Pain Wasn't Enough

Why We Have to Advocate for Ourselves

Life. You know Life. Life with a capital L. The one full of tricks, detours, and “fun challenges” whether we need them or not, usually arriving at the worst possible moment.

I found myself in one of those moments when this week began.

I am scheduled for spinal fusion surgery on June 24. Anyone who has prepared for major surgery knows the surgery itself is only part of the story. There is the arranging, cancelling, scheduling, rescheduling, preparing the house, planning for help, making sure the dog is cared for, making sure someone can cover responsibilities, and trying to get every last necessary medical piece in place before the date arrives.

I had already handled the checklist: dental cleaning, rescheduled, appointments cancelled, arrangements for our dog, coverage for responsibilities, and the slow work of preparing the house for months when bending, lifting, and twisting won’t be casual options.

I had not, however, been told that one missing piece could put the entire surgery at risk. Of course, it turned out that was not the only thing I had not been told.

On Sunday night, I wrote a simple message to C, the neuro spine case manager. Had I not written that message, I would not have known there was a deadline. On Monday, I learned certain medication needed to be started before surgery. Her message said, “I confirmed with Dr. K this morning—he would like you to start the medication before surgery. If you aren’t able to start it by 6/10, we may need to postpone your surgery. Keep me posted.”

Let me pause here. No one had told me that. No one had called, flagged the timeline, or said, “If you aren’t able to start it by 6/10, we may need to postpone your surgery.” I found out because I asked.

Once I had that information, I contacted my endocrinologist.

Later that morning, while this was still unfolding, I called Barbara, my best friend, whom I’ve written about before. I tried to stay engaged in the conversation while walking around my house with the elephant on the table riding along on my shoulders. She could tell. That’s how well she knows me.

Usually, we speak for at least two hours, but I cut us short after less than ninety minutes because I could not let go of the messages I still needed to send.

I also had the task of walking myself back to my normal, where I laugh and smile and enjoy even the smallest details of my life. Once I knew I had done everything I could from my end, I let it go. Why brood about something out of my control? My answer to that question was, “No, I don’t think I’ll do that.”

The next morning, I received the response from my endocrinologist: somehow, the Medicare request had not gone through.

Not gone through.

Three full weeks had passed without any follow-up. No one would have discovered that the order apparently had not reached Medicare had I not written.

I was told the new order was being sent. I gently suggested they mark it urgent. I also gently suggested they tell the scheduling nurse the shot needed to happen before June 10.

Because I still did not know whether Medicare would move quickly enough, I made another plan. I sent one message to the surgeon’s team asking whether surgery would definitely be off without the shot, and another to the endocrinologist asking how I might be reimbursed if I had to pay up front.

Then I went to lunch.

I did not stay home brooding while I waited for an answer. I had lunch with a fascinating woman I’ve known for eight or nine years, someone who, at almost seventy-five, is still reinventing herself. Being with her reminded me that life is still bigger than whatever mess currently demands my attention.

Soon after I arrived home, another message arrived telling me I could come in the next day for the shot.

A miracle, or so I thought.

Early the next morning, I arrived on time and waited twenty-five minutes. Finally, my name was called, and a sweet young nurse took me into an examination room.

“You need a blood test,” she said.

I told her I was there for the shot.

She explained they could not give it to me without the blood test results. This was news to me.

At that point, I insisted she set up another appointment for the shot in case everything went well. Then downstairs I went for the blood test.

And then I came home and waited another day, hoping I passed.

Around 5:00 p.m., I wrote a note to my endocrinologist explaining everything that had happened, doing my best not to let my frustration run loose across the page. I asked her to let me know the results as soon as she received them.

No sooner had I hit send than an email arrived saying the test results were in.

The medical site said: ABNORMAL.

That will get your attention.

I examined each result, spotted the few less-than-stellar numbers, and did what any modern person with a medical portal, a deadline, and a nervous system might do. I put the information into ChatGPT, which said none of this would probably stop the surgery while also reminding me its answer was not definitive.

So back I went to the medical site. As I was writing my endocrinologist again, her message arrived. I was good to go.

The relief was immediate. So was the clarity.

The point of this story is not that patients should have to manage the system. We should not. We should not have to chase orders, discover missing Medicare requests, ask about timelines no one mentioned, or catch details that could derail a surgery already in motion.

But the reality is this: sometimes we do.

We have to ask, follow up, read the messages, question the silence, and make sure the person who needs to know actually knows.

Self-advocacy is not being difficult or demanding. It is not being dramatic. Sometimes self-advocacy is the only reason the necessary thing happens in time.

If I had not written C, I would not have known there was a deadline. If I had not followed up with the endocrinologist, she would not have known the Medicare request had not gone through. Had I not kept asking questions, my surgery might have been postponed for reasons no one caught soon enough.

What made the difference was not the severity of my pain or even the fact that major surgery was already scheduled. What made the difference was one simple question, followed by another, and then another.

That is the lesson I am carrying forward: ask. Follow up. Do your best to stay pleasant, but firm.

And do not assume that because something is important, someone else is watching it closely enough.

💌 I write to share what I’ve learned over a long life. Each essay takes time and care. If you find value here, consider a paid subscription, even for a month. Your support helps me keep writing The Other Side of Young.

However you subscribe, thank you for reading.

Each post will go behind a paywall after 21 days.