On 2013 (Or, Side by Side)

Posted on January 3, 2013 by ledwards

It was helpful to re-read my New Year’s post and its emphasis on being more present as I thought about how to approach this first post of 2013. Being present, being mindful, really, involves focusing on the actions and emotions of the moment.

Grief. Joy. Sadness. Happiness. Side by side.

A couple of years ago, once we were through initial trauma of my mother’s brain injury and could focus a bit more on issues of rehabilitation, the losses stretched out in ripples, and the fear and sadness also mixed with gratitude and anger. After so many years of struggle we were finally expecting a baby, and here I was, in my third trimester, on bed rest and fighting to keep that baby safe. I wanted my mother. I wanted my daughter to know her grandmother. I wanted her birth to be free from all this heartache and upheaval, not just for me or for her, but for all of us. I was angry that we wouldn’t be able to just have the joy.

But I didn’t realize then the heart and mind’s capacity for preservation and compartmentalization. I didn’t know that I could weep for mother’s situation and yet hold my daughter in my arms and feel pure, all-encompassing joy. That even when it felt like things were crashing down around us—mother in rehab, father in the hospital, maternity leave that ended early, sickness for baby, sickness for me, plus all the normal newborn, breastfeeding, sleep deprivation woes—I could feel so utterly content, that even as my hold on all the other moving parts of my life slipped through my fingers, I never felt more solid, stable, or sure.

Over the past two years, I’ve often thought about this dichotomy: How I’ve never been happier than I am when I am with my daughter, how this always-cheerful, adaptable, chatty, precocious little girl has changed us, changed everything. How I gain so much every day I get to be her mother, even as more and more slips away. How I’ve re-calibrated to an ever-shifting sense of normal, where I watch people I love suffer, where we all shed more tears than we used to. Guilt lingered—did the many tears I’ve shed somehow take away from my gratitude for her? Did the joy and the love somehow mean I didn’t appreciate the gravity of all the stresses around us? Could I feel both so completely and simultaneously and have each one be true, be real?

Yes. If there is anything I have absorbed from the past few years, it’s that.

I remember so clearly the day this fall we found out my father’s lone remaining kidney was indeed failing. I called my husband but couldn’t get all the words out to tell him, there simply wasn’t enough air. Heart-ache, I repeated the word in my head as I battled my way down busy Huntington Ave, the traffic lights blurry through hot tears. This is what it feels like when your heart aches.

I picked my daughter up from school later that same day and listened to her chatter away about her day and who and what she played with. We went to the library, where we played with trains and picked out books. She held my hand in the parking lot, and helped me empty the dishwasher. In the moment, in the middle of our normal activity, I found the air I needed. I laughed. Again and again the pieces threaded back together.

Watching my father deteriorate these past few months has been a series of chest-clenched moments, where I know what I see but don’t want to see it, where I can’t talk about it so most times, I don’t. I’ve been conscious of creating time where my parents can be with my daughter. No matter how terrible he feels, when he is with his grandchildren, when they run to him with their arms outstretched, when my daughter climbs onto his lap and says, “I love you so much,” nothing else exists for him but that moment.

Waiting for his transplant and watching him get worse and worse while at the same time, having so much hope and optimism that he will have a good outcome…again, we have grief and joy, sadness and hope, all mixed up.

I won’t say that the heart-bursting gratitude we have for our daughter, for this life we’re living with her, is sweeter or more appreciated because of all the difficult stuff that exists right along with it, because I can’t imagine feeling any less than this, regardless of what else might be going on. No one ever gets just the joy, that’s not how life works. But if we’re lucky, even with the sadness, we still get joy. We can feel both so completely and simultaneously and have each one be true, be real. Side by side, each a measure of love.

So that’s my hope for 2013. I don’t know how much of the tough stuff the year will bring, but I want to be mindful and fully present in the joy wherever we can find it, to not let it slip by without squeezing every ounce out of it.

On the Helpers

Posted on December 17, 2012 by ledwards

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

Posted on December 13, 2012 by ledwards

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?

Solace in the Good

Posted on November 27, 2012 by ledwards

I fully intended to post this right on or near Thanksgiving…

And somehow, the mound of grading and the professional development projects and prep work to host Thanksgiving besieged me. I spent the day of Thanksgiving itself enjoying time with family and dear friends, and being present in the moment seemed like the best way to express thankfulness for all the good that surrounds me.

But this is what I wanted to say then, and this is what I think about so often lately. The response to our search for a living donor kidney match for my father has been tremendous. Knowing there are so many people out there willing to be tested and consider making this huge sacrifice has made for an emotional few weeks. “Overwhelmed” is a word that gets overused, I think, and often has negative connotations, but truly, I am overwhelmed with gratitude, and with the goodness that is out there.

I am grateful every day that I get to wake up in a world where there is an earnest little toddler who wraps her arms around me and says “I love you,” and I am fortunate enough to get to be her mother. But I am grateful this is the world she wakes up to as well—one where one person’s struggle is taken up by others, where those we care about are cared about by others.

We’ve a long road yet, but we’re moving in the right direction.

Someday soon I hope to have more information to update, but for now, we take solace in the good.

CaringBridge and National Family Caregivers Month: An Interview

Posted on November 19, 2012 by ledwards

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

Posted on November 8, 2012 by ledwards

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

Posted on November 2, 2012 by ledwards

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

Posted on October 29, 2012 by ledwards

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

Posted on October 24, 2012 by ledwards

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 Becoming a New Patient

Posted on October 18, 2012 by ledwards

As the first post here at my my new home, I thought it fitting to return to that seminal moment in the experience of being a patient: finding out you have an illness.

I recently spoke with someone who is newly diagnosed, someone who has otherwise been pretty healthy. Our conversation reminded me of how overwhelming this whole process of being a patient and navigating the health care system can be. As a lifelong patient, I don’t always pay as much attention to this stage in the patient experience as I should, and I started to make a list of all the things that popped into my head as we spoke, ideas both big and small.

What tips or suggestions would you add to this list? What do you know now you wish you’d known when you first received a diagnosis, or, for those who might still be in the process of receiving one, when you first started experiencing symptoms and going to doctors? I’d love to hear your thoughts in the comment section!

Don’t feel awkward or guilty about asking for a second opinion.

Ask lots of questions—it’s important you understand what’s going on with your health. If you don’t feel comfortable asking your doctor questions, consider meeting with a new doctor or provider to see if there is a better rapport.

Some days will be really good. Some days will be awful. That is okay. Your feelings as you process this are all okay.

When it comes to waiting—waiting for appointments, waiting in hospitals, waiting for results, etc., expect the worst and hope for the best. Time works differently in the medical world. It’s frustrating, it’s not always fair, but it is a reality of the patient experience.

A lot of things might seem scary and out of control, but don’t forget—this is your body. If something doesn’t seem right—a provide doesn’t wash his or her hands; a lab tech sticks you too many times; the test someone is scheduling for you doesn’t sound like the test you know you need—speak up! It might be awkward, but social graces are not worth your health or your sense of comfort.

Spend some time getting to know the online patient community. Sometimes, the anecdotal experiences and wisdom there, as well as commiseration and validation, can be enormously helpful.

Remember that everyone’s experiences are different, and everyone is at a different point in the process of treatment, acceptance, etc. Not everything you read online will resonate with your experiences, or with what your doctor tells you. Again, ask lots of questions, and don’t be afraid to bring what you find online to your doctor.

Drink lots of water and wear layers when you have blood drawn—being dehydrated or cold makes it even harder to draw blood.

You won’t get a lot of rest as an inpatient, but there are lots of things you can do to create a better environment and a sense of calm: familiar books, music, and DVDs make a difference, certainly, but you can also inquire about the necessity of overnight vitals to see if you can get uninterrupted sleep, for example.

Sometimes you will really want people with you at appointments, or will want to talk about it. Sometimes, you will want to be alone, or want to talk about anything other than illness. These are your boundaries to draw, and it is okay to ask people to respect them.

Also, if you have a moment, definitely let me know if you encounter any issues with the comment system, the subscription service, or anything else that comes up as I fully switch over to this new space.

(And, I am really happy you followed me over here!)

Laurie Edwards

Writer, Teacher, Advocate