I used to think you could only grieve for someone who had died. I recently learned that the anxiety and sadness I have been feeling about my mom, who suffers from multiple sclerosis, a chronic disease that affects the central nervous system, is a form of grieving, too: Ambiguous loss is the grief a person experiences about a loss without concrete closure, like illness. I’m lucky that I still have my mom, but our relationship has changed so much now that I’m her caregiver. I stay with her when my dad wants to leave the house, help feed her, dress her, brush her teeth, rub her feet, and put her to bed. I miss the healthier version of my mom who could carry a conversation, proofread my papers, and take me shopping, all of which we have not been able to do in years.
There are different phases of MS: Most common is relapsing-remitting, which means a person has episodes of symptoms (relapses), and then periods of more normal health (remissions). MS typically starts this way, then changes to primary-progressive, a stage when symptoms gradually worsen, with no periods of remission. That’s what my mom has now. She is in her 60s, is wheelchair-bound and mostly immobile, and has very low cognitive function. Though the symptoms of MS vary from person to person, my mom’s have included severe fatigue, slurred speech, dizziness, muscle spasms, urinary complications and poor concentration and memory. Basically, her brain has trouble sending signals to her body: She has hardly any short-term memory, but she can tell you the name of her elementary school bus driver. She can play TextTwist, a word-scramble game, on the computer, but she can’t sign her own name.
My mom has been sick for 15 years, but she used to be able to live a relatively “normal” life. When she began to limp, the disease’s first visible sign, my parents decided to tell us about her illness. After dinner one night when I was in elementary school, they sat my brother and me down and gave us a very technical explanation of MS, describing how her left leg was weak because the “myelin sheath” that protected her nerves was breaking down—pretty dry-sounding stuff, to a grade-schooler. I mainly wanted to be excused so I could go watch TV.
My parents were fairly clandestine about her health even after that conversation: When my mom dropped me off at friends’ houses, she wasn’t able to walk up the driveway to say “hi” to the other moms, and I was instructed to say she had a bad leg—not that she had MS. To my parents, her health was a private family matter, not something to be blurted out to neighbors or friends. I took that discretion a step further and dodged any potential situation in which it might come up. l avoided offering to have my mom drive my friends and me anywhere, or to host sleepovers. I was always the guest, or thanking friends’ parents for rides, in order to keep quiet about my mom’s MS.
Back at home, my parents were similarly quiet about my mom’s condition. They kept most of the heavy conversations and doctor appointments between them to spare my brother and me from worrying, so I wasn’t sure what MS was or what it did besides making your legs weak. Each new symptom was an unwanted surprise. In junior high, it was harder to go on with our daily lives and ignore my mom’s MS when she lost the ability to walk. At school, friends would sometimes complain that they couldn’t hang out on the weekend because they had plans with their mom, like shopping or lunch dates. I was jealous that they got to do those things so easily. I missed doing even the most quotidian errands with my mom, like driving to school or walking around a grocery store. Not knowing much about MS allowed me to fantasize that it wasn’t forever: I thought if my mom really wanted to, she could control her legs—that if someone offered her a MILLION DOLLARS, she could walk around the block. She never did, though.