I was no doubt a different person pre-MS. The disease has managed to smash all of my old parts and replace them with new ones that are stiff and unfamiliar to me. As I learn to get comfortable with this new normal of mine, at the end of day, I just need …a hug. Just like my friend Judy of Peace Be With You. I have no choice now, but to keep moving forward. However slow that may be.
I Still Want to Shine
I remind myself
that apart from my MS
I am still intact.
I still want to shine
with kindness, mercy, and love
to light up the world.
Bruised but not beaten,
I embrace my good person
who now needs a hug.
Her poem sums up my wish for this new experience. I recognize my bruised ego but hope it hasn’t over shadowed my shine. To be honest, I don’t think it has. It’s just that with each new symptom lurking around the corner I temporarily succumb to an onslaught of negativity. I feel bruised and beaten. I drag my feet. Head held down. Tears ready to drop.
Then slowly but surely I remember and continue onward. Dragging whatever new symptom I have in tow. I want so much more than I already have. I hear the key is to want what you already have. Now be honest, who doesn’t want more? But all said and done, if nothing else, I choose to believe in my ability to adjust to the unknown. I just hope as I adjust you do too. Maybe we can muster the courage to shine together.
“When you believe something can be done, really believe, your mind will find ways to do it” -Dr. David Schwartz
That alone gives me hope.
i have recently been told i have ms, secondray pro,havent spoken to anyone who has it,does it get better .xxx
bella beattie
I have it. I find you just move into a new baseline. A baseline very different than where you were before.
I found you on the WEGO FB page. This is a great post. I don’t have MS but I do have a progressive disease that claims more of my abilities each and every year. As a teacher, I am still trying to find my peace with the fact that I am living with a disease that will eventually claim my ability to speak due to muscle wasting in my throat (and in fact, I am much harder to understand than I was just a year ago). I think it’s hardest to shine when something is taken away from us; like you say, we must adjust to new bodies (when we were quite comfortable with the old ones). But if you believe that true “shine” emanates from the heart and soul, and NOT the body or skin or muscle or bone or whatever else is problematic, then it’s impossible not to keep shining. Thanks to you (and your friend) for reminding me that I am still intact. Sending virtual hugs to all who need them! Best, Jessica (http://rollerskatingwithrickets.com)
Jessica,
Thanks so much for visiting my site. I appreciate different perspectives. Enforces we all basically want the same things. Please come back, I post on Tuesdays.
Hi Nicole hope you are doing well. I have posted on your blog before you are a light for many of us and let me see that it is still possible to make a contribution to life if we allow it. You see I have always been so proud but I feel ms is slowly stripping that away. In the beginning I walked un aide for about 6 years then came the time for needing a cane that I did not want people to see me with. I usually walk in the house without any assistance and slowly stopped doing activities that required a lot of walking. Then I seen your post with you on your scooter and it let me see how you are still living your life with your hubby. I thought about it and I realize not only am I cheating myself but it is not fair to my husband who remains by my side through all my ups and downs I’m cheating him out of his life too. Like many ms patients it struck me at late 30’s and I have had it for 12 years now. So together he and I went to scooter store website and ordered my new mobility scooter. Thanks for contributing and alowing us to see their is still life after diag. if we get past the pain that will still rear its ugly head from time to time but I just think about you and say I choose life.
@ Jennifer Yearwood, if you happen to read this I am African American and live in Ohio. I go to Cleveland mellon center and previously injected with avonex for 10 years until my neuro felt it was no longer effective. I am now on Gilenya I stared it Feb 6. I think I feel a bit improvement in my numb hands but they have been this way for so long I’m not sure if they are improving or not. Hope this helps you I see black and whites at the mellon center with just a few males from time to time. know this is long just needed to add some of my experience to those I know is interested in hearing it.
Hope eveyone have a GOOD DAY!
Angela, Sorry it took me so long to reply. I’m actually a little behind on things. But I am so proud of you! I wish you the best in your scooter adventures. I appreciate you reading. Thanks!
For months your voice has been a light in my darkness. Here is a beautiful candle and big squishy hug for you, xo Olivia
Olivia, Thanks so much! ((hugs))
AM AN AFRO CARIBBEAN FEMALE,JUST DIAGNOSED,,BUT IN RETROSPECT FIRST MANIFESTED AGO….
AM SEEKING2 CORRESPOND WITH AFRO PATIENTS ,,SIMPLY BECAUSE MY SPECIALIST AND OTHRS CLAIM THAT M.S. AFFLICTS CAUCASIANS USUALLY,, UNLESS THERE IS A CAUCASIAN LINK IN THE FAMILY CHAIN.
.THEY ALSO SAY THAT FOR OBVIOUS REASONS,, DRUGS ,EFFICACY WLD NOT HAVE BEEN AS WIDELY TESTED IN THE AFRO NETWORK AND THAT THEY R IN HIS SPECIALIST VIEW OF NO REAL HELP…MY SIS WAS DIAGNOSED 4 OR SO YEARS AGO AND HAS BEEN N THE INJECTIONS AND HAS STEADILY DECLINED,,REGARD;ESS…….
LIMPING….STICK…WALKER….HEADING4CHAIRNOW..
U COULD IMAGINE MY FRAME OF MIND SEEING THIS DETERIORATION BEFORE MY VERY EYES…AS WHERE I MAY HEAD UP…
COULD I HEAR FROM OTHER AFROPATIENTS 4 PURE MEDICAL REASONS….JABS DO NOT WORK WITH THE AFRO NETWORK,, SUPPOSEDLY.
ANYONE HAVE ANY INFOTO ADD TO THIS PLEASE ….MANY THANKS.
I HAVE REMITTING RELAPSING…BUT THIS PAST YEAR I,VE BEEN ALMOST CONSTANTLY IN A YEARLONG FLAREUP,,VEERING SEVERELY TO ONE SIDE LIKE A DRUNK,, TRIPPINGUP AMILLION TIMES …HEADFOG…PARASTHESIA…PINS AND NEEDLES….LEG NUMBNESS……EASTER 2011 TO NOW………
PROBLEM THO IS THAT IM LOATHE TO IUSE JABS….AFRAID OF INJECTIONS…MORTALLY AFRAID……
MY NEURO SPECIALIST FEELSTHE JABS DONT HELP AFRO PATIENTS….AND USES MY SIS AS E.G TO PROVE..
I HAVE TO DECIDE ON APRIL 11 TO JAB OR NOT,, GOING FORWARD……
WHATS THE PREVAILING VIEW TO YOU ,, AN AFRO PATIENT AS MYSELF,,FROM YR SPECIALIST.
GELNIYA AND TYSABRI ARE ABSOLUTE DEATH SENTENCES….YET ARE BLITHELY RECOMMENDED BY SOME…WHAT A THING
DO YOU JAB/SELF INJECT
WAS IT YOUR DECISION OR YOUR DOC,S.GOOD LUCK WITH YOUR ACTIVITIES
TAKE CARE…JENNIFER
,,REGARDL
Jennifer, I’m taking Gilenya. My first doc told me the same thing about us getting the disease. I can’t imagine what it would be like if my sister had this too. My heart goes out to you. I post new stories on Tuesdays and have a bunch on here already to come back and see me.
I just discovered you! My name is Lisa and I feel I need an MS buddy. I have a limited support system and I do feel alone. I have primary progressive. Any suggestions that could steer me in the right direction? Just someone to relate to on a one on one basis.
Thanks
Lisa, Thanks for reading! You can contact me further through contact me on this website. Suggestions? Sometimes I feel like it all depends on doing what you can!
Your blog today really touched me ♥ You express, so beautifully, how many of us feel ~ thank you ♥ and thanks to Judy for her lovely poem. Wishing you all the best ♥
Lorie, thanks a bunch. Judy is great.
*Here’s a hug and an extra light bulb* 🙂
Shawn, Thanks. I needed that.
Thank you for sharing that wonderful poem Nicole. And for your response to my latest blg entry. Continue to take the best care of yourself. Wishing you all the best,
Linda
Linda, Thanks for reading, but you know the poem was from Judy at Peace Be With You.
You have been an uplifting advocate and inspiration to me, Nicole. You keep flashing that lovely smile to all you meet and keep educating everyone about MS is and does to some talented, hard-working, young people in this world, who would like nothing more than their “lives back”!!!
Janet, Thanks for the lovely comment!
Nicole, what a beautiful statement. Eloquent, even though heartwrenching at times. I am honored that you included my poem. In my heart, it now will always be accompanied by your illuminative words.
Judy, Thanks for the huge compliment!
You do shine, Nicole. Your blog makes me smile each time I read it. And if you can still drag your feet, you’re doing good. Mine need to be wheeled across the floor.
Laurie, Thanks. Yes, I do wheel mostly when we leave the house and aim to use the walker inside. So I guess I should feel lucky!