Written by David Napier

What is life like climbing a mountain daily? Well, that’s the question. You never know what each day will bring—what you do know is that you have been there before, but that doesn’t make it any easier.

I used the word “climb” because that’s what it is. You get on, you get roped up. That’s the thing about stiff person syndrome, it’s one hell of a climb.

Some of the things I’ve learned are you have to be your own advocate—you’ve got to not accept “no” or “I don’t know” or “it’s all in your head”. Many professionals know nothing at all about this condition—it took me almost 17 years to finally be given the diagnosis.

Why is it that some healthcare professionals can’t accept that the people they are dealing with know what they’re talking about and may know as much as them, if not more?

Fortunately, I have a brilliant professor. He is honest, compassionate and empathetic, but it has taken me a long time to get there. So, if I have one thing to say, it’s never, ever take the word of just one health professional. If you think there’s something wrong, go and find out. Be your own advocate because you are best placed to know what is going on with your health—you have that lived experience and no amount of qualifications will be able to equal that. Don’t give in, don’t give up.

This condition does wear me down, though. No two days are ever the same; I can be enjoying the TV or reading a book or listening to music and then, out of nowhere, I have full body tremors. No part of my body is spared. My temperature spikes and I can do nothing about it; I just have to ride it out. Often, I have lost the power of speech, too.

But the really hard part is watching the person I love become frightened, even though she has seen this many times before. And then she puts her hand in mine and it stays there until my symptoms are under control.

This journey, this climb is not about me, it is about us—my wife and me. She is the one holding the rope, she is the one who is stopping me from careening down the mountainside, she is the one who encourages and strengthens me.

My depression is unrelenting, too, and it requires medication and ongoing care and intervention, but is almost impossible to get help—finding help that fits is almost impossible.

This long climb has helped us to educate and support people on a similar journey. Some people even laughed when I said I had this condition, but we are no longer laughed at. We have begun to educate and inform people about stiff person syndrome and the devastating effect it can have on people’s lives.

My disabilities do not define me and have, in many ways, been a blessing. They have allowed me to be a very significant part of my grandchildren’s lives, from birth to university, and to volunteer in many capacities, and to advocate for others with disabilities and their carers—too often the unsung heroes of our society—as well as to be heavily involved in research as a participant or researcher.

I also have a strong faith that, and the love and care of my wife, is what keeps me going in our daily struggles. When my professor told us my condition was progressive and incurable he then said, “Stay positive”, and that is what I try to do daily. Is it easy? No, it is not! But you have a choice: stay in bed or get up and get on with life, don’t let the condition define you, you are more than that, so stay positive!

Editor’s note: Please get in touch if you would like to share your own day in the life story: hello@rarerevolutionmagazine.com

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