“Hope is a good thing, maybe the best thing, and no good thing ever dies.” – Stephen King – The Shawshank Redemption
I am trying to live beyond MS. It has produced so many obstacles in my life that I can’t see anything but the negativity that arises from its poisonous grasp. The disease comes with countless constraints that induce me into becoming a prisoner to its daily whims.
It stunts desires, kills cravings and destroys aspirations. Sometimes it feels as if it’s choking the life right out of me. Even thinking of it now leaves me breathless.
MS hurts. If you let it, the pain of the disease can pull you down further than hell. Lower than you can ever imagine. The whole magnificent emptiness that is MS, wants to control your life and destroy any semblance of happiness.
In my fight to remain in control my main refuge has been hope. Hope is the only thing that keeps me sane. Hope brings me clarity. It sometimes takes me away from MS. It allows me to focus on a particular instant of MS free happiness. And those moments, when I forget I have MS, are nothing short of magic.
Pure magic.
thanks for sharing Nicole…I too suffer from this annoying disease….I am glad to know that I am not alone…keep alive!!!!
My Brother Roy ALWAYS had hope, he never stopped believing!
I too am hope’s prisoner. It’s the only prison I don’t mind being in. *hugs*
What an awesomely inspiring article.
Hope. Yes, pure magic indeed.
Hope is what allows me to plan vacations months in advance, even with that nag in the back of my head that says “don’t plan anything fun. You’ll probably be in the midst of a flare up.”
Hope is the reason I still have over a hundred pairs of high heel shoes, despite giving away or selling 1/2 least half of what I used to have.
Hope is what why I’ve already picked my mother-of-the-bride wedding dress. It’s platinum. The top half is beautifully beaded in case I’m in a wheel chair; I still want to make a grand entrance. The bottom half is rather plain except for an elegant train — just in case I’m still walking. I plan to be there either way.
Hope is scouting spots to retire at the beach with my beautiful, loving, caring husband — even though that’s about 20 years away.
Ive never hoped for a cure.
What are you and others doing about diet and alternative treatments? I attended a talk by Dr. Terry Wahls, a brain doctor who has MS herself. She is now researching functional medicine and diet on a clinical level because of what she was able to for her own MS. She has reversed many of her symptoms and is out of a wheel chair now. I don’t like how she uses the word “cure”, but I am willing to try the diet because it makes sense. I have also added acupuncture, massage, and treatments using a machine that gets my lymphatic system moving. I am trying to battle this disease from the inside out by getting healthy, physically and spiritually, and I am not using pharmaceuticals for now.
-Ted Talk given by Terry Wahls can be found at :
http://tedxtalks.ted.com/video/TEDxIowaCity-Dr-Terry-Wahls-Mi
The book I referenced: “The Wahls Protocol”
Despite of the pain you are inspiring others and H.O.P.E. is the magic word here. Lets never stop hoping! (I am sure it is coming sooner than we know – I a.m. sure).
Great post Nicole! Thanks for your honesty & introspection & for validating many of us 🙂 keep the hope going forward!
Nicole,
Hope, love, joy, and faith all equal a life worth living ! I love this picture and it will always give you a visual display of hope (and green)! You are an incredible person and I would be elated to see a blog about how to deal with people who display pity as I am grappling with this issue.
Thank you for this post Nicole! You have again managed to put into words what I so often feel. Here’s to HOPE for all of us fighting through this life 🙂
I wake up on FAITH. HOPE gets me through the day. Much love girlfriend
Nicole, I love this posting. I have very rarely, but have had dreams where I do not have MS. It is pure bliss and refreshing to remember how it felt to be normal. I remember thinking there was nothing I couldn’t do…and I always took pride in doing tasks myself. Part of dealing with this disease is to settle for not having things done the way I would do them if I could. I used to love cooking and entertaining…and now I have to be waited on. When I sit outside to enjoy the pleasant weather, I can’t help but notice the weeds I would like to pick or shaping the bushes with the trimmer. My husband is terrific, but I try to ignor those minor details in order to avoid conflict. I’m sure it is hard to live with a perfectionist, but it was easier when I took care of details myself. My husband is a “big picture” guy and thankfully, he has a really great sense of humor. Truthfully, there are o many levels if frustration during the day with MS and my only way of going forward is to think on the bright side and laugh along the way. Now, I am going to go outside with my granddaughter and encourage her to pull a couple of weeds I have had my eyes on..
Those moments are sure bliss!!!!
Hi Nicole If nothing else yes HOPE. Hope that tomorrow is a better day, hope for a cure, hope that no progression is occurring , etc Hope can be a beautiful word. Thank you for sharing your thoughts with us.
Nicole, I made my first video about hope nearly four years ago after participating in a clinical trial that might rewrite the future of MS.
https://www.youtube.com/watch?v=6aEz87n8Kpw
An update on myself at month 51: still no disease progression and improvement in virtually every measurable area. There is hope in spades. Hang in there.
Dave Bexfield, ActiveMSers
Dave, I watched your u tube video and am so interested. I am convinced stem cells maybe an answer to those looking for a cure…but do you think T cells are the cause of MS? I think they are part of the process but not the originating cause. Reguardless, you have had some success in your results. Who were the doctors involved? Was this done in Houston? I have lots of questions and would like to follow up and get more info on your study. Your future friend, Linda …a fellow MSer
Linda, just click on my name and it will take you to the About Dave page on ActiveMSers, with all of my videos and links for details on my experience.
Yea, hope is great, fully try to believe that. EXCEPT, when I read a stem cell study I would be interested in, but, the age group specified was up to 50 yrs old. I surpassed 50.
In Ericksonian hypnotherapy, one of the ways to achieve a trance state of mind is to focus on the minutiae of experience, taking time to focus on every sensation. When my hand rests on the wrist pad and my forefinger feels the keys yield with a click as my ringer rests lightly on another key, then I know what my hand feels as I type. I can work my way up my arm focusing on just how my palm hits the pad and with how much force. When in a trance focusing on the smallest of sensations, it becomes easier to imagine the smallest of good feelings too, remembering the best sensations or thoughts.
I have used this trance state for MS pain for years as few drugs seem to have an impact. I’ve also used it to right my state of mind when things look bleak. I know we all think of hypnotherapy as a parlor trick, but it is one most athletes use even if they never call it what it is. We all need ways to block out the noise of life and focus on the good stuff, the stuff which matters. Thanks for writing in good times and bad. I and many others appreciate the balance.
Beautiful picture! And, here’s a poem I wrote about hope and MS a while back:
My Body Can Heal
I believe in hope,
in the high ideal that
my body can heal.
Brain lesions do mend.
MS autopsies confirm
regeneration.
Dead people can’t talk
to tell me why that happens.
I’m just glad it does.