davidbeckham1111

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
as if
he'd now gotten to the interesting bit. I resisted the temptation to
answer, "Your place or mine?". After all, this was a neuropsychologist
and
he'd tried every other line of questioning to find a cause for my
spasms.
Sadly, he'd also never heard of dystonia, despite working in one of
the
major neurological hospitals in England.
At the time, when my neck was writhing around in spasms, my posture
was
bent over and I looked like something the cat dragged in, this
question of
***, seemed a little irrelevant. However, I'm sure it is one that many
of
us have faced when sitting, by misdiagnosis, in the psychiatrist's
chair.
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
spiders.
Psychiatrists can see *** as a source of many problems, yet the minute
you
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
all
sorts of things. We hear about updates in treatments, personal stories
and
tips on how to cope with losses of all sorts, financial, career,
mobility.
Yet, I have never seen the word "***" mentioned.
Why? Perhaps *** is seen as something that is not quite suitable for
us to
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
picture
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
bedsocks.
It is a subject that I have never felt brave enough to discuss with
any
member of my group. We've covered botulinum toxin injections ad
nauseam,
the merits of consultants ("He's a funny chap, isn't he!") and how to
pass
the days in pain, but we've never mentioned ***. By ***, I don't mean
just
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
with
dystonia, All those personal intimacies that only you and your partner
know
about each other, providing a sense of belonging in an impersonal
world.
*** and ***ual relationships can touch all of us with dystonia,
whatever
our personal situation. Married, single, young or old, most people
are
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
partner
when one's social, work and financial life has been devastated and
when
one's physical appearance is so obviously "unusual"? Opportunities to
meet
partners are severely restricted and how many people are wise enough
to
know that the person behind the strange muscles is normal, human and
just
as capable of emotions as anyone else. In this world, physical
appearance
is all, and even the strongest amongst us loses confidence when our
ability
to control our own bodies is restricted.
For some dystonia sufferers, their condition does not restrict their
lives
that noticeably, yet they are visibly different in a world of
apparently
perfect people . We become known as "you know, the one with the funny
neck"
so that our stunning beauty is overlooked as our spasms take priority.
Or
we find ourselves able to cope with our day to day work and accepted
to
some extent, but not sufficiently integrated to be considered capable
of
dates, romance, or perish the thought, ***. For others, dystonia has
meant
the end of work and social life and a severe drop in living standards
so
that even if we can still get out a little, we are limited in where we
can
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
chemists.
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,
with
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
lucky
enough to have stable friendships, even marriages and so we tend to
think
that married people are immune to the ***ual problems dystonia may
cause.
Yet, in a society where many marriages or live-in relationships are
hanging
by a thread, dystonia can be the effective sword to sever the
relationship.
If love is strong, we have caring hands to guide us, massage us and
soothe
our troubles. If love is weak, we receive complaints of how the
illness has
disrupted the relationship, ruined "their" life, with rarely a thought
for
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
about at
all, or need the support of a carer or parents to function. We also
forget
that however disabled people are, they are still individuals with
needs for
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
well?
Happily, the ***ual aspects of disability are more widely acknowledged
nowadays and it is not seen as offensive that disabled people should
have
their needs respected, and even catered for. However, unless we
address the
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
little
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
stand
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
doubts,
spots, worries about schoolwork, first kiss, in precisely the same way
as
their able-bodied friends. The parents who insist on sheltering
children
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
on
the roof but there's a fire in the grate" is one we shouldn't
overlook.
Having an illness and being older must surely mean that any idea of
*** is
out of the question. Why? Why should ***, love, companionship only be
for
the young, fit and beautiful? Elizabeth Taylor, Brigitte Bardo and
Sophia
Loren would all qualify for a bus pass and pension, but nobody
suggests
they are past it. Someone in their sixties may have alot to teach us
about
coping with dystonia and ***uality because they've faced the problem
and
possibly found solutions. They've also learned that the flush of
passion,
though exhilarating, can be outlived by the tenderness of true love.,
when
sharing cocoa is every bit as enjoyable as sharing ***.
My own solution to the *** problem has been celibacy. It was
something
that I had never envisaged, something that I would have pitied.
Surprisingly enough, I rather like it. It is a relief (no pun
intended) to
be able to be free from the strain and excitement of ***ual
relationships.
Men, who were once a hobby akin to swimming or needlework, are now
people.
I don't worry any more about looking good enough to get a man, now I
look
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
enjoyable
and far more relaxed. My range of interests has widened immeasurably.
There
is so much time when one leaves behind all those hours spent gazing
into
each other's eyes. After years of thinking that life without a man was
no
life at all, I've learnt to be an individual, not half of a couple.
The
frission of ***ual interest hasn't gone, and I hope it never will.
Celibacy
is a choice for the present, not a vow for life. If love chooses to
find me
then I will welcome it. If not - there's always the library!