The intended and unintended consequences of labeling patients as “good” and “difficult”, from the eyes of a physician turned caretaker.
Although many physicians would have made different choices than I did, the impetus for my decisions lay in a trait of our medical culture. When we call patients and families “good,” or at least spare them the “difficult” label, we are noting and rewarding acquiescence. Too often, this “good” means you agree with me and you don’t bother me and you let me be in charge of what happens and when. Such a definition runs counter to what we know about truly good care as a collaborative process. From the history that so often generates the diagnosis to the treatment that is the basis of care or cure, active participation of patients and families is essential to optimal outcomes.
There will always be patients and families who are considered high maintenance, challenging, or both by health care providers. Among them are a few with evident mental illness, but most are simply trying their best to understand and manage their own or their loved ones’ illness. That we sometimes feel besieged or irritated by these advocates speaks to opportunities for improvement in both medical culture and the health care system. Culturally, we could benefit from a lens shift toward seeing more-vocal patients and families as actively engaged in their health care, presenting new, potentially important information, and expressing unmet care needs. At the systems level, we need to both count (using specially designated sections of the medical record) and reward (through diagnostic and billing codes) the time that providers spend talking to patients and families.
~Dr. Louise Aronson
Normally I would post a sarcastic someecard about turning a year old given that today is my birthday, however today’s post is a bit on the sad side since my 92 year old grandmother Gina passed away this past Thursday. Tomorrow’s regularly scheduled someecard will be post-poned until Tuesday, I promise it will be worth the wait.
Born in 1921, my nonna’s life is one for the history books. She first hand witnessed the tragedies of World War 2 and the Nazi retreat from Italy which claimed the lives of many in the Italian countryside. My mom and uncle were born during the aftermath of a depressed post-war Italy, which unfortunately claimed the life of their oldest brother and my nonna’s eldest son from a land mine that the Germans planted around Italy to stop the progress of Allied forces during the war. Emigrating to the United States and leaving behind the world she knew at nearly 40 years old was tough on my grandmother. I can’t begin to imagine the pain and heartache she must have lived with for the rest of her life, a feeling I’ve only glimpsed through the eyes of my mother on the occasions when we’ve returned to Italy. It’s a sorrow and a longing for a life that could have been but never was, in my opinion, a distinctly Italian feeling of loss for what never existed in the first place. If there’s a positive side, it’s that the experience served to harden her a bit and offered her the promise of a new life in America, one that has been filled with weddings, grandchildren and great grandchildren, good times and grand memories.
Like most Italian families, my grandfather was clearly the king of the castle and the one who wore the pants in the family, yet my nonna clearly picked out the pants – but I’m pretty sure she also ironed them and decided which shirt and shoes my nonno would wear with them. My nonna’s soft exterior and gentleness with her grandchildren often masked a core hardened by life and a tongue that was both quick and sharp. My grandmother was not a woman to be messed with; get her riled up or on her wrong side – and you best watch out. The rules in my grandparents’ house were clear, and spoiled brats wouldn’t be tolerated.
As is probably true of most Italian families, my fondest memories of my grandmother all center around family and food. Nonna Gina’s house was the glue that bonded us with my cousins on my mom’s side. The house was her castle, and her kitchen entirely her domain. When I was very young, my parents both worked, and my nonna and nonno served as daycare. My parents also felt it was important to retain our Italian heritage, and spending time with nonno and nonna was critically important. My sisters and I picked up the occasional Italian phrase from them during those days at their house, and spent a lot of time with them during the summers when school was out. From an early age, my sisters, my cousins and I were brought up on “pane e burro” and “peacock” (raw egg yolks whipped with sugar to which toasted bread is dunked in. I know it sounds gross – but it’s actually delicious, so dont knock it until you try it). In my very biased opinion, her pasta sauce and meatballs rival that of any Italian restaurant. My grandmother’s kitchen was small and her food simple but satisfying. Lasagna, pasta e fagioli, and pasta “stufata” were the staples of my childhood.
When my grandparents emigrated to the United States from Italy, they tried to assimilate my mom and my uncle as much as possible into American traditions. In the spirit of Americanization, my nonna always made a full traditional Thanksgiving dinner complete with turkey, stuffing, mashed potatoes – the whole nine yards. Thanksgiving was almost always celebrated with my grandparents, and the tradition continued even after my nonno passed away from lung cancer. The controlled chaos of those Thanksgiving Thursdays is one of my fondest memories, and the smells emanating from nonna’s kitchen will linger in my memory for the rest of my life. Dessert included many of the American staples like apple, pecan and pumpkin pie, but my nonna always made “cheesecake” on holidays, and Thanksgiving was no exception. Her cheesecake was actually a more light and fluffy lemon-ricotta pie, a recipe my nonna closely guarded. My grandmother did not keep recipe cards, and measurements were always “a pinch of this” or “a little of that”. If you asked her to tell you how much flour or sugar to add, she would say “about a cup” – but my nonna never owned measuring cups or spoons. No matter how hard we try, nonna’s recipes are nearly impossible to recreate.
I will be forever indebted to my grandmother for the care and compassion that she showed for my father, especially while he was sick. The love she showed for a son that wasn’t her own flesh and blood amazes me to this day. During my dad’s last hospitalization, she stood watch in his hospital room with the rest of us, and the pain, sorrow, and anguish on her face when he died and during his funeral highlighted the depth of her love for him.
Throughout her life, my grandmother faced hardship and suffering and continually rose to the occasion, experiences that shaped her into the soft on the outside but tough on the inside woman that she was. She is fondly remembered by her son and daughter, her six grandchildren and her five great grandchildren.
To Nonna Gina, may she rest in peace.
This post is a little late for Mother’s Day but since my mom is flying into town tomorrow in order to watch me graduate with a Masters in Public Health, I figured it was still appropriate.
I am currently baking red velvet cupcakes. Why you ask? Because I’m going to a graduation reception/party Saturday afternoon following the graduation ceremony. And clearly, I have to bring something. I blame my mother.
You see, we all grow up learning little pearls from our parents, but I contend that our mother’s influence on our social graces far exceeds that of our fathers. For example, my mother always said you can’t show up empty handed to a party that you were invited to. Hence I’m baking cupcakes. Could I have made something easier? Sure, but it just so happens that the Boston University colors are red and white. (Don’t judge me. I can feel you judging.)
I don’t think my mother was forced to read Emily Post when she was growing up, but there are many other habits I have because of my mom. For example, I always return the shopping cart (it happens to be one of my biggest pet peeves when people don’t – and yes, my mother’s biggest pet peeve too). I always rinse dishes before they go into the dishwasher. Many of my food and product purchases are from my mom; choosy moms choose JIF and so does this ginger, and Downy is the only acceptable fabric softener.
For better or for worse, she is the voice within my head. And I suspect I’m not alone. What social graces and habits have you picked up from your mothers?
The Children’s Museum in Boston started a new program in August to offer discounts to low income families. Instead of the usual set of discounts and coupons, which the museum found was not achieving the goal of attracting low income families, the museum allows families to get in for $2 after showing their EBT cards. More importantly, the museum actually worked with representatives from Mattapan, Roxbury, and Dorchester to come up with the idea.
According to an article in today’s Boston Globe, “Since the EBT program started five months ago, more than 1,160 visitors — some of whom say they would not have otherwise visited — have used the EBT discount. More than 30 percent of them are from low-income communities in Boston and others live in more affluent Boston neighborhoods and suburbs, according to museum figures.” No money is deducted from the EBT cards themselves; residents still must pay the $2 out of their own pockets.
I, for one, think this a great idea. Feel free to agree or disagree.
In light of all the debate around DADT & marriage equality, the results from the most recent election in Maine, Washington, Maryland, and Minnesota, as well as President Obama’s inauguration speech, I want to leave you all with an excerpt from Bruce Bawer’s book Beyond Queer, which contains a piece from author Andrew Sullivan, former editor of the New Republic. This excerpt appeared in the piece “The Politics of Homosexuality” which he wrote for the New Republic on May 10, 1993.
But the critical measure necessary for full gay equality is something deeper and more emotional perhaps than even the military. It is equal access to marriage. As with the military, this is a question of formal public discrimination. If the military ban deals with the heart of what it is to be a citizen, the marriage ban deals with the core of what it is to be a member of civil society. Marriage is not simple a private contract; it is a social and public recognition of a private commitment. As such, it is the highest public recognition of our personal integrity. Denying it to gay people is the most public affront possible to their civil equality.
This issue may be the hardest for many heterosexuals to accept. Even those tolerant of homosexuals may find this institution so wedded to the notion of heterosexual commitment that to extend it would be to undo its very essence. And there may be religious reasons for resisting this that require far greater discussion than I can give them here. But civilly and emotionally, the case is compelling. The heterosexuality of marriage is civilly intrinsic only if it understood to be inherently procreative; and that definition has long been abandoned in civil society. In contemporary America, marriage has become a way in which the state recognizes an emotional and economic commitment of two people to each other for life. No law requires children to consummate it. And within that definition, there is no civil way it can logically be denied homosexuals, except as a pure gesture of public disapproval.
In the same way, emotionally, marriage is characterized by a kind of commitment that is rare even among heterosexuals. Extending it to homosexuals need not dilute the special nature of that commitment, unless it is understood that gay people, by their very nature, are incapable of it. History and experience suggest the opposite. It is not necessary to prove that gay people are ore or less able to form long-term relationships than straights for it to be clear that, at least, some are. Giving these people a right to affirm their commitment doesn’t reduce the incentive for heterosexuals to do the same, and even provides a social inventive for lesbians and gay men to adopt socially beneficial relationships.
But for gay people, it would mean far more than simple civil equality. The vast majority of us – gay and straight – are brought up to understand that the apex of emotional life is found in the marital bond. It may not be something we achieve, or even ultimately desire, but its very existence premises the core of our emotional development. It is the architectonic institution that frames our emotional life. The marriages of others are a moment for celebration and self-affirmation; they are the way in which our families and friends reinforce us as human beings. Our parents consider our emotional lives to be more important than our professional ones, because they care about us at our core, not at our periphery. And [therefore] it is not hard to see why the marriage of an offspring is often regarded as the high point of any parent’s life.
I thought the election had completely zapped all of my intellect as well as my wit. I mean, it’s not easy coming up with hilarious tweets about Big Bird on the unemployment line. So I had been relying on Someecards and posts from Marc and Angel to get me through (I know, there was SOME insightful stuff by me in those posts… whatever). But then a friend of mine mentioned that he found a grey hair… down there. And I thought about the fact that my mother is getting older.
No, those are not that related at all; in fact, my mother has never met this friend. Nor is my mother that old. But my friend finding a grey pubic hair made me think about aging, and thinking about aging made me realize that my mom isn’t going to be around forever.
Don’t read that the wrong way – I’m not naive and am not under the illusion that my mother will live forever. I’ve already lost one parent; death is very much a reality to me, but losing my dad was so much of what changed the relationship that I had with my mom – for the better.
My mom and I used to have one of those relationships that is more typical of a mom and daughter. We would get into a fight, I would ultimately apologize shortly thereafter (because naturally it was always my fault – sense the sarcastic tone), and then get into another fight less than a week later. The week before I moved to college my mother and I got into a huge blowout fight – and we were content to not talk to each other for a week aside from the casual snide remark. Needless to say, it was a VERY long car ride from Pittsburgh to Philadelphia to Boston. Oddly enough my dad and I rarely fought, and when we did, by the next day it was as if nothing had happened.
Sometime during my dad’s illness, my mom and I slowly grew together. I’m more than happy to blame her going through menopause for the emotionally rocky road we traveled – but that doesn’t entirely explain it. Perhaps it was going through college and not being home all that much, or maybe it was a maturity factor on my part. Whatever it was, my mom and I now have one of those relationships where she actually confides in me sometimes, especially when it’s about my sisters, and she often asks for my advice. My mom and I still don’t talk much on the phone – a weekly check-in to make sure everything is okay. But even that’s an improvement.
Spending time at home over the holidays only heightened the realization for me that my mom is getting older. Yet in the years since my dad passed away, my mom has also become tougher and stronger. Not only does she continue to take care of her own house and kids (for a few weeks, one of my sisters was living at home with my mom until her wedding in October) but she visits with my grandmother every day and helps out friends when she can. Like so many other moms, she truly is the rock and foundation on which our house is built. The holidays aren’t the holidays if they are not spent at my mom’s. And I cant imagine a day when she won’t be there. Hopefully I won’t have to for a long time.
Each day for the month of December, I’ll be posting one of Marc and Angel’s “30 Things to Stop Doing to Yourself” with a little commentary from yours truly.
18) Stop holding grudges. – Don’t live your life with hate in your heart. You will end up hurting yourself more than the people you hate. Forgiveness is not saying, “What you did to me is okay.” It is saying, “I’m not going to let what you did to me ruin my happiness forever.” Forgiveness is the answer… let go, find peace, liberate yourself! And remember, forgiveness is not just for other people, it’s for you too. If you must, forgive yourself, move on and try to do better next time.
I can’t stress this one enough. Life is WAY too short to hold onto grudges. Doing so may feel good for a short period of time – but you only end up missing out on a lot. This is especially true when family is involved. Not letting go of hate only hurts you more in the long run. And when you sit down and think about it, you might not remember why you were mad in the first place.
First of all – Happy Thanksgiving!
Last year I posted on Thanksgiving about how amazing I thought it was that the American people reserved an entire day for recognizing the valuable role of family and respecting the day to give thanks. And then Target and many other companies decided to encroach on the holiday by opening for Black Friday earlier than ever. Oh well… so much for not commercializing Thanksgiving.
This year, I’m thankful for many things including my wonderful family. I’m also grateful to the amazing group of friends that I have and to the best friends a guy could ask for. I’m thankful for the opportunity to live in a country where I am free to shape my own career and for the men and women who have kept this country safe. I’m thankful for good health.
So it begs the question… what are you thankful for?
I traveled back home to Pittsburgh this weekend to attend the wedding of my sister and her new husband. It was a great celebration and a beautiful ceremony filled with friends and family. Truly, this wedding was the bonding of two great families who have been friends for years (the groom’s parents were the best man and maid of honor in my parent’s wedding and vice-versa) and who’s kids grew up together. And while I might be biased, my sister looked absolutely stunning.
Anyone who has grown up in an immigrant family that speaks a language other than English will probably find this funny. My middle sister is getting married shortly, and in Italian families who live in Western Pennsylvania, there is a tradition to have a “cookie table” at the wedding. Dont be fooled… “cookie table” often means several tables with multiple trays of cookies. When my oldest sister got married, there were about 50 trays of cookies. Many of these are enjoyed at the wedding as dessert with coffee along with the wedding cake; far more cookies are taken home and enjoyed by wedding guests for several days after. For more on this tradition, see this article from the Pittsburgh Post-Gazette.
My mother is about to enter “baking mode” shortly for all the cookies to be made for the wedding (and yes, friends and family also contribute to this tradition). She was going through her recipe box today and found a recipe she didn’t remember. I gave myself a pat on the back for figuring out what it was (and it’s actually a really good poppyseed bundt cake), but the recipe obviously came from my grandmother’s cache and the handwriting was clearly my dad’s. I couldn’t help but laugh while reading it as my father had a funny way of writing the recipe down. You’re on your own for translation from Italian but I think you’ll recognize some of the words…
Girasole3 tazze di farina 1/2 cucchiaino di sale 1 1/2 cucchiaino di baking soda 2 tazze di zucchero 8 onze di Crisco 4 uova 1 barattolo Carnation Evaporated latte 1 jar di papaveri (poppyseed) 1 tazza di noci
Instruzioni: metti gli ingredienti asciutti insieme. Metti uova, Crisco, e gira per due minuti con tutto insieme. Grease la pan and then farina. Bake at 350 per un’ora.
Disclaimer: this is an incredibly hard post for me to write, likely interrupted with moments of tears. If it doesnt entirely make sense, my apologies in advance.
I tend to not talk about my father very much. This is almost certainly in part due to my less than forthcoming nature when discussing my personal feelings. But in fact, when meeting new people or going on a first date, there is always that moment when people ask where I’m from, where I grew up, and if I have brothers/sisters where they happen to live. I find it easier to avoid the issue when people ask; I almost always say my parents live in Pittsburgh and that they used to work in the restaurant industry. Often, the fact they are both from the same town in Italy comes up which is quickly followed by “wait, you’re Italian!?” given my less than stereotypical Italian complexion. I dont usually elaborate or go into much more detail. Thankfully, first encounters dont normally necessitate further discussion into one’s family life. There’s something very American about our superficial discussions of other people’s lives when we first meet them, much like skimming a resume. And in most instances, this suits me just fine.
Until Thursday night, when I slipped and mentioned that my mom still lives in Pittsburgh. My newest acquaintance that evening astutely picked up on this and asked where my dad lives. At which point I cringed and replied, “he’s unfortunately no longer alive”, a response I’ve found puts a damper on any occasion in which this is the answer to any question. There really is no good way of informing someone that one of your parents is no longer living. The other person, appropriately so, then says they are sorry. And then there is an awkward pause usually filled by my saying “it’s not your fault” or “oh no, no worries” because quite honestly, how could they know?
I sometimes wonder if losing a parent is easier when you yourself are older. It is certainly easier to explain someone passing away at an age over 75; it makes sense. I wonder if being only 21 when my father died is partly why his death is still incredibly difficult. In fact, all of us were so young: my sisters, my mom, and my dad included. Parents arent supposed to die when they are in their 50′s. Seems like they have unfinished business in this world. I mean, if life expectancy is in the late 70′s, how could they not have more to accomplish, more to do, more moments to share in and experience to impart?
A friend of mine recently lost her mother to cancer, and she asked me if it ever gets easier. Her pain was fresh and constant, and she longed to know when that would end. At the time I told her yes, that eventually the everyday pain starts to fade away and the days blur together. The tough parts are the unexpected moments that remind you of their absence, and the feelings of hurt and pain boil so effortlessly to the surface again. I told her the story of buying my first car by myself and breaking down on the phone with my mom because I really wished I could talk to my dad in that moment. In those times, it hits you and makes you catch your breath. The waterworks usually come quickly there after.
I never thought that nearly 8 years later, it would still be this hard. I never thought that reading a facebook post about my dad could hurt so much. I never thought I could be this emotional. I’m still surprised at how angry I am that he isnt here, angry at life and angry at God. And while people’s words are often comforting, it doesnt alleviate his absence, and it certainly doesnt make my pain go away. This is why I dont often talk about him. Not because I’m ashamed of him or because I dont care, far from it in fact. Its because I never truly know how I’m going to react in that moment. I’m never sure if my response will be anger or tears.
Someone told me that we only hurt because we care, that our pain is a testament to how much someone meant to us. I think there is some truth to that. There’s truth to the fact that even though he is gone, part of him lives on in my sisters and me.
To steal from my sister’s facebook post, I think this about sums it up: