guess that makes my wife my Princess Leia!

I’ve reached a point where, though I can still use utensils and shave, my hands pretty much shake constantly. I let them. I can stop my tremors by tightening up my arms, but since my arms from fingertips to fingertips, across the shoulder, is in permanent action figure pose of rigidity, I choose to leave my body relaxed while I can.

The biggest happiness for my doctor was being this far into the game without levodopa. Granted, I have a super spider web pattern on my legs (livedo reticularis - that's my catwalk friendly legs) from the Amantadine (a “harmless,” but “U-G-L-Y” side effect of said medication), but I’ll wear that with the pride of a lack of humility (or being too old to care about what people think if it keeps me going).

From there, I drove to Philadelphia to meet the good folks at Health Union, who were interviewing me for a podcast. A few weeks ago, I had been suggested as a candidate, and I immediately jumped at the chance. I had never met them, so I was super jazzed. It was a moment where my words of educating and advocating were going to be given a 30-minute platform to speak to people, so why not?!

HEALTH UNION'S SITE - MANY GREAT CAUSES

PARKINSONSDISEASE.NET

Upon arrival, I met Emily Downward (pictured at the top right), who is handling the project of interviewing many of their advocates, who write and speak out on behalf of 22 different conditions. The office is on Chestnut Street (smack dab in the middle of Center City and surrounded by banners of Phillies players), and the area is bustling with traffic, both foot and driven. 

The office, too, is a hive of energy. Multiple floors house computer cubes, offices, and sofa areas, where a youthful staff write and post content, create art, manage a website, and meet to improve said Internet communications and causes. I’m not sure I knew what to think that it was, but let’s just say that running a website is kind of a big deal, and it's definitely staffed for such.

Emily escorted me to a room, and we discussed life with Parkinson’s, which should be out in June. I’ll just leave you in suspense to the details, but I’m excited about it. How can I not be? Emily runs a great interview, and she’s a great editor, so I’m sure she’ll make sense of my rambling flows. I’m sure she’ll take out the huge lost train of thought in the middle of one question, too, but alas… we all have our moments.

For those who aren’t aware, Parkinson’s train of thought takes your normal train of thought and switches it up kind of like shaking the brain and leaving the person in a pause, now and again. That’s why my doctor always asks me about my memory, which is generally pretty good, I think, though in long running trains of dialogue, it can get tripped up sometimes. Essentially, it’s like the London Underground, where there are 17 lines going at once, so it's inevitable something is going to go amiss.

These lines run all over the city. As with London’s underground. I have the Central Line, which is my main focus. I also have the Northern Line, which is my “Squirrel!” line. It can get diverted up or down by just about anything. I’ve got the music line, which is equivalent to the Piccadilly Line. I've got the Heather Line (AKA the Jubilee Line) and the family line. I’ve got 2 lines of random information that I’d like to know at any single time as well, not to mention the movie and literary quotes line and the random Jeopardy style facts line. I have 2 lines of random memories (good and bad) coming in at one time as well. They don’t all run continuously, but they’re there in much the same way as my places I have to go to line. Then, there’s the line of things that I should be noting down. There’s the voice of reason lines which belong to family, work, and society, and finally, there is the Circle Line, which is a centrally located line that runs around my brain and seems to go nowhere good since it’s my impetus to do something stupid line. Generally, I can avoid it by taking another line, but it’s there waiting just in case I choose to use it.

And yes, it does get some travel.

Adding Parkinson’s to the mix means that sometimes, someone is asleep on the train tracks, so we have to go a different way. Other times, we have work crews in progress since things are being done to make a section better. Sometimes, there’s nobody there to open up a necessary track. Finally, sometimes there’s just stuff getting at my brain, which makes it temporarily unavailable due to actions beyond its control. When things happen, as Parkinson's causes them to, the thoughts inside my head turn to confusion, irritation, anxiety, or simply being rerouted through an unlit tunnel. That’s what it feels like when you can’t get back to point C or point A from where you are around point B.

Let’s just say Emily is good at being patient while rerouting the tracks.

After the interview, I got to meet Kate Leonard (pictured left) and talk about Health Union, Parkinson's, writing, and her newborn son. It was great to meet her, too, and see some of the people who  have brought me on to make the PD DOT NET stuff happen.

We have quite a talented team of advocates that you should check out. They come from all different backgrounds. Many are younger, which for the Young / Early Onset PD crowd is an important thing (since we're rarer), though they write for everyone based on their experiences.

That said, I encourage you to check them out.

I know I'm looking forward to going to Connexion to meet up with them in October (21+22) to experience the power of group advocacy!

Thanks for continuing to support my writing. If you like this, please subscribe to my blog or follow me at my Parkinson's Facebook page  Please feel free to share, too.

Have a great weekend!

New York City Blackout 1977 - UPDATED SEPTEMBER 2018

Originally posted a year ago... minor updates.

            Over Labor Day weekend, my wife and I decided that we would travel from our sleepy little burg in Amish Paradise to head 8 hours north to New Hampshire. Of course, traveling on a Friday means that just under 8 GPS predictable hours is more like over 10 hours in real time. If you don’t live in this part of the country, then you should know that the difference is because of New York City traffic. To describe said congestion and the mass swarms of maniacal drivers in as few words as possible, I would express the term sensory over-stimulation.

            That said, in these states, it’s easy to get symptoms of general anxiety disorder. For me, these moments are uncommon, but they do happen. I tend to avoid situations that they are involved in, New York City traffic and putting up with the failures of self-checkout lines come to mind (I don’t work for the grocery store or Wal-Mart, and they don’t give me a discount to do it myself). I know it sounds like I’m joking regarding self-checkout lines, but last night, my wife chose to do them, so I went to the Red Box (DVD rental system, for my non American friends) while she did since I had no desire to hear the computer voice telling her to re-scan or bag her stuff in a certain way. When the process was over, it wouldn’t accept her credit card. Then it wouldn’t accept mine. Then the manager came, and we still couldn’t make it accept her card, so we had to go to a different register to import the ring-up. Finally, after 10 minutes, it worked, but I was in that, “I’m done with people tonight (except for the wife). I’m going home to unwind.” This is what we did so I could zone out.

            There are a host of symptoms that go with being knocked out of order, so to speak. In a world that feels out of control, According to Parkinson’s Dot Org, “these feelings include butterflies in the stomach and nausea, trouble breathing or swallowing, racing of the heart, sweating and increased tremors.”  Fortunately, I didn't need a barf bag, but I did feel like running out of there pronto.

Whether this feeling is caused by insane NYC traffic or computer voices, this is not something that is fun for me at all. In times like this, I just wanted to be out of the moment, which in the case of driving to New Hampshire seemed to last forever with backed up traffic congestion, but at least it wasn’t as bad as it could be in that I made it through and remained sane because my wife is a good driver.

With all of the sounds of that type of traffic, I think of the word cacophony, which is defined as a mix of sounds going off together and overloading a person’s sense of being. For visuals, I think of a mix of different colors of light blended in with movement on different levels and directions so that it became tough to focus on just one. This includes cars coming and going in all directions on multiple highways above and below where we are driving and other traffic moving around us while passing or slowing down. Mix this with the feeling of the need to provide complete attention to the situation at hand, so I was incredibly happy that I wasn’t driving (smart planning on my behalf, if I don’t say so myself).

Mind you, this wasn’t even driving in central New York (something I will NEVER EVER do again – something that has nothing to do with my PD; instead, it reflects my healthy love of life and sanity). It was just driving into the opposite side of New York City from New Jersey to head up through to Connecticut, Taxachuesetts (as Homer Simpson once referred to it), and then New Hampshire for a White Mountains fun time.

It should be noted that there is a plus to this drive, which is seeing the skyline and the Statue of Liberty lit up beautifully, well as picturesquely neat as a man-made skyline can possibly look (guess that I should reserve the truly expressive adjective for natural wonders, which we can gawk at as long as certain people don’t find their way to downsize or remove protected designation from our public natural places).

It’s also important as well to know that we were heading up at 9PM, so the need to be a part of the “city that never sleeps” means that other people were out and about in large force to take part in the city’s nightlife. In this endless concrete jungle filled with construction and constriction, time doesn’t diminish the traffic, and my wife drove bravely (i.e. only commenting on aggressive butthole drivers to me rather than flipping them off and risking being shot, though it wasn’t easy to do it in that manner). Personally, I wanted to lean out the window and bark like a dog at some of those drivers – something my one uncle was alleged to have done, but frankly, I didn’t want to get shot. Life is a good thing. After all, this is Friday night insanity traffic outside of a big American city and its New Jersey and Connecticut over-spill.

            Yes, I didn’t have to drive that horror road since we were in my wife’s car and she was at the wheel, and I didn’t want the responsibility. However, that didn’t change the fact that while my wife was driving her prized red convertible Mini Cooper (Bradley), I was trying to stabilize my mind by closing my eyes and leaning back to mellow out from the overload I was feeling.

            There are things in my Parkinson’s life that overwhelm me. For instance, I have recently been “word fishing” while dealing with the effects of Artane, which is a medicine that I have been on for tremors. In addition to having to wrack my brain to make it express specific 9^th grade vocabulary words (that I knew the 4^th grade or lower put together expression / definition for), I would also look for Point C in my arc of discussing concepts A-F. I could clearly tell that I had lost or was losing C, and with it, this cognitive shut down scared the poop out of me (family friendly sentiment). Fortunately, in my few weeks on the medicine, I didn’t have any major brain farts. I’m currently off the drug and its whole family since it’s been known to have this effect, so with Amantadine causing livedo reticularis, I am without an anti-tremor med (relying solely on Azilect to make my dopamine production A-OK and Escitalopram to level out my moods – they seem to both work well).

AUTHOR'S NOTE - Back on Amantadine after 2 other medication failures. It's this or the levodopa / carbidopa path

In the end, this cognitive nightmare felt like New York City’s blackout in 1977 complete with the Son of Sam and Reggie Jackson + Billy Martin fighting as fires raged and looting broke out across the city. With the fear of actions with and from North Korea, the partisan divide where people can't see what's right in front of their face, continued legislation issues in my big 3 (the environment, education, and healthcare), and those mega hurricanes that just keep coming and coming, it’s as if there is no stop to the ugliness that could be, and now I am here with my brain going bonkers on its own share of stuff! And let’s not forget another predication of the end of the world and end times hovering over the whole to affect the Hale Bopp types and the Revelations crew who change the details to reflect current events as it goes.

Wondering what the hell was and is going on, I did what most anyone with Parkinson’s would do – look at medicine effects. Many effects were there including cognitive issues, anxiety, and hallucinations. Yep, I think we got our culprit, so I went off the meds thinking about what had happened over the past few weeks.

Yeah, I guess this would explain the “earthquake” I thought we were having one night at 2AM when I woke up to my bed shaking and continued shaking as I went to the bathroom.

   Fortunately, it was all the medicine, and now I’m back to normal. Like a student in Jane Elliott’s classroom in Iowa back in 1968, I had a full-blown experiment with being in another person’s shoes and the shoes that I would someday be shown into. Call it being made a bleeding-heart or just being shown the truth of the world, I was being welcomed to the show in a big and bad way, that as I said before, “scared the shit out of me.”

Of course, there will still be people who talk smack on waking others up to the feelings of what if by putting them in the bodies of those who experience things daily. How dare we let our little conservative snowflakes see anything other than the endlessly beautiful possibility of the world (while leveling endless nonsense at liberal snowflakes)? It's like they're saying that teaching people to empathize with others or preparing for what might be is "liberal claptrap" nonsense (instead of creating an understanding so we can better understand others). And not feeling for others allows them to destroy the healthcare system’s provisions (thank you, John McCain, for stopping this crap) to help those who suffer and will suffer from being given a condition (which as all of us know could happen at any time), and minimize the money insurance companies have to pay for lifelong issues. Better to bankrupt the victim, the spouses, and the extended families than taking care of the village, right?

And then there was the most immediate non-Dan situation in all of this things ending stuff: the death of my Yaris, which was coming quickly as parts slowly gave way. Should I buy a new car? If so, how long should I plan on it lasting? Do I buy a 5 figure used car with 40-60,000 miles or a new car for almost $20,000? Can I get by with 80-100,000 miles on it already for $8000ish? Do I buy another “Macho Dude” (it’s the translation of Yaris) or should I get a Juke for when my wife takes over driving it somewhere down the line? Do I go balls to the wall and get a Jeep? The answer isn’t easy, so I keep driving the car until the day I need to trade it in.

In the meantime, I keep getting used to being a passenger.

            Over the course of my adult life, I have found that I have not done as well at being a passenger, as I should. I get motion sickness to varying degrees (without the barf bag, fortunately). The front is bad, but backseats tend to be a little worse, so generally I would find that when I had a choice, I would go with driving myself.  Nevertheless, I am currently immersing myself to be ready for the time that I won’t be driving at all.

            This is something that I find myself thinking about a lot lately. As I said, my beloved Macho Dude (my blue Yaris) is closing in on 250,000 miles, and it’s slowly dying. Over the summer, I put a lot of stuff into my car, which could have been put into a new car. Had I not been so attached to my car (I’ve had it since 2007 when I bought it new), I might have bought a new one, but as I said, #1) I don’t want to pay for a new one for years and years. #2) I’m hoping to be able to be working for years and years so I can pay it off.

            It’s true that the imminent death of my Yaris has me upset. It’s a part of me like no other car that I drove. I love its gas mileage, its style, its personality, and the fact its distinctly me. Frankly, I don’t want to say goodbye to it, but goodbye is coming. When this compounds with the feeling that a fuse was blown in my head or the power went out, my life just felt like calling out a “timeout.” Unfortunately, Parkinson’s doesn’t allow for that, so yeah.

            Fortunately, I was able to figure out a cause and remedy it. It was mostly easy to get back to my brain being my brain, but now that I am sans tremor meds, I see the shaking again. I see where it's gotten since when I began to hide it in the spring. Thus, I’m adjusting in the moment with a lot of foot shaking in my life. I guess if I play more hip hop, then I can just pass it off as being in the music.

            So now, September and autumn are here, and I’m thinking of how other things diminish through the autumn months and into the frozen world of winter (the leafless cold and darkness of January and February). The leaves on the trees changing colors and falling quickly here in southeastern Pennsylvania say that winter is coming sooner than before. The cold is getting ready to set in (though the days are still relatively warm). Pumpkin everything is appearing in the stores, and I am facing more and more Parkinson’s symptoms, which are also coming faster than I expected. Granted, I dig the muffins and pie, and it’s neat to think about inviting my nieces and nephews around to carve a big ass pumpkin, but really, I’d like to have some time to slide into things and the understanding of where I’m at to discuss it knowledgeably on November 15^th (my next neurological appointment).

            I’ve been doing doctors lately. For instance, I went to an audiologist, who told me my hearing on soft sounds is terrible. I knew this, but yeah. Whether it came from listening to Slayer too much as a kid or the “Brady Bunch” (all the things that we get when we find bradykinesia raging through our lives), I don’t think it matters. Sometimes, people will lose sound, swallowing, smell, taste, and blinking their eyes (to name but a few problems along the way), but no combination is guaranteed. Instead, we deal with what we have and go to the doctors (and dentists) who can help the problem.

In this case, the doc immediately went to BMW level hearing aids (about $4000 after insurance). Uh, no! Not right now? So with that, I think instead about standing close to people or asking them to speak up before I buy a pair that allows me to be able to blue tooth MP3s directly into my head.

            But sound, sound… what do we do about where I’m going (as I listen to Neil Young and Crazy Horse’s Psychedelic Pill – damn, those senior citizens jam so much it’s like they know they’re putting the young whippersnappers to shame as they crash through 20 minute jams and guitar fury)?

            For one, I have noticed lately, that sounds affect me differently. For example, if I am talking one on one to student A (in a sitdown session to edit a paper), I can hear all of the conversations of Students D+E, M+N, S+T, and X+Y+Z on separate tracks at the same time. This tends to be something I’m not exactly happy with since it puts me on a smaller overload, so I find it easier to compensate by going outside the room and giving people in-class work to complete rather than enforce the impossible code of silence while I am speaking. Why create fights we can’t win or upsetting people when the solution can be solved by the self? Frankly, it’s better to find ways to work around it and sit like a cat on a chair, purring at all that is instead of seeing everything as a nail that needs to face the hammer.

The most important thing to know about sound is that unlike certain songs from the late 1960s with their experimental mixing (The Velvet Underground’s “The Gift” comes to mind), I can’t turn these sounds off and only hear the speaking instead of the distorted and fuzzed out instrumentals. I have also found that being in such a high impact environment with all of the qualities described before, plus billboards of static images and electronic changing images, I can easily find myself in a way that says, “Get between some trees” (and yes, we were soon able to do that for 2 full days all through the Presidential Range). This is another reason NYC traffic makes me spazzy.

Trees are generally a safe place, but I’ve had a fair bit going, so it feels like I’m in the need to do more and more of these (though New Hampshire was a welcome respite as is Iceland, which is where my wife and I are going in 2 weeks).

As for narrow escapes and future fears, the key is just to choose to live life and never stop believing that the best times are still to come as we plan out our futures to what we want to do before the lights go out for real.

Jonathan Kozol's Theft of Memory REVISITED SEPTEMBER 2018

Minor updates in September 2018 - see also THIS for more about my Gram.

            A long time ago in a galaxy far, far away, I read a pair of books that knocked my socks off. These books, SavageInequalities and Death at an EarlyAge, both by Jonathan Kozol, reflected the feelings of how children in the inner cities were abandoned to economic inequality and the brutal issues that go with them. It’s easy to process how, even now, reading those books now could make a person feel like he or she is just like I was when I read them in 2000, inhaling them and wanting to change the world by making such a large leap to affect the world.

            And for a fair bit of time, I really and truly considered it until I realized I didn't have what that environment took in the second half of my student teaching with some tough luck 6th graders (though some were really and truly great kids).

            Of course, like anyone compelled to move toward a program that they advocated for, like Teach for America, there is the reality of why that huge endeavor is such a "noble idea" (registered trademark) and, at the same time, an unattainable victory for the vast majority of people who enter into it (though not all – some people are truly able to connect in such a tough environment and we need more people like them and Kozol fighting for others). Such is why Teach for America has a meticulous screening process before depositing well-meaning suburban people into inner city classrooms that present more challenges than a good social justice warrior could possibly figure out a way to battle through.

            Rescuing worker people (i.e. those people teaching) from these conditions just isn’t the end goal of this program (though it is a necessity). Rather, they want to affect as many children as they possibly can. Unfortunately, The Onion’s different realities of this (A and B) are more real for many people who leave the show and get put through this show.

I remember one girl who got disqualified at the second Teach for America interview. She was a strong student that I worked with, a cute, bubbly college gal, and a committed savior of the world (not that there's anything wrong with that). She would have given her all, but they saw something in her. Maybe it a bad interview, but more likely, it was just that she didn’t have a tough disciplinarian bone in her body or they sensed that she couldn’t have handled the failure of so many people despite giving it her all part. Failure sucks, but failure is worse when our own failures lead to other people’s failures or failing to meet subjective value terms of success (after all, not everyone is going to create a situation like Stand and Deliver). Even with 100% effort and a smile on her face, she just didn’t have something in her interview to be allowed to continue into it. I remember that she was heartbroken about this and how I thought that they did her a favor since she needed to grow into the full-fledged adult version of herself in a different way.

Her life was meant for something else. I’m not sure what since we were never close, but still, I’m sure she’s doing something else exceptionally. However, the great endeavor of getting in there and affecting people with education when they never got it before is such a tough battle that represents a bigger challenge than almost anything. To be a role model, everyday teacher, mentor, assistant, helper, or anything like that to include a playground leader type babysitter / daycare center worker is something that seems more attainable and more purposeful for people learning the ropes (and I remember going through my education classes thinking that a lot of elementary education majors would have done better in roles like daycare center worker since they didn't have enough across the curriculum skills to teach English and Math). I say that in a serious way that in no way demeans those jobs since we need great caring and intelligent people to do them, but rather to say those jobs takes teaching reading, math, or science EXCELLENTLY out of the equation and doesn’t fight to get homework turned in while still fighting for these kids’ breakfast and lunch as well as a positive tomorrow for kids who are wrestling with that prison sentence of youth, which faces down gangs, poverty, and anything that could implode in the early levels of Maslow’s food, clothing, shelter, and safety.

            I can’t imagine living like that. I don’t think anyone who didn’t live life like this could envision it, but I say once again that I’m glad that there are people who can do this and do this well enough to make dreams like 90 90 90 schools a hope. When they can give the real and get the results, then they have truly achieved something, even if the number above is too much of a stretch.

I know how in my experiences in 16 years of teaching, when wrestling to have students complete homework and read assignments as well as to deal with attitude, I’ve felt challenged to the extremes of my ability, and that doesn’t even get into prep time, overcoming life issues, redirecting expectations, speeding things up for the fast students, and slowing things down for the slow students while still grading and coming to every show as much of 100% on as I can be. Teaching is tough. It’s not just showing up and processing data. It’s about giving a hoot and having heart. I couldn't imagine doing that in a situation like this, and for those who do, my hat is off in salute to you.

For this, even though I know my calling is never going to be that of Mr. Kozol in the mid 1960s, I find his commitment and efforts to educational advocacy and empowerment are top notch incredible.

Recently, I had been looking at his books for a student of mine who is truly incredible. Said student spent a large chunk of her life giving back in difficult conditions (a decade or so of missionary nursing work in Guatemala), and I though these books would benefit her future. As I was looking for them, I came across Kozol’s latest work The Theft of Memory, which was about his parents’ death and his father’s Alzheimer’s disease. As my grandmother also had Alzheimer’s, I felt compelled to read it seeing as it came from a writer I truly respect.

            When I picked this up, I thought I would think more about my Gram while I read it, but I didn’t. I did think about her peripherally, but Jonathan’s relationship with his father Harry, who he called “Daddy,” reflected on a neurologist who used hermeneutic phenomenology to express the early days of his diagnosis and his need to be diagnosed for a situation he, himself, had treated and that now would come to reflect his final days. To me, that was something very valuable, both for neurological insights and for personal empathy and understanding, which are, as always for Kozol, very strong.

Much of the senior Kozol’s life reflected on his being a doctor, his marriage, his failing body, and how he treated and analyzed Eugene O’Neil (a famous American playwright) and Patty Hearst as well as a murderer named Albert Desalvo. To me, I related more to those sections out of solid interest in the cases as well as the history of them. Much of the talk of Kozol’s mother, also suffering from age-related memory loss, felt like it plodded through save for her revelations of the complications of being married to Harry and their infidelities, which somehow felt like “something that happened” while each of them did what they had to do in order to make their team work.

As that infidelity is not my life, I can't justify or explain it, but it was something that was their normal.

The story traces the arc of diagnosis to death with memories that come from his father’s medical notes. In that time, his father goes from nursing home back to his home through his son’s love and some amazing caregivers being there for him until Harry’s body finally gave out at 102 years.

Here, I did think of my Gram. I had spent many weekends with her until late elementary school. I got to hang out on weekends, play with Star Wars figures, make forts, and be with my Gram, who I don’t really remember talking much, though she was kind and loving consistently. If not for her, I wouldn’t have had near as many Star Wars figures, that’s for sure!

My Gram did her fill-in puzzles all the time. When she was diagnosed, she was still doing them, but when they were looked at to see how much of her comprehension was left, the letters were gibberish and not words. She was still chain smoking. That was something she remembered she did, but eventually, she forgot that, too. Isn't it funny how, sometimes, the worst can do OK things, too?

Eventually, Alzheimer’s patients forget a lot of important, loving things going back through the years, and yeah, these aren't OK.

The last memory of my Gram is Christmas 1990 after the early days of Air Force training. I picked her up at her care facility in my uniform. She didn’t remember me, and it just hurt. I had a lot of hurt at that point in my life after struggling to adjust to the Air Force, but something in that situation put the icing on the cake.

I remember seeing her again in 1992 and 1993, but after that I never saw her before she died in 1994. I was in England at the time, and I couldn't make it home for the funeral. It was just too far and too much for the family to make work since I was in England.

Nevertheless, in reading The Theft of Memory, the end of it (final 3 paragraphs of the very powerful epilogue) put the last 3 decades into perspective.

            “It will soon be seven years since the night I bent down by his bed to press my ear against his chest and listen to his breathing and his life come to the end. But even now, and even after rounding out the story of his sometimes turbulent complexity, as I’ve felt obliged to do in order to keep faith with the reality of who he was, it is the reaffirming memories that crowd out all the rest.

The sense that I was on a journey with my father – seventy-two years is a good big piece of anybody’s life – did not end abruptly on the day I buried him. On cold November nights when I’m in a thoughtful mood or worried about problems with my work or personal missteps I have made, and go out walking by myself along the country roads around my house, I like to imagine that he’s there beside me still, tapping the old cane of his, making his amusing comments on the unpredictable events and unexpected twists and turns in other people’s lives.

Perhaps over the next few years, that sense of the continuing companionship will fade. It probably will. But some part of the legacy my father and good mother gave me will, I know, remain with me even when their voices and their words and the expressions on their faces and the vivid details of their life’s adventure become attenuated in the course of time. Some of the blessings that our parents give us, I need to believe, outlive the death of memory.”

And here is where I knew I learned from her. I was given time to be me. Pictures of her are still in my office. I never knew her as a wife (my grandfather Dan died before my dad was 2). I never thought of her as a single mother, but she was to my dad and his half-brother Bob. She did housekeeping at a nursing home to make ends meet. All in all, she was a tough lady, and for all she did for me, my dad has gone on to do this for my godson.

If this is a review of the book, then the book is 4/5 though I don’t see myself rereading it, though the last chapter was powerful. The stories of nursing home failure and finding meaning with powerful caregivers resonate that there are people who care and make a difference out there.

One of those people is Jonathan Kozol. If you want to see how his father’s memories play out in him, the ones that fought with him, pushed him, and encouraged him, are all on display in the videos of him. Check it out. You’ll be glad you did. Who knows? Maybe you’ll be influenced to make a difference in a tough luck situation and have what it takes to do it.

We definitely need good people who can push through to be great for others in many fields.