A “New Year” as an MS Activist

When I was a kid, I questioned everything! You name it, I wanted to know about it. I didn't see anything wrong with wanting to know more and more and more and even more than that. Listening to adults debate about one thing or another was the greatest experience in the world. Adults didn’t always want me listening in on their conversations – but I found my ways – whether hiding under the dining room table or sneaking behind the stairway banister.
 
You’re probably wondering what this has to do with the New Year, MS and being an activist? Well, when I was diagnosed with MS in the summer of 2005 after losing vision in my right eye, I thought my days of wanting to see people, much less talk to them, were over. I was consumed with grief, sadness and depression, and I couldn't seem to shake it. I took a leave of absence from work to cope. I couldn't wrap my head around having MS and what that could possibly mean for the once vibrant, go-getter that everyone had come to know and love. Now I was this...whatever "this" was, and I felt that I had no way of prying myself out of the MS abyss that I had begun to sink into. How do I get back to me: the wife, the mother? That was the million-dollar question that took me nearly 10 years to answer.
 
MS has taken me on twists and turns, including five disease-modifying therapies, countless MRI’s, and too many doctors to remember. Upon retiring at age 37 because of MS, I had to learn how to navigate the Social Security system, and quickly realized how difficult that could be. Something had to be done. The old Erika began to emerge, doing what she does best – absorbing knowledge and asking questions.
 
I took my questions to the National MS Society. I began talking to different people, getting involved with groups and volunteering when I could. The Society was interested in my story and helped me figure out how to best leverage my passion and talents to drive change.
 
As we head into the New Year, I have one challenge to share with my fellow MS activists: write your story down. Allow your pen and the power of your story to become your friend and even your voice. In 2015, I realized that sharing my stories meant power with important elected officials. I signed up to become an MS activist. I want to speak for those who can’t or aren’t ready to speak. I may be disabled, but I am not ready to disappear.
 
Now, I speak with a purpose. I’m meeting and corresponding with my elected officials to have bills sponsored to support those with MS. I’m writing to the FDA to make sure MS therapies are approved swiftly and quickly. This past September, I was privileged to go to Capitol Hill for the Rally for Medical Research, to tell my story, arm-in-arm with others who want their voices heard. As you may know, the Fiscal Year 2016 budget was passed in December and so many of the items we rallied for as MS activists were included. Our voices were heard! I am going to keep talking until somebody listens – and change is made. That's my promise to myself, my family and the MS community. 
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Erika

Erika James-Jackson

Erika James-Jackson is a "40-something" year-old who was diagnosed with MS in 2005. She retired from the legal profession due to MS and has committed her time to being a District Activist Leader for the National MS Society and raising awareness about the disease. She lives in Northern Virginia with her husband of 23 years and their 18 year-old son.

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    23 Comments

  • SmartyPants   Jan 6, 2016 6:07 PM
    Good for you, and now that you know so many of us are living with our own MS symptoms it makes you feel not alone, that all of us are going through that feeling of acceptance, sure it's hard to take when you are so young, i didn't find out about my MS until i was 53, it was the best thing that happened to me, as i got out of a stressful job and was able to retire. I found my journals in my closet from the days i lived in the Wallawa Mt's in Eastern Oregon doing timber inventory, well as i re read them i started to laugh and said this should be a book, now years later i am an author of three books in "The Eve Chronicles" by Diane DeVillers aka SmartyPants, i never would have had the time to write them if MS hadn't happened. Sometimes things happen for a reason, at least that's what i think
    Stay calm, everyone's MS manifests itself differently at at their own rate. Who knows you might be lucky like me, after ten yrs i haven't gotten worse other than back pain, a half paralyzed r leg, and of course the fatigue. But now i am taking care of me, not of others, and i come first. I need ample rest like ten hours a night, to function, i pay forward resting so the next day i can swim and do my bike workout. I think my exercise has helped my MS, i do 45 min on incumbent bike while reading, twice a day, i swear its the reason i feel so much better than when iw as sitting or laying. and get the right pain med or depression med, it can make a world of difference. Bravo Erika, keep up the positivity. someone is reading this and it may help someone, someone we will never meet, but someone who will sit back, and give a sign of relief.
  • DeaAnnFisk   Jan 6, 2016 6:08 PM
    I have progressive MS, therefore there is no medicine except alternative. I have tried alternative after alternative for 20 years. I do feel that ASEA water has some benefit. When I drink it, I just feel better. Also I am not as depressed.
  • Debra McAfee   Jan 7, 2016 9:19 AM
    I am happy to read about your enthusiasm! I, too, had to give up my career. Additionally, I use a walker and can no ,, drive a car. I was diagnosed in May 2006, stopped working in December 2007 and received my walker and stopped driving both in May 2009. In three years, my life turned upside down.

    However, I still felt like I had something to give. I felt like I wasn't done, yet. Advocacy found its' way into my life. I feel that I can be an MS Activist on my own time and still make a difference. I am beginning to see those results by the type and timely responses of my federal and state lawmakers. I am a member of our state Government Relations Committee (GRC) and I am a District Activist Leader, also. I know we are making a difference.

    I had My Story written before I made my first State Advocacy Day trip. I wrote My Story as a leave behind. Last year, I added my picture in the upper right hand corner so the lawmakers would have a face to put with my story.

    Our voices are being heard and our stories are being remembered. Please think about whether advocacy could fill a void in your life.

    Good luck and ❤ to you as you all paddle upstream against your fight with MS.
  • Doc Clay   Jan 7, 2016 3:54 PM
    Thank you for your article. It was heart felt. All of the MS patients in my office currently are symptom free. Those who have had their follow up MRI's have shown no progression of plaguing. Latest research has shown that MS is most likely a disease of trauma to the upper neck. I am curious if this is true of your experience? There are other excellent options for those suffering with MS as far as treatment. Keep up in the spirit of inspiration!!
  • Mildred Autry   Jan 7, 2016 4:22 PM
    My son Jimmy is 29 years old he was diagnosed with MS on March 23,2015.So far he still works he has his good days and bad ones.He lives in Lextington NC.He takes it one day at a time.
  • Debbie Schneider   Jan 8, 2016 12:52 AM
    I so enjoyed reading your story. I was diagnosed in 2007 with primary progressive MS at the age of 45, and what a ride it has been! I finally had to stop working last year and I am still a little shell-shocked and don't really know what to do with myself. I do participate in the advocate program a little by sending emails to congressmen, etc., when I get a request to do so. I need to get involved with something more, and since I have a big mouth and can still talk it sounds like I should get more involved with this. I will make a resolution for this year to get more involved, go to the MS Society and see what I can do, and stop sitting here thinking the world ended when my body gave up on me. I do my best to stay positive and I refuse to feel sorry for myself (at least when people are around!) and I need to get out there and get involved while I can still drive and get around fairly well with my cane and scooter. Thank you for the inspiration!
  • Sherry   Jan 8, 2016 12:57 AM
    Thank you for sharing, and for all of your hard work on behalf of all of us MS'ers!
  • Sharon Harvey   Jan 8, 2016 11:44 AM
    I want to start by saying you are an amazing woman, mother, wife, and friend!! I am so very proud of you and who you have become in spite and because of MS. This was very well written...I expected nothing less, and confirms for me that God doesn't make mistakes. Your voice will be heard and you will help countless people both with and without MS to get involved and to make their concerns and opinions known no matter the cause. I am so very happy for you and I continue to pray for you and your wonderful family, which I can say I'm blessed to know. Keep up the good work and never ever stop wanting to know more. I love you E!!
  • Teri Hatcher   Jan 8, 2016 12:32 PM
    I am so very proud of you! You are a survivor, a mother, wife, and friend! Your story is a positive message to everyone who reads it. Continue to write and share your story and in doing so you will uplift and inspire others to tell their story. God loves you and so do I!
  • Annette Huston   Jan 8, 2016 3:31 PM
    So many celebs/their family members have MS. Of course you and I know that means the celebs should care about fighting/stopping this. How many have used their celebrity or money to help? Breast cancer has Susan G. Komen and you know how much that has helped. Do the celebs think they won't get MS? I believe they don't understand that each of them and family and friends and descendants can get this any time!! Some of the celebs are: Jack Osbourne, Alan Osmond and his son David, Meridith Viera's husband, and I know there are more I can't think of or don't even know about. We need a very public person to get behind us like Susan G. Komen's sister did.
  • Ellen   Jan 9, 2016 9:42 AM
    To Anette: The book, "Speedbumps," was written by actress Teri Gar. It is about her life with MS. I got it as a gift and really enjoyed reading it. Mission I recently tried to find out how she is doing by searching the Internet. I met Teri Gar a couple times when she came to speak with MS association where I live, but I have heard nothing about her since then.So I found her name when I googled her and a site came up from someone who indicated She was not doing all that well physically or financially.
  • Ellen   Jan 9, 2016 9:48 AM
    Correction from previous post- take out word mission. There doesn't seem a way to edit these posts and sometimes I am dictating them and the TV is on and I miss extra words that might get inserted.
  • Charmaine Hicks   Jan 10, 2016 1:10 PM
    Thank you for your story, you are an inspiration!
  • Susan Steedley   Jan 20, 2016 12:35 PM
    Thank you for your comments - what I needed to hear today. I am struggling a bit with identity and feeling less than competent.

    Trying to figure out my place...
  • James   Jan 22, 2016 10:32 PM
    Thank you Erika for the work that you're doing. It means a lot to those of us living with MS. Sometimes we don't fully understand why things happen to us, but be assured that the actions you're taking are benefiting others, and that's a pretty positive outcome.
  • Nettie Lindvig   Jan 23, 2016 7:12 AM
    Hi Erika! I love your story! I am also an activist and very new at it! I would love to visit and join forces with you! I have a mission myself and that is to try an get a bill to help people with MS get their Social Security Disability! I have been turn down twice and now have a lawyer, but it takes at least a year to see a judge! I had to go back to work part time! They turned me down because I could flip a piece of paper over....so they said I could still use my hands! WOW!!! I have seen my state representatives about the last 2 bills, so I got to meet with them, I was very nervous but they were so nice...it was awesome. This March I get to go to Washington DC! I am so excited! I would love to visit and have a partner in the fight for SSD and get your expertise on everything that you have accomplished! Please email me back if you are interested! Thank you so much for all that you do!!!!! Nettie Lindvig
  • Avatar
    sammyjoes  Jan 23, 2016 5:26 PM
    MS and Toxic Mold, Stachybotrys Chartarum,
    It all started in 2003 I was living In a house CLOSE to the water. One day I noticed my footprints on the floor as I looked out at the dock. This greenish black mold had engulfed most everything in the house. I began feeling like I was in the latter stages of Alzheimer's. I tried in vain to get rid of the water but it just kept raining every Wednesday and Friday and the dirt basement just wouldn't dry. I have done a lot of research since then but had no idea I had MS until I went for an MRI on my pituitary gland. That is when I accidently found out I had MS. Just some early MRIS back in the 2002 showed no legions. I have another MRI in 2006 and 12 lesions were there. I wasn't showing signs of anything. My health was great. So when the doc told me I needed a spinal tap I thought for sure they were mini strokes. Runs in the family. I was wrong. The spinal tap came back and I did indeed have MS. The reason I got on this site is to see if anyone else has come down with MS from toxic mold? I am also allergic to penicillin. Also have you ever had mono? My MS Doc says that could be a precursor for MS too. So glad to be here because I am finally showing cognitive signs because some of the lesions are on my memory and emotions. just glad to be here right now!
    Sam
  • Anita Towhill   Jan 23, 2016 7:56 PM
    My new advocacy involves creating an adult coloring event at our first MS disability apartments to help residents to meet others with MS and to not feel alone.
  • Excadet  Feb 25, 2016 9:05 AM
    Hi Erika, I was Dx in 1991, so long ago that there were NO disease-modifying drugs at all!I was 30, but in retrospect, remembered a symptom from when I was just 21. Three years later, I got on Betaseron, and have since been on a bunch of other drugs! I managed pretty well until 2011, when a series of setbacks conspired to send me an a rapid descent. I stopped working in November 2013, and am still trying to adjust.

    Good luck with your advocacy efforts and thank you for your service. I am working towards being able to do similar things and wanted you to know how much I appreciate your excellent writing, as well as your work. I plan to follow your blog! Thanks again
  • Marche Clarke   Mar 14, 2016 6:48 PM
    Hi, Erika James-Jackson!

    I am so glad you published your story. I was diagnosed with MS in June 1995 at the age of 47. Ironically, one day after my 47th birthday I could not get out of bed and my legs and feet felt numb yet like electrical currents running up and down them After two visits to the ER I insisted that I be referred to a specialist so the ER Dr. referred me to a neurologist. Almost two months following my first exacerbation I was diagnosed on June 13, 1995. Since that time I have had to get reading glasses and have fallen several times. I have held several very good jobs and done very well in leadership roles, however, I fell in September 2012 ( a serious fall) and ruptured my left rotator cuff in 3 places which required surgery. While I was awaiting surgery and for my employer to tell me how it would be paid for (did not have Worker's Comp insurance) I was terminated from a job I loved with a company that I helped build. That same year (January 2012) I lost my mother to Alzheimer's and the so the loss of my job, the injury to my prominent arm, the lack of insurance and my eventual dismissal from my job created a state of depression that I had not felt for some time. I am finally old enough to have Medicare otherwise I would have no health coverage but I am concerned about not having enough income to take care of my basic needs adequately. My Doctors are now not sure I have MS ( although I have not had an MRI since 1995 to determine if I still have lesions on the base of my spine and my brain. This is the first time I have told this much about myself mainly because I did not feel I had enough MS symptoms to talk about. I am now trying to find out from my insurance company if I can go t
  • suzette   Mar 20, 2016 12:41 AM
    I was just diagnosed with MS in oct. Of last year. The doctor said I have had it for at least 10 years. I am like you were. I cannot get my head wrapped around this. I have other health problems and I am able to do what I have to do to take care of myself and say, ok I have this. This is what I am doing for it and I go on. Somehow I cannot do it with this diagnosis. Why? I am taking copaxone 3 times a week and take pain medicine at night because my legs and feet hurt all the time. I feel like I am losing myself. I cannot do things as easily as i used to do. My memory and eyesight is not as sharp as it used to be. If it was because I was getting old I would accept it because everyone gets old,but there is something about having ms I cannot grasp. I am scared of the future. I do not want to be disabled. I want to keep going, working, living my life. A friend said I am in shock. Another said I need to be patient with myself to accept this disease. It is good to know you felt the same way.
  • Erika James-Jackson   May 4, 2016 6:53 PM
    I want to thank everyone who has taken the time to share their story with me and the rest of the MS community. It's not easy to open up to strangers, however, those of us with MS are far from strangers. We may not know each other personally, but we share a special connection that the average person doesnt understand no matter how hard we try to explain what we go through on a daily basis.

    Please keep your head up, cry when you need to (I know I do), and know you are not alone. MS can make you feel isolated from the world around you...like the train is passing you by. I get it! But somehow we get up everyday and face the world no matter how hard it is. That says something about us...WE ARE STRONG!!! Dont let anyone tell you different.

    Take care and keep fighting. Tomorrow just might be the day that our change comes.

    Erika :-)
  • test   Nov 10, 2016 11:19 PM
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