The last time I was sick put me in a bit of a tailspin. I managed to get through it without a hospital visit but when I went to a friend's house, because I was feeling low about being sick again, I ended up feeling worse. I felt worse because my friend felt the thing she should do was offer medical advice; things I should try because it had helped her in the past.
It was infuriating.
In my life people have told me things I
should do to prevent myself from getting sick. As if I had not
thought of those things in the 40 plus years I have lived with this
chronic condition. They have offered teas, medications, loads of
advice and sometimes blame-- as if I could control the sickness that
upends my life.
Move around more one nurse told me the
day after I was admitted with yet another bowel obstruction. I informed her that I
had ran eight miles that morning before being hit with an obstruction
in the afternoon.
Eat more fibre says someone else.
Experience has taught me that raw fruits and vegetables send me to
hospital as reliably as getting hit by a bus.
These are the things people and health
professionals have typically told me all my life. They have told me
these things because they have never met another person who has the
chronic health problem that I am living with, have always lived with
since birth. Neither have I until this summer.
After deciding that getting sick was
becoming harder to take mentally after each round of obstructions I
finally decided to seek help for the mental trauma that is caused by
living with a time bomb in my own body. But talking to a mental
health professional, while good, just isn't the same as talking to
someone who knows what it is like to think of food as an enemy, to
think of your body as a traitor, to know that at any moment
everything your life will have to be put on hold. Arrangements will
have to be made for your children's care, your job will have to be
covered (meaning less money in your pocket), all plans must be
shelved.
And you never know how long it's going
to last; days, weeks, months...your life falls out from under your
feet and all the while you know that somehow you are going to have to
put it all back together again when you finally get better.
Everything stops and there is nothing
you can do about it.
But the internet has finally given me
answers and a community. This summer I found a group of omphalocele
survivors, people who live with the same birth defect I have (a rare
abdominal wall defect in which the intestines, liver, and
occasionally other organs remain outside of the abdomen in a sac
because of a defect in the development of the muscles of the
abdominal wall). Not all of them experience obstructions like I do
but we all have had health issues and worried about our ability to
have children of our own (female survivors) due to complications from
our condition.
Suddenly I was no longer a unicorn.
It is impossible to express how much
this has changed my life – to know that somewhere out there people
will understand what is happening to me, what I have lived with and
continue to struggle against.
The understanding is just the
beginning. There are also helpful suggestions from adult survivors-
there are not that many-- on how to deal with obstructions and a
dietary regiment that will help reduce obstructions. Contrary to what
I had been told by the medical community all my life, what I need is
a low-fibre diet, not a high fibre diet.
I followed this low-fibre diet advice
while travelling this summer and felt so much better.
It may be hard for the healthy or the
diagnosed to know what it is like to live with a serious health
problem that is not understood and rarely known. I have explained my
condition to health care providers, family and friends all my life;
no one has ever not needed me to explain what was wrong with me. No
one has ever said, “Oh yes, I know what that is.”
To finally find your community, to find
people who can actually help; it's revolutionary. The world is
different for me now and knowing this group is out there-- even if I
never meet them in person-- marks a turning point in my life.
Throughout my life I have never met
another O-survivor. I had never met a doctor who upon seeing my scar
knew what it was.
But despite that I would consider
myself lucky in the doctor department. Where I live now, in my
hometown, my docs know my condition and they never hesitate to treat
me when I present with an obstruction.
I have moved a lot in my life and had
new doctors poke, prod and test for many hours before finally
agreeing that my problem was a bowel obstruction and finally providing pain medication.
I was luckier than anyone has a right
to ask for when I found a great abdominal surgeon in Bangkok –
where I lived for almost a decade-- with my first hospital visit in
the city to an obscure hospital not frequented by foreign nationals.
It was the closest hospital to my apartment and just happened to be
where Ajarn Suthep, who spoke excellent English and who had done his
residency in upper New York state, practiced. He saved me from pain
and torment on numerous occasions and saved my life on Christmas Day
of 2003 when I presented with a obstruction that was turning
gangrenous.
After 40 years this long road seemed to
be getting longer. I hated being alone with this internal explosive.
Finding this group was a lifeline I desperately needed. I don't
comment much on the message board and I often find it difficult to
see the children in the group who are now going through such horrible
medical ordeals and harder still to see the poor children who don't
make it into the O-survivor group; the O-angels.
I've been wanting to write this post
for several months but the closer things are to the bone the harder
they are to write.
I am so thankful to have found what I
needed. I'm a unicorn no more and that in itself makes my life
easier.
