27th August 14:47
*** and Dystonia (phobia erectile dysfunction disability dystonia)
In view of my post about erectile dysfunction, perhaps it is
worthwhile reviving this. (An appropriate verb!)
***, celibacy and spasms, considered by a member with dystonia
"Physical appearance is all, and even the strongest amongst us loses
confidence when our ability to control our own bodies is restricted."
"So what about ***?" he asked, leaning further forwards in his chair
he'd now gotten to the interesting bit. I resisted the temptation to
answer, "Your place or mine?". After all, this was a neuropsychologist
he'd tried every other line of questioning to find a cause for my
Sadly, he'd also never heard of dystonia, despite working in one of
major neurological hospitals in England.
At the time, when my neck was writhing around in spasms, my posture
bent over and I looked like something the cat dragged in, this
***, seemed a little irrelevant. However, I'm sure it is one that many
us have faced when sitting, by misdiagnosis, in the psychiatrist's
It is, after all, a part of life, every bit as important as whether we
hated our father, can't make relationships, or have a phobia about
Psychiatrists can see *** as a source of many problems, yet the minute
cross the divide and have the respectability of a physical illness -
dystonia - all mention of *** recedes into the closet.
In the Newsletter we are lucky enough to be treated to articles on
sorts of things. We hear about updates in treatments, personal stories
tips on how to cope with losses of all sorts, financial, career,
Yet, I have never seen the word "***" mentioned.
Why? Perhaps *** is seen as something that is not quite suitable for
talk about. After all, People with disabilities aren't like that - are
they? Of course we are. While we may not be crying out for a page 3
of some nubile dystonia sufferer, we have to be honest and admit that
dystonia can be a passion killer on a par with thermal vests and
It is a subject that I have never felt brave enough to discuss with
member of my group. We've covered botulinum toxin injections ad
the merits of consultants ("He's a funny chap, isn't he!") and how to
the days in pain, but we've never mentioned ***. By ***, I don't mean
physical ***, but all the things surrounding a relationship. All those
gentle, funny, warm, caring things that can only be found in a ***ual
relationship. All those loving feelings that can be denied to someone
dystonia, All those personal intimacies that only you and your partner
about each other, providing a sense of belonging in an impersonal
*** and ***ual relationships can touch all of us with dystonia,
our personal situation. Married, single, young or old, most people
aware of their ***uality to some extent and the effect it has on their
functioning and happiness.
For the single amongst us, dystonia can be a real problem. I may be
imaginative enough to find ways round the physical problems, if only I
could get my hands on a suitable candidate! How does one find a
when one's social, work and financial life has been devastated and
one's physical appearance is so obviously "unusual"? Opportunities to
partners are severely restricted and how many people are wise enough
know that the person behind the strange muscles is normal, human and
as capable of emotions as anyone else. In this world, physical
is all, and even the strongest amongst us loses confidence when our
to control our own bodies is restricted.
For some dystonia sufferers, their condition does not restrict their
that noticeably, yet they are visibly different in a world of
perfect people . We become known as "you know, the one with the funny
so that our stunning beauty is overlooked as our spasms take priority.
we find ourselves able to cope with our day to day work and accepted
some extent, but not sufficiently integrated to be considered capable
dates, romance, or perish the thought, ***. For others, dystonia has
the end of work and social life and a severe drop in living standards
that even if we can still get out a little, we are limited in where we
go and what we can do. Opportunities for romance don't abound at the
library or the doctor's surgery or standing in the queue at the
We can't go to clubs or parties (who invites us anyway!)
and our lives tend to shrink into Coronation Street and a good book,
the odd limp to the post office for our benefits.
Dystonia has a nasty habit of appearing, out of the blue, in our
thirties, when our lives have assumed a rhythm and routine. We are
enough to have stable friendships, even marriages and so we tend to
that married people are immune to the ***ual problems dystonia may
Yet, in a society where many marriages or live-in relationships are
by a thread, dystonia can be the effective sword to sever the
If love is strong, we have caring hands to guide us, massage us and
our troubles. If love is weak, we receive complaints of how the
disrupted the relationship, ruined "their" life, with rarely a thought
the sufferer. Surely it is bad enough for someone to develop dystonia
without facing the loss of their relationship as well.
Perhaps it is easier to forget those of us who are unable to get
all, or need the support of a carer or parents to function. We also
that however disabled people are, they are still individuals with
privacy, fantasy and personal space. They may need help with washing,
dressing, etc., but wouldn't they also like to be a ***ual being as
Happily, the ***ual aspects of disability are more widely acknowledged
nowadays and it is not seen as offensive that disabled people should
their needs respected, and even catered for. However, unless we
problem and recognize that disability doesn't mean a complete loss of
***ual drive, we will remain in the dark ages. Parents of children,
disabled or not, have a horror of facing up to the fact that their
offspring may be becoming aware of a stirring of their hormones. It is
perhaps extremely difficult to acknowledge that their ****ager with
dystonia wants and needs of an intimate relationship. It is hard to
back from a wheel chair and let a strange adolescent take charge for a
while: but that is exactly what has to be done. A disabled **** needs
friends of their own age and both ***es: they need to discuss their
spots, worries about schoolwork, first kiss, in precisely the same way
their able-bodied friends. The parents who insist on sheltering
because they are "different" will do nothing but insure that these
differences are highlighted, instead of integrated into normal life.
We seem to assume that the onset of grey hair and arthritic joints
automatically knocks out *** drive. The old saying, "There may be snow
the roof but there's a fire in the grate" is one we shouldn't
Having an illness and being older must surely mean that any idea of
out of the question. Why? Why should ***, love, companionship only be
the young, fit and beautiful? Elizabeth Taylor, Brigitte Bardo and
Loren would all qualify for a bus pass and pension, but nobody
they are past it. Someone in their sixties may have alot to teach us
coping with dystonia and ***uality because they've faced the problem
possibly found solutions. They've also learned that the flush of
though exhilarating, can be outlived by the tenderness of true love.,
sharing cocoa is every bit as enjoyable as sharing ***.
My own solution to the *** problem has been celibacy. It was
that I had never envisaged, something that I would have pitied.
Surprisingly enough, I rather like it. It is a relief (no pun
be able to be free from the strain and excitement of ***ual
Men, who were once a hobby akin to swimming or needlework, are now
I don't worry any more about looking good enough to get a man, now I
good, or not, for myself. Now that I have been freed of being on the
relationship roundabout, I have found friendships with men to be
and far more relaxed. My range of interests has widened immeasurably.
is so much time when one leaves behind all those hours spent gazing
each other's eyes. After years of thinking that life without a man was
life at all, I've learnt to be an individual, not half of a couple.
frission of ***ual interest hasn't gone, and I hope it never will.
is a choice for the present, not a vow for life. If love chooses to
then I will welcome it. If not - there's always the library!