How a shock diagnosis meant a fight to regain my identity

Exclusive | 3 min read | As told to Seraphina Seow

I don’t eat any more.

In 2015, I had a sleepover with my cousins and woke up unable to see properly out of my right eye. At just 14, I was diagnosed with Multiple Sclerosis - a lifelong condition that affects the brain and spinal cord, causing wide-ranging symptoms.

Then, after months of food-induced nausea and vomiting (a rare sympton of MS) I was admitted to hospital to have a feeding tube inserted. I had tried medications before this, but to no avail. I was 16 and my intestines were shutting down.

The nurses gave me a cup of water to drink as they put the tube up my nose and down the back of my throat, pushing it down until it was positioned correctly. The pain was intense and I could see my dad’s jaw clenching as I cried.

A new me

When I finally saw myself in the bathroom mirror I didn’t recognise the person staring back - the nasojejunal tube that carried food straight to my small intestine made me feel like an alien.

Every dinnertime I hid in my room, which was set up with an IV pole to hang my liquid food, administered at set times throughout the day. It felt more like a hospital than my bedroom. I tried to join my family for dinner but the smell of food made me feel sick, and it grieved me that I didn’t crave the mac and cheese my mum had made.

It felt like no part of the pre-MS me was left: not in my room, not in my appearance, not in the joy I’d once shared with my family when mum cooked our favourite dish for dinner.

Even when the cooked food smell didn’t make me feel sick anymore, I still felt like an outcast in the kitchen and at the table. If I didn’t eat, I questioned: was I still part of my family?

It wasn’t only loss of food that I was grieving for, but the magic of nightly round-table conversations, where arguments started or settled, and jokes crumbled the silence.

Missing out

I stopped cooking too. And not being in the kitchen meant I missed out on the laughter and conversations between my grandparents and relatives when they made potato salad or red velvet cake at family reunions in our hometown of Ohio.

I no longer took part in the cooking contests that my relatives held. With food being the mainstay of gatherings, celebrations and even bereavement in the Black community, some relatives were appalled that I wasn’t eating. It made me feel even more estranged when I saw their horror.

One night I was sketching in my room when there was a gentle knock at the door. My dad poked his head in, with my mum and siblings hovering behind. I ignored the instinctive need to say no and nodded them in, shifting up to make room for them all on my bed.

We started to talk as we had done previously at the dining table, all of us feeling the strangeness of gathering without food between us. Although it felt awkward at first, this became a regular occurrence and my mood began to shift.

Why food matters

It made me realise that food carries special meaning for the Black community largely because it’s when we often tell stories, share tales about our family lineage, and spend time with each other while cooking.

This time together is special to us because many of the older generations of my family didn’t have the privilege of knowing their siblings, a sad and terrible legacy from when my ancestors were sold into slavery and split up. The slave masters did this to keep us broken and separated whilst in captivity.

But whilst I was now unable to taste my grandad’s egg salad any more, I could still giggle at the story about how he made it every day for one entire summer for his grandchildren, because that was the only dish he knew how to make.

Learning to cope

Some days I can go to restaurants, and other days the longing for food brings sadness. My intestines haven’t improved at all, so it looks like I will need my feeding tube - one I have now had surgically inserted through my abdomen - for a long time, if not indefinitely.

At Thanksgiving last year, I cooked food for the first time in three years, and it brought me overwhelming relief that I could still experience joy from it. Cooking makes it a bit easier to sit at the table now.

I still have important family conversations, nowadays migrating between my room and the rumpus in the dining room. I graduated from High School and entered college – two things I never dreamed would be possible for someone with a feeding tube like me. My shift has focused from what I can’t do, to what I can.

Having a family that remembers what I cannot do and places importance on the grief I feel, as well as taking extra steps to lessen the impact of not eating on my mental wellbeing, has been essential to my healing. I think this is what anybody with a medical device or chronic illness needs to feel.

My family’s empathy and support has brought me to a place where thinking about my feeding tube doesn’t make me sad. At Thanksgiving this year, a new genre of stories will be passed around the Ingram household table, stories about my family’s efforts to hold fast to me and my tube, so that I never forget who I belong to.

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