I watched the news, like all of you, as Harvey and Irma pounded the shores of Texas and Florida. Millions evacuated, powerless to nature’s destruction. I have friends in both states that posted pictures and status updates to their situations. Homes and cars destroyed. Hundreds of billions of dollars in damage. Lives lost. And in the wake of what I witnessed with 2005’s Hurricane Katrina through my family, things will never be the same.

I think what most captures my attention is the surprise from the devastation. We’ve seen hurricanes before. Our meteorologists are better at predicting the storm’s path and its likely havoc than ever before. We know where it will hit, what it will destroy, and what it will cost to taxpayers, insurance companies, and individuals before the hurricane ever makes landfall. And yet the surprise, the disbelief, at what has just happened when it actually does should be bewildering, and yet it is. It’s as if no one saw it coming.

Preparing for a storm and living through one are very different. Witnessing a storm through the testimony of friends and actually experiencing it are not the same.

Tiffanni’s mom, Glenda, was two years from her death when I met her. Huntington’s had taken so much and she lived in a full-time nursing home. I saw the end and I know where the trail leads. But it hasn’t prepared me at all for what has happened over the last nine months. Watching a storm and experiencing a storm are like being in the NBA versus playing a pick-up game in the church gym. And I just can’t keep up with all of the changes. I’ve used this forum to process, to update, and to give me a reflective space to find God in the small things. But I can’t keep up.

The last several months have been jarring- whiplash. Trying to adjust to one change, only for it to last a few weeks and then on to a completely different one is hard. For six years we had slow changes. Enough time to adjust to a new normal before something else would interject a revision of our routine. But this year has been a hurricane. Not one that I watched, one that I’ve experienced.

I get asked every day, “How are you doing?” The truth is that I’m not sure right now. My support system is stellar. My children are resilient. Tiffanni is manageable. But there is an undercurrent of grief just below the surface that I’ve been able to keep at arm’s length. It’s there, bubbling, rumbling, but contained. The changes have been too fast to be able to reflect. Not enough time to adjust before the next evolution. With each change is this adrenaline rush of resolve and before it wears off is another change. So, thank you so much for asking. Your kindness and concern at times is overwhelming. But, unfortunately, I don’t know how I’m doing. I just know that my neck is sore.

The kids started back to school last week. We have an eighth, a seventh, and a fourth grader. That’s recent enough that I remember vivid details about each of those grades for myself. About ten years ago, someone told me that my fourth grade teacher died. I was so sad. I assume that she was older, but I have her frozen in my memory as a great, young teacher. But then, three days ago, I found out that wasn’t even true. She was fighting for her life. I don’t even know how to respond to this because I already mourned her loss- how do you grieve something that you’ve already grieved?

I heard someone say recently, “The years are short and the days are long.” Boy, is that the truth. The years of my kids being home are flying by. In theory, Addyson could leave home in less than five years, however, I’ve already concocted a plan for the kids to stay home awhile longer. Every passing year weighs on me. Did we take advantage of each moment? Did I make enough ballgames? Did I go to enough school things? Did I take advantage of every teaching moment? Should we have read more, applied ourselves more, vacationed more, laughed more, cried more? Did we eat together enough, play board games enough? Did we watch too much tv? Did I take too much time to myself?

For whatever reason, over the last several years, the end of the summer has marked a transition. It is where I reflect over the year, regret some things, celebrate some things, and evaluate Tiffanni’s progression. This year was especially transitionary. It was an amazing year of trips and conversations, sports and retreats, school moments and relationships. It was also the most difficult year of the disease. Tiffanni was her worst and the kids were more aware than ever. I suppose that only continues. I sat with both girls more than once and cried about what they were missing because of her absence. Grieving a loss is hard. Grieving everyday, constantly reminded, newly noticed losses is brutal. And this summer was no different.

Out of all of the things that we did this summer, the one that sits with me, the one that I want to remember forever, the one that I have to write so that it’s never lost is this:
Right after my sister had her baby, my parents were gone for a few weeks doing what good parents do. We were home feasting on what mom had pre-prepared in the refrigerator with some supplemental frozen gourmet. In a moment of creativity, I decided that I wanted the kids to each cook a meal. They could plan the whole thing and executive chef the evening. Appetizer, entrée, and dessert. Their siblings had to sous chef with no complaints or suggestions. Just cut the onion and be quiet.

Each of the kids was ecstatic. Cooking is in their blood. From my mom and grandparents, to Tiffanni and her mom, they get it honest. They went all out. Each trying to top the next, but not so much to outdo the other, just trying to be noticed. Food and meals are important here, so each wanted to offer their contribution to the value. We had so much fun in the kitchen, both creating the meal, which is easily as important as eating, and in celebrating it around the table.

I was so pleased with each of the evenings. Addyson and Brayden each cooked one of my mom’s recipes. Carsyn found an old church cookbook and looked up my favorite meal that Tiffanni regularly made- Chicken Enchilada Casserole. A submission by Glenda Ann Cox. We shopped, prepared, ate, laughed, cleaned, and celebrated life. All while the ever-shrinking summer swirled by.

Here’s to another over-too-quick summer. Another year of movement, growth, and progression- some good, some bad. Another year of laughter and crying, celebrating and grieving. Somehow grieving what we’ve already grieved. Another year of family. Another year of life. Another year of loss. Another year of love.

 

***

 

Last year, I wrote a song called Summer’s End and recorded it on my platinum selling album. It captures some of the thoughts that only music can. I hope that you enjoy it.

I have a love/hate relationship with medicine. Tiffanni takes six different medications every day, four times per day. A different combination to balance her mood, movement, cognition, and motor skills. We know what each of the pills do individually, but what happens when you combine this particular concoction? The body is a brilliant machine and on its average to best days, has the ability to regulate itself. Tiffanni’s body has a hard time doing just that, but it’s not completely unable. So, we cram pills into her hoping to balance its inadequacies, and then manage the side effects of the first pills that she took.

A few months after her diagnosis nearly six years ago, I went to see a therapist.

“I just don’t have strong feelings anymore,” I told her. “I used to get very excited about things, I would feel the giddiness of new exploits, excitement before a trip, I had more ‘night before Christmas’ moments. I suppose the good news is that I don’t feel really low either. The pendulum of my emotions barely swings at all. Like sitting on a swingset and allowing the wind to give a push.”

We talked once a month for several months when she told me that I was depressed. I managed my mood fairly well on my own, nevertheless, depressed. She asked me if I would like to see the “Doctor”.

“It’s probably time for you to sit with the psychiatrist if you’re comfortable with that.”

Pensive, I responded, “My understanding of depression and medicine is this: when we go through trauma or grief, our bodies respond for survival. My body believes that if I were to feel all of the feelings that come with what I’m going through, it would be overwhelming. So, it has shut itself down in order to survive and make it through each day. When it believes that I can handle the situation, it will correct itself.”

She agreed so I told her that I wanted my body to do what it does, to which she gave a final warning. “I’m not a pill pusher and I only want you to do what you feel comfortable with. While the body is brilliant, it also forms patterns and habits. If you wait too long to correct it, it will have formed a new normal of not producing the hormones at the level it is supposed to. This is when you have to take corrective measures.”

I left with a feeling of hope that my body was doing what it was supposed to do, but also a feeling of concern. I didn’t know how long I was supposed to wait until I did something- there was this arbitrary date floating around that felt like a point of no return. I wanted to feel again, but I didn’t want to feel everything. I wanted to be excited, and happy, and awe-inspired, and creative, and even sad- but I didn’t just want to be very sad. For a couple of years, I carried this weight of a muted life, a life in black and white watching people live in technicolor. Lumbering through Pleasantville desperately longing to see red.

For four years Tiffanni’s disease (have you ever noticed the word disease? Dis-ease. Something that destroys ease) was regulated by medicine. Her body never cooperated, but her mood and cognition saw little instability. She was bright, thoughtful, had a great memory, hopeful, and seemed to be optimistic. Outside of the challenges of her body, we lived a manageable life. But something happened last year. The medicine didn’t change, but everything else did. Everything.

Tiffanni began to have delusions, hallucinations, and fixations. There were people in our house trying to kidnap our kids. Beehives in the corner of the bedroom. Bugs crawling all over her. People were trying to hurt her. Others, plotting against her. And the fixations were undeterred, sometimes hysterical. She needed her nails done, hair cut, a mammogram, to go to Olive Garden- you name it and it was unceasing.

With that we began a new search for management. The current medicine didn’t match the symptoms anymore. And this wasn’t an easy fix. She has had one to two medicine changes every month for nearly a year. Nothing worked, nothing penetrated those OCD like preoccupations.

Sometime last year, I decided that enough was enough. I needed to feel again. My body had protected me long enough and had probably formed some habits that were keeping my emotions from cooperating. I went to see a doctor. Just a Family Practitioner, not a psychiatrist. I thought that he would make conservative changes that would ease me into feeling again. He prescribed some anti-depressant that I can’t remember. I used it consistently for two months when I determined that nothing changed. It wasn’t working for me.

I went back to see the doctor and he told me, “In your case, there is only one other medicine that I would feel comfortable prescribing. Your particular circumstances necessitate a very specific drug, so we’ll try this new one. If it doesn’t work, then I just believe that God has determined that this burden is for you to carry.”

Theology aside, that’s a lot of pressure. “If this little pill doesn’t work, you are doomed to haunt the doldrums forever.” Theology not-aside, I just flat out disagree with that characterization of God. Which reminds me of how often we create God into an image that is manageable, understandable, and controllable. But that’s another post.

I took the pill for several months. I never saw a change, a discernible difference in my energy, my mood, or my emotions. Either my body put up a stronger fight, the medicine didn’t work, or this is my burden to carry- surely there are other options…

Tiffanni’s body refused to respond to any of the medicine changes the doctor prescribed. I spoke with the nurse weekly, each time exasperated by the ineffectiveness of modern science. She would relay my descriptions back to the doctors who would readjust and tell me to check back in within 1-2 weeks. Every time, Tiffanni would have an initial good day, even two, and then back to chaos. We didn’t sleep, barely functioning, slogging through each day just to start over again.

It’s hard to describe the guilt of going to bed every night feeling like my kids were parentless that day. The balance between caretaking, parenting, working, and personally staying healthy was impossible. It’s like trying to keep four plates spinning that are in different counties- I couldn’t get to them all.

I could tell that I was emotionally exhausted because I would catch myself having imaginary conversations in the shower. Exploding into a heap of anger, berating someone or something with illogical indignation. That was a better alternative than actualizing those conversations. On my best days, I would levee the frustration long enough to complete my responsibilities only to hide the rest of the day. That is until the chaos began again.

Once a month I would say to the nurse, “Isn’t there something that can just sedate her, make her sleep or tired, just to get through the most difficult moments?” The truth is that I wanted a tranquilizer. I wanted a break, needed a break. The whole family did. We all knew what was happening and tried to keep it together. The kids would fight and argue with each other without the self-awareness to understand that what they were at odds over had nothing to do with what they were fighting about. And of course it wasn’t just the kids.

Finally, three weeks ago, the doctor obliged my request and prescribed more medicine than Tiffanni could handle. She was over-medicated. Nearly a year of lost memories. In an attempt to endure, my brain eschewed some basic functions and just survived. Sometimes survival is underrated.

For the last few weeks we have had no episodes of incoherence. Excitement is down, sleep is up. But Tiffanni is just there. A spot or two of life if you know what to look for and she squeezes out a smile with her eyes every once in awhile. She is permanently in a wheelchair and needs 24-hour care. But the kids are calm, fun, and acting like kids.

About a month ago I started feeling again. I think. Or maybe it was always there. A sense of time is a distant relative at this point. Tears and laughter came easy. It wasn’t an onslaught of dammed up emotions bombarding my brain. It was more an awareness of subtle moments. Instead of this moment sad and this moment glad, there were some gradation in events. A change in hue. It wasn’t just Red, yellow, and blue- I felt green, purple, and orange. I might have even caught a periwinkle. I sensed more than the binary of happiness and sadness- but longing, surprise, interest, loneliness, anger, and awe.

The problem is that the renewal of my emotions have coincided with the most weak and incoherent moment of this disease. It’s as if she has transferred her feelings to me. Loss and grief and pain and hopelessness and reality and lost time and loneliness and anger weigh a lot. I wake up some mornings before my consciousness awakens. Light and optimistic, only to be snatched back into reality. That’s an emotional whiplash.

There were things that I was cognitively aware of before, but now I feel them too. I have felt a lot lately and I’m not so sure that I want to right now. I suppose my body has this under control. There are positives and negatives to feeling and un-feeling and I don’t think there is a third way. You either feel or you don’t. I’ve lived a long time un-feeling and gotten used to it. I think that I’m ready to explore more of these emotions, avoiding none. Because I’m not sure that I can heal without experiencing them all, feeling the feels, headlong into all of my humanity. Or at least as much as I’m ready for this season. Welcome back pleasure and longing and loneliness and focus and bliss and worry and misery and peace and empathy and hope- it’s been awhile.

***

“I’ve seen fire and I’ve seen rain.
I’ve seen sunny days that I thought would never end.
I’ve seen lonely times when I could not find a friend,
But I always thought that I’d see you again.” – JT

It has been a month since I’ve written here. Which felt odd because I wrote for 14 months consistently and never missed a week. I wouldn’t call the last month a season of writer’s block, but rather life block. The last month of my life, my family’s life has been the most difficult that I can remember. And maybe I am a prisoner of the moment, always (see) using superlatives to describe the current season, which has its positives. Living in the moment matters. Except when that moment is difficult. Then perspective matters which eludes me of late.

Perspective is the ability to take a step back and reevaluate the current situation in light of the past or even in light of someone else’s dire situation that eventually changed. Perspective introduced “This too shall pass” into our vernacular. She penned the silly, bathroom poem Footprints in the Sand and started the whole self-help movement. You’re welcome Steven Covey and Tony Robbins. And while I understand the point of getting a fresh set of eyes, or backing up and getting a bird’s eye view, or even the spiritual cast all my cares on Him, I just don’t know how to today.

Yes, I’ve tried everything. I take care of myself with exercise and vitamins. My schedule is not too busy and I have others bearing some of the load. If prayer was going to work in this season, it would have. There’s been plenty. And it’s not like there’s a magic amount anyway. If God was into formulas and equations to enact His desires based on our effort, then we would usurp His position at first chance. But that’s not how the real world works, contrary to the television preachers. In fact, that’s not what the Psalms look like at all. Thank God for them or I really would be completely lost.

So, I decided to sit down and write anyway. I connect with you here and have committed to not pretending. Also, when I am in a tough season, I notice that my memory wanes. But I can’t forget these moments, as hard as they are, they matter too. This is me checking in. This is me remembering. This is me documenting all of the moments of my life- not just the Facebook and Instagram moments.

Don’t get me wrong, happiness and joy and laughter and friendships are close. They aren’t fake or forced, they might be more intentional (which could be a good thing), but I have plenty to be happy and laugh about. What’s odd is that they spin simultaneously with my other emotions. Orbiting the paradox of my life that might not be a paradox at all, but maybe just life. I have found that there aren’t really any moments of undiluted, singular emotion. It’s a mixed bag of happy and sad, frustration and contentment. And that’s what life is.

I discovered food five years ago. Not good food, I grew up with a true Southern cuisine chef for a mom that shaped my pallet. We sat down at the dinner table nearly every night of my childhood and ate good food. I discovered food that you go out and want to pay for. Up to that point, I thought that you just went out because you didn’t want to cook and clean, or that you couldn’t cook- I never had an issue with the latter. I don’t remember ever going out and thinking the food that I was eating was any better than what we had at home.

Once, Tiff and I had only been married two years, a guy in the church showed up with a “hawg” already butchered and packaged. We stuffed our freezer and had to send some back home with him. He raised a pig just for us and we ate like kings for months. Ham, bacon, pork loins, ribs, chops, shoulder, butt- you name it, we ate it.

Tiffanni and I took our last trip to New York City five years ago. We were visiting great friends who invited us up for a getaway in the middle of our reeling. Tiff was diagnosed six months before and the denial had worn off for a number of reasons, not the least of which, Tiffanni couldn’t stay still. As fortune would have it, our friends Matt and Nicole had made City friends that made the trip unforgettable. Nicole was friends with several actors in two different Broadway plays that afforded us great seats and backstage passes to the most magical performance art that I had ever witnessed. Also, they had made friends with a Food Network producer. I should say, they made friends with a fabulous lady that just happened to produce Chopped.

She invited us to eat at Scarpetta, a Scott Conant restaurant. The first course began with a wild mushroom polenta that is etched into my memory. It was then that my eyes opened and I thought, “Oh, so that’s what the fuss is all about. This is what people pay for.” All of my life, eating at restaurants was less about good food and more about avoiding dishes. This was different. Very different.

Last week my baby girl turned thirteen. Beautiful, spunky, creative, dramatic, artistic, talented, and full of life- she crossed the threshold of childhood into the land of insanity. The only good thing about the last several years passing by so quickly is that I know that her teenage, crazy years won’t last forever.

The saddest part about discovering food five years ago is that I haven’t gotten to take advantage of it very often. But this night, I decided to take Addyson to a fancy dinner with good food. She dressed up, make-up upped, and rode with me into downtown Birmingham for a fabulous evening.

I have worked on this evening for years.

By personality, I am distracted easily. I erratically move from one thought to the next, sometimes interrupting stories, situations, and discussions. If ADD was the thing that it is now when I was a kid, I would have mainlined ritalin or had an adderall IV. Luckily, I discovered it and have intentionally fought it. It’s not an easy fight, but one I’ve purposed to win.

I decided four years ago when Tiffanni and I starting going to Dairy Queen, which would turn into a standing date, that I would sit, stare, and engage with her the whole time, no distractions. My phone never comes out, I sit with my back to televisions and people so that I am only facing Tiffanni and a wall, and I work at presence. Eugene Peterson says, “The men and women who are going to be most valuable to us in spiritual formation are most likely going to be people at the edge of respectability: the poor, minorities, the suffering, the rejected, the poets, and children.” My objective was always just to give her the dignity that she deserved, even if she couldn’t communicate well anymore. Some days we sit and stare, for an hour, and I make silly faces just to see if I can make the corners of her eyes shift. It usually feels like at least an hour, but I follow the self-imposed rules nonetheless. Dignity was my aim, but her response, her reciprocation was unexpected.

Addyson and I sat there, talking, eating, smiling, and enjoying each others’ company. Two hours passed and not a second was lost. It was a tapas restaurant and we set a goal to order ten dishes to share. Each dish, cooked over an open wood fire, and I can name and describe all nine- barely missing our goal. I know what she wore, a dozen conversations that we had, every plate, but can’t remember much about the restaurant. Toward the end of our meal, I told her, “I sure wish we could watch them cooking the food and see how they do it.”

She laughed. “Dad, look right beside you.” Ten feet away, we sat next to the wood flame grill. Like a massive pizza oven, the chefs placed dishes on large plates, inserted them into and then out of the oven. All beside us, the whole time.

But I missed it. And yet saw everything that mattered that night. Tiff, once again my tutor, I treated our daughter to a beautiful night that probably meant more to me than it did to her- maybe not. She had my full attention- I noticed details and nuances, outfits and dishes, conversations and laughs, even concerns and dilemmas- all because I was there. Not just physically, I was there.

My presence cost a lot.

I’ll never believe that the outcome was worth the price, but I was there still. Completely there. I don’t believe in an “everything happens for a reason” world. That’s dangerous when we’re talking about real people. But that night, after years of work, after thousands of French Fries, hundreds of blizzards, and endless hours of silence, I sat back and enjoyed every minute of my daughter’s time. Her life, her laugh, her love, her momma’s eyes, and I didn’t miss much. That time cost a lot, but that night, for a moment, it was almost worth it.