I thought that I'd share a note that I put on my Facebook page a couple of days ago. I've gotten some positive feedback on it from my friends, and was wondering what you all thought about it.
Apropos of a 'normal' friend's wall post, and an autistic friend's comment, I would like to take a minute and say that the ["afflicted" party of choice] do NOT necessarily crave a "cure".
I know I don't; as THERE CANNOT BE A CURE for me.
I have basilar migraine where my BRAIN is messed up GENETICALLY, and it thinks that pain is the normal/good state of being. I don't want to be looked down on, or pitied because of a genetic abnormality. I don't want the pity and don't deserve to be looked down on.
Sure, I don't "like" being in constant pain; but I ACCEPT IT as part of who I am. I don't yearn for a cure. If one were handed to me, I might think twice before accepting it. Pain has made me who I am today, and I'm rather proud of that product.
It's degrading to think that I'm somehow a lesser being that needs to be cured/fixed, because of something I have no control over. It's part of who I am, and by not accepting that facet of me, you do not accept ME AS A PERSON.
So please, stop and think of the "sufferers", and ASK THEM if they want a "cure". You'd be astounded how many of them would rather just be left alone and not singled out for a small part of a much larger them.
You asked for my thoughts and here they are. I do want a cure.
Yes, I'd love to prepare the gourmet six course meals I use to be able to prepare. I want to watch the smile and pride on my husband's face when he tastes the feast AND I want to be able to enjoy it with him.
I don't see it as degrading to want a cure. Ask my relative that is a young mother dying with a rare form of breast cancer if she would like a cure. I doubt she would say no simply because someone might pity her. Ask any terminal cancer patient if they feel less of a person for asking for a cure.
How about the little children that suffer with a genetic abnormality? Ask them if they want a cure so they can walk again or stop constant painful spasms. The painful symptoms are endless, ask them if they want a cure or are they more concerned that someone may take pity upon them or think they are less of a person.
That does not make me less of a person because I no longer want to live day in and day out with horrid often unrelenting pain. I'd enjoy a good nights sleep. I want to run, dance, snow ski, snowmobile in the winters and walk on the beach in the summers and play ball.again. Please, please insult me by offering me a cure. I'd be proud to except it.
There is nothing "wrong" with me now. I am not a person to be pitied. I am not a lesser person. I beleive I am an intelligent, fairly articulate woman. You can take me home and I won't embarrass you. You can even take me out and I won't embarrass you and I clean up pretty good too.
And I am a better person for what I have endured as I travel through this journey of chronic pain. But I have witnessed many ppl become better ppl for what they have endured...and it didn't necessarily involve chronic pain. I may be a stronger, prouder and please don't help me if I don't absolutely need it person....But I am not a martyr. So when they find the cure in five years, the one that doesn't exist now. I'd be honored if it were offered to me.
I want a Cure for my nine year old Autistic Granddaughter, so that she isn't trapped in a mind that is so full of confusion and fear and not being able to have ANY control over some of the things that this SWEET, PRECIOUS CHILD DOESN'T WANT TO DO but can't help herself. I want her to NOT pick her "boo-boo's" and make them bleed. I want her to be able to PLAY with other children and HAVE HER OWN FRIENDS that are REAL children INSTEAD of her stuffed animals and her dolls. I want her to someday be able to experience being able to go on a date and have a boyfriend and GET MARRIED and HAVE A FAMILY OF HER OWN!!! I WANT HER TO BE A NORMAL PERSON!!! Something that she can NEVER BE (without a cure).
YES, I WANT A CURE!!!! Not just for her BUT for EVERY AUTISTIC CHILD in the world.
I want a CURE for EVERY child that is ill, NO MATTER what their diseases are! These children should NEVER have to suffer anymore!!!
I want a cure for EVERYONE in the world that is suffering and has NO CURE!! I want them to be healthy. ESPECIALLY, for my Friends and EVERYONE on MH that suffers so much DAILY and there is no hope EXCEPT to silently take their pain meds and suffer in silence.
I want a cure for MY L'il Sis!! She has suffered more than ANYONE should!!!
I, too, want a cure. I want to be able to get down on the Floor and Play with my Autistic Granddaughter. I want to be able to take her and my older Granddaughter to the play ground and be able to climb on the Playground equipment with them and run with them.
I want to be able to dance and ride a bike. I want to be able to walk without a cane or walker and NOT have to fear that the time is getting closer that I will be in a wheelchair and NOT be able to walk again. I don't want to LOSE MY INDEPENDENCE because of my health 20 years before I should!!!
I WANT TO EXPERIENCE BEING A REGULAR GRANDMOTHER!!! I want to be able to do the things that a NORMAL 63 (almost 64) year old Lady does. I'd still like to be able to wear nice SHOES!!! I'd like to NEVER wear my $500.00 Orthopedic Shoes ever again UNTIL I'm at LEAST 90 years old!!
I WANT A CURE FOR EVERYONE IN THE WORLD that is facing ANY type of disease. NO ONE should have to suffer in this world.
Like Tuck, I, too, am not to be pitied. I never have been. Inside, I FEEL like I am no different than I was BEFORE I was inflicted. That lasts until I move or try to stand up.
So Yes, PLEASE give me and EVERYONE that wants it a CURE!! I would GRACIOUSLY accept it and make the MOST of it as I'm sure that ALL CP Patients would. (Or at least MOST of them would do.)
I appreciate the chance to express WHY I would WELCOME a Cure.
Now however, as REALITY sets in and My Pain is insisting that I LISTEN to it, I MUST shut down my computer and lay down and rest my weary body so that I can ENCOURAGE it to MOVE tomorrow the best that it can so I can take care of My Sweet Autistic Granddaughter for ONE MORE DAY, WITHOUT A CURE!!!
How did I miss this one??? This is a great post and very insightful.
I'd take a cure in a heartbeat. If I were told that if I were to walk around town naked with my hair on fire mumbling to myself the whole time, I'd do it!!! Hands down. No question in my mind.
I would do most anything short of selling my soul to the devil for a life. To be able to make plans, walk the dog everyday, go back to making jewelry, travel and life and fun. Why wouldn't I or anyone want it. I can't even remember the last time I woke up and didn't think about how bad was it going to be today. All the pills, out the window! Oh what a fabulous dream.
I don't know why someone wouldn't want to get rid of the pain. I do know some people who aren't happy unless they're unhappy, if that makes sense to you. I don't understand at all the thinking behind this type of thought. And I don't think I want to know.
Dame, this is one of the most thought provoking posts I've seen on this forum. Thank you so much for posting this,
The thing I like most about your post, is that it seems to be referring to the people "peddling" a cure.
There is a difference between people wanting to "cure" my chronic pain and ptsd, and people who want what they are suggesting to be able to "cure" whatever symptom they can't seem to deal with that I happen to be showcasing at the time.
People are always trying to "cure" me by offering advice on whatever worked for the worst sprain they had, or maybe if I just put my feet up, etc etc etc.
Mostly it just pisses me off because it isn't a real cure for me, it is just a "cure" to whatever tiny facet of my problems they think is "easy" to fix.
It pisses me off because if it were something as simple as elevating my feet or having a weelchair, well, I wouldn't still need a cure now would I?
just my 2 cents.
I had a really bad pain day tho, so I might just be grumpy pants. idk
You bet I want a cure and I am still on the search for it.
Although, I will never be able to run my 36 miles a week or participate in triathlons as I once use to, I would love to take a long 5 mile walk with my dogs. I want to hold my head up like a normal person instead of resting it in bed or on a pillow. I would love to take a few hours each day and deep clean my house. I would love to get up and go anywhere I please with the kids. I miss going to their school and church activites and they resent me for not going. I would love to start quiliting again.
I too, get all the suggestions how to cure my neck pain from neighbors, family and friends. They don't understand that I've tried everything under the sun more then once. When I tell whomever that I've already done that, they get upset with me for not accepting their suggestion because it has worked wonders for someone else they knew.
Add me to those who would take a cure! I'd love to be the mother I used to be. The one who had a "real" dinner on the table every night. The mom who's house was more or less spotless at all times. I want to be the woman who loved her job and made a decent amount of money. Money that paid for my kids' tuition and extra vacations. I want to be the person I was before pain took over my life.
I want to be someone who only takes a vitamin everyday instead of a bunch of pills. I want to enjoy socializing again. I don't want my mind clouded by medication, which often doesn't work the way I had hoped.
I don't want anyone to pity me or feel bad for me. But I sure wish they could try to understand me.
I would also want a cure.
I would want to be able to live everyday not having to worry about how bad the pain will be today. I would love to be able to go out and play with my kids for hours and not have to worry about being in pain. I want to be able to smile and laugh and not hurt while doing it and eat a normal sized meal and not have to worry about how much pain it is going to cause.
When some people have lived with pain for awhile or all their lifes they don't think any differnet and don't want to change anything. It is normal for them. It know it is hard to deal with but it seems normal.
just my thoughts
I admit that it could be confusing, as I'm not the best of writers. It's not that I don't *want* a cure, it's I know I can't have one. I've had maybe 3 or 4 "cures" turn very sour on me because of my basilar migraine. In the end, everything makes the pain worse, so I have just come to accept that pain is a part of life. That and I truly cannot remember a life without pain, so I don't have something to compare my current life to.
I find it degrading when people look at me like a science experiment, and are (in some cases) embarrassed by the lack of success that medicine has had with me. I find it degrading that people assume that I'm somehow broken and responsible for being so, when it's genetic.
Sherry I touched on it but you said it better. Our poor suffering children!! The innocent ones. Many do not even know what it is like to feel "good." Some are afflicted with painful medical conditions, others are afflicted with emotional and mental disorders that are just as painful.
I had a healthy childhood. I was able to run and play and went on to college and graduated at the top of my class. I was well physically and mentally. I had the opportunity to have a "normal childhood." I will take my chronic pain as I am sure so many of you would, if only our children can have the "cure." My heart bleeds for our physically ill and mentally challenged children. I would forgo my chance for "the cure" if it meant our innocent precious babies and children could have one.
Dame I assume this is not at all what you had in mind when you posted your comments here and on your Facebook. I know that you too would want a cure for our children. Please don't think any of us are implying otherwise. :)
I was typing as you were posting. What you say does make sense.
My dear you and I and probably all our friends here know that you are not responsible for your genetic abnormality. It must be difficult to feel that you are looked upon as a science experiment. It's horrid that anyone would think you are in any way shape or form responsible for failed science.
I can't imagine completely what you are experiencing but I have a rare condition too. I am only one of three hundred ppl in the world to ever have one of my diagnosis. So many physicians are excited to see me and probe and look but it ends there. And now my condition became even more rare as the "fix" has failed. So I do understand to some degree how you must feel. But sorry dear, I would still take the cure or the fix or whatever term applies.
Shame on the ppl, especially the medical community that may have made you feel less than what you are, a wonderful unique human being.
I want you to know that NO ONE here looks at you in any way other than "OUR VERY DEAR FRIEND"!!
I feel horrid that you feel the way that you do. The problems that you experience AREN'T your fault at all. The people and Dr.'s and "Specialists" that treat you like that shouldn't be allowed to practice medicine as I feel a Dr. should ALSO have GREAT EMPATHY towards his/her patients and treat them ONLY with the UTMOST respect!! And as far as people go they are just plain IGNORANT and don't DESERVE your Friendship!!
We ALL love you and are so PROUD to have you as part of our MH Family!!!
Dame, as Tuck put it, we of course know that you didn't include the Precious children in your post.
And I, too, would GLADLY give up MY cure if the Sweet Children could have it!!
I am getting it now - It absolutely makes a difference if you have never known a life without pain.
I seem to remember hearing of a deaf man (no punintended) who was asked a similar question - he responded by saying he was happy with his life and did not think he was missing out on anything - it was his life and he accepted it. He also did not want to spend time going from doctor to doctor trying to fix it. But the again, no doctor said they could absolutely fix it - they just wanted to try...
With that being said, I think that others now suffering but who have lived most of their life pain free and without a debilitating condition, yearn for what they had. Most would jump at a CHANCE for a cure.
I also think when you said "CURE" - it meant a solution that would correct the problem without any errors. Guaranteed.
I, too, hesitate to go back under the knife for 'possible pain relief'. That is not a cure, that is just trial and error.... I also have a rare condition that currently has no 'cure', no surgery, nothing to even make it better. I do not want doctors experimenting on me to see what will work - so I get it when you say that...
I looked at your inital question as hypothetical - and IF... just IF someone said tomorrow - we now have a guaranteed cure for (insert condition)... I would say "SIGN ME UP!" - and I think most people would. Of course, that probably will never happen to many of us..
If someone could offer a cure for addiction, that would allow me to take narcotic pain-killers for the pain that I have, I would scoop it up in a heartbeat. Talk to any addict that has pain issues and can't get relief because that bridge has been burned, and they'll BEG you for a cure.
If someone could offer me a cure for my genetic disorder, I would jump at the opportunity. No kidney-stones, no chronic pain. No chronic pain, no pain medication needed. No pain medication, no abuse & subsequent addiction to said prescription pain-killers.
Offer me a cure, and I'm jumping at it. Anyone that doesn't want a cure is a glutton for punishment or has come to like the attention of doctors, PM's, ER's, hospitals, etc, a little too much, and has other issues all together... mental issues.
Maybe I'm misreading the post, but are you saying that you don't want a cure, or that you've accepted the fact that there is no cure and you're okay with it?
Like you, there's no gene-manipulation cure/treatment, as of yet, that can help me, and I'm okay with that. I don't dwell on it. I don't take issue with it. I'm 'okay' being the way that I am. One could say that I've 'made peace' with the fact that I is what I is, and that's that.
But as I said, offer me a "cure", and I'll jump through fiery hoops to get at even the small possibility of a cure. I've been experimented on before, and the medications did more harm than good, but the fact that the experimental medication MIGHT have worked for me, was enough for me to attempt.
I want a cure for not being able to sleep and thinking about all of the things I want but can't have.....like a cure.
That is why I cannot make a post of why I want a cure. Because it still hurts too bad and I cannot hold on to what I need to in order to make it through just tonight. And tonight, I can only make it through tonight.
I want the cure. I want to cure my false hopes. I want to cure waiting for a magic prince to rescue me, or a magic pill, or the next magic cure that someone tries to sell me.
So I completely understand the impulse to say "you can take your cure and shove it"
but, I have to remember that it isn't THE cure for what ails me I am shoving, I am shoving away what thinking about what I want cured does to me. I have made the choice not to go back to that place until I have better skills to deal with it.
So, what you posted kind of makes me think,
"I need the cure, you can shove yours"
Do you know what I mean? that feeling? Like every doctor is just trying to sell you snake oil anyway, so its like, my pain is better than pain plus snake oil.
I think that the gap between the "cure" dame is referring to in her original post, and the "cure" most others are posting about is that they are 2 very different things.
Its like how mother means one thing to a well adjusted child, yet quite another for a foster child abused at the hands of a "mother"
And learning to live with pain takes going to the funeral of the person in you hoping for a cure.
One cannot "live" both ways, always trying to change something, yet learning to incorporate it into your being.
I think maybe, its one of the few things I can say may not be explainable, just......."experiencable"
exactly! I have gone to the funeral for the person I was when I was hoping for a cure, but I'm now content to...accept, but not bow down to, my pain.
I think a lot of people (mostly 'normals')don't get the difference between acceptance and resignation. I'm not lying down and inviting the pain to walk all over my life, but I accept that it's a part of my life and make some adjustments.
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