Click here to receive MS news via e-mail
Lydia Emily, MS wall

Engaging Thoughts

Most of us with MS rely on pharmacological assistance to make it through the day.  I know taking pills by the handful is the regimen of many people, whether they are sick with multiple sclerosis or one of many other disorders.  I was surprised at my own emotional reaction a few years ago when I bought a medicine box to organize all of the pills – you know those things with the flip lids.  Images of elderly people needing these containers to stay ahead of terminal illness filled my brain.

Wait! I wanted to scream, I’m not that old or close to dying. The logical side of me understood that the pill organizer was important to tracking whether or not I had taken a particular dose – remembering what I had taken and when has always been a challenge. But accepting this box as part of my routine was emotionally difficult.

Once a week many of us sit down and count out the white and yellow and other colored tablets and capsules that are meant to keep us healthy; this act of communion usually took place on  Sunday for me, as if it were a religious ceremony. Refilling that pill box each week was a ritual with such significance for my health that eventually it became an automatic event.  I didn’t think much about it as I split those tablets into morning, noon, and night doses. I just did it because it was necessary to feed my health.  All the pill-popping became a part of my persona, a scheduled reminder of the challenges that come with MS.­­­

Lydia ms wallLydia Emily, an  internationally acclaimed artist, human rights activist and a person I deeply admire, posted a self-portrait on her Facebook page today, and it immediately struck me as much more than a simple doodle. Lydia Emily has an aggressive form of MS, and she is constantly challenged with more pain and disability. However, that doesn’t stop her from painting and creating art meant to provoke conversation around social issues and causes.   Her messages are often amazingly complex and large – painted on outdoor walls of prime public spaces.  These include brilliant murals on behalf of MS to raise awareness of this disease, and her ongoing public acts of art are as a weapon bringing attention to human trafficking, Tibet, and other places where human rights are regularly violated.

Breakfast of Champions #multiplesclerosis – Lydia Emily

It struck me that her self-portrait holds as much a message and an artistry as her other works, despite its crude construction —  this could be any one of us who are dependent on what comes out of those pill boxes each day.

It’s difficult to not become identified by our disease. Lydia Emily fights every day against stereotypes of people with chronic disease to be seen as more than just her MS, and she does this through her art and her relationships with her family, friends, and rescued dogs.  I fight, too. But for me it was by abandoning that pill box, dropping some superfluous meds from my regimen, and getting on engaging with ‘it,’ whatever ‘it’ might be at the moment.  I don’t want to be defined by MS and dominated by my treatments, and I trust you don’t either.

Thanks, Lydia Emily, for this visual reminder.


Note: Multiple Sclerosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Multiple Sclerosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to multiple sclerosis.

Tagged , , .

Laura Kolaczkowski comes from Beavercreek, Ohio, and worked at the University of Dayton for over 25 years until MS challenged her enough to go onto full-time disability. She is active in the MS community on multiple levels, and writes for her own personal blog, InsideMyStory and as a patient expert for Laura is the Lead Patient Representative and co-principal investigator for iConquerMS™, a patient powered MS research network. Laura freely admits her Liberal Arts background fuels her interest in patient engagement and empowerment and she struggles with the science of MS.
Click here to receive MS news via e-mail


  1. cyril cook says:

    I am dying slowly I need help is there anyone out there can help me my m.s is getting worse I will try anything new

    • Tammie dore says:

      Cyril, hi
      Your comment touched my heart.I often feel the same way when the meds are not helping and the ER sends you home after waiting for hours just to give you a steroid, something you already have at home..I’ve been there far too many times to count. I just want you to know that you are not alone because others, myself included, have to find strength and have hope that we can get the help we desperately need.

    • Myke says:

      There is something. Go to Facebook and search for HSCT. You will find several closed groups in different regions. For example there is one for Chicago where Dr Burt is doing trials right now. If you can get into the trial, insurance will cover it. Just request to join. Otherwise you can find raise to go to Mexico or Russia or other places. There is tons of info in these Facebook groups. It’s the only thing that is close to a cure. For many, it has cured them.

    • Jumpy says:

      What have you tried eliminating inflammatory foods from your diet.?
      Also there have been many articles here lately about the Human gut Biome being out of balance in MS patients.

      There was a study about the anti histamine Clemastine Fumarate helping to prevent inflammation and helping repair of mylan in mice. It is the same chemical as Tavist with out the D for decongestant. There are generic forms now. Wall mart can order it and Walgreens has a generic brand of it.
      Since it is over the counter it can`t hurt to try it but it may take some time before you notice a difference. My son feels it is helping him walk better and over all he is feeling better through all of the above.
      He does not take any of the drug therapies. All that his doctor tried caused reaction problems or made him worse.

  2. sarahrivka says:

    i don’t know if it is still considered an alternative to disease modifying drugs, but low dose naltrexone seems to help.
    I take rebif and they are supposed to cancel each other out, but i notice a difference when i cut back the LDN. Just thought that it might work for those of you who cannot take traditional therapies—there don’t seem to be side effects—regular physicians don’t think much of it(for the most part)—but it was developed by a physician—i think his name was Blihari—but I’m not certain any longer. It has been years…
    hope this can help someone

Leave a Comment

Your email address will not be published. Required fields are marked *