A Journey of 30 Years, With MS As a Teacher...

Hello All,

I've been journeying with MS as a constant companion for over 30 years, and facilitate a wellness & support group in CO.  I'm also a retired clinical and transpersonal hypnotherapist.  Like you, through many ups and downs, I've learned a lot about myself. 

What fabulous, adaptable, creative human beings we are!!

Clearly, life with MS is not easy...and I have no illusions about it; but it is only PART of my experience.  I've learned that: who I am/we are is much bigger than MS; we are definitely not "wimps;" and, perhaps we are the keepers of some wisdom about differently-abled bodies, that most people will have to learn for themselves, at some point, as they age.

A lot of my outlook is based in having a daily spiritual practice, which helps me transcend the "rough spots.;" and the fact that I've had some OBE-type experiences.  I've had to fight through many misperceptions about who we are with MS, and have been vocal about the body-mind-Spirit approach, and insisting that organizations steer clear of referring to us as 'victims.'  In the 90's, I played a large role in introducing the word 'wellness' as a one to be used in the same sentence as MS, believing that we have the right to define ourselves. 

All in all, my journey has allowed me to create my own version of a well-lived life, despite the 'evidence of the senses.'  I send love and blessings to anyone reading this, who has been journeying with MS!

What about you.....


Shabda1 Shabda1
56-60, F
11 Responses Mar 9, 2007

MS was made so much easier to deal with after being proved by a friend that being a skeptic got me nowhere. I tried this new band around my ankle and a week later I was able to walk further (with no pain) than i had been able to for 10+ years. I see that a facebook page was setup to show/share the same experiences by others. www.facebook.com/msfocusgroup

I appreciated reading your letter and your mind/body approach to MS. I have Benign MS and then it changed to Relapsing/remitting. I am taking copaxone and it seem to help. They say it lowers the inflammation and actually makes me feel better. I trust with being positive, a healthy diet, exercise and a support group you can have ms without ms conquering you.

Thanks for sharing your story! You wrote with a generous amount of encouragement balanced with reality. I have been living almost 19 years of my life with MS. As with a nice wood, you add a finish to protect it from harm. I've tried to keep my spirit protected by a heavy coating of strength, faith and confidence. Like a house, after being exposed to years of wind, sun, rain, cold and other elements, those protectants get worn down.<br />
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While I am not a person to take myself as unbeatable, I didn't see myself facing anything in life as overbearing as MS had become. Before the thoughts of not being able to make it occurred, I had accepted my position as a winner and even a role model for others.<br />
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MS has been quite a challenge to say the least. With my willpower and adaptability, I can usually smile and rebound from the setbacks in my life. This fight feels different, almost like my "opponent" is a super power. In this championship fight, it seems like when I rest between rounds to regain my strength, it's like MS attacks me in a different fight plan. MS has made me think I was in a tag team bout, at least two versus one. After fighting this fight as long as I have, I feel like the odds are stacked so heavily in favor of MS that if I as a challenger am still on my feet at the end of a round, the press won't say that I may win, rather that MS must be out of shape and considered to be a loser! I've heard it said before that you have to BEAT the champion. It feels like MS is clearly the undisputed champion. I'm just another victim who's supposed to deal with it. Your letter reminds me to keep living my life and fighting this fight. even if it changes from what I expected...AGAIN.

do you mind if I ask a few questions im writing a paper on MS and I need to interview someone????

Thank you for putting such a positive spin on MS. I was diagnosed 2 months ago and I believe I am still going through the grieving process of my former life. I have started doing stretch yoga and getting massages and both seem to calm and relax me. I believe this pushes the symptoms away at least temporarily.<br />

I was diagnosed with MS last week and I haven't even started the meds yet. My symptoms are just a weak leg at this point but it sounds like the symptoms can potentially get quite a bit worse. All that I know is that God is my source. He will see me through this, and in the end, He has every good thing for me. This is scary stuff but knowing that He will be with me all the way through this if very comforting.

Ruthannporter...My heart is with you, as you explore the options for your work life, and your life. I understand/overstand challenge...more than you know. Yes, you've worked your whole life for financial well-being, despite any physical challenges. But you are much more than your work! I hope you can stay connected to the Inner Voice, which can guide you in directions that you may not be able to see through Mind alone. The times when we have access to deeper recesses of our Self are in the evening, when dropping off to sleep...and in the morning, as we awaken. You might say that our creativity is heightened at these times. I hope you can allow yourself to linger in the in-between state of consciousness (between awake and asleep), to receive images and suggestions as to how to care for yourself if your work life changes...<br />
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We are all going through something...and I wish you the best and highest solution for any challenges that show up!<br />
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I believed in reading your story it was exactly the person I've always been, but now guess what? I am finding out I am not invincable and now faced with the realization I can no longer do my job or any job for that matter to to declines in my thought processing, multile tasking abilities in the very fast moving technoligy type of jobs I've always prided myself in and have been very proud to participate in.<br />
I do not want to be let go because I am not the lowest preforming working on our team, I have been placed on the 90 day trail evaluations program, and am terrified I will lose not only my job but retirement(as I am no age 62 yet and need two more years to get an early out) I am strugglying very hard to maintain my dignity and keep what I feel I've worked my whle life for in spite of the odds.

Thanks for your comment. You're right, it is a mind/body/spirit connection to stay ahead of this disease, or any disease for that matter. There are days when it's hard to stay positive. I'm glad this group is here!! <br />
Stay strong!!

Just want to say thank you and keep the faith!

i have lupus it has been 14 years ,and hard hard to live with eventhought i don t look sick , but i wish to die sometimes not only that my niece was diagnost with ms 5 month ago do you think it s run in the family ?