It Was “Just Flu”
In April 2024, I thought I had flu. If you live with Spinal Muscular Atrophy, you know that sentence is never casual. But I’ve had bronchitis before. I’ve had chest infections before. So I did what I do best — I pushed through.
I visited my boyfriend’s parents.
I went to Easter with my brother and his family in Rustenburg.
I told myself I was fine.
I didn’t want to ruin Easter. By the end of the weekend, I had barely left the bed. But still, I convinced myself I was managing. Until I wasn’t.
The Moment We Knew
Back home, I tried to swallow a painkiller and choked on it. That was the moment everything shifted.
It wasn’t just flu. It wasn’t something I could “push through.” It was time for the emergency room.
The emergency room is a strange place — painfully slow and frighteningly fast at the same time. After hours of uncertainty, sky-high infection markers, and no clear answers — pneumonia? coronavirus? something else? — I was admitted.
And I was sicker than I had been in a very long time.
When you live with Spinal Muscular Atrophy, a respiratory infection is not minor. It is dangerous. Lying in that hospital bed, I wasn’t just uncomfortable. I was fighting for my life. And somewhere quietly in my mind, I wondered if this might be the end.
When “Sick” Is Not Simple
Hospital is never simple for me. I cannot be left alone for long. I need assistance with basic, everyday things. And if I’m honest, you cannot always trust the system to manage those needs properly. Drips ran dry. Rooms changed. Communication was unclear.
So my family showed up. Constantly. Not just because they love me — but because I needed them. Physically. Practically. Emotionally.
But here is where it becomes complicated.
Two Beds, One Family
While I was lying in a hospital bed trying to breathe, my grandmother was at home dying.
She wasn’t in a hospital. She was fully reliant on my family — her children — for everything. For care. For comfort. For presence. For dignity. For goodbye.
The same people driving back and forth to sit with me in hospital were going home to sit beside her.
They were caring for their dying mother.
And caring for their sick daughter.
They were splitting themselves in two. And I felt it.
Divided in Two
I felt fear — real, deep fear.
I felt helplessness — trapped in a body that wouldn’t cooperate.
And I felt guilt.
Guilt that I wasn’t at home with my grandmother.
Guilt that my illness was pulling my family away from her bedside.
Guilt that attention was divided when her time was clearly limited.
I didn’t know what I was supposed to feel.
Was I allowed to focus on surviving?
Was that selfish?
The People Who Carried Me
In the middle of all that uncertainty, I was carried.
There were so many people who showed up for me during that time — family who sat with me, checked on me, and quietly made sure I wasn’t facing it alone. My mom was there every day, steady and constant. My dad made sure he came to see me every day too. Their presence reminded me that even in the hardest moments, I was surrounded by love.
My twin sister sat beside my hospital bed day after day, reminding me that it was not time to give up. When I was too weak to fight, she helped carry that fight for me.
My boyfriend slept on a mattress on the floor in my lounge so he could be close, so he could visit me before work every morning. Day after day, he showed up — steady and determined — fighting for me when I didn’t have the strength to do it myself.
Each person showed up in their own way, and together they became my anchor.
The Goodbye I Almost Missed
Eventually, I was discharged. Shortly after I got home, my grandmother passed away.
I will forever be grateful that I got to say goodbye. Not everyone gets that opportunity. That moment — being able to see her, speak to her, thank her — is something I will never take for granted.
But the overlap of those days — survival and goodbye happening at the same time — has stayed with me.
Recently, as illness has touched our family again, I’ve felt those memories resurface. Our bodies remember. Our hearts remember. The fear. The divided loyalty. The helplessness.
What I understand now, though — what I couldn’t fully see then — is this: Survival is not selfish. Choosing to live is not a betrayal of someone who is dying.
Sometimes staying alive is the greatest act of love you can offer the people who are already losing so much.
What I Know Now
Life is fragile. It shifts quickly. It does not wait for perfect timing.
You can love someone deeply and still not be at their bedside every moment.
You can need help and still be strong.
You can choose yourself without it meaning you love others any less.
If this season has taught me anything, it is this:
Tell people you love them.
Say thank you to the ones who show up for you.
Acknowledge the quiet fighters — the ones who sleep on mattresses, who sit in hospital chairs, who drive back and forth between two emergencies.
Do not wait for tomorrow to say what can be said today. Because sometimes survival and goodbye happen at the same time. And when they do, love is the only thing that truly holds.
