balm: Spring and community

I don't know what it is -- winter blues, legitimate stuff we've had going on, or (likely) a combination thereof -- but the past two winters I've just felt...bludgeoned(?) by the time I reach the end of February or start of March. (Think: playing in quidditch, got-knocked-out-by-a-bludger, level of exhaustion.)

As I look back to the past two winters, I try to sort and name the challenges that have made the seasons feel so long and heavyboots. In January of 2015 I was trying to navigate re-entering the workforce after having a baby, plus helping my brother grapple with some serious mental health issues. This past year was less -- but I think the pregnancy knocked me out in a way I hadn't anticipated, and we continued to have weeks where we felt overwhelmed by the demands of caregiving.

When I think of both seasons and how we made it through, I think of the meals that flowed in when I finally had to collapse into the arms of our community. I am so thankful for those who have carried us -- my aunt, Selena, my grandparents, and my Mom's legion of friends. This past year we have plugged into a wonderful faith community and they have given me the space to be honest and vulnerable about some of these challenges, and have responded with generosity and kindness during the bleaker weeks. It has pulled me through,

On a related note, I am currently being drawn back to the other side of the support process. I have a friend who is currently going through 'a total shit time.' (Think: that scene in love actually when Emma Thompson is consoling a mourning Liam Neeson about his recently departed wife. I always feel like that bluntness best captures these terrible and ghastly seasons of life that we sometimes must painfully stand by and watch our friends weather.)

As our friend group has tried to figure out how to rally around said friend and envelope her in messages of love and support, I've been drawn to these things. First, an Op-Ed by David Brooks -- The Art of Presence. This is really sound advice (although not novel or the first time it's been shared). But I think it's the most helpful -- for what Charlie and I have needed in caregiving in past years, and  as a reminder of how I can strive to help others in mourning, sickness and loss.

I'd say what these experiences call for is a sort of passive activism. We have a tendency, especially in an achievement-oriented culture, to want to solve problems and repair brokenness - to propose, plan, fix, interpret, explain and solve. But what seems to be needed here is the art of presence - to perform tasks without trying to control or alter the elemental situation... Sit simply through moments of pain and uncomfortable darkness. Be practical, mundane, simple and direct.

And secondly, I've been lifting up this song/prayer. My hope is that any of you who read this and are in a season where you are supporting a struggling friend, or in need of support yourself, find some comfort in some of these words.

My friend is worn and torn, he's badly wounded
I don't know what he really needs
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

He lives for love of what he knows
But he cannot put his trust in much anymore
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

Keep my friend safe, strengthen his eyes
The night has been long but the dawn is sure to be fine
Bring hope to his heart, relief to his mind
Bring hope to his heart, relief to his mind

EAGLE!

 ... was Asher's unprompted exclamation when we boarded the plane Friday morning for a weekend away in DC. A friend had highly recommended a visit to the Wonder exhibit in DC earlier this year, so I coupled a desire to catch up with friends before baby#2 comes with the impetus to see the exhibit and planned a trip.

The highlight of the weekend was getting away with my little guy and getting to watch him discover the thrills of the city in conjunction with his new-found ability to articulate his excitement using real-life words. The weekend was all "WOW BIG TRUCKS!" and watching him delight  in the good-life things, like finding a particularly big hole to stand in at Lincoln Park. It was fun to experience the city with new eyes -- to exult in the passing of a garbage truck with the same delight we found in being up close to Lucy the orangutan at the Smithsonian zoo. Asher was also gleeful every time we rode the metro, exclaiming "yayyyy choo choo train!" to the bemusement of all the DC commuters. It was a fun realization for all of the nearby adults to be reminded that in the eyes of my little 18-month old Kentuckian, a DC metro ride is truly grand.

Overall, it was a whirlwind of fun -- we lunched at Tortilla Cafe, played in Lincoln Park, soaked up the beauty of the Renwick exhibits, and traipsed alongside the DC masses through the zoo on the sunniest and most perfect of Spring days. Add in all the modes of transport in between and it was the greatest of adventures Asher and I could have imagined.

However! In order to react to the internet-tendency to curate and paint everything with brush strokes of perfection, I will include this last photo - capturing Asher's lack-of-nap COMBINED with why-can't-I-touch-these-awesome-exhibits breakdown in the middle of the Smithsonian. I did think it was slightly ironic that Asher and I both hit our most-tired moment midway through the museum*. Thus, the thing I had most anticipated prior to our trip, which was still awesome, was kind of a blur. The real treasure was the relaxed mornings in the parks with friends. It's nice to be reminded that the best moments are the ones we don't necessarily hype up - the unstructured parts of our trips and the subtle, secret, quiet moments.


*the greatness of this weekend is dedicated to John, Becca, and Katie - who co-wrangled my wiry toddler and were patient and gracious when he and I both had some travel-weary moments.

And then it was over...

This week I saw a photo series about working Moms – many of them in business pumps or attire, stumbling in the door – staring at a screen – brow furrowed and clearly multitasking.

This led me to think, if there was a photo series out there about Alzheimer’s caregiving, with a particular focus on the sandwich generation,  I would contribute a photo of myself at 9:30am on a Sunday morning. The kitchen would be strewn with messy dishes from a weekend breakfast. I would be blurred, slightly, with Asher in the foreground -- just starting to whine and lose interest in a toy. Meanwhile I would be hovered over the trashcan, furiously pulling off every godforsaken tab and bitterly punching out each of the twenty-eight pills from the blister pack for the medicine for my Mom’s clinical trial study. The picture would not capture that I would be cursing the fact that the packaging for these pills can’t be more user-friendly, bemoaning this “thorn in my side.”

It’s of note that Mom would be in the shower – I specifically chose to fill in her pill bottle on Sunday morning when she’s in the shower, even though this time window leaves me scrambling because Charlie’s already left for church, and thus my hands are full and my time is stretched. But I have picked this window because I feel a sense of urgency – I want to get her weekly pills all filled out before she asks me if it’s done for the seventh time and I inevitably explode, causing her to meltdown in tears and subsequently feeling gut-wrenching guilt myself. I also need to do it while she’s in the shower so she’s not standing over me when I do it, asking some other round of inane questions that push me over the edge. And lastly I have to do it on Sunday morning because if I wait until later, then the moment will pass and I will forget and she will miss her dosage of medicine for that morning.

Now, flip back to this afternoon, and imagine my shock when, out of the blue, at the end of a four hour appointment today, I was informed that the extension portion of her clinical trial study was over. 

Done. 

Finito. 

No more clinical trial study pills. No more blister packs and harried Sunday morning moments of pure resentment and frustration to anticipate.

This chore that I’ve loathed for so long and that captured the epitome of my frustrations in caregiving was pulled out from under me before I had the time to look up from my iPhone as I’d anticipated entering the next appointment. It also happened before I had the time 

• to request/(plead?) for an exception to continue on the medication between the period when the trial has ended but the medication will be introduced to the market
• to contact Mom’s normal neurologist to increase her medication level for a medicine she had to have tiered down while on the study
• to mentally grapple/map out next steps in advance.

 This isn’t surprising. In our roles as super-caregivers Charlie and I often find ourselves behind the curve in circumstances where we had intended to ask proactive questions, plan ahead and advocate for the best possible option. Week 72 of our clinical trial was almost fated to sneak up on me.

But now here I am, facing a blister-packless Sunday, and I am experiencing a very real flood of emotions 

• of a renewed reminder that the things we often bemoan are actually ways to forget how privileged and lucky we are (in this case, that we were able to get into such an accessible and potentially helpful clinical trial).
•  of the renewed anxiety and underlying questions about what to do next in the face of this illness. Now that this clinical trial is gone – what can I do to try and feign control and power to fight a (presently) unbeatable illness? What chirpy line of update will I include in my next Walk-to-End-Alzheimer’s annual update?
• of the bleak and shitty reality of the trajectory of Mom’s illness

I’m in a bit of a haze as I realize how much barren doctor’s office walls and bleak fluorescent lighting have been a barrier from impotence, and from processing some of the deeper meaning questions that I’ve previously just burrowed behind a wall of blister-pack directed, Sunday-morning angst-rage.

Art, Alzheimer's, and the most enjoyable research study we've stumbled on to date

I want to take a minute to break my blog-silence and gush about the "clinical trial" study Mom and I have been participating in over the past seven weeks. Calling it such feels a bit inaccurate, because it's been so much fun. Each Friday, we've been able to work with staff at the UK School of Art and Visual Studies to create some form of artwork  The research staff is assessing how these experiences can have a positive impact on patients with mild to moderate dementia. (Read more here!)

Read more here: http://www.kentucky.com/living/health-and-medicine/article57328868.html#storylink=cpy

The format of our weekly class is very basic: there's always a piece of artwork (generally done by a professor at UK or a local artist) that serves as a source of inspiration. We begin the class by discussing the artwork: What do we see? What feelings does the piece of artwork evoke? Sometimes, we'll discuss things like brushstroke technique, if a piece of art is more organic or geometric, or if a piece has more contemporary or traditional influences. What I've loved so much is that the conversation is basic and approachable for all us non-art folk -- we can discuss things that come from our basic impulse reaction and draw on foundational memories or experiences. The discussion has allowed both Mom and I to feel engaged with the artwork.

After we discuss the piece we generally create our own work using techniques from the artist we had discussed. We usually spend about forty-five minutes to an hour painting, and then wrap up and head home.

Here are a few simple observations I've had about the experience:

• Mom and I are generally skeptical at the outset, as we're both more right-brained and have never been very into creating art. However, each week we always leave feeling more relaxed, upbeat, and accomplished. We've both been pleasantly surprised at what we've been able to churn out in such a short time-frame -- and we've found that we're a surprisingly great painting team!
• While we use the artist's inspiration to come up with a piece, I always try to direct Mom to one of her own memories to create our artwork. I've been surprised by how much we've drawn on recent trips to identify a memory to form the landscapes and settings of our artwork.  We found ourselves painting a landscape from Maine one week, while another we focused on re-creating a shot of Charlie and Mom's kayaking expedition last year in the Everglades. (And of course, there was a basketball-themed piece - because we were taking the class in March, after all.)
• It's been a joy to talk with Mom and others in the class about the art they're creating and where it comes from. There's really not a way to articulate this without seeming trite, but it's been very meaningful to observe all participants (caregivers included) talk about what led them to create their piece of art and where it comes from inside of our experiences. Sometimes our artwork reflects a longtime hobby or important life event, while other times we're just thinking about what we ate for breakfast or trying to recreate from the artist's inspiration. But all of the artwork has grown out of a place of meaning and was catalyzed by a memory from participants -- and that has been such a fun experience to observe.

I just wanted to share about this program, to take a moment to reflect on what a joy it has been. Also, I wanted to brag on my Momma. I am proud of how she continues to try out new things -- especially research studies -- and particularly in light of the reality that much of what is familiar and known is slipping away. 

If you are in the Lexington area and would like to see some of the fantastic works of art that Mom and others have made, swing by the UK School of Arts and Visual Studies (236 Bolivar Street, Lexington, KY) anytime between Tuesday, April 12th and Sunday, April 17th. The exhibit is call "Hidden Wonders" and will be featured on the second floor, toward the back of the building.

{hold}

The most meaningful book I've read this year has been When Breath Becomes Air, written by Paul Kalanithi - a neurosurgeon who wrote about his experience battling Stage IV lung cancer.

While supporting a family member diagnosed with malignant cancer is different than my mother's fight against Alzheimer's, a passage written by his wife in the epilogue really jumped out to me. It reminded me of how I have been grateful, both for my community over the past three years and for how my marriage with Charlie has been fortified in unexpected ways.

And yet we did feel lucky, grateful - for family, for community, for opportunity, for our daughter, for having risen to meet each other at a time when absolute trust and acceptance were required. Although these last few years have been wrenching and difficult - sometimes almost impossible - they have also been the most beautiful and profound of my life, requiring the daily act of holding life and death, joy and pain in balance and exploring new depths of gratitude and love. (--Lucy Kalanithi, p.219)