Being invisible can have its advantages. You can get away with a lot of things if people can’t see you. Even if they can see you, being an invisible character in the story of life can be advantageous too. Middle-aged people are notoriously invisible. You see, they just don’t fit in with the beautiful people anymore. Wrinkles, sagging flesh, balding heads, droopy boobs and butts – well, they’re just not “de rigeur”. I find it amusing that in a crowded bar or club (which I don’t frequent that often these days), I become part of the decor. There, but not worthy of attention.
Screw that. I don’t care to be visible to the Kim K’s of the world anyway.
FTD is invisible. The only evidence of its presence is behavior. Behaviors that don’t conform to our well-ordered norms. Social morés dictate that most of the actions we see demonstrated by our FTD’ers will make them pariahs to all but the thickest-skinned observers. But when your FTD’er is behaving acceptably, they become invisible too. Another grey-hair in the midst of many.
FTD itself can only be seen by sophisticated technology. Even then, there’s no guarantee. Only after the bastard disease has completely decimated what remains of the person you have loved and cherished for so long can the damage be seen by those who make it their business to look. That’s the physical damage of course. The damage that has been inflicted on everyone else around that lacy brain is immeasurable. Invisible. Felt only inside the hearts and souls of those that remain.
We remain, but we are also invisible. To everyone but those who are the very closest to us.
The person who has FTD –your wife, husband, lover, friend, parent. They are invisible too. Or rather, the inner workings of their brain are. I firmly believe that there is, on some level, a degree of understanding within the FTD brain. A knowledge that they are here, but not with us. A certainty that they are, like unmanned boats, drifting away from their safe harbor. But, because it is invisible, there is no way to know. This must cause fear. I know it would scare me. Maybe that is what incites the behaviors. I know that the degeneration causes lack of insight and inhibition. I know that FTD takes over the brain like an invading army into an ill-prepared country. But the person? What about them? The very essence of what makes us – well, us. Do they scream for attention? Is that what we hear when we look at the OCD? The persistent stacking/folding/calling out in public/being rude?
Or am I giving them too much credit? Is it simply that FTD has destroyed so much that there is little left to cope? Does FTD destroy the soul? The essence of humanity? I know, such a lot of questions. Usually at this point in the article, I give you a list of possible solutions to your problems. A bulleted paragraph of pointers as to how to handle your life. Huh! Far be it from me to pontificate about your life. Only you are living it. I lived my own private despair and hope that I can share what I learned. Usually.
But today, I am more philosophical. Although that doesn’t really help you does it? How about if I share someone else’s words? A slice of how it was for someone who lived and died with FTD? Dr Bob Fay spoke at an Alzheimer’s conference in London in 2003. Here is an excerpt from his speech:
“Pick’s is a sodder. It has changed me in subtle ways that outsiders find very difficult to understand, but are all too apparent to my wife and family, It has cut short my career as a General Practitioner; it has stopped me from driving; it has caused much grief and distress to my family. It has a name, but no known cause. It has a very unpredictable course, and it has no treatment. It’s a sodder, it’s a sodder, it’s a sodder. I am not seeking sympathy, but I hope that by conveying the truth about this disease, from my point of view, from the inside, you may be enabled to understand it better. Dementia has no dignity, no compensations: it continues day by day, year by year, to take and take and take, until death comes as a relief to all.
Dementia brings anxiety, anger and grieving to the sufferer. It may be bravely born, but it is not fun; it is not an acceptable alternative lifestyle. Our experience has been that in fact some psychiatrists, geriatricians and neurologists are fairly ignorant of some of the rare young-onset dementias like Pick’s, and if they have areas of ignorance in those conditions, then I suspect that most of the other health professionals who are involved with dementia sufferers, are similarly lacking in knowledge. That is quite understandable and I am not seeking to belittle, after all I was a GP only 8 years ago who was totally ignorant of any dementia that wasn’t Alzheimer’s.
Incidentally what a very unfriendly word “Dementia” is! Technically I must have been “dementing” for about 10 years. To me the term suggests INSANITY (and the dictionaries agree.) To be demented implies being frantic, overactive, out of one’s mind. I haven’t settled on a better term, but I usually either say I have Pick’s disease or that I have a degenerative brain disease. Sometimes I call myself “an old Dementonian” but then people think I’m claiming to have had an elitist education! I think the general public gets misled by the term dementia”.
You can read the rest of Dr.Bob’s talk at http://www.theatfd.org
Anyway. Invisibility. There’s no bulleted list I can write today. mainly because I don’t really know how to help you handle invisibility. I am invisible too, being a fifty-something person. I don’t have FTD (as far as I know). But I have had the misfortune to have seen the effects of the bastard disease on some of the brightest, most articulate and intelligent brains. Invisibly doing its dirty work, like a glass scalpel.
You can remove the cloak from yourself. You can make sure that the world sees what is happening. That is the only way that the bastard disease will ever be defeated. The sword and shields of love will help us. Love and a determination to make people sit up and listen. Become aware. They can ignore us. They can pretend we are invisible.
But we are here. As more diagnoses take place in our booming generation, as more people demand attention from governments, the CDC, society at large, people will want to know. We can tell them “We’ve been there, done that”. “What do you want to know?” “We’ve been waiting!”.
An invisible force. A veritable treasure chest of information. Resources that we are just beginning to realize are and will be necessary. That’s us.
Throw off the cloak. Speak up. Demand attention. Be visible and loud.
Together we are not invisible.