Your Feelings about Dystonia..Part 2

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Permalink Reply by Tom on September 23, 2009 at 2:47pm

Beka-

With all due respect, how about we change these questions around a little, maybe direct them differently, or make them more open ended to get our focus off all the negatives about Dystonia? As much as it can royally suck, has taken away parts of our lives, makes us angry, etc., what about all the opportunities it has provided us, things it has taught us about ourselves and others, how we have had doors open to us that would have never otherwise been opened, met people we never would have otherwise, have grown in ways we never would have otherwise, etc.? While we most certainly need to bitch at times (and I do and it feels good when I need to), I believe we need to spend more time answering these questions and talk more about how it has changed our lives in good ways to help us better live with it.

Complaining about anything is very easy and actually requires no effort, no matter the subject. We can all very easily go to that well and fill many buckets of things to bitch about, but how many buckets can we fill talking about the good that has come from Dystonia? Not many because we don’t do it enough. Plus, it is VERY hard when we are in the state we are in, so it requires us to truly look deep inside to find those things, but they do exist if we put in the effort. I know many of you have made that effort and I love to hear the things you have to say. It teaches me, humbles me and helps me change my thinking so I can live a more productive life.

Some of us are not at this point yet, and there was a time I would never have been able to even conceive of anything positive about Dystonia, but in time that has changed and I am so thankful that it has. I wish the very same to all of you. I still do my share of bitching, but while I may have lost certain things in my life as a result of Dystonia, I have also gained so many things. I am far luckier in so many ways than people who never suffered with Dystonia or other chronic condition. Changing our way of thinking in this regard should be our challenge to one another and a goal we set individually and collectively, rather than compile the many ways Dystonia has ruined our lives.

What about those who have come from the pits of hell wanting to die and triumphed by finding treatments and/or new ways of thinking that have helped so that they can again live functional lives, and for many who have done this, it has been the biggest triumph of their lives and one they are most proud of? Then there are those who have not improved with treatments, yet with a change in their thinkng (plus adapting and accepting to their new paradigm), they have been able to foster a mindset that provides them with a happy and productive life.

Many lives have been changed for the good thanks to Dystonia, whether it be our own lives or the lives of others we have had an impact on. We should make every effort to focus on those things every day rather than all that we hate about Dystonia. It puts us into a mindset that keeps us in a hole. While we need to vent, we also need to try and do more thinking about the opportunities Dystonia has presented us with.

As Wayne Dyer said (and I have used this quote many times because I think it is powerful), “If we change the way we look at things, the things we look at change”. This is what we need to do in my opinion so we can shift our thinking, which will shift our focus, which will shift our feelings about everything, which will make it easier to live with Dystonia and any other challenge in our lives. Talking about all the things we hate about any subject closes all doors for a way out, in my opinion. It only makes for more depression and feeling bound to a disease rather than liberated, which is when we are able to see that there are open doors for us, and there are. We need to start changing the questions we ask ourselves and others, and then how we answer those questions.

Thanks for listening.

Tom

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Permalink Reply by Jenn on September 23, 2009 at 3:34pm

=)

Such a great point!

It IS harder to pull out the positives about our dystonia story... but for some people they are still at the point where they feel like they need to know they are not alone in their struggles... and how can that be done if no one is openly talking about their struggles ?

I personally prefer to read other people's struggles and search for the positives in mine... because life is too short to dwell on the negative. Ive had to learn to actually ask for help and tell people whats wrong.. and dystonia has forced that onto me..

Wow, there you go! I just backed into a positive thing =)

When I was first diagnosed with writers cramp at 26 years old, I went to a local support group. It was a group of 5 people over the age of 50 with cervical dystonia talking about how much their lives sucked.

I never went back, and I decided that I did not HAVE dystonia and that the neuro was a quack because I was not like the people at the suuport group. Their negativity literally drove me away, and I lived in denial for a year and a half until my symptoms progressed.

So I completely understand your point...

but on the flipside..

this year after meeting so many people with dystonia.. (another positive change) I learned that dystonia affects people in different ways. I have met people who have considered suicide.. I have met people who never leave their house.. I have met people whose families have completely shunned them.. and I realize OMG they need to vent.

We all need to vent. .... and their openness allowed me to vent also.. Allow me to accept my reality and say:

Yeah! this really SUCKS! and its not fair!

but for every person like that, I meet another (like you) that thinks positive and refuse to let dystonia take over their lives...

these people help me remember to wake up the next day and say: but I can get through this.

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Permalink Reply by Tom on September 23, 2009 at 5:23pm

Very well said Jenn and I agree with it all. Venting is very important. I don't dismiss that for a moment. I was in that category of people you described. I considered suicide often. Fought my way out of it every day for a long time. It was not easy by any means and venting often kept me from doing it. At the time, I thought it was the only way. I did not realize the other options and when I did, it really helped. There soon became more balance between venting and thinking differently about my situation.

By no means am I always positive. I do my share of moaning and groaning and yelling as well. Some days it is really hard to see a silver lining, but I believe there is one and I want to try and find that as much as I can and I so very much want for others to find that as well. It is not easy by any means, but twisting around how we use our words can sometimes really do wonders. My goal in what I originally said was to point out that there are others ways to look at things and that venting, while it often seems the only way to go, is only part of the many things we can do.

Thanks again Jenn. I appreciate all you said and it made me think differently about some things.
Tom

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Permalink Reply by Rebekah on September 24, 2009 at 6:52pm

Yeah, this is a great point, Jenn. How important it is not to get stuck in a negative talk cycle! You're lucky to have a support group near you and I hope you've gone back to lift their eyes a little bit.

I'm one that believes firmly in the greiving process, but it only works if there is vibrance and new growth to replace what is falling away. It doesn't have to be the same, it just has to be real.

There is another factor to all of this, which you mentioned and which I think doesn't happen to everyone and therefore can be misunderstood and left unaddressed. This is acute involuntary isolation or emotional abuse. Verbal abuse is a huge problem for its victims, while isolation is a sort of murder in itself. Both of these points of suffering can be alleviated by simple positive social interaction. (this is why healthy support groups are so important.)

When I almost died, it wasn't because of the disability, loss, or even the pain. It was because of all my years of caring for everyone, no one (incl docs) stepped up to care for me. The wicked brutal blow... So I am past it now (pretty much) and determined to get back to being there for others. Even though I still need empathetic companionship, I have the skills to give what I don't know how to get.

Dystonia completely changed my life. I can't say like so many that it shouldn't take over. It already did. The difference for me, I guess, is that Ive had enough varied experience to know it isn't the end of the world.

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Permalink Reply by beka on September 23, 2009 at 3:41pm

Thanks for your input, Tom. Always wise with wisdom- you are. You do have a way with words and should write a book. I'll be your first buyer !
As you can now see, I have changed the question around a bit.

beka

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Permalink Reply by beka on September 23, 2009 at 3:44pm

Some words...by Loretta with Essential Tremor
" I plan my days to get my chores done in the morning. If I have the afternoon tremor-free, it's a bonus. I rest often to try and stretch my tremor-free time out, but if they start, then I go to my big chair or my bed and relax – no need to fret – I can do it tomorrow. I've learned to "roll with the punches". My house isn't always spotless. I don't always get supper on the table. I don't make too many advance plans. I live my life moment by moment, day by day, grateful for this life I've been given.
And that's not such a bad way to live, is it?

Loretta "

DBSSurgery Yahoo BB

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Permalink Reply by TJD on September 24, 2009 at 11:50am

Dystonia, lives with me, I do not live with it. I refuse to allow it to take over my life. It's tried a few times. I love to ride horses and it has interferred with this in a big way. I just didn't know what it was then. It has taken years of riding from me, but in return I teach youth to ride and do equine therapy. I don't get to ride but instead change lives. Not a bad trade off. Dystonia taught me that a husband who I used to think was self absorbed would help me through anything. That the people who love me will be there and the others don't need to be a priority. That I can stand up for myself and others. That the body I have is the only one I'll ever get so stop worrying if it's short and round and be more concerned if it is healthy. I see children with cerebal palsy and others everyday that would give anything to have a body that works as well as mine does. So I'll never be a great athlete, help out on the farm the way I'd like, or maybe even be pain free. I can deal with that!
I was angry for a long time. What a waste. I had a beautiful friend that passed away a year ago from liver cancer. She had lived her whole life effected by polio and on crutches. She was beautiful inside and out. She had grace in life and in death. She suffered pain I will never even begin to understand, and when I went to see her a week before she died she smiled, said she was so grateful for what she had in life, worried about planning her funeral so her husband wouldn't have to. Talked of how to tell her children mom was dying and worried about interrupting her own mother's vaction with her impending death. I have never seen such beauty inside and out. I let my anger go that day for any pain I've had for all the times I felt cheated or life was unfair and vowed to try one day at a time to be the type of person who would deserve to have shared even a moment of such a special persons life. I am so lucky, to have been taught that life is not about how much you suffer but rather how much you give so others may not suffer. I still get frustrated but no longer does pain own me!

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Permalink Reply by beka on September 24, 2009 at 2:13pm

OMG - T- You ride ... I just started.. talk about being on heaven when I am out at the barn...How true your words are.. Well said...

beka
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Except from 2 Households, One Life ( by rs- to be published in 2010-11 )

Someone asked me how I got into horses... well here is the beginning of the story...

When I was a kid of about eight years old, there was a thoroughbred farm located right across from our street's you drive from Strong to 12 Corners Don and Bobs Burger joint (Remember...touted as the best hamburger joint in town ?). During the summers my grandfather would take me there while he shoveled horse crap into a wheelbarrow for the rose bushes. We had the most admired gardens on the street, easily becoming the envy of every nearby gardener. Once I saw the flowing black manes and the wild steak within them galloping in the fields; I was hooked and began reading everything I could about horses. Sneaking from the house with vegetables, any other foodlike item I could carry; off I would go for hours instead of doing homework, which soon plummeted into a downward spiral (Sound familiar..?). Soon my mother and the other household caught on to ongoing emptying of the Maytag refrigerators...chuckle...My mother kept quiet about all the afternoon escapades. My father at times would have to come get me dragging me, kicking and screaming, away from the luscious four legged beasts. They reminded me of me-wild, untamed and rebellious (Was I good polite kid-NO WAY...).
But during the summers it was a different time as my time was spent with a former Latvian Army Lieutenant, who literally had moved a hill away from railroad tracks; only later to be used by the Russians to send off various ethnic groups to Siberia, my grandfather or "Opa ." While smoking on a Cuban pipe, he bargained and bartered for more horse crap, eventually progressing to hay and mulch with the owner in the barns, I could be found leaning on the white picket fences that surrounded the green pastures making new friends. Little did I know at the time that the family had lived and worked in Kentucky after being sponsored by a well to do thoroughbred race horse owner after the War to come to America. Each family member quickly picked up on their duties as housekeepers, caretakers and barn muckers. The former Lieutenant did his part; but soon the owner realized that he had a gift with horses and gardens. Within no time he had progressed from a mere barn mucker to the owner's front man when it came to providing the horses with grooming and the like, during racing season, which seemed to be everyday, even during the hot sticky summers only found in Kentucky.
I would spend hours on the farm, talking to whomever was listening especially a golden horse with a cream colored white mane and long tail that would swat away the flies- a Palomino. ( Got one on hand ???)
This horse, in particular, caught my attention by his gentle nature. Never once did he step on me while I laid lying on my back looking at the blue sky, dreaming of what was to come. Soon the dinner table conversation began centering on the topic of horses; I began asking for a horse during every Holiday regardless if it was Yom Kippur, Christmas, my own birthday as well as that of my two younger siblings. The Palomino belonged to the owner's daughter....

So, that's how it all began...

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Permalink Reply by Thorns on September 25, 2009 at 11:34pm

I have to agree with Tom my life has actually gotten bigger because of dystonia, I know this is not everyone's experience but for me over the years my world has opened up in a way I know it would not have if I didn't have dystonia. I've had to come out of my comfort zone to get treatment and talk to people I would not have met, made friend's with other's with dystonia, all a great group of people. I have compassion for those in pain because of understanding I get from having dystonia, I can look at the world with softer eye's.
Thorns

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Permalink Reply by Tom on September 26, 2009 at 1:18am

Thorns,

This is all so great to hear. I have experinced so much of the same. So many doors have opened for me and I have also been forced to open doors that I wouldn't have otherwise. While I still beat on the door (or wall or whatever...lol) when I am not feeling well, I have to say that more good has happened to me in my life with regards to things I have learned, that I never would have learned if I didn't got Dystonia. Lessons that I don't think I would have learned without it and people I would have never met. Sure, I may have met other people, but I can't live my life in a "what if....." situation everyday with everything. No progress is ever made if all I do is think about "what if....". I have to live with "what is..." and be grateful for what that has brought me. Boy, I really feel like I rambled on there. I hope some of it made sense.
Tom

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Permalink Reply by beka on September 28, 2009 at 9:21am

You always make sense , Tom !!

beka

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