This weeks warrior is the amazingly talented artist, Shana Stern. She took the BS MS threw at her and made something (a lot of phenomenal art) out of it. But there’s more to her than her art, check out Shana’s story below and find out what she wants us all to know and remember. Just a forewarning, you’ll start using it as your own mantra.
To find out more about Shana please find a link to here social media below and if you have some time (if not, MAKE SOME) check out her artwork.
You won’t be disappointed.
How do you describe/introduce yourself?
I’m Shana Stern, I’m 49 & I’ve had RRMS since 1999. I live in Los Angeles with my teenage son. Prior to being diagnosed with MS I was a working screenwriter, married & enjoyed an active social life – as well as an active physical life -where I took 2 dance classes a day, 6 days a week. Now I’m almost a shut in & I’ve lost the majority of my friends & my marriage. I had to give up dancing and writing years ago which was incredibly hard. That being said, I’m very fortunate in that I discovered a way to still be creative – via painting with my fingers – which has been a life-saver for me over the past 5 years.
Does MS take a front seat or backseat in your life?
Now this is a tricky, tricky question to answer!
On days I’ve slept well & I don’t wake up with debilitating fatigue – MS takes a major backseat. When I can exercise & fix myself healthy food – I’m in the drivers seat. Same with if the temperature isn’t too hot or too cold. But – if I’ve been on social media too much or been reading too much – my vision begins to act up & I will lose my sight for a couple of days, then MS flips to the front seat. If I get a cold, allergies or high stress, MS is firmly in the drivers seat because those things trigger more symptoms.
When it’s hot & humid, I get millions of pins & needles in my face. When it’s too cold, I get severe bone & nerve pain. Also if my pain levels from my many injuries are high – these all cause MS to at least become a backseat driver.
I’m a fairly classic case in terms of every single day is different than the last and there’s no way to predict or control it. That’s what’s so insidious about MS.
What keeps you going?
I’m a full custody, single mum so my son is 100% of what keeps me going. I’m not sure what the state of my existence would be without him.
Do you challenge your doctor or take their word as gospel?
This is my 20th year having MS so I think it’s safe to say I don’t take any doctor as the end-all-be-all of information. My neurologist is a highly highly respected MS doctor, but there’s absolutely times I know she doesn’t quite “get” what it’s like for me every day. I don’t think anyone who doesn’t have MS can truly grasp it. And because MS affects everyone so differently – even other MS’ers won’t get what others experience. There’s people who have had it for years and still run marathons and barely require any medications. Then there’s people who have had it less than a year who suddenly find themselves in a wheelchair. I do still feel like I have to defend myself to my doctors – especially when it’s about medications. Which is a shame but unfortunately comes with the territory.
I don’t know how typical my attitude is with doctors – because I’ve had many surgeries, a multitude of health issues and I’ve been in physical therapy 3x a week for 5 years now – so I’ve had to become my own advocate and this is something that I feel would greatly benefit other people with MS to learn how to do for themselves sooner rather than later. If you feel you aren’t getting the best care or aren’t being heard – find a new doctor. If you are concerned about a medication – do your own research. Learn how to read MRI’s so you aren’t dependent on one person’s interpretations. Speak with others who share similar symptoms to you. It’s your body. It’s your life. So ultimately the decisions are yours. What’s right for me won’t be the same as you and vice versa. But I think by advocating for yourself, you also give yourself the gift of re-claiming some of your power back.
What do you want/wish people knew about you?
I wish people knew that this is not a choice for me. I lead a good, clean, honest and healthy life prior to my diagnosis. I don’t want to be sick. I don’t get anything positive from it. And the costs, both financial & emotional – have been extraordinary. I’ve tried everything in my power to re-gain health. I’ve tried every alternative therapy out there. And I mean every one – including going out of the country for stem cell therapy. Positive thinking cannot control or change my symptoms. I don’t have cognitive issues because I’m “tired”. My debilitating fatigue can’t be changed by having coffee or trying harder to get a good night of sleep. My nerve pain isn’t “all in” my “head”.
I also wish people knew that suffering is relative – so I don’t want people thinking they can’t talk to me about their lives or their heath or injuries. Pain is pain. Suffering is suffering. I want to be treated as anyone else is and I want to be able to be supportive and empathetic to what my friends go through – because I’m actually quite good at it!
I want people to know when I do discuss MS, I’m not trying to garner pity.
And I want people to remember I’m still alive. Still here. And that I still yearn for friendship, relationships & getting to go out and do things.
To learn more about Shana check out the links below: