RLS: Einstein and us

[Guest guest]

Dear Group,

I've been going through some of the emails I've saved from this year. I

found one I wrote, but I'm pretty sure I never sent it. It's a letter of

appreciation for what is good about this support group. I'm sending it to

you, now, for those of you who would like to reflect a little and see (from

my point of view) how far we've come and what we've really developed here.

It may also be of interest to newcomers, who are still wondering what we're

all about. Parts of it read like a New Year's resolution, so it seems an

appropriate time to pass it along.

It was a year ago January, when I first learned there was a name for this

affliction. It's been one of the most interesting years of my life,

learning from all of you, and sharing our quest for relief. There's

nothing earth shattering in this extremely long letter. So feel free to

delete it, or read it next year. Here's the letter...originally written

last September, but never sent.

Jill

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What I love about this email group, is that so many people are so curious

and interested in researching written materials, learning about what others

are doing to treat their own RLS, and studying their own behaviors and

treatments. None of us are satisfied, yet, with the answers we've found,

but we are still searching. I love an intelligent group that is open to

possibilities. What is important to me, is not whether we find the

answer that is right for everyone, but that we are searching and sharing

our findings and thoughts, and by doing that, we are bringing relief to

many people. Even if the relief is only temporary, at least we feel more

powerful than before we started learning.

I have a poster on my wall, with a quote that I love, from Albert Einstein,

" The pursuit of knowledge for its own sake, an almost fanatical love of

justice, and the desire for personal independence....these are the features

of the Jewish tradition that make me thank my stars I belong to it. "

He wasn't saying the features are present ONLY in his faith....but just

that they were traditions of his faith and ancestors that he truly

cherished.

I can identify with Einstein's comment. I love searching for

information.....even if I don't find all the right or perfect answers. I

still learn so much, along the way. When it comes to RLS...I may not live

long enough to learn the cure...but I'm loving the search...and I'm

benefiting from my learning along the way. If I keep benefiting at the

rate I have since January....I think I'll make it to my death in better

shape than I made it to 46!! I may try some things that only work

temporarily....but if it buys me another few years of peace, that's great.

I'll do my best to NOT waste money on miracle cures which I don't carefully

consider. I'll also do my best to NOT do anything that will cause

dangerous side effects that are worse than my RLS condition. And even if I

occasionally resort to methods that treat the symptoms, possibly covering

up the problem, I will do my best to continue my search for ways to be more

in control and more resourceful in fighting my RLS with the simplest and

handiest means. But...I may make some mistakes along the way. Especially

when I'm tired or caught off guard, I'm likely to resort to methods which I

will normally try to avoid. There are definitely times when I'm stronger

than others, but I will continue to search out new information.

Einstein also mentioned " a love of justice. " For me, this means a love of

impartiality and fairness, and when possible, a love of what is correct.

When it comes to RLS, the information that is " correct " is still so " iffy " ,

as it applies to each individual. We might know what a study has shown to

be true...but we are still learning how those studies apply to and affect

each RLS sufferer. So, until the information is more universally

applicable, I will continue to appreciate a group like this email group,

where people can share what they learn and what they think and what they

come across...and where that information is usually accepted with fairness

and impartiality...but also with MANY " grains of salt " and with discerning

and questioning minds. There have been very few cases of people saying, " I

know this to be true, so you should all do what I say and use MY

treatment. " This group has very little patience for that. But it DOES

love to hear new ideas and share information it finds, and then leave the

rest up for non-judgemental discussion. It's that free sharing of

information I love about this group. I find that when there's a

disagreement, it often leads to a revealing discussion. What is most often

revealed is that the two parties are really in agreement, not DISagreement.

We come from different corners, with slightly different symptoms and

variables, and we support different theories for treatment. But

ultimately, we agree on our purpose and on our desire to be safe and

careful. That is what's important.

The final part of Einstein's quote, refers to a " desire for personal

independence. " For me, the greatest independence we have, is our right to

think, form, and express our own opinions. That freedom, however, comes

with a responsibility to not harm others or over shadow THEIR efforts, by

inappropriate authority when stating our opinions. We've realized that we

are knowledgeable about our own affliction, and that our own knowledge,

combined with our doctor's knowledge, is the best combination of all. We

can seek truths from the most learned scholars of the land, and we still

have every right to disagree with them and to have our own thoughts and

ideas considered. THAT is true freedom and independence. We've learned

this when we've coached each other before a doctor's visit...when we've

suggested the person go loaded with printed information and to be as

educated as possible. And we've pushed independence when we've told people

to not feel victimized and helpless. We've pushed independence when we've

warned people to not be intimidated by a doctor, or to never accept a

situation, opinion, or therapy without question. We know there are great

doctors out there, and great research being done, and we are learning that

WE are also a vital part of that doctor/patient relationship. We must

remain independent and confident in what we know, as we reach out and form

our relationships with the learned professionals.

In this group, personal independence is an essential quality.

We don't dare shut someone down for what they say or speculate, if it's

working for them or their loved ones. We know it might not work for

others...but most of us would not think of depriving a person the thrill of

finding relief from their RLS...whether it's temporary or permanent.

Sometimes we become a little skeptical and sometimes we become a little

overprotective, warning people that their therapy might be temporary or

might just be the result of a placebo effect. Sometimes we don't know how

to respond, like when someone says they have it under control and are

leaving the group. I know it makes me happy for the person, but sad for

myself that I don't have my own RLS under control. I hear myself saying,

" He'll be back. " And then I pray he won't have need to come back. It's a

crazy cycle of thoughts. Sometimes, we just don't know what to say.

Obviously, we would warn a group member if we heard he/she were doing

something dangerous, or something that has made things worse for numerous

other people....but I like to think some of us WILL find treatments that

will keep us in control of our RLS....maybe even permanently. I'm willing

to believe it's possible. Each person in this group IS independent. Most

of us ARE intelligent. And most of us are extremely generous in our

willingness to share and/or learn from others. With all that...there is hope.

It's a wonderful environment...with some very wonderful people. They may

not be brilliant. We may not have all the right answers. But we share

what is pertinent to us and relevant to our own research and questioning.

And we continually remind each other, kindly, that when it's not pertinent

to what we are personally needing or researching, there's always that

Delete key.

I'm not sure this letter, for instance, is worth everyone's time of day...but

it's important to me...and the side effects are hopefully minimal. And the

only reason I share these personal opinions with the group, is that I'm

guessing there are others among us, who will find these thoughts

helpful, supportive and maybe encouraging. There are others who deleted it

without reading it...just because it was too long, or they've decided to

not read any of my letters. That's fine. That's the beauty of this group.

My thanks to everyone in this group, for all your thoughts, research,

sharing, and questioning, no matter how bizarre or crazy it's seemed. Some

of the most seemingly irrelevant questions, have turned into some of the

most helpful discussions, i.e. low car seats, bed covers, bananas, and

comparisons of all the weird ways RLS manifests itself. So often, someone

describes something and I think to myself, " How RIDICULOUS!!!!!! What a

waste of time and space!!!! " And then, lo and behold, I discover it's

absolutely true for me, or for several others in the group. It's not just

the power of suggestion. It's often that we are NOT prone to complaining

or calling attention to our problems, and until someone else points it out,

we aren't able to realize some of the characteristics of our own battle

with RLS. As more light is shed, more answers are found.

Sometimes our information is way off base...but it's a start, from which we

find our way to something else that is helpful. So, we continue to make

stabs in the dark, and pray for light to shine on some new idea or

treatment that helps us. If we held our breath, or waited until we knew

our thoughts were 100% correct, we might miss so many of the wonderful

discussions and opportunities we've had to share useful tips and

information. So...we try to be safe. We try to be calm and not " sell " our

ideas as miracle answers. We just share what we find and encourage

discussion and careful analysis of the information.

Best wishes to you all, for continued success in your search for answers.

And I thank you, in advance, for your willingness to share what you find

and for your cautious analysis of what is shared in this wonderful group.

Sincerely,

Jill, 46

Payson, AZ

http://www.netzone.com/~gunzel/rls.html