Stripping the beds of their sheets and generally tidying up the cottage, I looked at the guest room calendars I’d posted on all the bedroom doors. I was happy to see that Sadie and I had five days before our next lodgers were to arrive. After that, all hell would break loose on the sleeping arrangement front. Three rooms and a sofa would be stretched to hold as many as seven people. Only two of the seven, being a married couple, would prefer to sleep in the same bed, and none of the three groups of travelers had ever met.
That three of my affable transients were single women and my former colleague Joe was currently unattached created the potential that my charting and positioning of the sleeping arrangements would be an exercise of extreme over-preparation. Joe is also a chef, and even though he is six times more talented than I and at least a couple of times better looking, we were and are great pals. Odds were in favor of Your Man for having a better shot at a holiday shag than I. The inside track, however, would have revealed said handicap to be more because two of the three birds were my landladies back in Seattle and the third, a dear friend of theirs. You don’t sleep with the holder of your lease, and you don’t do something stupid with her friend. Joe, however, understood another standing rule: don’t mess with one of three unless you’ve enough to share with the whole class.
As the larger bedroom would be better suited for the ladies, anticipating an air mattress at the very least, there was going to have to be some juggling around the time they arrived. I’d scheduled the married couple in the hostel hodgepodge, the Trinkets, into the guest room for the first part of their stay and Joe into the bunk closet.
Once Cara, Hester, and Lorraine stormed the cottage, however, the whole arrangement shifted. The Trinkets would move into my smaller room until the second week of January, when Mr. Trinket would be part of the mass departure and Mrs. Trinket would stay on for another couple of weeks. I’d shift to the second bunk in the closet with Joe, so that the “Terrible Treble,” as they would mockingly be called, could stack themselves into the largest chamber.
Moving from one room to the next on the first floor, I also noted an asterisk next to the date on my room’s scheduling calendar. I couldn’t remember the reason I might have marked my room with the symbol—not until sitting down for a simple supper of eggs and Mr. Sheehy’s sausages did it dawn on me why. I had reached the halfway point of my stay in The Town, the midpoint of a journey I’d dreamt of for decades, planned for months, and burdened with unrealistic expectations.
The thought made for a melancholy meal even though the bangers had no rival in quality or flavor and the greengrocer had told me the name of the hens who laid my eggs the previous morning. I was alone when I left Seattle and alone when I arrived in Ireland. I was alone for nearly a week when MS came calling, and though I longed for alone time while tripping over one group of guests or another, I didn’t enjoy being alone on the zenith of my adventure.
Alone wasn’t something I’d experienced very much in my life, but it wasn’t the aloneness that seemed to stick to me. In fact, I came to realize that I was, for the first time I could remember in my life, feeling lonely.
It is one of the great losses that I hear from people who like me live with multiple sclerosis: being taken out of, sequestered from, set aside by, and excluded from society.
Within five months of my diagnosis, it was obvious to me and to my doctors that my recovery would not go as far as allowing me to continue my hectic job. I informed my employer and we developed a relatively speedy exit strategy. What was supposed to be a jolly retirement party ended up as more of a professional funeral for “The Chef,” with no one really knowing how to act on such an occasion, myself included. I was then simply unplugged from my former working life and my career’s coffin lowered into the grave.
No longer was I to be called upon for consultation, assistance, or information. No longer was I relevant, it seemed to me, and I spent a good number of months dangling my feet into the dark, swirling pool of self-doubt and despair. I often wondered if I could or would ever get up and continue my journey or if I’d just slip beneath the surface and never be heard from again.
A bus full of commuters passes you on a busy street. A car idles, waiting for a traffic light to change. The azure-blue, summer sky is unzipped by the contrail of a jumbo jet filled with hundreds of souls. An airplane on approach or departure comes close enough to the ground for us to see the ant-like scene below as it gets on with the workaday world … and they all have a story.
Have you ever thought of the lives going on inside that plane far, far above your head, the society thousands of feet below your airborne feet, or in the commuter bus? Have you ever felt yourself cut off from the world as if you were in a personal space capsule catapulting through time, space, and dimension and nobody gets it … and the world still turns?
As we sit in our cars at a stop light, the city moves and breathes and gets on with its life. We are, essentially, alone. Life with MS can be that way sometimes. A lot of times. I felt as though I was trying to find my footing halfway between arrival and departure.
We all—MS or not—move through the world in our own little space ship. We interact with the world in our own way and the world with us. But no one can know the air we breathe inside our capsule. No one can understand completely the fears and hopes and worries and how I might be overjoyed to feel pain in my leg one day … because I haven’t felt anything in that limb for a while.
There can be a sense of “aloneness” while living with MS that makes perfect sense to me. That does not mean I have to be lonely.
I don’t think the amount of aloneness is the cause of a person feeling lonely. Even though I was thousands of miles and better than a day’s travel from anyone who really knew me, I had felt more alone than this night. Sure, sitting singularly at a country table with five empty chairs on a dark country night far from all one loves or loved is solitude. I felt more alone with Sheri just one room away while I lay in an MRI chamber on the night of my diagnosis with multiple sclerosis. As great electromagnets spun the cells in my body in unison to face their artificial North, I realized that no matter how many people gather around us, none of them will ever be close enough to turn our bodies back when they determine to self-inflict damage.
It’s no wonder that people living with MS not only experience symptoms of clinical depression more frequently than the general population but at a higher rate than people with other chronic and/or debilitating conditions. The chemical changes that happen in the brain as our immune system strips the wiring of our brain of their protections may be part of the reason. That this damage can occur anywhere in the brain also means that our emotional centers can be compromised by the disease itself. The ironic slice of reality that tops the depression and MS sandwich is that the medications most commonly prescribed to modify the course of the disease are very well known to cause depression on their own.
It’s no wonder as well, and a crying shame, that people with “my” disease are as much as seven and a half times more likely to take their own lives than the general population.
Odd as it might sound, that very thought is what brought me out of my halftime funk. In reading as much as I could the night after my first MRI and researching the drug choices available at the time of my diagnosis, I learned much about MS and depression and the suicide factor. It was the final factor that tipped the scales in favor of my first disease modifying therapy; it had the lowest reported rates of suicide or “suicidal thoughts.” Fighting MS is one thing. To have to fight against a drug that might rob me of more than the disease was already going to take was one battle I could avoid.
As if the thud of a second-half kickoff had been heard inside my scull, I snapped back to the present. I saw the dark night out the kitchen window not as a hollow void into which I might wonder endlessly, but rather as dark and plush eiderdown that smelled of turf smoke, soft to the touch and soothing to the soul. The morning would bring not the last half but rather the joyous continuation of my journey. MS could (and might) take my legs again, and it sapped my energy at nearly every turn. I would not allow it even the slightest nibble at my spirit. Then, as if on cue, Herself sat up and shook off her post-supper sleep.
We both shook it off and spent the evening in front of the television, turning it on for the first time since I’d arrived. A nature program about tigers in India was on the only channel the set received. Sadie sat on my lap, very attentive, and watched the big cats’ every move. I couldn’t help but let slip my feelings from the adjoining room. If happiness, as Charles Schulz told my generation, is a warm puppy, said warm puppy watching television from your lap is pure bliss.
* * *
The Town had become markedly busier during the days leading up to Christmas. Not only were more tourists arriving and the local residents out and about in larger, more obvious throngs, but former residents, family members who’d moved to the cities of Ireland or emigrated to all corners of the world that fleeing Irish have populated for centuries, were descending on their home place as well. All around the streets and shops there was a bustle of old friends greeting one another and sharing gossip about this one or that. Who had arrived, who was expected, and who wouldn’t be able to make it home this year was on every busybody’s lips, not to mention stories about what he or she might have done while away. All these were topics of lively conversation.
Christmas time is also the wedding season around many rural parts of Ireland. It’s the time in the year when so many have returned home that it only seems fitting that this be the time for nuptial gatherings as well as the Christmas turkey. In towns and villages all over Kerry, large gatherings of cars around churches and unhappy children pressed into suits and dresses and hopped up on Lucozade and sweeties run about churchyards and hotel car parks while their smartly dressed parents are in attendance at some relative or friend’s wedding. The children would rather be awaiting Father Christmas than the tossing of a bridal bouquet.
One such wedding party was posing for photos on the steps of The Town’s Catholic Church as Sadie and I passed by. I recognized the groom and two of his attendants as the lads who had made their way, howling in pain (I’d surmised) as much as in laughter, in and out of the surf where I’d taken Herself for a morning romp. Clad now in a starched shirt and blue suit rather than the swimming gear he was born in, Your Man looked like the bracing thrash in the tide had done over the effects of the night before. He, along with his swimming mates, appeared ready to tie another onto the end of the last.
Shouts of congratulations and encouragement rang out from passersby on foot and in cars, which slowed to a crawl to honk and wave at the happy couple. Traffic came to a complete halt when the wedding party pulled up stakes and shifted headquarters to the pub directly across the road from the church. The day was warm and bright as the smiles on the happy couple’s faces and the groom slapped me on the back as he passed by, inviting me in for a drink.
“And ye’r pup, too,” he said, confirming that he must have recognized me, or at least Sadie, from the beach as much—well, not quite as much—as I’d recognized him.
“I thank ye and the best of luck to you and your lovely bride,” I responded, “but I have to get up to the train station to pick up a mate from America.”
“We’ll see the both of you then, when yous get back,” the freshly minted groom said as he was being moved on a sea of people through the pub’s small door. “We’ll be at this for a while. At least …”
I couldn’t make out if he continued the thought, and a second sentence, with how long they might “be at this” or if it was all one thought: “…for a while, at least.” Either way, I knew where Joe and I would be having his first pint in The Town—hell, maybe even on our way back from the station in The Larger Town.
Chef Joe arrived the day before Christmas Eve, and the Trinkets found The Town via their own hired car later that same night. That the couple was driving in from Dublin was the reason we had to excuse ourselves from the post-wedding festivities as early as we did. Like so much in my life, the circumstances of the occasion gave the appearance of a much larger involvement by me than was actually the case.
“Jesus, Trevis!” exclaimed my Guinness-laced friend. “You’ve been here, what; SIX WEEKS? And you’re already getting invited to fucking weddings?”
His actual pronunciation was more like getinnvitedtooo, but I got the point.
Rather than explain the whole story, from post-stags night naked swim to the sidewalk invitation, I simply raised my upturned palms, shoulders, and eyebrows in unison—international guy’s sign language for “What can I say?”—and left it at that.
I had not slipped into total professional oblivion when I stopped working, and Chef Joe was one of the people who made sure of that. Along with a few other chef colleagues from my last company and associates who became friends, I was eventually kept in the loop enough to feel a semblance of self-worth. Management didn’t seem to want anything to do with me, as if I had some control over my need to retire. Co-workers, however, started to call, request support, and even ask for a bit of consulting from time to time.
These little gigs were never about the money, though living on disability insurance with COBRA payments, spousal support, and mounting medical expenses eroded my slight savings like the poorly constructed levee that it was. They were more about being a part of something. When Beth and I moved in together, it went a long way toward suturing my emotional wounds, but she was in the throes of opening a new concept high school in Seattle. Her involvement and enthusiasm for her chosen profession was beautiful to see in someone else, but a stark reminder of my concurrent self-exile and professional abandonment.
Eventually, even the little speeches, lectures, and simple consultations became more of a physical and cognitive burden than I could carry. That I could eventually recognize this for myself and then communicate the same was a major step for this former work-addict. The real friends—far too many to mention, really—from my former life, such as Joe, helped me more than they’ll ever know. Somehow, though, I was becoming less and less connected. The connections I was able to maintain became not only more important but also stronger.
“Fuckin’ Trevis …” was Joe’s response. “Some things never change and some people just keep gettin’ better … and then, there’s Fuckin’ Trevis!” These words, along with back slapping and plenty of laughter, propelled us into several blocks worth of reminiscing as we headed to the pub where I’d told the Trinkets to meet us. It was easy to find the cottage if you knew where you were going. If not, the local watering hole, which sat at the corner of the coast road and the main turn into The Town, made for an ideal meet-up location. And it was owned by a neighbor I’d recently discovered. That Joe and I had our snoots full and I’d graduated to a forearm crutch in the last few days made the lift the Trinkets could offer us a required one.