Dear Loved One, They May Not Know Either

I see the same questions again and again in PSP support groups.

Carers trying desperately to understand:

• Why does my husband or wife want to be alone for long periods?
• Why do they find it so difficult to communicate?
• Why aren’t they looking at their texts or emails or answering calls?
• Why are they angry?
• Why are they apathetic?
• Why do they sometimes seem like a different person?

I hear it all the time.

Then I saw this message from a carer:

“I’m noticing my husband’s moving slower, getting harder to walk with this walker. He’s in bed at least 15 hours a day. He doesn’t talk to anybody. He doesn’t answer any more texts or phone calls. He never really talks to me. I feel like I’m living with a stranger. My heart hurts.

I was asking my husband just now why he doesn’t like to talk and he says it hurts. I asked where it hurts and he will not answer me. He tells me I ask too many questions.”

I replied. This was my actual reply:

————-

I’m on this journey as a patient. I’m nowhere near where your husband is, but I’m getting there slowly. I’m 6.5 years in since my first symptoms.

I write like crazy and try to put my feelings into words on my blog, to give people a window into this experience. Even with all that writing, I still can’t explain it properly sometimes.

There are periods when I feel like I’m living with a stranger too. Then I come out of it and feel like myself again. It’s a bit like Jekyll and Hyde.

Sometimes I feel like I am in a fog. Sometimes I feel frozen. Sometimes it’s like I’ve powered down and have absolutely no energy, like an old iPhone that starts with a fake 100% which is really about 40%, and then just runs out.

Not just physically, but mentally and emotionally too. Talking feels hard. Thinking feels hard. Even explaining what’s wrong feels impossible.

There are periods where I feel angry, apathetic, totally uninterested in talking or listening, and just want to close my eyes to the world.

My phone used to be my crutch. Now, with my eyesight, despite many pills, Botox and special lenses, the phone is hard, and then on top of that I often can’t face it.

I’m fighting it with every countermeasure I possibly can, but it’s hard. I’m learning that PSP doesn’t always fight fair.

I wish I had a better explanation, but perhaps that’s my point: he may not have one either.

I don’t know whether it’s neurological, psychological or physiological, but I know it’s PSP.

We’re not given the tools to understand what is happening to us, let alone explain it to the people we love.

Your frustration may be mirrored by his frustration. In fact, every question may remind him that he can’t tell you why.

Not because he doesn’t want to. Because he may genuinely not know. I wish I had better answers. You all deserve them.

_______

I kept thinking about that reply afterwards. Because this is a question that comes up so often, and I truly wish I had better answers.

I have spent an extraordinary amount of time trying to understand this disease and trying to describe what living inside it actually feels like.

I read the research. I ask questions. I monitor what is happening to me. And I write.

In fact, in just over six months I have now dictated more than 400,000 words.

Four hundred thousand words trying, in one way or another, to explain this experience. And I still can’t always explain it. There are times when somebody asks me what is wrong and I genuinely don’t know.