This is a portion of an email that i sent to a dear friend of mine who was trying to understand what it is like to be in limbo land.

i think there will be lots of people out there that might can relate to this.

The context of the conversation between myself and my friend is: he was encouraging me to "move on with life" and to try not to be so focused on getting an answer for what may well be the unexplainable.

he included this quote in with his email. the quote is from the college roomie who was totally blind. His roomie used to say "everyone has a disability, mine just happens to be total blindness."


I agree with him, b/c nothing motivates me more than to be able to fill in the blank and move on! My friend is married and has a son. This is my neuropsychologist friend of mine and his last name is McDaniel.


"....Being able to say "Hey we all have challenges and mine just happens
to be __________" is all i really want out of this!
Thats it! nothing more nothing less. I'm already at
that point but yet i continue to struggle to fill in
the blank.

Think of it this way, this will be a weird analogy but
try to make this connnection. ok you and you wife had
a baby. cute little baby boy or girl which ever. But
you both fought over the the naming so much that when
i came time to write a name on the birth certificate
the first and middle name was LEFT BLANK!!!

so on the
official birth certificate the only name for that
child is McDaniel. Wow that tells us a whole lot
about the gender and personality and everything of the
child. So identifiable as THAT child that when the time came for the
SSN to be issued there was no name on the card and no
SSN for that matter b/c that name is not uniquely
identifiable.

Then the child grows up and still you
and your wife are fighting over the name. the child
is called IT or boy/girl (as the case may be) and gets
teased in school b/c it is the child with no name (IT
is different from the other kids and has a physical
impairment on top of it all, and the others kids feed
off of that child's suffering).

So at age 18 this
child separtes from you and your wife and has had
enough of being called IT and Boy/girl. So IT goes on
a quest to find the perfect name and get it LEAGALLY
CHANGED. Only one little problem. A SSN was never
issued for IT (don't ask me how IT got though school
w/o the SSN but he/she did) and therefore there is no
record of ITs birth or life to legally change!

Now you can see IT and you can touch IT and you can
hear IT but IT does not have a name and you think IT
is going to rest till IT stops not having a name all
of his/her own?????

THAT is where I am. I am the person with something
inside me called IT and this disease or what have you
is the nameless void that is just as real as I am yet
IT does not have a name.

You see that is where me and
your college roomie differ. HE had a name for his
challenge, yet I do not have a name. I have IT, and I'm trying to keep IT from having me! I hope
this analogy helps you understand why I am so fixated
on getting a NAME for this thing.

It is PART of me, but it is NOT who i am!!!

I don't like being defined as this thing any more than
the child IT likes being called IT. I want to be
defined for WHO I AM, NOT what challenges that i have.


Yet with out knowing the name it is the blind man
trying to describe an elephant. how does he do it.
he can feel it, he can touch it, he can sit on top of
it, he can even smell it and hear it. but will he
ever be able to describe that elephant again if he is
not given a standard name for this weird creature???"

That is my world right now, that is my reality.

Can anyone else out there related to this?

Bobcat

WOW what a great analogy "IT"

I do understand not having a Name to the thing that buggs you and interupts you from "moving ON.

For me, I HAD a MS DX, mild or benign, then taken away by his PA and another neuro, due to another kind of problem NOT related to MS, yet neurological.

Finally, I get to see my MS neuro again and he and another neuro together say I now have Fibromyalgia becuase of my newest symptom is Muscle PAIN...and still yet another neuro conditon with NO Name. Sends me to yet another Neuro to check it out further.

See 2 Rheumatologist and they say NO, its not fibro and still they do their best to come up with a possibility and their lab tests say no. Hmmm..

BUT..the MS neuro did add, "I never rule MS out"
And as a result will continue to monitor my complex case.

GREAT analogy tho... feel my support ok hon?

Warmly, Jan

THANK YOU JAN! I appreicate the encouragment, heaven knows i need it right now. I hope you get your answers too, I KNOW what you are going through! Hang in there and we will get through this thing together. I am feeling a bit better than I have in days past b/c I am starting to be more at peace with myself but still wish that IT had a name!

Dear Bobcat
I can so relate to what you have conveyed in your analogy!

we went thru no dx and misdx ups and downs for my son with both his Tourette Syndrome and Crohn's Disease. It was a scary time of uncertainty & confusion.
As sad and challenging as it was to finally get accurate dx, yet it also brought a sense of releif as we knew what IT was and could work to try to make his life as good as possible, even with IT

I hope you do get clarity in what your sx mean, tho more than anything I hope they will diminish or just go away

lifting a prayer for you
Cheri

Good post: I find the only way I could ignore the persuit is to not have symptoms. If it's there, it will come back again and I'll be all over it. Since I've recovered, I am getting on with life. Whether it ever comes back or not only time will tell. I hope you get your answers, but don't be crushed if its not ready to show itself. Its very common around here. Best to you!!

Dear Bobcat

I can certainly understand your frustration. Good analogy.

I think the not knowing is the hardest part. Knowing that there is something wrong and being told that it's "all in your head" is cruel sometimes. Having the support of your friends and family when you need it is critical. Not everyone understands that. I truly hope you get the answers you need and the support you most certainly deserve.

I am sitting here listening to soothing music and trying to relax. The weird thing about limbo land is that it puts you on edge and then suddenly pulls the plug on your emotions and psyche and everything that makes you you and not IT goes flowing away in the flood of overwhelment.

I have been through the whole range of emotions the past few days and weeks. I had an occupational therapist identify the bulk of my visual problems (the sx cause) and then she told me she could teach me how to compensate for it in a way that almost sounded like she was promising a cure! That was hard b/c i am about to start a job and I don't have time for 4 weeks 2x per week of occupational therapy. I simply can NOT take off work on a regular basis when just beginning a new job!!! I don't know what to do!

Any suggestions?

That's a great analogy. I think all of us in limbo can relate.

For me, my quest is two-fold: finding a name for IT and finding something that will stop or slow IT down.

I am so tired of living with IT and not even knowing what IT is or how to make IT stop terrorizing my life.

Bad, bad IT!

Maybe the OT can work around your schedule. Talk to the OT and find out what this program is and see if it there is some way the two of you can work out a practical schedule.

Hang in there Rachael...you've got a lot of support.

Wow what a great analogy...
that is ME>..someone with IT hanging around..making some days so very hard...to even stand...other days...making my body tingling with pain....

what a great way to explain, when someone thinks forget about IT!!

hugsss and thanks very much for sharing...hugss,sarah