Posted 11/26/2007 10:38 PM (GMT 0)
Drossel posted the following on another US based PArkinson's forum and gave permission for it to be included on the PDUK Forum, an inde pendent forum run by pwp for pwp. I have taken small liberties with wording but it is still essentially Drossels piece and I think everybody who reads it cannot help but be moved by it. PD is a cruel assailant that seeks out and destroys, one by one, the abilities that afforded us our personal pride and self image as competent, dignified adults. We struggle to walk properly so as not to appear drunk - forget about the ‘elegant’ walk we once possessed, it was taken away. We struggle to hide our tremor because it makes people stare, and because it often makes us feel feeble and pathetic - forget about moving and expressive hands, the control of that kind of movement was taken away. We sit out the dances at weddings and parties, or we do our best to dance without looking too ungainly - forget about being a good dancer, that ability was taken away [although some of us never had it to start with]. We struggle to participate in conversations without stumbling over words - forget about eloquence, it was taken away. Some strive to be heard with their soft little voices - forget about a beautiful and/or distinctive voice, it was taken away. We struggle and struggle to appear normal and well to avoid embarrassment, both our own and that of others. PD has robbed us of so many attributes that are needed in adult life. PD's aim seems to be to humiliate us, to crush our pride, to rob us of dignity. At times people treat us as if we are slow witted and not just slow moving. Well - I think it is time we start to praise each other for the enormous struggles we know each one of us goes through every day. It is time we realize how proud we should be that we are coping and managing against such odds. Only we can know how hard we have to struggle just to get through each day. Only we can know the sting of regret for what we used to be, the pain of humiliation, the hurt of the stares, the sorrow over the loss of so much of what we considered our 'self'. Almost forgotten is the childhood pleasure of wading through waves when we are wading through treacle simply to get out and back home. So I want to compliment all of you on your fortitude and strength. I think your dignity as human beings is remarkable and admirable. You have every reason to feel pride in every accomplishment, large or small, because for us to perform even the smallest task is often a struggle and a victory. One of our victories is learning to accept and to like ourselves as we are now. Learning not to hate life because we can't be and do what we wish and what we once tool for granted; learning to accept and to like ourselves as we are, to love and to enjoy this life happily and thankfully, just as it is, lumps and all. We have all lost abilities we used to have, and we are all still dignified adults who deal with those losses. This is not a pity party, nor a cry for sympathy: it is a great and heartfelt BRAVO to everyone with pd because in spite of our losses we all do carry on.
Vanity also has much to do with this. My vanity survives as well as my humour. A modest amount of vanity and pride are not altogether such deplorable qualities when you are ailing and/or ageing. Without them we become pathetic. Eccentricity is only funny if carried out with élan and some panache. I'll be the ageing reprobate I'd always planned to become – but with PD. Let us hear it for PD dignity and pride. Next time someone says something thoughtless or cruel, remember your daily victories over so many obstacles, and know that you are the stronger one. Living with PD is a victory in itself. Well done to all of you We are critically ill, though we don't show it. We're not romantically ill like Camille in La Boheme, we're just slowly crumbling. And that is not easy at all to handle. Well done to all of you once again, redoubtable friends.
'Drossel'
A Danish PWP now living in Amish country in the USA.
The Bear