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A New Goal

griffggriff Posts: 496
edited 06/11/2012 - 8:32 AM in Matters of the Heart
For the last 3 years I've whined and complained that everything that I loved to do in my "former" life has been taken from me, that I had no hope of ever doing the things that made my life MY life. I've been in therapy for quite some time now trying to deal with the anger and sadness that the accident has caused, to understand how to become this new me that I hate. I think I finally realized that I don't have to give up everything.

Volunteering has always been something high on my priority list, a thing that I did to make a difference not only for others but to give back for myself for being so fortunate. I realized that it's one area that I could still live in although in a very different capacity.

I'm essentially isolated here; we moved to this community shortly before my accident and I had no time to really get my roots in. Since then my life has been wrapped up in surgeries and chronic pain and seems so self-centered. I aksed my therapist if there were any chronic pain support groups in the area...of course not. Well, I've decided to start one! It's something to live for, to work at and to help me, as well as others, along the way. My therapist has agreed to help me.

If anyone has attended a support group like this I'm open for suggestions. I have never attended any save for AA meetings I used to go to with my dad when I was a kid. I'm winging it here and there is so much experience here that I can't help but tap into it :)

I feel liberated in a way. Thanks in advance for your ideas!



  • So many times after injury or treatment that leads to chronic problems, people lose hope of ever living a normal life again and doing the things they love.

    They (and I am no exception) get so wrapped up in the here and now that sucks, they forget they have the ABILITY to MAKE their own normal life (for me this is about as normal as it's ever going to be - not that I was ever normal to begin with...). So what if they can't do things they used to love to do. Surely they can find something else they will come to love... The point is WE are in charge of how we choose to handle any give situation.

    YOU are proof of that. Words can't really express how I feel about the steps you are taking to actually GIVE back. I wish you all the success possible, and then some!

    Let us know how things progress?

  • That sounds great! I asked around here and they all looked at me like I was stupid!

    My first suggestion is to try and get a clinician to sign on to help. That way you can run questions up the flag pole. Plus it would be helpful to have a backup if needed. I know I sometimes have days I just don't give a s**t and would have trouble being nice...

    Funny how I can see those days, yet not do anything about them. What day is it?...
  • What a wonderful thing you're doing. I've put a link below to the American Chronic Pain Association's "Start an ACPA group" page. I'm not sure how you're wanting to approach your new endeavor, but thought this might be a good place to start.


    Good luck and with time, you'll have a whole boatload of people thanking you.

  • You are still my inspiration. As I go off to face the surgeon's knife one more time I come here and find you still giving yourself as always. Now you have me thinking. I just know there has to be a group near me. If so I would love to attend and may find some ideas for you. If not then maybe we will jump in this together.
  • Wrambler, my therapist is helping me although she can not become completley involved without having to bill it. She's pulling some strings and will help get guest speakers and such for us as it progresses and will also be on hand to answer topics that may be more complicated. I don't think I would have the courage to do this without her support!

    Thank you Cath for the link! I'll look over the site and I'm sure be contacting them for assistance. The only support group I've ever attended was AA meetings with my dad when I was a kid so I have no idea where to start. I want this to be a positive thing and a place where us CP folks, who too often tend to isolate ourselves, can go to get answers and socialize in the process.

    Tonya, don't go overboard, I haven't done anything yet LOL! Ideas can crap out and so can my energy. I just feel the need to do SOMEthing and since I live this particular life then why not? There are no groups here for me to compare to but I may make a trip to the "big" city and check one out to see what's going on. I'd appreciate any input from anyone who has ideas! You just get over this dang surgery and get better!

    Thanks again all of you...keep those ideas coming!

  • thats a big untaking starting up a support group i wish all the luck in the world,i'm sure with your determination it will work out great. good luck with it griff. =D>
  • Griff , I think what you are wanting to do is wonderful....helping others always helps you....I have found that to be true time and again just from being a member of SH.

    I have never been to a CP support group before so I can't help you with that but finding a group and going to some meetings should be of great help to you. You can also try to model the meetings after SH....but instead of it being online , it is face to face. I would definitely stay away from giving any medical advice at all (that can open up a whole can of worms) but sharing what you have been through and what you know would be great. You may also want to think about running an ad in your local paper asking for other CP sufferers to contact you about starting up a support group and then once you get the group going then you can periodically run more ads to get the word out.....but I think that you will find that word of mouth advertising will take you further than an actual ad in the paper.

    I can tell you this that when you get to meet fellow CP sufferers face to face and talk and share your stories , it is a powerful thing....I have done this myself and ended up with not only people to share my ups and downs with but people that have become life long friends. People that suffer from CP share a bond unlike any other in the world...it can be a powerful and wonderful thing.

    I wish you all the best as you set off on your endeavor and please do keep us posted as to how you are doing and how things are progressing....take care....Miki
  • dilaurodilauro ConnecticutPosts: 9,868
    Griff, your new goal is something that many people could benefit from.

    As far as getting started, I really dont have any solid ideas, but I would think that the first step would be in finding people who live in chronic pain.
    Then you could initially have meetings at your house and then see where it goes from there.

    I also think just following some of the objectives here at Spine-Health. We let people come in and start to talk about their medical problems and sometimes more. People respond with comments and suggestions, word of advice or a lecture. One of the easy parts of this type of Support group is that you dont see anyone face to face. That can make it easier to say what is on your mind.

    But one thing Spine-health lacks, is the personal face to face environment. Looking across the room into the eyes of a person talking has more meaning.

    And so far, I dont know any way a person can get
    a real hug over the internet.

    Good luck..... Go for it
    Ron DiLauro Spine-Health System Administrator
    I am not a medical professional. I comment on personal experiences
    You can email me at: rdilauro@veritashealth.com
  • Thanks for the advise, it's much appreciated. I need to do something, to feel useful, to have a purpose again and I can't think of anything better to do but help someone in the same boat as I'm in. It's going to take some time but this will get organised at some point!

    I am truely overjoyed at the positive response I've recieved here. Please keep the ideas coming. Perhaps this will spur others to do the same in their own communities. You're right Ron, nothing can replace Spine-Health but touch is something that we all need and sometimes CP folks are too isolated and need the closeness of others.

  • I think what you are doing is a great thing and will do wonders for your feeling of self worth. Rock on!

    One thing that gets me when I read it time and time again on the forums, is how many describe how their life is over. I have been there too and have written how I wanted "my life back". A few years ago I was doing what I could, thinking, and I came to a strange realization that has helped me tremendously.

    As we go through our lives, from childhood to adulthood, our lives are constantly changing and in some respect quite dramatically. We start out as a kid with very few cares in the world and become young adults. Somewhere along the way we make a decision or two that changes our lives and sometimes those decisions are made for us.

    For instance you had a terrible accident that has caused you to turn down a different road in your life long journey. Many times it's marriage, pregnancy, job, location, luck of the draw, injury or illness to ourselves or to a loved one. Regardless, it drives us to redefine what our lives are. Sometimes it is dramatically different from what it was a few short hours before. Even now with people losing jobs and homes, their lives are changing in an instant. So for them, they have "lost the life they knew".

    I found that the key is to find a new life and make it the best that I am capable of making it. That was the key to finding peace and happiness once again.

    You found that you could direct your focus on developing a support group and that has helped redefine your life once again.

    I think it's a continual process as we age and how we deal with it is what will determine if we are happy or not, satisfied or not, or just plain dwelling on what we have "lost" and "want back". Reality truly is a "concept" and we have to make it our own and own it. I hope that makes sense outside of my brain as I write it on the page.

    Keep moving forward as you are, and you will find some peace. I applaud your tenacity and drive to become a whole person once again. Go for it!

  • RangerRRanger on da rangePosts: 805
    You are truly an amazing woman Griff. After all you have been through, you just keep moving forward helping others. You have had such a positive impact on us here at spine health, there is no doubt you will be successful in your volunteer work hosting a support group. As you can see there is a wealth of support here from members that are highly respected such as yourself. I wish you the very best and feel very lucky to have been able to communicate with you through this site.
  • I am simply amazed at you!

    Griff, I have felt a kinship with you for a long time; we have both been through way too much with our spines and have more than enough hardware in our necks. I can't imagine taking on what you are doing, but I say good for you, and who better than you to be the leader of the new group. I wish you were in Idaho; I'd be right there with you because I could sure use the support from someone who understands. there really aren't that many people who have been through such major neck issues. I think they are all found here on spine-health though. It is good to have the support here from those who have been through it.

    How is your neck doing now? Please remember not to push yourself too hard on this wonderful endeavor.

    Surviving chronic pain one day at a time, praying for a reprieve because living another 40 years like this doesn't sound too fun!
  • I think I'm blushing!

    Seriously, what I'm doing isn't anything that any one of us isn't capable of. It's also being done for very selfish reasons on top of the humanistic ones, you should all know that before I get any more praise. I'm flat out lonely and long for conversation, company, adult togetherness. I'm very isolated out here and, with my husband being gone so much, it can be days between my seeing another human being. It made me think- if I'm living like this I'll bet there are many more CP folks doing it too.

    Cindy, my neck is....there. I have another disc bulging right above my fusion but, thankfully, it's not touching anything important right now so we're leaving well enough alone for now, just monitering. I don't think I could take another surgery this year! I'm going to talk to my neurologist about an alternative for pain management; the fentanyl patches just aren't doing it during the hot summer (and peri-menopause lol). I hope you're feeling well, you need to give me an update too.

    Ranger, you have been an inspiration to me as well. I always think of you when I start to whine and then get myself back under control. We all have our rows to how, don't we? If I can help in any way, no matter how small, then I consider all of this worth it in a way.

  • Even without any physical change you are managing to adapt and for most part this is changing how and why you think as you do, it take equal effort and concentration to be in that sad place, as in a better one. To some extent we may feel that nobody is hearing our plight and in that we tell all those who endure our sad tales.

    As time passed we would think, well what have I achieved and that new goal needs to be part of a bigger picture and a rolling programme. No bigger gift can be given when you are of need and giving to others despite of it and you are to be applauded. Collectively we have plenty of experience to share and we need to live with the pain and not in it, make a list of the things we can do and not measure ourselves by the understandable things we cannot.

    Even more so in company CP isolates us from other things as we become cut off from what may be seen as the norms and loose ourselves as a consequence. Within every patient is the potential for change and with the correct support and guidance the re-emergence of who you are and what you are actually capable of doing reappears.

  • wish i was out there in the sticks helping with the CP group. i need a bit of help today. everything is hurtin.
    i tried to start a small group about 5 years ago. but it didn't last too long for two reasons...one was traveling time to my house and two was finding new blood to keep us stimulated.
    i wish you luck with it. certainly a good goal.
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