Disease and the Genealogy of Suffering
How multiple sclerosis has pulled me and my sister apart and brought us together
Slumped over like a question mark, my sister shuffles across the first floor of her house. Her feet drag and her legs collapse beneath her from time to time, leaving her in a crumpled pile. Once in a while, her boyfriend or her 15-year-old daughter finds her, and she can’t recall how long she’s been lying there.
She can no longer lace her fingers around a glass of water and bring it to her lips. Her right hand flutters like a bird with a broken wing, unable to lift itself and sustain its own weight.
Yesterday, my sister sent me an Edible Arrangements bouquet for my birthday. She addressed it to an apartment I moved out of three years ago. I didn’t tell her about her mistake.
My sister is 36 years old.
Multiple Sclerosis (MS) is a disease of the central nervous system. It disrupts the connection between your brain and your body. Symptoms range from difficulty walking and thinking to weakness and fatigue. My sister has a version called Relapsing-Remitting MS, meaning she experiences unpredictable relapses in her symptoms followed by periods of remission and relief. This relapse has lasted four months so far.
She’s been out of work since the beginning of her relapse. “I can’t go back to work,” she said to me on the phone yesterday. “I can’t go back to work and be stupid. I can’t go back to work when I can’t even type.”
She’s fallen between the cracks in the health and insurance systems here in the US. Both her primary care provider and neurologist refuse to sign the paperwork required for her to receive short-term disability payments during her relapse.
Her primary care provider says, “I’m a nurse practitioner and don’t know anything about MS, so I don’t feel right filling it out.” The neurologist says, “You’re an office worker and sit at a desk all day and should be able to go back to work. Plus, your primary care provider should complete the paperwork.” They point fingers at one another, deadlocked in disagreement, while my sister depletes her savings to pay the mortgage on her new house.
Her insurance continues to deny the $60,000 a year treatment she needs to stave off the continuing damage to her brain. She plays brain games on her phone to fight off cognitive decline, but confesses to me that she can’t make it past the first levels.
For months, her neurologist has suggested that my sister has been exaggerating her symptoms to get out of work.
My sister, who worked up until the day she gave birth to my niece and went back to work two weeks later.
My sister, who labored for hours alone in her bedroom. I cracked open the door a few times to make sure she was okay. I saw her on all fours, her face twisted in agony, but she made no sound. She only called out to me when she couldn’t take it anymore. When we arrived at the hospital, she was 6 cm dilated.
My sister, who didn’t utter a word when I accidentally slammed her hand in a car door as a teenager. I only figured out what happened when I noticed she wasn’t walking next to me and looked back to see her hand sandwiched in the door.
My sister, who hid her MS diagnosis from our family for almost two years. She suffered seizures and walked around with painful welts all over her body — an allergic reaction to the typically-prescribed medication. She wore thick tights and long-sleeved shirts during our humid Midwestern summers so nobody would see the angry red sores covering her body.
My sister, who before this relapse hadn’t been to the doctor since 2017; who preferred to grin and bear it.
My sister, who as part of our childhood trauma learned to internalize pain.
Yes, these many months doctors have accused my sister — my sister — of exaggerating her symptoms.
After months of pushing to get one, my sister finally received an MRI last week. The results show the devastating effects of this latest relapse; new lesions have spread all over her brain. She’s vindicated, but it’s a Pyrrhic victory.
My sister is receiving care at Mayo Clinic — one of the most renowned clinics in the US. It has seen presidents, celebrities, and dignitaries from all over the world.
But my sister is a local and brown, with smoke-saturated clothes and a chipped front tooth. She receives another tier of care.
I want to visit my sister, but she’s caught in another healthcare-related Catch-22. Although she’s eligible to receive it, she’s been advised against getting the COVID-19 vaccine because it may interfere with the MS treatment she needs. But, she can’t start treatment because she’s waiting on her insurance to approve a counterclaim for coverage. So, we wait.
I have dreams about us as kids hopping from mattress to mattress in the showroom of the furniture store my dad used to manage. She used to be my partner in crime.
We’re only 16 months apart in age; I’m older. In some ways, she’s felt like a shadow self, following me in experiences, just a little further behind. I could always warn her about what’s to come — which teachers to avoid, what her period would look like, when to start shaving to avoid bullying from the popular girls.
Now, we’re separated by the pandemic, her illness, and a four-hour drive. She’s on her own path — one I’ve never travelled before and I can’t warn her about what’s ahead.
The rest of our family — particularly our mom and dad — live in denial. “She’ll get better” is the mantra they keep repeating. To be fair, they don’t know the extent of her suffering — how the steroid treatment she received last week kept her up for days, how her heart raced with anxiety and her mind taunted her with suicidal thoughts (common side effects). She only opens up to me, and I hold on to her suffering.
I carry it with me when I run — my legs carrying me over the pavement my sister wouldn’t dare walk on. I carry it with me when I write and think of all the years I wasted doubting my intellect when my sister can’t trust her own mind. I carry it with me when I feel the crushing guilt of contextualizing my sister’s suffering in terms of my own.
She only opens up to me, and I hold on to her suffering.
She suffers, and I suffer too. I torture myself for being the healthy one.
Why her? Why not me? How can I abuse my body by lazing around on the coach and eating junk food when my sister is in a battle for control of her body every day? How can I space out watching TV when I have the mental capacity to learn, create, and contribute? How can I stay at home with my daughter when my sister would do anything to be able to go back to work? Do I even deserve to have this healthy body and healthy mind?
I believe I indulge in this kind of shameful self-flagellation from time to time as a way to participate in her suffering, as if connecting myself to her experience will bring us closer together when it feels as though the disease is wedging us apart.
While my sister and I are divided by experience, we’re united by hope. We hope the results of the MRI will convince my sister’s doctors of the seriousness of her situation and that they’ll take the appropriate measures to ensure she gets the care and support she needs. We hope this relapse will pass and she’ll recover soon. We hope we’ll be reunited.
The future is unknown, and terrifying, but I’m going to face it with her. We’re keeping the lines of communication between us open, reaching out to one another regularly, and leaning on each other while we can. It’s what we’ve always done, and it’s what we’ll do now — even when the present reality of her disability is more complex and frightening then anything we could have imagined as kids.