Diapers, Botox, and Red Lines: By far the hardest post to write so far

I have just crossed my own red line, and instead of hiding from it, I am choosing to own it. I’m exposing what to me has been a taboo topic not because I want to but because I feel I have to.

This is a place I never wanted to go. It is deeply embarrassing to me – the kind of secret I would prefer to keep locked away forever. But secrecy is a luxury I can no longer afford on this PSP journey. I am choosing to act ahead of time, before a challenge becomes a crisis.

Yes, I have just placed an order for adult diapers. Technically, they are “adult protective underwear,” the step just before full diapers, but let’s not mince words: the reality is effectively the same.

I have thought about this carefully. I am sharing it because a serious conversation about Progressive Supranuclear Palsy cannot avoid realities like this. I have bought something online that I never imagined I would need and I can’t quite believe. And while I feel anxious about the box arriving at my doorstep, the truth is unavoidable: I am at the stage where I need this. I can no longer ignore it.

The Logistics of a “Simple” Task

The reality is simple but brutal: it now takes me a long time to reach the bathroom.

For five years, I have managed urinary issues with three different medications. But now, the logistics have shifted. To get to the bathroom in time, I have to transition from sitting in a chair or lying down in bed, get myself upright, transfer into a manual wheelchair, and put on wrist splints (because wheeling the chair hurts without them). Only then can I get moving and moving means moving very slowly or being pushed.

Many of you will understand that this is not a quick undertaking. It takes minutes I often don’t have.

It saddens me more than I can express that, at fifty years old, I need something I always associated with babies or the infirm elderly. It is distressing on many levels. Other people might not find this a big deal, but to me, it feels huge. So why am I sharing this? Am I simply an idiot?

The Choice

I could use this moment as a reason to stop blogging. I know that from here on, there will be more topics like this, and I don’t know how long I will be able to continue writing.

But stopping now is not who I am.

Silence would not help me, and it would not help anyone else. If I cannot speak about this, then who can? I believe it matters that this voice is heard. Simply pretending that this is not an issue will make the blog not authentic and will ignore the voices of any people who go through difficult diseases like this.

I have two options: I can pretend nothing is changing, keep struggling, and ultimately fail in a way that feels forced and humiliating. Or I can accept what is already beginning and take action on my own terms.

I choose the latter.

Beyond the Taboo

This is a sensitive topic for the people around me, too and I know that I will upset some by making this so public but I believe this is truly the right thing to do and apologize to those that don’t agree with me.

I hope there will be emotional support as opposed to “is he an idiot sharing this stuff” for this post, because I will not pretend that I am invulnerable. Sadly, this is one of the inevitable consequences of PSP and relying on a wheelchair. But while this condition changes my life, I refuse to let it define me.

This isn’t an isolated issue. It’s just the latest front in the war. Yesterday, for example, my eyes simply would not open unless I manually pulled down my eyelid. Now I am considering Botox – another thing I never pictured in my life. But this is PSP.

Writing as Therapy

We are entering the stage where cartoons and lighthearted animations simply do not capture the reality anymore. We are at the raw end of the journey – the parts that I, as a lifelong prude, find the most uncomfortable.

Writing this is therapy. Not avoidance – therapy.

If I want this blog to help me, I cannot hide from the hard truths. I need to speak for everyone going through these changes who feels the same shame. We must remember it is not the person who causes these problems. It is the body – in this case, the brain. The person inside is still the same person. For those with faith like me I have to recognize it is part of the challenge I must confront and that it is not by accident.

So yes, I am waiting for my delivery. But no, I will not be doing a product review.