I’ve been meeting people in the physical world that I first encountered online since 1989, when some of my closest friends came out of a random topic BBS at my university. So, I’m not new to it and I assume that few of you are, either. We know the basics of managing expectations, nailing down make-or-break details, keeping safety in mind, etc. Every time I meet someone new in this way, I’m used to the short time of awkwardness as physical and online selves blend to form a new image of the other person.
Meeting Jakob was my most difficult transition so far. (For anyone new, Jakob has been my closest companion in the virtual world Second Life for more than two years. Six months ago he was diagnosed with stomach cancer that metastasized to his brain. He has had surgery, radiation, and chemotherapy since. This trip was planned long before his illness was detected.) I was certainly not at my best when we were together because I was distraught and stressed; it wouldn’t be fair if I said critical things about him without saying that I was whiny, petulant, angry, evasive, and temperamental. When I met him, I had just finished a 2.5 week trip with my husband that was tiring but fun, reinforcing what an excellent partnership we have and how well we work together. I really wanted to go home. Jakob had just gotten out of the hospital and I felt like I was fulfilling an obligation to assist him on the trip; it was not for my enjoyment in any way and I dreaded it. I was terribly afraid that he would have a health crisis and I had some simmering resentment because he refused to change plans to have a trip with less effort — closer to his doctors and in a hotel instead of a rental apartment, for example.
We met at a train station near Jakob’s home and I was already stressed: he hadn’t replied to my emails asking where to meet, so I hauled my suitcase around and tried to make hesitant eye contact with any man who vaguely resembled the pre-illness photo I had seen. I sent worried texts. Finally, I spotted a little old man wearing a soft colorful beanie like I had sent Jakob when he began chemo. Oh, that was him. I was shocked. The illness and treatment have made him look decades older than he is. (The next week, he showed me a gallery of photographs from the last few years and the difference in his appearance is so terribly sad.) This little man was shaky and confused, wearing clothing several sizes too large, and he didn’t recognize me at first, either.
Our bad start continued to get worse. Chemo left Jakob with a lot of confusion, which increases when he’s tired and when his blood sugar is too high or low. He lost the ticket from the parking garage, causing a minor crisis until, unsurprisingly, it was located in the pocket of his pants. He put the GPS into demo mode and didn’t understand me — I was driving — when I protested that the screen didn’t match where we really were, I didn’t know where to turn, and I couldn’t figure out a German GPS system at 90 mph on the autobahn. Plus it was raining. And there was lots of construction. A drive that was expected to take four hours took more than six, and when we arrived, it was too late to go to a restaurant or market. I went into the bathroom, shut the door, and wept with exhaustion and stress.
By the second day, my reserves of patience and compassion were gone. So was the worldly and opinionated Jakob I had known, replaced by a frequently confused, babbling, stubborn man who criticized me when I wanted to read, use the Internet, or turn on the television. He used to hate to talk about himself. Now that was all that he did. On one hand it was nice; I learned things about him that I had never known. However, it was the sort of self-involvement that hijacked any conversation and in his confusion he told the same stories over and over. If I didn’t react with interest every time, he was annoyed. All of his choices were self-centered, as well. He might ask what I wanted, but he would immediately ignore it.
Now…. I must pause here. If I was my normal self — not shocked, exhausted, and homesick — I would have adapted more quickly. I wasn’t. I just wanted to run away. I lost my appetite and by the third day, I clearly had a cold, too. I got very little sleep the next two nights because I couldn’t breathe or stop coughing. (Germany, wtf is up with the Apotheke? Extract of thyme won’t help much with a bad cold. I wanted some damned Robitussin. Jakob said it was because of universal insurance; things we expect over-the-counter in the US require a doctor’s visit and a prescription in Germany. I don’t know if that’s true. However, when I could barely breathe and I discovered that the Apotheke had given me herbal remedies, I swore a lot. Oh, and btw, they didn’t do a damned thing. I was sick for the rest of my trip.)
Jakob and I eventually reached an equilibrium.I care about him; we have been close for two and a half years and I feel awful that he is suffering from this terrible illness and the even more destructive treatment. It is tragic. He repeatedly insisted that the surgery, radiation, and chemo had killed his cancer, and that he only needs a few more chemo sessions and then he will get stronger again. I smiled and nodded quietly each time. “Oh really? That’s good to hear.” Meanwhile, I knew from his sister that his hospital discharge paperwork said he had a new brain tumor and that his liver and spleen had been damaged by chemotherapy.
Before we met in person, I knew Jakob was stubborn, sometimes argumentative and difficult. What I discovered was that if anyone tried to give him advice or say he shouldn’t do something because of his health, he would reject it immediately. Everyone was “just trying to control” him, and the hospital and nursing staff only wanted to keep treating him for the money. I bit my tongue a lot.
In many ways, the mental changes Jakob had from chemo turned him into my 98 year old grandmother. The repeated personal stories from the past, confusion with modern technology, minor paranoia, and not really listening to anyone else. They’re both greedy with food; for my grandmother that is from a lifetime of denying herself treats, for Jakob it was excitement that he could taste things again after a few weeks away from chemo. Once, he insisted that I tuck leftover sugar and coffee creamer into my purse when we left a cafe. He would get obsessed with something like a piece of lint on his shirt, ignoring everything around him. They both have crazy health theories, like when Jakob speculated that I caught a cold from drinking tap water. Is that so different from my grandmother’s insistence that when you hiccup, a drop of blood falls from your heart? (To where, I have no idea.)
I’m so unthinkingly polite that I automatically apologize to inanimate objects when I bump into them. I was aghast at some of Jakob’s rude behavior and I don’t know whether it was caused by his illness or not. (I’ve omitted specifics because I don’t want to paint a negative picture of him that could be the result of chemo fog, but I was offended and disgusted.) Jakob thought I was overreacting. I also discovered that he was a smoker; he only smoked once while we were together, but I would not have made plans to spend two weeks with someone who smokes. It’s not judgment — smoke what you want — but I can’t stand the smell and it wouldn’t be fair to either of us.
This wasn’t my vacation. We did get to do some sightseeing, but with me doing all the driving, guarding him from falls on uneven pavement, rushing to pay when he got confused (couldn’t recognize his bank card or paid the wrong amount), and struggling to understand things with my mediocre German because he couldn’t always help explain. Some days were better than others. Some were awful. I did his laundry and reminded him to bathe, did almost all of the cooking and cleaning and carrying, and tried, with mixed results, not to complain about it often.
I was afraid of the responsibility of Jakob’s illness before the trip and that fear was justified. I was surprised to learn that he has had Type 1 diabetes for more than 20 years; something he never told me, so I had assumed his problems with blood sugar regulation were treatment-induced diabetes. Nope. He’s insulin dependent and it became my job to give him pancreas enzyme pills before meals and remind him to check his glucose level regularly. He refused to moderate his diet in any way, popping candies into his mouth like, well, candy, and drinking wine or beer with lunch and dinner every day. As a result, his levels were over 600 once (it took more than a day for him to recover from that), over 400 a few times, and often in the 250-350 range. If I dared to suggest that he change what he was eating, he’d go off on a rant. In the final week, he began having blood sugar crashes every night. I’d hear him get up and I’d join him at the dining room table, where his blood sugar would measure in at 40-60. He’d gobble some gummi candies and I’d get him to eat something more substantial, like yogurt or pudding, to round out the sugar spike. Once his numbers were normal, we could go back to sleep.
On the final Monday night of the trip, I woke to a crash and whimpering. Jakob was sitting in his open suitcase on the bedroom floor, wide-eyed and shaking. He didn’t respond when I called his name or waved my hand in front of his eyes. I ran to the kitchen, grabbed candy, and fed him until he was coherent enough for me to get him to the table. I handed him his blood sugar kit and he nodded, zipped it up, and carefully packed it away again. I had to make him eat more sweets before he could understand and operate his glucose meter, and his levels then were in the low 60s. If he had been alone, that crash could have been catastrophic.
Then there was the final night we were together. Jakob had already been awake with a sugar crash at midnight, and he woke with another one around 4:00am, but it was accompanied by severe abdominal pains. He ate all of the sweets that remained in the house but his blood glucose level would not rise, measuring repeatedly between 60 and 80. He started eating the only useful thing we had left, sugar cubes, but his level stayed low. For two hours he moaned in pain until he finally called the medical emergency number. The EMT examined him quickly and called an ambulance. We were at the hospital by 7:30. They gave him some painkillers, scanned his abdomen, and waited for a huge fax of information from his doctors, but ultimately his pain faded and they could not identify the cause.
Some people are born caregivers; I am not. I’m not naturally compassionate and when I’m helping someone in a stressful situation, I tend to be cold, practical, and glum rather than warm and encouraging. At the end of the trip, I was relieved to go home. I had a physical sensation of anxiety releasing its grip the next day.
Jakob matters to me, and now that we are both separated by thousands of miles again, our emails and chats are affectionate and pleasant. He and his family are grateful that I helped him have a vacation, and he was so pleased to eat normal food and go for walks, things he hadn’t done in six months. Today he had chemotherapy again. It’s a new combination of chemicals and he’s hoping it won’t rob him of his renewed energy and sense of taste. I’m not optimistic, but I say, “I hope so too”, and “We’ll see”.
I don’t know what it would have been like to meet him in RL before he was sick. I could speculate, but there is no way to know, so that’s a dead end. He’d like me to visit again. I told him how expensive that is and the practical reasons why I can’t make any promises. I left out any emotional reasons.
He’s back to living alone in his apartment now, with his sister checking on him when she can. I’m haunted by the image from one morning on vacation when he woke before me and decided to be nice and make breakfast. When I got up, there were two heat-and-serve rolls sitting in the cold oven and Jakob was standing next to the stove, where a burner glowed bright red with nothing on it. He was too confused to understand that he had turned the wrong dials, and slightly upset when I gently pushed him out of the kitchen before he burned himself or set something on fire. I don’t want him deprived of his freedom if he can take care of himself, but I’ll be nervous between messages for the foreseeable future.