New Year’s Updates

After yesterday’s reflections on 2013, I thought it was time for some more pragmatic updates and housekeeping.

I posted this on Facebook but should mention here that IN THE KINGDOM OF THE SICK received a starred review in the December issue of Booklist. It’s an exciting way to start off pre-pub activities.

Want to stay updated on book news and reviews, author events, and related publicity? Make sure you subscribe to this blog using the feed button up top (next to the social media buttons) or enter your e-mail on the right sidebar to receive posts that way. Also, if you’re on Facebook, consider “liking” my Facebook Author Page, where I will post relevant links and updates.

As always, you can find me on Twitter, too.

In addition to book stuff, I have a lot planned for 2013 on this blog, including fresh content, interviews, guest posts, and more, so be sure to stay connected.

On the Helpers

At some point every day, often right after I’ve dropped her off at school and am already missing the steady stream of chatter and questions, I say a short, simple prayer:

Thank you for her. Keep her safe.

I said it Friday as I drove away from my daughter’s school, before, and I said it today after I kissed her goodbye.

I can’t keep her behind closed doors, under my own eyes every second, nor would I want to. I want her to feel confident in her independence, to explore the world, to feel secure in her place in this world. I can’t shield her completely from the bad, the hard, the painful—none of us can. But we can help them remember all the good, and how to look for the good, and how to be a part of the good.

I don’t want this to become political, nor do I want to co-opt the grief from the many victims of Friday’s shooting. So much has already been written and said. Like so many, I shed a lot of tears over the weekend. So many tears were for the innocent, and those they left behind, and many were for the stories of bravery, sacrifice, and love the teachers, staff, and responders all showed.

Many of you have likely seen the FB post about Mister Rogers, and how his mother told him to look for the helpers in the midst of horrible things.

I want my daughter to know there are helpers, and I am incredibly grateful for the caring, compassionate educators who allow her to feel secure and loved everyday.

Church was unusually packed this weekend. I imagine drop-offs were more poignant and protracted at schools all over this morning.

Thank you for them. Keep them safe.

On Traditions

Since my daughter was born, we’ve given even more thought to the kinds of rituals and traditions we want to bring into our lives. Some, like the huge Italian Christmas Eve dinner, the new Christmas ornament that tells a story about the past year, the Advent wreath and calendar, and celebrating a second Christmas with dear relatives who live further away, are traditions from both sides of her family that we are all keeping alive. Some we’ve established more recently: we decorate our tree and have grandparents over to join us; we go to morning Mass on Christmas Day and have brunch, just the three of us; we bake cookies for Santa and read The Grinch Who Stole Christmas on December 23rd.

(As an aside, what are your favorite gluten-free Christmas cookies, with bonus points for simple recipes and prep times? We want something that can stand the test of time and be a regular staple of Christmas Eve….)

Some, we’re weaving in this year, and hope to make them permanent traditions. A friend of ours has her children receive three gifts Christmas morning, to honor the gifts the Wise Men brought baby Jesus, and to focus on reverence and love on Christmas, not an avalanche of presents, and we love this idea. (Getting three gifts can be categorical, too—for example, if my daughter asked for books, she would get more than one, but books would be one of the three gifts.)

We check out new Christmas-themed books from the library each week of Advent, some that are appropriately religious for a two-year-old, and some that are a bit more secular, too. (She asked me the other day what God loves and why, so the wheels are turning.) We’re going to dinner as a family on December 23rd , before we come home and make cookies, just to stop and spend time as our little family unit before all the festivities begin, and hopefully that will be a regular thing, too, especially as she gets older and life gets even more busy and complicated.

Without being totally conscious of it, we’ve been moving toward an ongoing celebration of Christmas and family, rather than just the day itself. There is so much going on right now as we wait for my father’s possible transplant that for all of us, simplicity and quality time are more important than ever. It is an emotional process, watching my father’s physical decline every day, while balancing the sadness and fear with hope and optimism that he will get a transplant and have a successful outcome. The food will be delicious and the kids will all love their presents, but really, it doesn’t matter what we end up eating, wearing, or unwrapping. I just want a few minutes of joy—for my father, for all of us.

What are your hopes for this holiday season? What traditions are your favorites? Are you doing anything new or different this year?

CaringBridge and National Family Caregivers Month: An Interview

As you know from my previous post on family caregiving, it is National Family Caregivers Month, and CaringBridge is helping to spread awareness of the needs of patients and families. I had the chance to ask CaringBridge CEO Sona Mehring a few questions about how CaringBridge supports families in medical crises, and what they are doing this month.

Q. Medical and progress updates are so important, but the simple act of telling one’s story can also be incredibly therapeutic. What makes CaringBridge a unique online space for patients to share their stories?

CaringBridge is truly a “caring social network.” It is free to use. CaringBridge does
not accept advertising and does not sell users’ information. CaringBridge is a
social network providing a social good – with a funding model that allows us to
focus squarely on the people using our service, not on generating profits.

Q. I know CaringBridge Sites that are followed by thousands of people across the
country. What makes these sites such a powerful resource for support and
mobilization?

We literally connect the hearts behind the keyboards. Having a central place to
share news and receive support makes communicating during a health journey
so much easier. Instead of sharing your story over and over, you can create a
blog and post it once for everyone to read. You also have a guestbook full of
messages of love, hope and compassion that you can visit any time of day, any
time you need a boost.

Q. How did CaringBridge SupportPlanner come about? What difference is it
making for patients and families?

This is something our users had been asking for. All of our enhancements are
based on listening to our users and our drive to provide a relevant service.
The SupportPlanner helps patients and families organize helpful tasks such as
bringing meals, rides to the doctor and pet care. When families know those
details are being taken care of, they can focus their energy on what’s really
important, like healing.

Q. I think it’s wonderful that CaringBridge Sites do not include any
advertisements, so the focus is on the patients. How does CaringBridge sustain
this model?

We are a nonprofit funded by donations. Many people who use our service feel
strongly that it needs to be available to others during a health journey so they
give back.

Q. It’s National Family Caregivers Month. How is CaringBridge celebrating those
who devote so much of their lives to caring and advocating for loved ones?

We are helping create awareness of the family caregiver and all the time, energy
and money they spend on caregiving. I also wrote a blog post asking people to share
caregiver tips and advice.

***

Thanks so much, Sona!

 

(Per the disclaimer in this post, CaringBridge is sponsoring this post.)

CaringBridge and National Family Caregivers Month

Did you know November is National Family Caregivers Month? I didn’t, until CaringBridge reached out and let me know about their celebration of family caregivers. This awareness month comes during a time of year when we are particularly reflective and attuned to gratitude and the blessings of family, but if you’ve been following my blog lately, you know why the timing of this is particularly compelling for me:

We’re currently trying to find my father a match for a living donor kidney transplant. The ongoing coordination of this outreach requires a lot of time and energy, and more than that, the emotion of it is intense. This isn’t just a cause or a platform or some hypothetical advocacy—this is my father’s life.

None of us, especially my father, are new to caregiving. For example, just before my daughter was born my mother had a catastrophic health event that has forever changed her life and all our lives, and we’ve all juggled going to doctor appointments, picking up prescriptions, staying overnight, cleaning, cooking, doing errands, coordinating care, and managing the emotions that come with seeing people you love suffer and not being able to change it.

The National Family Caregivers Association writes, “Day in and day out, more than 65 million family caregivers in this country fulfill a vital role on the care team. No one else is in a better position to ensure continuity of care. Family caregivers are the most familiar with their care recipients’ medicine regimen; they are the most knowledgeable about the treatment regimen; and they understand best the dietary and exercise regimen.” It is a privilege, and a huge responsibility.

I write this from the perspective of both a caregiver (at times) as well as a patient, someone who has to rely on my husband and relatives when I am the one in a crisis, when I am in the hospital, or unable to leave the house. It is humbling to need to ask and rely on help, and it is challenging in many other ways to be the one providing care. Family caregivers, especially spouses, handle an incredible amount of stress on top of the everyday realities of work, household obligations, etc.

Typically, you don’t see sponsored posts* here. There are many reasons for that, (perhaps another post on its own?) but this time, the themes are so incredibly relevant and authentic to what I’m talking about on this blog, and the company, CaringBridge, is a nonprofit organization I truly admire and have utilized many times over the years, so it seemed like a natural fit. CaringBridge offers patients and families free websites to tell their stories, post updates, and communicate. It offers many ways for people to care for each other during any type of health event and is available 24/7, free to use, and accessible to anyone, anywhere.

Through CaringBridge sites I’ve followed little children fighting cancer, preemies in the NICU, and fellow health writers who just want a safe space to focus on the medical updates in their lives. There is room for photos, messages of support, and other personalized touches, including multiple privacy settings, that help connect patients and families in crisis. There is no advertising on CaringBridge; it is dedicated to families, not profits. That really resonates with me.

Coordination of care is always challenging, especially during acute health crises. After leaving an inpatient team meeting or getting important test results, it can be overwhelming to have to call and e-mail everyone to keep them posted, or keep track of all the details that need to be handled. Friends and family usually really want to help, but it’s sometimes hard to ask for specific, concrete things. In response to user requests to help centralize support, CaringBridge now offers CaringBridge SupportPlanner, an online calendar that helps family and friends coordinate care and organize helpful tasks, like bringing a meal, offering rides, taking care of pets and other needs.

I have been the patient in the ICU bed, struggling to keep friends and family in the loop, and I have been the relative huddled out in the corridor, trying to send texts, answer e-mails, and make sure someone has gone grocery shopping. I am glad services like CaringBridge sites and CaringBridge SupportPlanner exist—living with illness and caring for people with illness is hard enough. Some of the details should be easier to manage.

I am pleased CaringBridge is taking time to raise awareness for family caregivers, and acknowledge all they do on a daily basis to advocate for their loved ones, and I am grateful to have supportive caregivers, friends, and family in my own life. This month, take a moment to acknowledge those you know who are caregivers, and tell us a little about them here—they don’t do it for praise or notice, but a little encouragement can certainly go a long way.

(*And any questions about sponsored posts? Let me know! I very rarely post them, and will always be transparent. This content is sponsored by Caringßridge. Any opinions expressed in the post are my own und not those of CaringBridge.)

Gratitude

A friend and colleague saw me in my office yesterday and remarked that I looked red-eyed.

“I’m emotional, but today it’s good emotion,” I told her. And it was. Over the past few days I’ve been overwhelmed by the outpouring of support and positive energy we’ve received in person, through e-mails and texts, and over Facebook, Twitter, and other channels.

We have a long road ahead of us as we help my father look for a living donor for a kidney transplant, but we’re moving in the right direction.

“I have so emotion about all of this I don’t even know what to do with it or where to put it, except to be grateful,” I told my husband today.

And so I am–grateful, humbled, and hopeful.

Thank you for spreading the word, for the words of encouragement, and for so much more.

I’d like to post about gratitude as much as I can in the days leading up to Thanksgiving. However inadequate they seem, the simple words “thank you” are a place to start.

*    *     *

New to this story? My father needs a kidney, and we need some help finding a living donor. Please share his letter and if you’re on Twitter, consider using the hashtag #kidneyformike

An Urgent Request

My father needs a kidney transplant. We are exhausting all means necessary to find a living donor match for him. Please read his letter below, and please share this post as much as you can, and link to it on whatever social media platforms you use.

*   *   *
Dear Friends and Family,

I write you today with a great sense of urgency. As some of you may know, I am
a kidney cancer survivor and when I was thirty-two, doctors removed one of my
kidneys to save my life. Unfortunately, thirty-five years of diabetes and the toxic
side effects of the drugs I must take to treat polymyositis, a muscle disease, have
strained my remaining kidney. Despite my continued efforts to maintain kidney
function, I am now in renal failure and my doctor has determined that I need a
kidney transplant to survive.

I have fought through diabetes, polymyositis, heart disease, and cancer, and I am
not done with my fight yet. I have too much to live for: my wife and I have raised
three children, and they have blessed us with seven young granddaughters. It is my
greatest wish to live to see them grow into the amazing young women I know they’ll
become.

Humbly, I am asking if you or anyone you know might be willing to be tested as
a potential living donor. Living donor transplants represent the best opportunity
for positive long-term outcomes, and provided I am able to find a suitable match,
my medical team is confident this surgery is my greatest chance for living a longer,
healthier life.

I realize that donating a kidney is an incredibly generous act, as well as a major
sacrifice. I wish that I did not have to ask anyone to make such a sacrifice, but I am
incredibly grateful that this option exists.

If you are interested in learning more about the Living Donor Program or are
considering being tested, please contact the Beth Israel Living Donor Team. You can
reach Tracy Brann at 617.632.9851. Based on this conversation, they will guide
you through the process should you choose to proceed with the testing. The Beth
Israel Living Donor Team can walk you through the health risks and the many other
considerations that go into this surgery, but rest assured that the medical expenses
will be paid for by my insurance.

This is truly a life and death matter, and on behalf of my family and myself, I thank
you for your time and consideration. Please do not hesitate to contact me with
any questions or concerns.

Sincerely,
Michael A. Mingolelli, Sr.

*   *   *

Thank you in advance for anything you can do to help us.

Some RSS Housekeeping

Hi All,

Just a short note to say I’ve added a new RSS feed for this site, if you used to read A Chronic Dose that way and prefer to keep up with that. You can find the button at the top of the page on the right side, with the social media buttons (FB, Twitter, etc.).

So, now there are two easy ways you can subscribe: you can sign up for email updates on the sidebar, or you can update your feed using the new button above.

I think that’s the last tweak–thanks so much for bearing with me, and following me over here.

On Place

Sometimes when I am driving the last leg home, I am still surprised that this ride, that this life, is mine. Thankfully it is a beautiful, scenic New England drive, full of vibrant leaves, pastoral fields and farms, antique houses, and marshy conservation lands, because it certainly isn’t a short drive. (Thankfully, too, I don’t commute to downtown Boston every day, or at rush hour.)

After I battle the pedestrians and buses and cyclists and congestion of Huntington Avenue all the way out of the city, then the traffic lights, construction, and congestion of my old neighborhood, and start the back roads route home the rest of the way, something in me shifts. I am less tense and anxious. There are fewer traffic lights, more people willing to let me change lanes or turn left, there is lots of sky and trees and the changing of seasons is so distinctive. As I cross from one town into the next, inching closer, I relax. I appreciate the scenery. I don’t care what’s on the radio. If my daughter is with me, we talk about the colors she sees on the trees, or what colors the horses are, or where the moon goes when the sun is up high.

Remember, this is coming from the person who, for fourteen years, has lived in the city or right at the edge, who has never been beyond a few minutes’ walk to coffee, Thai, and public transportation. When I lived in Dublin, I was around the corner from the Guinness Brewery and could smell the hops, and less than then minutes on foot from Trinity College and City Center. When I moved back to Boston from Washington, DC, I lived above a trendy restaurant in the South End, then directly across from the State House in Beacon Hill, then right at the intersection of three of the busiest roads in the city where the Jamaicaway, Rt. 9, and Huntington Ave meet. Even when we were on the outskirts, we were still on the D Line train, and had a commercial area with shops, cafes, and restaurants around the corner.

Admittedly, I was a suburban and exurban snob, and couldn’t imagine being far away from so much. I thrived on the proximity to people and places, and drew energy from the pace around me.

Until I didn’t anymore.

My favorite place in the world, my happy place, if you will, is Cape Cod. Just the thought of it brings up memories of long summer days, lots of cousins and family, time with my grandparents, and a freedom to be just be, instead of being a patient or a student, etc., that never existed like that in any other part of my life. We’d pack up the car for the summer and as soon as we crossed the bridge, I relaxed.

I love the beach and I love summer, but as an adult, my favorite time of year on the Cape is the fall and the very early spring, when the crowds are gone and the view is just as spectacular, if not more so because there is no else clamoring for the view. A short weekend trip or just an overnight gives me peace like nothing else. Even with wi-fi and deadlines and my briefcase and traffic at the bridge every time I am there, I breathe more deeply, I exhale more fully. There is less congestion in every sense of the word, and less pretense. I can’t think of a better way to describe it than that.

To a smaller degree, it’s that same content feeling I notice on my long drive home. We expected a lot of benefits (and challenges and drawbacks) from our move, but this I did not expect. I never thought I was someone who was suited for lots of trees and quiet, dark nights and small-town life. Place had a different meaning.

But somehow, it’s working. Life feels a little less out of control here. And with a lot of very hard, very heavy stuff going on behind the scenes lately, I will take serenity wherever I can find it.

And, in the spirit of new places, my new site, laurieedwardswriter.com, will be up and fully functional in the next day or so. This blog will still exist under this name over on the new site, and this current site will automatically redirect you to the new home for A Chronic Dose and you can still subscribe from there and update your feeds, but the blog will be one branch of a larger site dedicated to my books and my professional identity. It’s more than a much-needed design and function update. It’s taking ownership of a distinction that is fundamentally really important to me: that of a writer who is also a patient, not a patient who writes.

Anyway, I am really excited to move to the new site, and to change up the style, consistency, and frequency of my posts over there. Sometimes the best way to really find a groove again is to start from somewhere totally new.

On Self Care (and Sanity)

I can tell that I really am finding a groove again after such a long time—I find myself writing posts in my head while stuck in traffic. I think about essays that I want to write and send out to editors. (I don’t see this happening any time real soon, but the impulse is there. The stories and opening sentences and phrases are there.)

A confession: I have always had an extremely strong aversion to the term self care. Like, shudder. Unless I’m using it in terms of my newly-minted two-year-old and things like her brushing her own teeth, putting on her shoes, and things like that, it’s just never, ever been part of my lexicon.

It’s hard to articulate why, but part of it is that to me, it somehow seems…indulgent. Intellectually I know that’s not true, and that what is self care to one person may seem extravagant to another, and vice versa, and that what self care means to and among patients varies widely, too.

After a whirl wind new baby-more demanding job-family health extravaganza-book due-selling, buying, and renovating-house couple of years, I think I am finally settling out a bit. Even just having the book done and not automatically having to work late every night, or occasionally using my daughter’s weekend naps to do housework instead of just work work has made an enormous difference.

And with some space to actually do things deliberately this fall, instead of just scrambling to stay afloat, I find myself trying to establish new patterns. Like I said, September always feels like a fresh start to me, and that is especially true this fall, as we’re getting used to our new town and new lifestyle. I never knew how much of an impact place would have on me, but more on that later.

(And, speaking of fresh starts and new locations, I’m going to launch whole new site really soon! Stay tuned for details as we tweak final changes…I am really excited!)

I’m going to bed earlier, which for me means striving for 11pm, but it is a start. I actually feel asleep at 10:30 the other night and it felt wonderful. I really miss the awesome gym near where I used to live, but I have found a home workout routine that I can fit into my life realistically and can stick with, and it feels good to have some structure back, especially after a summer of living out of bags and packing and unpacking way too many times.

I’m experimenting a bit with recipes again, and incorporating a lot more high-protein vegetarian meals into our family diet. I’m planning late afternoon adventures most days of the week, and lately, I haven’t stopped to get the coffee on the way to the playground or the farm or the pumpkin patch that I always used to need en route to our various jaunts. (Every time we pass by a Dunkin Donuts, my daughter says “Mama really likes coffee.” Yikes.)

I got my hair cut for the first time in, oh, seven months, last week. “Don’t ever do that again,” said my new stylist. Trust me, I won’t.

For so long, when I couldn’t find a life rhythm, I couldn’t find a writing rhythm, either. There was no place for new words, for reflection, for ideas swirling around and percolating. I much prefer imagining new posts while stopped at red lights to falling asleep at them (because yeah, that happened).

I’m not trying for radical changes, I just want a little bit more balance. If that’s self care, then I guess that is now a part of my lexicon.

So tell me, what sorts of small changes or new habits are you undertaking? What’s one practice or tip you absolutely recommend?