Q: What is Multiple Sclerosis?
A: Multiple Sclerosis is a disease of the central nervous system. It erodes the protective myelin sheath around nerves in the brain and spinal cord. This causes a range of degenerative symptoms, always unique to the individual.
Q: Who gets Multiple Sclerosis?
A: Your father.
Q: How can I catch Multiple Sclerosis?
A: Multiple Sclerosis is not contagious. You cannot catch Multiple Sclerosis. As your father becomes sicker, however, you will probably experience many of the same symptoms he does, specifically: nausea, confusion, dizziness, loss of appetite, and depression.
Q: What are the symptoms of Multiple Sclerosis?
A: Initial symptoms include tremor, slurred speech, numbness and weakness. Later, the patient my experience loss of vision, fits of anger, the inability to make breakfast in bed for your mother, difficulty swallowing, diminished capacity to talk earnestly and meaningfully about what is happening, trouble helping you with your math homework, optic neuritis, emotional distance, loss of ability to play soccer, unemployment and/or divorce.
Q: What causes Multiple Sclerosis?
A: Medicine has yet to come up with a definitive answer. Heredity may play a small role (very small, the doctors assure you). Some research suggests that environmental factors might be associated with certain cases of MS. You cannot dismiss the possibility, however, that God is making your father sick because you are a bad child.
Q: What can I expect after the diagnosis?
A: It depends. At your house, everything is the same at first. Your mother reads everything she can get her hands on, but your father doesn’t want to discuss it. The more your mother reads about weakness, fatigue, and loss of muscle control, the more time your father spends exhibiting his energy and strength. He bounds up flights of stairs with a basket of clean laundry pinned against each hip. He walks you and your sister around on his shoulders, ducking the light fixtures and ceiling fans. He flips pancakes high in the air, throws softballs, turns jump ropes, runs in front of kites and behind two-wheelers. Once, and only once, he rollerblades the length of your driveway and partway down the street. For years his rollerblades sit in the garage, shiny and black, monstrous next to your miniature multi-colored versions.
Q: Does Multiple Sclerosis always progress the same way?
A: No. The course of each patient’s disease is unique. In the months after the rollerblading, your father gets quieter, slower. He falls down a flight of stairs and you drive him to the hospital where he receives eleven stitches. He stops being able to change light bulbs. He can no longer shop for groceries. He stops being able to make your mother happy. After the divorce, he loses his eyesight for a while, then gets it back. Once, your boyfriend has to carry him from the couch to the bedroom because he is too weak to stand. You teach him to play euchre on a Thursday. By Saturday he is good at it and you are glad to have something you can do together. By Sunday, he has forgotten completely how to play and your sister—who wasn’t there when he was winning, really winning!—gets upset at you for trying to teach him such a complicated game.
Q: How is Multiple Sclerosis treated?
A: While there is no cure for Multiple Sclerosis, some treatments have been proven to slow the progress of the disease. First, you give your father weekly shots with a big needle. Then, you switch to daily shots with a small needle. Your father says he likes this better, but it is difficult to know for sure. When the daily treatment becomes ineffective, drive him to the hospital once a month for intravenous infusions. You will sort of miss injecting him. It was the one thing you could do to help. Now you don’t feel involved at all.
Q: Is there hope for a cure?
A: There used to be among the members of your family. You would go door-to-door in the cold gathering pledge money for the annual MS Walk and spend no small amount of time internet searching “MS treatment research.” But as your father gets sicker, the cure seems farther and farther away. Now when you watch him use his hands to gingerly place his feet on the footrests of the wheelchair, you know that it is too late. A cure wouldn’t help him anymore.
Q: What supports are in place for patients with Multiple Sclerosis?
A: At first, your father doesn’t need a lot of help. This isn’t so bad, you think. You can deal with this. When he does need something, your mother is there. Then, slowly, more things fall to you: changing the filters in the furnace, vacuuming the stairs, adding up the plus and minus columns in the checkbook. When you get your driver’s license, you log hundreds of miles between the pharmacy and home, the MS center and home. When your mother leaves, you learn to make coffee. He asks for the remote, the TV guide, more potato chips, if you can look for the phone, if you can fold his laundry, if you can skip your “thing” to take him to the doctor. He never asks to talk. You act like everything is fine. The party?, you say, It’s okay if I miss it. Your father always says thank you, but never with too much sincerity. That would mean you were giving something up. That would mean you were sacrificing. That would mean something, everything, was not fine.
–originally appeared in Los Angeles Review