Kevin looked over to his mom, hoping she would have more of an idea what to say next than he did. Hoping that maybe hed misheard all of it, and she would explain. She was short and slender, with the tough look of someone who had worked hard to raise her son alone in Walnut Creek, California. Kevin was already taller than she was, and once, just once, shed said that he looked just like his father.
Right now, she looked as though she was trying to hold back tears.
Are you sure this isnt a mistake? she asked. We only came in to the doctors because of the things Kevin was seeing.
The things he was seeing. That was such a gentle way to put it, as if even talking about all of it might make it worse, or bring more of it. When Kevin had first told his mother about it, shed stared at him and then told him he should ignore it. Finally, when he fainted, hed woken up to find that he had an appointment with the family doctor.
Theyd quickly gone from the doctors office to the hospital for tests, and then to Dr. Markhams office, which was white-walled and filled with mementos of what seemed like trips to every corner of the planet. When Kevin had first stepped in there, hed felt as though it was an attempt to make a cold, clinical space seem homey. Now he thought maybe Dr. Markham liked to be reminded that there was life that didnt include telling people they were dying.
Hallucinations can be a factor when it comes to diseases like this, Dr. Markham said, in a careful tone.
Hallucinations didnt seem like the right way to put it, to Kevin. That made it sound as though they were unreal, ghostly things, but the things he saw seemed to fill the world when they came. Images of landscapes he hadnt seen, hints of horizons.
And, of course, the numbers.
23h 06m 29.283s, 05° 02 28.59, he said. It must mean something. It has to.
Dr. Markham shook his head. Im sure it must feel that way, Kevin. Im sure that you must want it all to mean something, but right now, I need you to understand what is happening to you.
That had been part of why Kevin had told his mom about it in the first place. It had taken him weeks to convince her that he wasnt joking, or playing some game. Shed been sure that he wasnt serious at first. When hed started to have the headaches, shed taken it more seriously, letting him stay home from school for the day when the pain was paralyzing. When hed collapsed the first time, shed rushed him to the doctor.
What is happening to me? Kevin asked. The strange thing was how calm he feltwell, not calm. Maybe more kind of numb. Numb was probably the right word for it. His mom looked as though she was on the verge of falling apart, but for Kevin, all of it seemed far away, still waiting to rush in.
You have one of a group of degenerative brain disorders known as leukodystrophies, Dr. Markham said. Here, Ill write it down if you like.
But Ive never heard of that before, Kevins mom said, in the tone of someone for whom that meant it couldnt be real. He could see the tears she was trying to fight back. How can my son have something Ive never even heard of?
Seeing his mom like that was probably the hardest part of it for Kevin. Shed always been so strong. Hed never had a problem she hadnt been able to solve. He suspected that was what she was thinking too.
Its a very rare illness, Ms. McKenzie, Dr. Markham said. Or rather, a collection of illnesses, each of which presents differently. There are different forms, each one caused by a genetic abnormality that affects the white matter, what we call the myelin sheath, of the brain. There are usually only a few hundred sufferers of each of these illnesses at any one time.
If you know what causes them, cant you do something? Kevins mother asked. Isnt there some gene therapy or something?
Kevin had seen his mom on the Internet. Now, he guessed he knew what shed been looking at. She hadnt said anything, but maybe shed been hoping she was wrong. Maybe shed been hoping there was something shed missed.
There are therapies available for some forms of leukodystrophy, Dr. Markham said. He shook his head. And we have hope that in the future, they might help, but Kevins isnt one where there is any established treatment. The sad truth is, the rarer the disease, the less research has been done on it, because the less funding there is for that research.
There must be something, his mother said. Some experimental option, some study
Kevin reached out to put his hand over his mothers. It was strange that they were already almost the same size.
Its okay, Mom, he said, trying to sound as if he had everything under control.
No, it isnt. His mom looked as though she might burst apart with the shock of it all. If theres nothing, then what do we do next?
We use the treatments that are available to give Kevin the best quality of life we can, Dr. Markham said. For the time that he still has left. Im sorry, I wish I had better news.
Kevin watched his mother forcing herself to be brave, piecing herself back together a little at a time. He could tell that she was doing it for his sake, and almost felt guilty that she had to.
What does that mean? she asked. What exactly are you proposing to do for Kevin?
Im going to prescribe tablets to help manage the pain, Dr. Markham said, and to reduce the chances of seizures. Kevin, I know that hallucinations can be distressing, so Id like you to talk to someone about techniques for managing them, and your responses to them.
You want Kevin to see a psychologist? his mother asked.
Linda Yalestrom is an expert in helping people, particularly young people, to cope with the symptoms that rare illnesses like this can cause, Dr. Markham said. I strongly recommend that you take Kevin to see her, given the things he has been seeing.
Theyre not just hallucinations, Kevin insisted. He was sure that they were more than that.
Im sure it must feel that way, Dr. Markham said. Dr. Yalestrom might be able to help.
Whatever whatever you think is best, Kevins mother said. Kevin could see that she wanted nothing other than to get out of there. There was something he needed to know, though. Something obvious that he felt he should probably ask, even if he didnt really want to hear the answer.
How long? he asked. I mean, how long until I die?
That was still a hard word to believe. Kevin found himself hoping it would all turn out to be a mistake, even now, but he knew that it wasnt. It couldnt be.
Its impossible to say for certain, Dr. Markham said. The rate of progression for leukodystrophies can vary, while each case is different.
How long? Kevin repeated.
Perhaps six months. Dr. Markham spread his hands. Im sorry, Kevin. I cant be more exact than that.
***Kevin and his mother went home, his mom driving with the kind of care that came when someone knew they would probably fall apart if they didnt concentrate completely. For most of the journey out toward the suburbs, they were silent. Kevin wasnt sure what he could say.
His mother spoke first. Well find something, she said. Well find another doctor, get a second opinion. Well try whatever treatment they can think of.
You cant afford that, Kevin said. His mother worked hard at her job at a marketing agency, but their house was a small one, and Kevin knew there wasnt a lot of money for extra things. He tried not to ask for much, because it only made his mother feel sad when she couldnt give it to him. He hated seeing his mother like that, which only made this harder.