My wife was struggling to survive, and there was no guarantee she would end up on the list to get the transplant she desperately needed. I was struggling with the burnout that would eventually kick my ass, and a person I had worked hard to help get sober had died of an overdose.
When I was starting out in that work, a mentor told me that if I knew I was going to walk across the desert tomorrow, I should be gorging myself with water tonight. Likewise, he said, if I know that tomorrow I will be surrounded by ugliness, I should strive to gorge myself with beauty to prepare for it. Over time, he insisted I hang out at museums, read good books, watch good films, read poetry, and play in my garden. All in the relentless pursuit of beauty as a prophylactic against the ugliness I would encounter along the way.
But somewhere along that path, I had gotten busy, and those words seemed far away. I needed to be reminded of what was lovely, what was good, and that even in the midst of unspeakable tragedy and pain, there was beauty that could lift us above our mean circumstances and guide us home.
My particular form of ADHD, as I have said before, needs structure, but has trouble creating it, so latching onto existing structures is always helpful. And here we were, in February of 2015, just a few days before Lent.
I sent an email to 35 people who I loved and admired. The subject line was, Hugh’s Newsletter Situation, and the email said, in part:
Here is the deal: I am going to send you an email every Monday during Lent (roughly the next six weeks). I will link to five beautiful things I liked that week – perhaps a picture I liked, perhaps a funny story, perhaps something of profound wisdom. In addition, if I read a book that blew me away, I will mention that, and provide a link to it, too. And if it is a week when something is happening I think you should know about, I will let you know in the email.
And that’s it. No lengthy prose, no huge commitments. Just five things that struck me as beautiful, books I read that were wonderful, and things I think you should know.
If this works (meaning I keep my commitment to you) then I might keep it up – or I might not. I get bored easily.
It was simple: For six weeks, I needed to look for five beautiful things every week – not just random things, but things worth sharing. I figured that committing to share them with others would keep me honest. I’m far more afraid of letting you down than I am of letting me down.
Here we are now, seven years later, and I’m still sending them out every Monday morning. (You can sign up here). Now it goes out to several thousand people, and it’s a bit more polished and I’m older and have more aches and less hair. But my wife got her heart transplant and I came back from burnout and now live an entirely different life in another state entirely.
But what hasn’t changed is my belief in beauty as a prophylactic against the ugliness of the world, and searching for it like my life depends on it. Because I am more and more convinced that it does.
I spent this past weekend in one of my happy places – the mountains of North Carolina. I love it there, even if it is not home in the way the hills of my native North Mississippi are home to me. But it feels in some ways closer to home than the subtropical prairie of Central Mississippi where I live now. Geography is a funny thing.
But the thing that drew me back there this time was not geography, but people. This pandemic has been hard on this sociable introvert, and my experience of the pandemic has been a conservative one: Because of Renee’s heart transplant, which renders her severely immunocompromised, we have been more careful than most careful people, which means lots and lots of distancing ourselves from others.
I drove the 9 hours – I’m not ready to risk getting on a plane yet – and got in late at night, and was warmly greeted by an old friend. He’s the sort of friend with whom you sit until long in the night, catching up and sharing stories from your lives that are too granular to include in the periodic phone calls, the sorts of things that don’t make the curated feeds of social media. The conversation ebbs and flows, the silence is comfortable when it happens, the topics are wide-ranging, and suddenly you realize it is two AM.
Over the next few days, I spent time with several old friends – people I knew from the Before Times. Not just before-the-pandemic times, although that is true, but also from the before-my-life-was-what-it-is-now times. They knew the angry Hugh, the impulsive Hugh, the Hugh that burned out. They knew him and his faults and loved him anyway. And it was delightful to be back among people who truly knew me, in a way I have not been known by anyone since moving back to Mississippi.
That is no reflection on the people here – it’s mostly about time: The people in the mountains have known me for more than a decade. We worked together on various projects together, we made things together, and together we traversed tragedy and joy -divorces, deaths, weddings, and babies, all together. When I fell, they picked me up and loved me – hard. In short, we had opportunities for connection I have not had here, where ⅔ of my time has been spent trying to survive a pandemic in front of a Zoom screen while wearing sweatpants. It’s not the same thing at all.
An old friend who has drifted out of my life would say, when I would do or say something that indicated I truly knew her likes and dislikes, her fears, her quirky guilty pleasures, that it felt good to be known.
And that’s truly it, isn’t it? The desire to be known fully, to be understood, to be seen and heard, to be acknowledged and remembered. This is, at its core, why I write.
* * *
I find myself these days craving connection. My old friends are laughing at this, as I am horrible at staying in touch with people I love. Some of this is my ADHD, as a common thing people with my type of brain do is find that the thinking about a thing feels to our brain as if we did it, so my remembering my friend Kim and thinking fondly of her elicits the same feeling in my brain it would if I had sent her a text or note, so having had the memory, I no longer feel the drive to act on it. Of course, this does nothing to let Kim know that I was thinking of her, but here we are.
I also wonder though, how much my paralysis around reaching out to people isn’t so much my paralysis, but unreasonable expectations set up by technologies that are less than a generation old. As late as the 1990s, most of us had a relatively small group of people about whom we knew what their day-to-day life was really like. In 1998, one might know from an email – or a decade earlier, from a phone call or letter – that a cousin in a distant town took their family to the amusement park, but now we know that their eight-year-old threw up on the roller-coaster, that the six-year-old hates corndogs, that they lost their car in the parking lot, and everyone got sunburned.
And we know that level of detail about hundreds of people, regularly.
There is a phenomenon on social media where, although I am writing a public post, which theoretically can be seen and read by anyone on earth with an internet connection and a browser, in my mind, it is actually only intended to be read by a select few. I don’t parse my words as if it is a broadcast to the planet, but rather as if it is more like a Christmas Newsletter, going out to people I love.
But the inverse is also true – when we read other people’s posts, it is perceived by our brain as if it is written to us specifically, which is one reason we take it all so personally. I saw a post from someone I don’t really know where he was complaining that people were shoving their love for the 2022 Superbowl Halftime Show down his throat, when in reality nobody had addressed him specifically at all – they just had opinions that they posted on their own wall, which he could see. But to his mind, they were all addressed to him.
Because of this, my brain tells me that all my friends are sharing many details of their lives with me, and I am not reciprocating at their level, so the relationship feels imbalanced in my head. But they are many, and I am one, and so their collective flood of sharing is naturally dwarfed by my own output. In other words, it is an ever-escalating race that is unwinnable.
The people I saw this weekend in the mountains – some of them I have not seen in the three years since I have been gone, but we did not lack connection. The sporadic emails, texts, and glimpses into their life on Instagram were enough to sustain the relationship until we could sip tea together in the same room, rehash the old stories, and tell new ones.
The truth is, I could be better about calling and writing, but the bigger problem is my definition of connection is probably skewed by unrealistic expectations because of stories I tell myself about myself.
* * *
None of that diminishes the very real longing I have for the deeper connections here, where I currently live. The additional friction created by the pandemic – the uncertainty of who is safe and who is not, the difficulty finding a place to meet where one feels safe, the second-guessing and cultural gaslighting – are all real factors that make this really hard.
But I find myself these days eager to do the work it will take. I have lunch and coffee meetings (on patios, in places that require masks, with vaccinated and boosted people) scheduled. I’m trying to regulate my social media usage in a way that makes it a servant instead of a master.
And I’m trying to be honest about what I need and to state my needs. And what I find myself needing these days, more than anything else, is connection.
I bought some life insurance last week. I’ve been putting it off for ages, ostensibly because I wanted to research my options, but the long list of other things I have procrastinated on speaks to the lie in that scenario. In reality, it just wasn’t much of a priority, but finally, I got there.
In my 20s, I used to sell life insurance, and Past Me would tell Current Me that I am under-insured, but perfection is the enemy of done, and some is always better than none. I bought breathing room until I can get it all figured out.
One reason – the worst reason, actually – for delaying the purchase was my reluctance to think much about death. I mean, that isn’t completely true: I feel like I have been thinking about nothing but death and people dying for the last two years.
Of course, there is the massive casualty toll from COVID 19: Right now we stand at just under a million dead in the US alone. And none of those people exist in isolation: They are all someone’s brother, someone’s father, someone’s aunt, sister, mother. They were our co-workers, our server at our favorite restaurant, the mechanic who worked on our car, the doctor who looked after our children. The ripples from those million deaths are strong and wide-ranging.
But even putting aside deaths from Covid-19, there is just so much death right now, literal and metaphorical. I know people right now reeling from unexpected deaths of loved ones, friends, partners, and parents. I know people dealing with the death of beloved pets, and those who are planning the end of life for their pets. And then there is the death of dreams, relationships, and livelihoods brought on by this pandemic.
So much dying, all around me. Thinking about it has been overwhelming.
I’m not afraid of dying – that’s not it. I mean, I like living, and intend to stick around as long as I can, but I don’t fear death itself, because I don’t think there is anything to fear. I have preached at dozens of funerals in my career, and I can tell you what the various traditions, including mine, believe about what happens after we die, but the reality is, nobody knows. I mean, really knows. In my experience, people who are insistent that they do know either want to sell you something or sell themselves on something they already bought.
The rational part of my brain says that our species existed 300,000 years before I was born, and I have no firsthand knowledge of any of it, so it would be irrational to suppose that I will have first-hand knowledge of it going forward after my death. To be more concise: The rational choice is that my consciousness will be the same place after I die that it was before I was born: Non-existent. That when I die, I just turn off, like a light switch.
But I believe in humanity and community, and for most of those 300,000 years, there has been some belief in most cultures that we persist in some way. Perhaps it is delusional to think that I may be reunited with my loved ones in some way after I am gone, and it is not the most rational belief system by far, but it is a beautiful one, nonetheless.
I tend to be ruthlessly pragmatic when it comes to things like spirituality. Since I do not know what will happen after my death, I don’t spend much time thinking about it, preferring instead to focus on what I can know. I know what happens when I feed hungry people, when I ease someone’s burden, or when I look for who is missing and work to get them found. I know what happens when I do the work in front of me and so I leave speculation about rewards in the afterlife to other people.
But I also know that I will live in the memories of those who love me, and as long as there are stories I am in, as long as my influence is still felt, as long as any change I worked to make happen can exist and be built upon, in some sense, I am never really gone. We all leave legacies behind us, and it is up to us to decide if they are to be worthy ones.
No, any hesitancy I have around death doesn’t involve me at all, but the people I will leave here, who will miss me when I am gone, who will have to find a way to move on, who will have to clean up whatever mess I leave behind, and who will be left to pick up the pieces – because no matter how well I plan, there will be pieces. Every death breaks things, and there is always a mess to be dealt with. And now my death – which is inevitable, if hopefully a long way away – will be slightly less messy than it would have been before.
My wife Renee was born with a particularly aggressive form of heart disease – Hypertrophic Cardiomyopathy. Yeah, I have trouble saying it too.
By early 2015, she was in heart failure, and her quality of life was plummeting, so her cardiologists at Duke University hospital in Durham put her on the heart transplant list.
One of the most frustrating parts of the process for me, as her primary caregiver, was all of the things I did not know, the things I didn’t know to expect. We don’t really keep diaries much as a people anymore, and I am sure we are the lesser for it. However, I was pretty active on Facebook during that time, so I have collected the Facebook posts and Instagram pictures from that time, and put them together in a narrative of sorts.
I keep saying I will write a memoir of this time, but until then, I hope this can serve as a roadmap of one family’s experiences. I hope these can help others see they aren’t alone, and to remind us that we are loved, and that what saw us through this time was our community.
The story starts in May, when we were asked to go to Duke for a 3-day evaluation, to judge her suitability for transplant.
Transplant evaluation
Wednesday, May 27, 2015 at 11:35am: “I’m kinda famous on the Internet. If we need to raise money for her to get the transplant, we can do it.” – What I just said to the financial counselor at Duke. I think I came across as far more confident than I actually am…
Wednesday, May 27, 2015 at 5:09pm: So, back home from day one of 3 days of medical evaluations that will determine whether Renee Hollowell is a candidate for transplant. Just these 3 days have a pre-insurance cost of $60,000. I think I need to lay down. And sell a kidney or something.
Thursday, May 28, 2015 at 8:48am: On our way back to Duke for day two of Renee Hollowell’s transplant evaluation. I am in a much better place, following 8 hours of sleep. We are thankful for all of you.
Thursday, May 28, 2015 at 9:31pm: Day two of transplant evaluation for Renee went well – a few tests tomorrow, and we are done. We should know at the end of next week if she is being listed. Thankful for all of the love and support.
Just so you know, today I mentioned the overwhelming support we have on social media when the social worker asked about our support network. #LoveYouGuys
Friday, May 29, 2015 at 8:32am: Thankful the 7:30 AM tests were cancelled. Gonna grab breakfast and head in to Durham slowly. Day 3 of Renee’s transplant evaluation.
Thursday, June 4, 2015 at 4:23pm: Renee is now officially on the heart transplant list.
Cleaning up the messes
[Before the transplant, they wanted her to deal with medical loose ends – she had some dental work done, and her gallbladder out – a simple, outpatient procedure, they assured us.]
Wednesday, June 10, 2015 at 10:37am: If you are keeping track of the craziness that is the Hollowell lives, we are at Duke today to get Renee’s gallbladder taken out. For obvious reasons, I will probably be hard to get in touch with today.
Wednesday, June 10, 2015 at 4:12pm: Renee update: She has been in recovery for almost 4 hours, and they can’t get her oxygen levels to where they need to be. So, they are putting her in intensive care for observation and keep trying to get more O2 in her. I talked to her, and her attitude is good. We just need her levels to be higher.
Thursday, June 11, 2015 at 9:25am: Renee had a good night, running a slight fever but otherwise good. She has a lot of pain this morning (not unexpected) and we will know more later this morning. I have ducked into the office to get a few things done while she rests. As I know more, I will post it.
Friday, June 12, 2015 at 1:00pm: Renee is ok – sitting up, carrying on conversations and so on. Still requiring oxygen, but less than yesterday, so that is good. Still in ICU, but they are planning on moving her to a regular room if all goes well today. Meanwhile, I am sitting here in the hospital, adulting by changing banks and swapping bill pay on like 20 accounts. Nothing like doing that while in your wife’s hospital room to realize just how precarious your financial situation really is.
Friday, June 12, 2015 at 8:23pm: The doctor just came by. Renee is still on oxygen but greatly reduced. She was moved to a regular room this afternoon, and is taking her first shower since Tuesday night. If you know Renee, you know how happy this makes her. If she has a good night, she will probably be taken off oxygen completely tomorrow, and if she tolerates that, be sent home.
Saturday, June 13, 2015 at 1:21pm: Renee is now off the oxygen, and only on “room air”. They are seeing how she tolerates it, and will be walking her around the hallways shortly. Assuming this works out, she could go home today. EDIT: After 30 minutes, we are back on the oxygen, albeit at a very low rate. #Dammit
Saturday, June 13, 2015 at 3:10pm: Just talked to the doctor. At least one more day in the hospital. Still on oxygen. I just can’t even.
Saturday, June 13, 2015 at 3:30pm: I bet I have eaten out more in the last week than I have this year. This is incredibly expensive.
It is also a mere foretaste of what life surrounding transplant is going to be like, and also I think, indicates I need to rob a bank or something. (I am also aware that I am being a bit whiny right now, and I thank you for putting up with it.)
[We went home Sunday.]
Monday, June 15, 2015 at 3:28pm: Shit is getting real. Basically, Renee is now much higher on the priority list for heart transplant.
False alarm
[We got a call at 6:30am, telling us they had a heart for Renee. Oh shit! We scrambled like mad people, got to the hospital an hour away, was there like 2 hours and got sent home – there was something wrong with the potential donor’s heart.]
Tuesday, July 14, 2015 at 1:08pm: Spent the morning at Duke Hospital, thinking my wife was going to have a heart transplant. That didn’t pan out, so now I am back at work. #EmotionalWhiplash
We Get The Call
Day 1
Tuesday, August 11, 2015 at 3:28pm: Dear friends, This morning we got a call from Duke Hospital in Durham, telling us to come in because they had a heart for Renee. I came home from work, and we ran around like crazy people, grabbing clothes and feeding the cats and rushing out the door. We have been here once before, and it didn’t work out, so we waited until we were pretty sure it was going to happen before we let anyone else know. We are now here at Duke, and if it all works out, surgery will happen late tonight and we will be here at least ten days or so, maybe longer.
Obviously, our lives are going to be hectic for the next 24 hours, while they give Renee a new heart and I pace the floor, trying to embrace my powerlessness (and failing). We are going to need lots of help over the coming weeks, and as we do, we have no problem asking for it.
Right now, though, we are focusing on the tasks in front of us and taking it a minute at a time. I won’t be super available by social media today, so don’t feel offended if I don’t respond – things are a bit nuts here. We appreciate your prayers and good thoughts today while Renee goes into surgery – we go into this knowing we are loved and blessed by our friends.
Please keep the family of the donor in your thoughts and prayers as well – we are very mindful of how much the gift of a heart for us cost them.
Peace and all good, Hugh & Renee
Tuesday, August 11, 2015 at 6:35pm: A quick update about Renee Hollowell: We are in pre-op, still waiting. It will more than likely be near midnight before the actual surgery starts. When it does, it is an 8- 10 hour surgery, assuming nothing goes wrong. In other words, don’t be shocked if you don’t hear anything from us until mid-morning or later.
Renee and I are reading your comments and notes and messages to each other, feeling very loved and supported. Thank you all very much.
Also a reminder that I run an organization that is going to be leaderless for a while. While I have full confidence in the team at Love Wins Ministries, they are going to need some help. If you are local and want to help out around the place, we appreciate it so much.
Renee on the phone with her dad, while waiting to go back for her heart transplant.
Day 2
Wednesday, August 12, 2015 at 1:32am: Keep watch, dear Lord, with those who work, or watch, or weep this night, and give your angels charge over those who sleep.
Tend the sick, Lord Christ; give rest to the weary, bless the dying, soothe the suffering, pity the afflicted, shield the joyous; and all for your love’s sake. Amen. #KeepingVigil
Wednesday, August 12, 2015 at 3:17am: Grateful for the love and prayers around the country tonight while they operate on my girl. 8-10 hours of surgery feels almost like forever. The only wealth in this world is friends. #KeepingVigil
Wednesday, August 12, 2015 at 6:33am: Renee is out of surgery and, so far, doing well. We spoke to the surgeon, and he said the surgery went well, and he feels good about her recovery.
She is going to be sedated heavily for the next 36 hours or so. Right now she is being transferred to ICU, and I will be able to see her in about 2 hours. I predict I will crash shortly after that, so right now I am going to grab some breakfast while I can.
I am grateful for all of you, and thankful especially for those who sat up part of the night, keeping vigil with me.
Weeping may endure for a night, but joy cometh in the morning.
Wednesday, August 12, 2015 at 1:59pm: UPDATE: Renee Hollowell is heavily sedated, but doing well, all things considered. The right side of her heart is having to learn to adjust to the higher pressures in her lungs, so they left the sternum open to allow it time to adjust – they will finish wiring that closed tomorrow if all goes well. The pain from that is a huge reason for the sedation.
She will be sedated at least through Thursday night, perhaps longer. I got a good 3 1/2 hours of sleep, and feel great. The staff here has been amazing, all the way around, without exception. The surgeons are among the best in the world, and the amount of concern for our well-being (not just Renee’s) is truly amazing. I am thankful for these people, who feel called or led or what-have-you to this work. They are a tremendous gift.
My best friend Brian got in the car and drove four hours after we got the call yesterday to sit with me last night and tonight, to, as he put it, make sure I remember to eat and sleep. I can’t imagine having done this without him. His presence was a great gift to both me and Renee’s family.
Starting about noon tomorrow, I will be up here by myself, so if folks want to stop by for brief visits sometime between then and the end of the week, they would be appreciated. Just send me a FB message or email (hughlh at gmail)
I am grateful for all the ways people have reached out, as well as the practical things they have done. Please know I am grateful for you, even if it may take me a while to get back to you. Renee and I are loved far beyond our deserts.
Peace and all good, HH
Wednesday, August 12, 2015 at 6:06pm: Wednesday afternoon update: Renee is doing well – neural responses are good, earlier she was running a fever but they got it down.
Still zonked out, as she will be for at least the next 24 hours, maybe more. The transplant team is happy with how things are going. I am especially thankful to all of you who have reached out to the staff of Love Wins Ministries to see how you can help while I am tied up here. Knowing that people love you and have your back just takes fear away, you know?
“Love and ever more love is the only solution to every problem that comes up.” ― Dorothy Day
Day 3
Thursday, August 13, 2015 at 9:44am: Thursday morning update: Renee is responding well to treatment. She is still heavily sedated to allow her time to recover, but they wake her up periodically to check her responses to stimuli, and those are going well. She told them (via the squeeze the hand test) that she wasn’t in pain, for which we thank the drugs. As I mentioned in an earlier update, they did not fully close her chest due to swelling (this is typical in these cases) and they thought it might happen this afternoon. That has been now pushed back to tomorrow. She will remain on heavy sedation until after that. If you want to come see us, please email or fb message me in advance, so I can make sure I haven’t ducked out to the Starbucks or something when you come. That said, we welcome friends for short visits. We are in the Duke Medicine Pavilion, on the 7th Floor (West Side). There is an amazing waiting room staffed by a helpful desk person, who will call the room and let me know you are here.
Speaking of the staff here – without exception they have been amazing, professional and, most helpful to me, non-anxious. As Renee’s primary care-giver until now, I feel largely useless here, and they have answered all my countless questions, paid attention to my many concerns and asked my opinion on things as regards to what is typical for her. I suspect this last item is to allow me to feel useful, but I am willing to embrace the delusion. I reached a point last night where I realized that these people not only are keeping her alive, but they saved her life, and have given us many more years together. I now have a near irresistible urge to hug them all, but I am pretty sure that is boundary crossing. 😉
I am grateful and appreciative of the many, many offers of help. As a person with ADHD, who has a really hard time prioritizing and sorting, but who also needs a lot of help right now, I have a favor to ask. If you could offer a specific thing I can say yes or no to (like, “Hugh, can I buy you supper on Friday”, or, “Hugh, could you use a place to come shower on Friday?”) it is much easier for me than the extremely nice, but difficult for my brain to sort, “Hugh, if you need anything, call me.” I just know me and my brain, and if you don’t give me a yes or no choice, I will probably not reach out at all.
Much love for all of you. I read your Facebook comments to Renee. The nurses say she probably can’t hear them, but I am choosing to embrace this delusion as well.
Since the transplant means we won’t get to the beach this summer, I thought I would just take a picture of my feet now and get it out of my system.
Thursday, August 13, 2015 at 7:03pm: Before transplant, Renee Hollowell and I had a lot of hard conversations, ranging from what I am supposed to do if she didn’t come back from the OR to how I am supposed to clean the house before she comes home. One of those conversations was about how much I am allowed to share with you guys.
I don’t talk much about Renee online, because she has always been fiercely protective of her privacy, especially being married to a semi-famous gospel preacher that talks on the internet a whole lot. But one of the things she wanted – in fact, that we argued about, and she won – was for me to tell the truth, and she insisted I not shelter anyone from the hard things. She really wants to demystify this for those on the list, the same way her sister’s transplants helped demystify it for her.
She specifically told me I should post pictures of her while sedated. Even so, I only shared them with family members and gave them the choice.
This is what Renee looks like right now. I am about six feet away, trying to stay out of the way, but this is my view. The doctors tell me this is the good side of normal for this stage, but to be honest, it is as scary as hell.
Renee unconscious, post-transplant. We had to keep her sedated for 72 hours to allow her body time to heal, and to allow the swelling to go down.
Thursday, August 13, 2015 at 9:38pm: Thursday evening update: Renee continues to improve. Her fever hasn’t returned, and her blood pressure, which jumped up a bit this morning, has returned to normal levels.
Her heart is working all on its own, without a pacemaker, for the first time since she was 13 years old. Life is a miracle. They continue to say she will have her chest closed tomorrow – what they are not saying yet is when. But after her chest is closed, she will be awakened, be breathing on her own and, within a short time, on her feet, walking the hallways. And 10 days or so later, home.
I weep sometimes, sitting here, watching her chest rise and fall. The nurse saw me do it earlier and asked if she could get me a chaplain. I told her it wasn’t necessary, as I had seen three pastors today and had two coming by tomorrow. She looked at me strangely and walked out. It is the truth, though – I just have lots of friends that are clergy.
Some people have asked about my self-care in this. I walk the hallways and sit in the gardens here. I am reading a lot. And while I don’t have the words to pray much right now, I am focusing on knowing I am loved, as is Renee.
In the second chapter of Mark, Jesus heals a man not because of his faith, but because of the faith of his friends. Right now, I am counting on the faith of our friends to see us through.
As always, visits are welcomed. I am beginning to reach out to folks and ask for specific things – if I haven’t gotten to you yet, I will. The next 10 days or so we are here is relatively easy compared to the month or so after that at home. We will need so much more help then.
Grace and Peace – eventually.
HH
Day 4
Friday, August 14, 2015 at 11:26am: Friday Morning Update: No changes in Renee’s condition overnight. But the reason for the delay in this update is that, this morning, she went back to surgery and had her chest closed. It was a fast surgery, so they sort of “fit you in” as space opens up in the OR.
They have done five transplants since I have been here – our surgeon has done three of them himself. Which speaks, I guess, to the level of expertise there is here. I have no doubt that the people here are among the best in the world at what they do. The gratitude I have for them is boundless.
Among all the other benefits, closing her chest makes her less fragile and easier to care for. Last night they had to remove a cooling blanket from her bed, and it took six people to lift her to do it. Normally, one nurse could do it alone. The next step is to step down her sedation meds and then remove her breathing tube – which should happen this afternoon. And after that, it’s off to the races – they will push her to be on her feet shortly after that.
Overnight they did her neuro checks, where they wake her up and check neurological function. This is one of my favorite parts – she opens her eyes and squeezes your hand and you talk to her and you know she hears what you are saying.
So, while she was near conscious, I told her about all of you, and that the kitties were OK, and that Dave went through surgery and had an artificial heart, and that Brian had sat with me and that all of you were taking care of me, and thus, her. I hope to have more to tell you this afternoon, but it is so far nothing but clear skies here.
Friday, August 14, 2015 at 7:23pm:I’m not gonna lie. I am straight up bawling over here. #GotMyGirlBack
Friday, August 14, 2015 at 9:22pm: Friday night update: I am short on words right now – Renee had her chest closed today, she was awakened from sedation and had her breathing tube removed.
Today was a good day. She is doing great – she is breathing on her own, she is alert and talking – albeit a bit groggy. She understands what is going on and is carrying on a conversation. In short, she is, in every sense of the word, alive.
They say that more than likely, she will begin walking the hallways tomorrow. She has a lot of hard work to do before she comes home. I am, honestly, a bit weepy right now, so I am signing off and will fill you in more in the morning.
Take care of yourself, and hug the people you love. Trust me on this. HH
Day 5
Saturday, August 15, 2015 at 8:26am: Saturday morning update Renee had an uneventful night – which is good. I slept in two hour snatches, waking up each time someone came in the room to check on her, but still got more than six hours overall. After the last week, that feels luxurious.
She is alert, talking and advocating for herself. She is very tired, and is sleeping a lot, but when she is awake, she is fully Renee.
The goals today include weaning her off of some of her transitional medications, beginning to drink water again (she is currently not allowed anything by mouth), pain management and… walking! Of these, she is most excited about pain management and least excited about the walking.
The pain medication she is on helps, but the things she can take when she is allowed oral medication will work better, and last longer. After the weekend, she should be able to tolerate visitors, so please reach out if you want to come by and visit. I think it will help her spirits. Likewise, she loves getting cards – they can be sent to: Hugh and Renee Hollowell PO Box 26874 Raleigh, NC 27611 She CAN’T have flowers or plants here, so please keep that in mind.
I am overwhelmed with emotions around all of this. In one way, this part is easier – perhaps five times in our marriage I have been the husband at her bedside while she recovers from an operation, advocating for her and providing a non-anxious presence.
In short, I feel like I have been here before, and that makes it easier. On the other hand, this time is very different, as there is so much work in front of us yet. And then going home, where there will be even more work, as well as a return to real life, to work, to routine – to a new routine. To our new normal.
And recognizing that our new normal will be unlike anything we have experienced in our marriage thus far. For example: I am in New York a couple of times a year for work, and love it there. Renee has always wanted to go, but the countless blocks of walking, the stairs to the subway and the general lack of handicapped facilities have made that difficult to plan for.
So, part of our new normal means someday soon, I will be able to see the Statue of Liberty, Central Park and 8th Avenue with my girl. A new normal. Everything is new.
“Then I saw a new heaven and a new earth; for the first heaven and the first earth had passed away… And the one who was seated on the throne said, “See, I am making all things new.”
Saturday, August 15, 2015 at 10:11pm: Saturday Night Update: Renee is alert and conscious, still groggy but cracking wise with her dry wit. She has slow moments due to the pain, but they are working on pain management, and are trying to stay on top of it. She spent the first half of the afternoon sitting upright, and then they helped her stand up and walk two steps to a chair. She sat there a few hours, and then walked 10 steps to get back in bed (They had moved the chair – tricky folks). She is exhausted but pleased with herself.
She had Facebook messenger video conversations with family members – well, it was more like show and tell, since her voice is still weak – but it did her good to see them. I am tired, but grateful, basking in the glory of friendships and countless acts of love and community.
To all of you who have reached out, donated money, sent gift cards, bought my meal, sat in the waiting room with me, went with me to Starbucks and volunteered at Love Wins Ministries while I have been gone – Thank You.
Thank you for giving me this time with Renee, for letting me not have to worry about the demands of the real world while Renee experiences a medical miracle.
Peace and all good, HH
Day 6
Sunday, August 16, 2015 at 10:27am: Sunday Morning Update: I woke up in the middle of the night from a deep sleep to a sound I haven’t heard since Tuesday night –Renee, with a loud and clear voice, carrying on a conversation.
The nurse had came in to check on her, and Renee was wide awake and asking questions. I wasn’t needed, so I just lay on the bench that has been my bed the last few days and listened to the sweet sound of Renee self-advocating and taking care of herself. It has never felt so good to know I wasn’t needed.
We spent the morning looking at pictures on my phone – emailed pics of the cats, pics of our friend who had his heart removed and an artificial heart installed, pictures of friends on Facebook. She told me her vision had been really blurry until last night sometime, when it cleared up. We are walking the line between too much pain medication, which knocks her out, and too little, which renders her senseless. But when they have it just right, she is perfectly Renee – maybe more perfectly Renee than I have ever known her.
They have completely weaned her from epinephrine, which was there to aid the new heart function. The new heart is ticking away exactly like it is supposed to.
Today looks to be a busy day. They are removing medications and hoses, they are removing the Swan Catheter (a big deal) as I type this, physical therapy is coming by this afternoon to get her walking in the halls and, if all goes well, she will be off all breathing treatments by tonight. If the trend continues, she will be moving to a step-down unit tomorrow afternoon sometime.
Grateful as we are for everything, we will still need lots of help in the days ahead. And one last thing – I am passing the time reading your positive messages with her.
If you have something to say to Renee, leave a comment on this post as if you are speaking to her: I will make sure she sees it.
As the man said, “Don’t worry about a thing, ‘Cause every little thing gonna be all right.” HH
Sunday, August 16, 2015 at 10:37pm: Sunday Evening Update: Today was mostly a good day for Renee. There is some frustration that she is so groggy all the time – the current thinking is that her pain medication is too high. She feels it too – she is now insisting they only give her Tylenol during the day as a way of clearing her head.
Despite the grogginess, she still made progress today. The Swann catheter came out, she was weaned off her breathing treatments and the additional equipment that was supporting all of that has been cleared out of the room. She walked down the hall today – perhaps 50 or 60 feet – and, when she is awake, is clear and alert. She just needs to be awake more. All of the nurses and doctors are praising her numbers and how well she is doing.
It does look like at least another full day or two here in ICU, though. Renee and I discussed it and decided that starting Tuesday, I will be spending some time back in Raleigh each day. There is a lot of work to be done to get the house ready for her to come home, and most of that is on me. (The cats are totally lazy and contribute nothing in exchange for their living there. At least the chickens provide eggs.) Those of you expecting to help with that should get emails soon.
When that happens, I will probably downshift to only one of these updates per day. I appreciate all the notes and messages. At this point, there is no way I can keep up with them. Please, if I have ignored a direct question, please, try again.
It has been amazing to me the way Renee’s story has connected with so many people. I have more than a dozen messages in my Facebook Messages right now that begin with, “You don’t know me, but…”
Here is hoping for a restful, uneventful, night. HH
Monday, August 17, 2015 at 10:34am: Monday Morning Update: Overnight went really well – other than waking up at 3am for a chest x-ray, Renee slept through the night. At 5:30 this morning, she was wide awake and at 6:00, went for a short walk. At 9:30, she walked around the hallway – some 450 feet. I captured that in a picture further up my timeline.
As I write this, they are removing one of her chest tubes (leaving only one) and have already removed all supplemental oxygen. She is breathing only room air.
Renee forgot her glasses when we came here, which normally isn’t a big deal if she isn’t driving. However, when we went for a walk, she swore she saw a deer in someone’s room at the end of the hallway. This alarmed the team, as they thought she was hallucinating.
Turns out, it was just a rack of hoses and tubes, which cleared up as she got closer.
Avoiding pain meds has helped with the grogginess, and she is tolerating the pain with just Tylenol so far. She is having bad headaches, but that is probably due to being waned off all the chemicals she has been living on the last few days. And right now, they are so pleased with her progress they are looking for a step-down room to put her in later today.
So things are looking good – really good. It is hard to remember that one week ago today was a perfectly normal day for us – a day when we were just “on the list”.
We had known this was coming, obviously, but had no idea it would happen so soon. Over the preceding weekend we had ripped all the carpet out of a room that we intended to turn into Renee’s room – a sort of art studio-cum-sitting room for her to recover in. But we didn’t get finished, and so there are boxes everywhere and a pile of now wet carpet on the porch and all of that.
When Renee got the call, she looked around and said, “The house isn’t ready for this yet.” So I am going home this afternoon, and will be spending some time at home every day in the days ahead to get Renee’s room ready for her. And if you have a truck and want to carry some boxes to Goodwill for us, let me to know – I could use the help.
We know the hard work is just beginning, but we aren’t scared. With such a cloud of friends around us, how could we fail?
Renee listening to her new heart for the first time. #AllTheFeels
Day 8
Tuesday, August 18, 2015 at 12:54pm: Tuesday Update: (Updates are coming once a day now, unless something major happens.)
Life is good, and so is Renee. A week ago this morning, we got the call and arrived here at Duke. What a difference a week makes. I went home last night and slept so hard it was ridiculous. Nearly 8 hours of deep, solid sleep is a beautiful thing after 5 nights on that bench thing in ICU.
When I came in this morning, she was walking laps in the hallway- she did 2 laps in a row, or about 800 feet total. All the staff is impressed with her resilience. She walks with a walker, but here in the room can walk to the bathroom with only someone to hold her hand.
They are dropping meds left and right – she comes off the dopamine today, and had her last remaining chest tubes withdrawn this morning. Just a couple of IVs in her arm is all that remains. After a few days of dragging hoses and lines everywhere, it is pretty amazing.
Some of you may have noticed – she is on Facebook again but in a pretty limited way. She gets tired easily, so if you send her a message or post on her wall and she doesn’t get back to you, don’t be slighted. She spent most of yesterday afternoon getting caught up on all your posts and well wishes. It was a pretty emotional afternoon for both of us.
Tomorrow is a big day for Renee – it is her first biopsy (she will have them weekly for a while) and it will dictate a lot of her near-term future. It will tell us if there is any rejection, and will also, to a large extent, dictate how long Renee stays here. The absolute best case, Jesus loves us, best scenario is Friday or Saturday of this week. It could be much longer, of course.
I went home last night to work on Renee’s room. The house is still there, and the cats were excited to see me. Very little got done on the room, but that is mostly because I dozed off while sitting on the couch, and woke up and went to bed. I am home again tonight because I have something work-related tonight I can’t get out of, and from there it is 5 minutes to home and 40 minutes to here.
I have to be honest – I am freaking out a little about having the house ready for her, and all of that – I will probably stay home all day Thursday and just work on that. I am trying to focus on her positive reports, and not focus on the mounds of medical bills we are racking up and the weeks of aftercare that are coming.
Yes, I know all y’all want to help, and information on that is coming. I am just focusing right now on not freaking out. You see, I am a post-processor, which means that as long as we are in crisis, I do great. Now that the crisis is calming, I am going to have to deal with everything I have locked away for the last week.
One of the things for which I am most thankful the last week is the Starbucks in the lobby here at the hospital. It is a real Starbucks – with earth tone colors, faux leather furniture and slightly over-roasted coffee.
Inside of there, it feels like every other Starbucks I have been in – I could be in Boise or Manhattan or Memphis. It is a soothing, normalizing experience to do something so normal as to order a Grande cup of Pike’s Roast, with some room for cream. They are open 24 hours a day, so it has been my touchstone place the last week – I have been there 4-5 times a day. (And thank all of you who have sent Starbucks gift cards. You guys have helped me keep my sanity.)
Peace and all good, HH
Day 9
Wednesday, August 19, 2015 at 2:56pm: Wednesday Update: Renee is continuing to improve. We are now one week since the transplant itself – it was 6:30am on Wednesday the 12th when she left the operation room with her new heart. They say the younger you are when you have your transplant, the faster you recover, but this seems amazing to me.
She is sitting in her recliner in the room most of the day, with excursions to walk the hallway and to get up to go to the restroom. She does easy laps around the hallway now, chatting the whole time. Renee has never, in the eight years I have known her, walked and talked at the same time – she simply couldn’t.
While I am writing this, we are waiting for her to get her first heart biopsy. This is a test she will take often – weekly for the first month and then bi-weekly for a while after that – that tells us whether her body is rejecting her new heart. The results of this test will determine when we get to go home, but we won’t know the results until tomorrow.
I am working on the house when I am not here – there are lots of things to prepare for Renee’s arrival. One of the best things for Renee’s recovery is that she maintain her physical activity – but she can’t go to the gym for a while, because of her compromised immune system.
We bought a recumbent bike today on Amazon, to put in the spare room for her to use in her physical rehabilitation. Thank God (and the many folks who have sent Amazon gift cards) we had just enough gift cards to cover it.
While I am on that subject – the bike is just one example of the many “not medical and thus not covered by insurance” expenses we are having right now, and will have for the next few years. Thank you for all the people who have sent gift cards – Amazon and otherwise. We really do appreciate it, and they help more than you know.
Tomorrow I should know more about the results of the biopsy and have a good grasp on discharge dates. #FeelingLoved HH
Day 10 Friday, August 21, 2015 at 11:24pm: Friday update: We were released from the hospital around 4PM, after Renee was disconnected from the monitors, had the last of the IVs removed and a parade of doctors, pharmacists, nurses and Physician’s Assistants came through, each with instructions and often, papers for us to take home. But finally, the last paper was signed, they called the orderly with the wheelie cart and us, many more bags than we came with, a walker and a bedside commode made our way down to valet parking to load up the family truckster and make our way home.
And now – we are home, Renee is sorting her mountain of medication and the kitties are up to their typical shenanigans. I made chicken tacos and we had dinner and everything felt remarkably… normal.
Except, it isn’t anything at all like normal. We have a pile of medicine on the kitchen table that says it isn’t normal. We have a bedside commode and a walker (both of which should be temporary) that says it isn’t normal. She fell as we came in the house, part laughing and part crying – not normal.
And Renee has a heart in her chest with no wires attached for the first time since she was 13, a heart beating so strong she says she can hear it in her ears. Nothing is normal. Scary? Yes. Amazing? Absolutely. Emotional? You have no idea. But nothing at all like normal.
The last 10 days or so have been life altering – for both of us. Renee has a new heart, I have a new wife. I told one of the doctors today that Renee walks and talks now – she never did before. I told him that I thought she was just quiet, but maybe she isn’t – maybe it was just hard for her to talk. I have never been married to Renee as a person who could be active.
She has never not needed me to help her. We are new people, in a new phase of our lives, looking forward to our new normal. We have felt tremendously loved over the last 10 days.
I don’t have the words to say everything I feel toward the folks who have prayed for us, loved us, called and texted, sent gifts and cards, donated cash and sent gift cards.
Especially the gift cards – they made survival possible. I ate my first meal at home tonight, after eating out for 3 meals a day for 10 days. Chicken tacos have never tasted so good.
The struggle isn’t over – in fact, it is really just starting. I had to call a friend tonight to sit with Renee while I went to the store – that sort of thing is going to have to happen a lot over the next few days.
Renee had the following conversation with the pharmacist:
Pharmacist: That medication is $94.
Renee: I thought insurance was supposed to cover it?
Pharmacist: Your insurance paid $1156 dollars of it.
Wow. Thanks, Obama. We are looking at so many medical bills in the weeks to come. The number of medications she is on is staggering. Just her moving around out little house is a challenge.
One day soon, I am going to have to go back to work. Life doesn’t stop just because your whole world changed.
This will be my last scheduled update – life at home moves at a slower pace (hopefully) than life at the hospital.
I will resume my regular programming – being the lovable curmudgeon whose love language is pot-stirring. I have been touched by the response to my daily posts – I am collecting them and will eventually publish a slightly edited version of them at my blog as a daily diary of such.
Given the reality of our financial situation, there will probably be a gofundme in our future to help with the medical bills. So much to be scared of. So many reasons to be afraid. But, at the end of the day, what matters to me is my girl got a new heart, and that is worth any amount of fear.
And we are always mindful that the reason she got that heart was because someone decided to donate their organs, paying the gift of life forward.
That a family we do not know engaged in an act of pure love – they didn’t love us, they just loved the idea of us – and to them, that was enough. And we are grateful.
The future is bright. And filled with fear. And so much love. According to John, love casts out fear. I am not just hoping that is true – we are counting on it.
Take care of yourself. And each other. HH
* * *
That was almost seven years ago now. Her recovery has been textbook – she hasn’t had an unplanned visit to the hospital since we left it that day, and all her signs and markers are great. She goes for a walk or swim most days, and we are now living our delightful, quite boring (in a good way) life.
I tend to be very pragmatic. It’s not that I don’t have room for the supernatural: It’s just that it has, in my experience, often been used as an excuse by people who don’t really want to actually take tangible action.
Many is the time when I have been faced with needs that surpassed my abilities and have asked for real, tangible help – Help me get this person fed. Help me pay this person’s light bill. Help me get this person a job. Help me get this person some clothes. – and I have been assured of their prayers.
They often reply to my Facebook request with a hasty “Praying!”, apparently in such a rush to get on their knees and beseech the Almighty on our behalf that they can’t use sentences. The fervent prayers of the righteous may avail much, but in my experience, landlords require negotiable tender.
My friend Kathy once wrote a fundraising letter, and when someone replied that they were praying for her organization to have the resources they need, she replied back that their prayer team was full, and they really just needed somebody to write checks.
That said, I have had experiences I cannot explain pragmatically. As my buddy Brian said, I hate it when my experience of God contradicts my theology. So, I try to be open minded, especially as I strive hard to not yuck somebody else’s yum, and I never want to take away something that brings somebody comfort.
This has led me to interesting places over the years. Meditation retreats. Sweat lodges. Pentecostal worship services. Folk slain in the Spirit. Other folk speaking in tongues. Prayer walks. Beads. Dream catchers. Familiars. Teas and tinctures. Spells. Healing services. Oil anointing. Tibetan singing bowls. Sitting with the dead.
All of which is a preamble to my friend Amy, who several weeks back mentioned she was starting up a book group around The Artist’s Way, and did I want to be part of it.
Which is how I have ended up writing three pages longhand every morning for the last two weeks as I lean into the program, which involves, among other things, writing three pages longhand every morning, in a ritual they call Morning Pages.
Now, I will confess, it seemed somewhat silly to me, but I am doing it. And because I have learned that rituals are important, and the more I take a ritual seriously, the more value I will get from it, I have tried to ritualize it as much as possible.
The same time, every morning. The same notebook, that I don’t use for anything else. I bought a special pen that I use for writing these pages, and I always start them the same way. In short, I am taking it seriously.
Now, I don’t know if this will “work”. In fact, I am unsure how I would know if it did work, or define what I expect it to do. But I can tell you that somewhere after day 7, it ceased to be a chore, and now I actually look forward to it. And the other day, I kept going after my three pages were done, because I had more stuff still waiting to come out. And Friday morning I had an idea for a book come to me while I was doing it, for which I have since done a rough outline.
And I’m just getting started – I committed to another 13 weeks of this. And while I can’t make a pragmatic case for it, I guess it doesn’t hurt to be open to the woo-woo, either.
In 2014, due to the generosity of friends, we had our first (and to date, only) trip out of the country together. Together, we went to Costa Rica, where we stayed with some friends in an amazing house on the side of a mountain near San Juan, overlooking a coffee plantation.
We had several adventures on that trip, and we have some amazing pictures of what was truly a paradise. We played with monkeys, stood in the Pacific Ocean, walked through ancient churches, and met some amazing people with whom we shared long meals and laughed much.
But my favorite part of that trip was that we took what has become my favorite picture in the world.
There is so much I love about this picture. Let me explain some of them.
I guess the first is that smile on Renee’s face. We had been married for almost 5 years at that point, and we were finally on a big trip together. One thing we do well together is travel, and this was (and still is) our biggest trip. She took a big risk marrying someone who does the sort of rarely well-funded ministry things I do and we honestly never expected to be able to go to a place that is legitimately considered paradise.
And then there is that scar peeking out from under her shirt. When we were dating, her heart began to show symptoms of the heart disease that killed her mother, and she had to get a pacemaker with a defibrillator, to shock her in case her heart stopped. Before she would get a transplant a year after this picture, it would shock her at least 8 times, saving her life multiple times.
Her health was precarious in those days. Two weeks before this trip, she had had an ablation to prevent the wild rhythms her heart would swing into. But more about that in a minute.
Another thing is that we are there, in literal paradise, because of friends. It is a reminder to me that I get to do work that some people find valuable, and because of that, they invest in me and us and want us to have good things. This trip happened because people loved us, supported us, and invested in us. The wealth that sent us on this trip was the wealth that comes from friendships and community.
You see those glasses she is wearing? Those were $14 frames from Walmart she bought because that was all we could afford at the time. It sent me into a spiral of depression that, because of my career choices, she could not afford “nice” glasses, but for the years she wore those, she got compliments everywhere we went, and she would light up. I don’t know that $1000 frames would have ever made her happier.
I bought her that handbag early in our marriage. It was handmade by a Raleigh designer, and we had seen it in a shop downtown while window shopping. It was more than $150, which was a huge amount of money for me then, but I had seen the way her face had lit up when she saw it, and I knew I had to get it for her.
And let’s not forget that this picture is taken in front of one of the most beautiful waterfalls in the world, in the cloud forest of Costa Rica, in the middle of a wildlife preserve. The roar of the water, the mist that hits your face, the sheer amount of biodiversity around you – the toucans in the trees, the birdsong as you walk through the woods – it really is the most beautiful place I have ever been.
But the main reason this is my favorite picture is none of those things. It is because of what happened within minutes of this picture being taken.
The day this happened, we were at La Paz Waterfall Gardens in the highlands of Costa Rica. It is an amazing place, with a wildlife preserve, an aviary, and this long, winding trail down into the valley, past the waterfall, and back up again.
This picture was taken and almost immediately, her heart went into one of its wild rhythms it used to do in those scary days before she was transplanted. This would present itself as crushing chest pain, fatigue, and shortness of breath.
We had walked for more than a mile at this point, all downhill. When it happened, we had no choice but to walk out – more than another mile forward, all uphill, with probably 500 stair steps in various places. It was walking a few steps forward, and rest. It took us hours to cover what should have been 30 minutes or so.
We had no real choice – we were at the bottom of a valley, on a trail barely wide enough for two people to walk side by side. The only way out was through.
But she did not complain. She gutted it out like a boss, and worked her way, slowly but persistently, up the side of that mountain with a heart doing a thing that, under other circumstances, would have sent her to the emergency room. The image of her forcing herself up the side of a mountain in the jungles of Costa Rica is a funny one to anyone who knows Renee, but don’t be confused – I married a woman who, when she puts her mind to it, is unstoppable.
And all of that is why this is my favorite picture.
Maybe it was taking Nancy off the ventilators and watching her die as a result of the drugs she just couldn’t beat. Maybe it was when Liz died when relapsed and someone gave her laced heroin. Or before she died, when she was severely sexually assaulted and then went back to the guy who did it. Twice.
Or maybe it was when Eric was murdered in front of me, or when I visited Steve in jail after he killed another guy, or when I watched the woman I promised I would sit in the dark with, die while I watched.
But I don’t know. Maybe it was when trusted employees tried to destroy what I had spent years building, or when I got pulled out of the mothballs when the news needed a talking head on the 10th anniversary of my friend Martha’s murder, or maybe it was just when I realized the big church that wouldn’t give us any money was going to keep referring people to us.
I don’t know when it was, exactly. But at some point, I burned out. I just couldn’t watch my friends die anymore. I just couldn’t keep going. But at the time, I didn’t know that, either.
Twelve years. For 12 years I did that work. I was the person you called when you had no one else to call. Sometimes that looked like fighting the hospital bureaucracy that wanted to discharge you to the streets when you had no home and sometimes it looked like fighting the city that said you didn’t deserve to eat, but for 12 years, I was that guy. I was really, really good at being that guy, too. Hell, I even liked being that guy.
Not long ago, I tried making a list of the people I loved who died from poverty in those 12 years, but they all tend to run together after a while. I know it was dozens. Sometimes they visit me in my dreams. Every winter people I loved would freeze in the woods, and we would find them after the thaw. I still get triggered by snow – I feel anxiety creeping into my bones when I watch the winter weather forecast.
I taught classes on self-care, but like many before me, I was better at coaching than I was playing. It isn’t that I didn’t have good boundaries – I did, and do. I just didn’t know when to quit. I didn’t know how to stop.
In 12 years I had one vacation that lasted more than a week. The first five of those 11 years I barely made minimum wage. My wife had a heart transplant in 2015, and within twenty-four hours I was doing crisis management on the phone while she was in a medically induced coma beside me.
It wasn’t that I was bad at my job – I was really, really good at my job, actually. I was just tired. I was tired, but I couldn’t sleep. I had a whole year there where I could not sleep unaided. I would have nightmares when I was asleep, and panic attacks when I was awake.
And then, in 2017, the depression came on like a wave and damn near killed me. I was just self-aware to recognize it for what it was, and I got some help. And once the fog lifted, once I wasn’t standing in the storm anymore, I realized I needed to stop. It wasn’t so much self-care at that point as it was survival.
After the fog lifted that fall, I knew I had to leave. I had to. So, nine months later, I did.
* * *
It was three and a half years ago that I drove a U-Haul 12 hours across the country and pulled up in front of an apartment building that would be our home for the next six months while I found us a place to live.
I didn’t just need a rest, I needed to build something new. I needed to learn how to be a different sort of person. I needed a new way to be Hugh. A way that was kinder to me, and to the people who love me. And it’s happening, albeit slowly.
I’m prioritizing my health these days, which means I don’t get as much done as I used to. Adrenaline is, after all, a hell of a drug. I sleep at least six hours most nights. I prioritize movement, and I’m attentive to what I eat.
Things don’t happen as fast as they once did, and I get tired faster than I used to. They say that goes away over time, and it has some, if slowly. I still have trouble sleeping, but not as much as I used to. I have a lot of anxiety around money, but that has always been true. For years, my fundraising strategy involved crisis, You don’t have to be Freud to see that was unhealthy, even as I try to find sustainable ways and methods to replace it.
My family is a day trip away, and that feels pretty amazing. When Dad died in 2020, it was a tremendous gift to be so accessible, even in the midst of a pandemic. I have always been better at loving than being loved, but these days I am trying hard to learn how to do that, too.
While still committed to justice, and perhaps even more so than before, my work is much more behind the scenes than it once was. I’m on no reporters speed dial. I have more influence and fewer adversarial relationships now than I did in those days. I am pastoring a small group of people who don’t need me to survive, but who just love me because I am me. Unlike my first 12 years of ministry, I can give my home address to people I minister among.
Like all of you, I have had to do this while trying to survive a pandemic. This is exhausting, but a different kind of exhaustion. At least now, I don’t feel like I’m the only one interested in my trying to survive.
And holy hell – I have hobbies now. Things I do for pleasure. I have off-time. I have moments of joy.
Should you find yourself where I once did, I don’t really have any answers for you. I just know that sometimes you can be really good at something, and yet that thing can still kill you. I, unlike many folks I knew, survived. I buried people who didn’t. I don’t know how or why, but I squeaked through, and I made it out the other side.
I’m older now. I am not as strong as I once was, but think maybe I am wiser than before I began. At least I hope I am.
For the last 15 years, my vocation has been doing what my brother once called “do-gooder work”. While officially a pastor, my real work has been around food insecurity, homelessness, drug addiction, voter and healthcare advocacy along with organizing faith communities for the common good. A friend once described me as an “activist preacher, instead of a preacher preacher.” None of that work ever paid very much.
I have always supported my “do-gooder habit” by doing other work: Before the pandemic, I made a large portion of my income from on-site consulting and speaking. In 2020, I had three events cancel outright and nine events that had been rescheduled for 2021, and in 2021, they all cancelled or recalibrated in ways that didn’t involve paying me. In 2021, I turned down work offsite because I didn’t see any way to do it safely for me, as someone who lives with an immunocompromised person.
I’ve filled in around the edges with contract work here and there that didn’t violate my conscience, but as we enter into this third year of the pandemic, I am coming to terms with this being the new normal. I am having to figure out how to make a stable income in a way that doesn’t involve crowds or travel.
And the truth is, as hard as the last 2 years has been, they would have been impossible without my patrons. I don’t talk about it much but I have a team of, right now, 91 folks who support my writing by contributing as little as $3 each month.
What do they get out of it? Well, nothing. That is, nothing that everyone else doesn’t get.
But here are some benefits you all get, because I have patrons:
I have time to do this work. I spend more than 100 hours a month writing and administering the two weekly newsletters and this blog, which is published six days a week. I don’t have 100 hours I can afford to contribute each month for free. Because my patrons support my writing, I have the time to do it.
Related to time, I get the freedom to write the longer posts I want, instead of trying to do a bunch of short posts to game my numbers.
It buys the hosting, computer, domains, and subscription services I need to do this work. I spend more than $200 a month just on email services, whether I send anything or not.
Having established it costs money to publish things like newsletters and blogs, having patrons means I don’t have to chase advertisers as a source of that money.
And that, friends, is a huge win for you. I never have to seek out sponsorships and spam you with pictures of me drinking from a #Yeti cooler or something. I never have to have popup ads, or annoying videos that play in the background.
It also means I never have to consider “maximizing website traffic” in order to appease advertisers, freeing me up to do things like publishing the entire content of my blog posts to Facebook, instead of teaser copy designed to get you to click through.
You know that annoying thing some sites do, where they call an article “10 Crazy Things About X You Won’t Believe!”, and when you do click through, each thing is on its own page, and so you are endlessly clicking and dodging ads for things you have no interest in? Having patrons means I never have to do that.
In short, because I have patrons, every person who engages anything I write gets a better experience. I never have to consider if I am writing because I want to, or if I have to, and you never have to wonder if I really like those solid-color t-shirts I am wearing or if I got paid to say that I do.
There are two bookstores I frequent regularly in my town. One is a huge, suburban chain bookshop, with a café and a music department, an apathetic staff and regular sales and a discount club. The other is a smaller, independent bookshop. The staff is deeply knowledgeable and attentive. They carry niche books that the other shop doesn’t. They have a point of view I agree with, and it shows in how they curate their books. They never have sales, and every single book you buy there, you will pay list price for.
Last year, I purchased 11 books at the smaller shop, at least 9 of which I could have bought at the bigger shop, and all of which I could have bought on Amazon, for less money. So why did I buy from the smaller shop?
Because I want to live in a world where there are independent bookshops. So I pay extra money I don’t have to pay, in order for that independent bookstore to be able to stay open. And because I do that, their employees get to keep their jobs, my neighborhood wins by having a cool bookshop, and authors of small weird books benefit from having their books in a bookshop. All because I, and people like me, spend the extra money.
That extra money I spend when I buy things there is my “vote” for a world with independent bookshops.
That is sort of what my patrons are doing: They are spending extra money they don’t have to spend, in order to make sure I can keep doing this. They are voting for a world with my writing in it. And because they do, you get to read it, and I get to write it.
So, I hate self-promotion, but if my writing is meaningful to you, if you are glad I post the full content to places like Facebook instead of trying to get you to click through to game my metrics, if I have made you smile, if you appreciate the stories I tell or the perspective I bring, I would invite you to consider being a patron, for as little as $3 a month.
Regardless of whether you do or not, know that I am grateful for you, as well as the freedom to write my patrons give me. The only wealth in this world is friends, and in that way, I am rich beyond measure.
My Dad was a quiet man. He seldom raised his voice. He virtually never cursed.
And he was an intensely private man. You would never know who he voted for – you might suspect, but you would not hear it from him. He never, ever, put a bumper sticker on any car we owned.
He shunned the spotlight. His goal was to be both indispensable and invisible, content to do his work well and sure it would shake out in the end. As he told me once, “It is amazing what you can accomplish if you don’t care who gets the credit.”
He probably had undiagnosed ADHD, I am diagnosed, as is my niece, his granddaughter, and it is hereditary. And he bore lots of the signs, if you knew what to look for. And for many of us who have this diagnosis and yet manage any degree of effectiveness, it is because we have developed coping mechanisms.
And one of Dad’s coping mechanisms was his journal. We didn’t really know it existed. I mean, Mom knew he kept notes of things – sometimes she would come in the room and he would be typing on his phone, and if she asked what he was up to, he would say, “Just writing something down before I forget it.”
It was a simple program he kept on his phone, where most days, he would put anything he wanted to remember later. I found it when he died, when we were going through his cell phone. From July of 2013 until two days before he died, there were notes for nearly every day, and some days had multiple entries. Sometimes there were multiple paragraphs, and other days merited a single sentence.
On July 20, 2013 he changed the oil in the tractor, and there was 695 hours on the engine. On August 25th of 2013 he wrote “Hugh Jr was nearly arrested in Raleigh yesterday for feeding the homeless.” For their 48th wedding anniversary, he noted they ate Chinese food at Hunan’s, and another entry that day mentioned he topped off the freon on the AC. They would rent cars to go on trips out of the state, and I know now that in November of 2017, they rented a 2017 Ford Fusion Hybrid that got 43 MPG on the trip to see Mom’s family in Oklahoma.
There were notes related to work – contracts he had signed; purchase agreements he had entered into. The weather figured prominently, as did the grandchildren. We know how much the drill he bought at the pawnshop cost, the interest rate on the truck loan he had been quoted, that Lowes screwed up his order for a new dryer for the house in 2016.
If these seem innocuous, that is largely because I am sharing the non-personal ones, but you get the point. He recorded birthdays and what gifts he bought, where they ate dinner when he and mom went to town, major news events. He noted (without comment) both the election of Trump and the removal of the Confederate emblem on the state flag of Mississippi, the record low temperatures in the winter of 2014, the time my brother’s son was the scripture reader in church, along with the notation that he did a good job.
In short, they were the record of how he spent the last seven years of his life. And it was a tremendous gift to us, even if he had no reason to expect anyone but him would ever see it.
I downloaded the file to my laptop, and the formatting was horrible as a result, but I spent the last six months or so, in odd snatches of time, cleaning it up, and then had it bound for Mom. I gave it to her for Christmas this year.
I don’t know that I really needed to know that Dad had a coupon for Taco Bell that day in 2015, or that the belt for the lawnmower in 2018 cost him $34, or that when the tornado hit our county in 2015 and he worked 3 days straight on virtually no sleep that he kept a record of which reporters he talked to, but I’m glad I know those things now. I feel like I know him in a different way than I did before. There were no revelations, but lots of confirmations. Countless times as I was working on the formatting, I would read an entry and find myself nodding my head, as if I saw that coming.
So, one of the habits I have now is that I put Evernote on my phone, and every morning I open a note with today’s date, and throughout the day I jot down anything I want to remember, in either sense of the word – things I need to have a note of, or memories I don’t want to lose.
We don’t have kids, so I don’t know who will read it, or if anyone ever will. But after seeing Dad’s journal, and the gift it was to us, it just made sense.
In the Before Times, I used to travel to New York City a great deal, and a thing I love to do when alone in a different place is to explore its churches. I’m weird like that. And Manhattan has some amazing churches.
In the church world, churches that have a lot of order and structure to their service (imagine robes, chanting, and incense) are called “High” churches, and churches that do not (imagine a preacher in jeans behind a lectern) are “Low” churches, and most churches find themselves on a spectrum between those two poles. I grew up in a “Low” church environment – my people tended to distrust things like written prayers and creeds and robes.
So anyway, most of the churches I would explore in Manhattan were High churches, which always felt like a different world to me. And sometimes, there would be a service going on when I was exploring, and so I would watch. And on the particular day I want to tell you about, I was in a large Episcopal church that was mostly empty of people when I walked in, but people slowly began to trickle in and sit down in front of the altar, and so I sat in the back of the room to watch.
It turns out they were there to baptize a baby. And the couple and the godparents went up to the front, and the priest came out in his robes, and on the front row was what were obviously the grandparents, or maybe even great grandparents, as they were very frail. And on the end of the row against the wall was an elderly lady who was obviously in some sort of cognitive decline so severe as to be nonverbal.
I tried not to stare, but I found her fascinating. Because while she was obviously confused by her surroundings, she did not miss a cue in the service. When the priest began the Lord’s Prayer, she mouthed along to it in perfect timing, despite the fact that 30 seconds before she appeared to not know where she was. It was as if the ritual of the decades of recitation had worn a groove in her brain that the dementia could not erase.
Yesterday, my mom and brothers came to my house for our Christmas celebration, which we did a week later than normal because of some scheduling problems. It was the first Christmas we celebrated together as a family since Dad died (we couldn’t gather in 2020 because it was before the vaccines were available). His absence was constantly noticed, of course, and his name came up perhaps 50 times in the four hours or so we were together.
I have been dreading it for weeks – not seeing my family, who I love – but the shadow that would be over the gathering with Dad’s absence. But yesterday I realized a thing I had known, but not formulated before: Rituals hold us together.
We ate the foods we had eaten when Dad was alive. My nephew, the family pray-er, said Grace before the meal, like he did when Dad was alive. We sat in the living room after the meal and passed out presents, the way we did when Dad was alive. We told stories to the younger generations of our childhood, the way we did when Dad was alive. In other words, it was a lot like every single Christmas we had when Dad was alive – but Dad wasn’t alive.
It’s not that he wasn’t missed – he was tremendously missed. But the rituals we have developed over time gave us structure and routine that was independent of Dad being there. The rituals gave us things to hold onto, so when we didn’t know what to do, we just did the thing we normally do.
The rituals held us together.
I think about the rituals that we have in our cultures: Easter and Christmas and Passover and Ramadan. Harvest festivals. Graduations. Baptisms. Bris. Bar Mitzvah. The recitations that give us structure: The Apostles Creed, The Shema, The Lord’s Prayer, The Pledge to the Flag.
The times may be good or bad, the fortunes around us rise or fall, but the rituals persist, and adapt, and sometimes shift around the edges, but remain fixed points in a changing, fluctuating universe.
