Behind the scenes: my movie about life with MS.

Last spring I was approached by American filmmaker Courtney Dixon who was interested in collaborating on a documentary short for WebMD about MS. My first reaction to the idea of a film about MS, about my MS, was decidedly…meh.

Yeah, sounds cool to be in a movie, but a movie about MS?

I’d seen stories about MS before, and a big part of why I tell my own is because I don’t think the media always gets it right. Also, I’m a control freak, and the idea of letting someone else spill my secrets wasn’t something I was sure I’d be comfortable with. Plus, I’d always imagined Mindy Khaling would play me in the movie about my life. Obviously. And Courtney wasn’t even willing to try to get Mindy. Apparently, that’s not how documentaries work.

Enter wine.

Courtney’s commitment to realism lead me to reconsider blowing her off. I creeped her other projects and was impressed with the shorts she’d already produced. We had a couple of phone calls and when she told me she’d spent a recent Friday night with a bottle of wine, binge-reading my entire blog, I felt seen; like she ‘got’ me. The amount of research she’d done gave me the confidence to take a leap of faith and sign onto this project.

My dining room furniture is chilling on the balcony, out of sight. The dog is hiding in the bedroom with a couple of grips (whatever that means). #setlife

Before I knew it, a film crew from Atlanta had shown up in Toronto with a truck full of equipment to take over my apartment.

My movie about MS

We spent two days filming and talking about my life with MS. True to her word, Courtney never asked me to sugar-coat my experience, or to clean up my language.

Every MS story is different. It has been an honour to get to share mine.

Watch the movie:

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65 thoughts on “Behind the scenes: my movie about life with MS.”

    1. Well done, you!

      Thanks for smashing that horrible “I have MS but it doesn’t have me” saying. I hate it. MS does have me!

      Thanks for all you are doing to give insight, beauty and laughter to the icky world MS.

    2. You are truly amazing, a badass and so gorgeous!!You have the best blog and you are a true inspiration reslientsy!!
      😘Maureen

    3. I admire you and the reason I do is you tell it like it is. I can relate. I have brain issues with my MS. I don’t think like others and sometimes l have trouble talking. I have been falling up and down stairs a few times myself for like you said no apparent reason. One of the falls has messed up my right shoulder. I have two options, one is surgery and the second is pain management. The Dr. Feels like I am not a good candidate for the surgery because of the MS. I don’t want to be doped up all the time so I am not sure what I am going to do. I love reading your blog you really get it
      Congratulations on your short Movie it is amazing and not sugared coated at all. I wish Doctors would really listen to us and not try to give excuses for the way we feel

    4. I totally understand . I actually used to use my walker and high heels at work. It would kick my ass but I refused to look “disabled” 🤦🏻‍♀️ Well grant it I don’t work anymore , don’t use heels anymore but I do want to dance more with my husband even if it’s with my cane. I struggle everyday and never know what I will be using a cane, walker, or wheel chair but dammit I’m no quitter. My speech slurs. I sound like I’m from Boston or New York but born and raised in El Paso , Texas. It is what is and it’s still me .

    5. Maybe ampyra can get u off the cane ? I was like you. Cane even wheelchair. This med has been a miracle for me. No more cane, not much wheelchair either. It takes hours before I finally go down. I use walking sticks when hiking a bit. Blessings to u..♡

    6. Thank you! I needed this….I still hid my cane in pictures and never would post a picture of me with it! But your right it is my tool. I can still be glamorous with my aids

  1. Colleen Bentley

    Great job! I’ve been living with MS for 26+ years. Not in need of a mobility aid yet. Bumping into walls and not making corners can be tough. Keep up the website. It’s funny and well done! Thank you!

    1. Just wanted to say thank you for sharing. I had symptoms at 15 they found lesions at 16. They said everything shows MS but not hjur spinal tap. I had issues all threw my 20s and 30s leaving them to say the same thing they did when I was 16. 5 spine taps later I finally said no more I don’t care what’s wrong. Well at age 38 I couldn’t ignore the symptoms and the drop foot. They finally looked at me and said it was infact MS. I’ve heard so many other women with the same story as mine. Just hearing you talk about it some how makes me feel like I can kick this MonSters Ass too! Thank you!!

      1. Stories like these are so upsetting. I always recommend getting a second opinion when faced with a serious health issue. Doctors aren’t perfect and it might just take a second set of eyes to recognize what’s right in front of them.

        Thanks for watching and following.

    1. Ardra. Thanks for making MS appear trendy. Love your fashion and out look on MS. I’ve been living with MS for 25 years. I have the greatest support system with friends and two fabulous daughters.

  2. Wow!! Yes!! All this and more!! You are the bomb!! Thanks for putting it out there so others that don’t understand can understand. ❤️

  3. Ardra, we’ve exchanged a few pleasantries on social media. I’m still dodging that diagnosis doing things that make regular docs wrinkle their nose, whatever.
    My close call and research opened my eyes to so many things i was blind to and I’ve met so many inspirational people. I know, everyone would prefer to be disease free and uninspiring. I’m retired military. The units in which I served survived on cynicism, sarcasm, dark humor and brutal honesty. You have all of that and class. Great job!

  4. Love your blog. Also think the “I have MS, but MS doesn’t have me” is stupid. I mean if it helps some that’s great. But it’s not truth is it. MS sucks!! Also get annoyed with people who prescribe to the, you need to be positive all the time, stance. Hell no it’s ok to be a negative nancy sometimes isn’t it, because as I might have already said, MS sucks!! But we all should fight a good fight against MS, as best we can 🙂

  5. Girl you are badass! I love that you share your point of view with the rest of us “MSers”. You make me feel such better with your blunt humor and sharing anything you want.
    Keep blogging, you make this life with MS less lonely ❤

  6. Awesome video! I sooooo related to the part about hiding the cane when you get your picture taken lol. I got over that too. Also resisted using a cane, even though I kept falling. Finally, my sister bought me one for Christmas – that was over twenty years ago. Now, I don’t leave home without it! I’ve graduated from the first utilitarian one to my current one, not as flashy as yours but it has special meaning and replaces one that I accidentally lost going through Roger’s Pass in the Rockies.

    I feel like you’re inside my head telling my story. Thank you.

  7. Perfectly said, Ardra! It’s nice to put a voice on the picture, too. When you were saying, “I may have MS, but MS doesn’t have me,” I was thinking, “God, I hate that slogan!” Yep, we’re all different, but I certainly understand the thought of using a cane or a walker in the future freaks me out. I saw this guy with a cane that was really a piece of driftwood that looked like a dragon on the top. If if had a cane like that, it wouldn’t be so bad… keep proving people who don’t know crap about MS that they are wrong!

    1. Style matters so much! I really think more and more businesses are starting to realize this. Fingers crossed for more accessible clothing and cool mobility aid options soon.

  8. Bravo!! I am so glad you shared your story!! Thank you!! I feel like I can resonate with so many segments- recently on a trip to SE Asia every young person ask me what happened. They do not see people out and about with mobility – very respectful and kind. THEN to top it off, I had to over hear ignorant ex pats at dinner compare elephantiasis to MS: WTF? Rather then be locked up in Bangkok, I bit my tongue. My daughter cried- I am now motivated to raise more awareness not only as a policy advocate but more! TYTY

  9. Loved this movie! Keep telling like you do, because it’s how most of us do too! I wish I could share this video with family and friends so maybe they would get it too?
    Keep on living your best life.
    Love to you, Vicki C. Fellow MS fighter.🧡

  10. YESSS! I always liked what you had to say. I looked forward to your posts. I was grateful you were “out there”. But, now this – this is just… beyond. And I want to know how 👏🏼 you 👏🏼 got 👏🏼 in 👏🏼 my head!?! Thank you (to you and the brilliant filmmaker & crew) doesn’t begin to cover it. Awesome expression of such a mindfuck of a disease. Brava.

  11. This was NOT one of those touchy-feely-it’s-gonna-be-okay videos. This was super refreshingly blunt, honest and kick ass 🙂

  12. Brilliant! Well spoken and nailed it perfectly. I think this will help me to find a different perspective on things when I try and go out, as I can relate so much to this.

  13. Thank you for making the video and putting yourself out there. I love your blog and want to practice being a badass like you!

    By the way, I have found that a fashionable cane does make it so much better. How do you keep yours upright? Mine is always getting kicked, tipped, and crashed on the floor.

    1. The sound of the cane crashing to the ground is the sound-track of my life. My first cane was a beautiful walnut that I chipped within the first hour of owning it. It got so banged up and scarred that I used to say it looked like the lesions on my spinal cord.

  14. Ardra! So proud of you! I was so excited to watch this… but my severe 24/7 MS vertigo wouldn’t allow it. My brain couldn’t deal with the style it was edited into🤦🏼‍♀️. Soooooo, I just listened to it instead. Proud of you for telling your story, and I loved the beginning when you said that clichéd line, (which makes me roll my eyes every time I hear it), and then said “that’s bullshit”. Keep telling the truth about MS. It makes us all feel seen. Just sucks I couldn’t watch it🥴🤢.
    Congrats on this!
    Take care ,
    @kjartlife

    1. Ugh. Vertigo is the worst. Thank you for listening! I hope you get some relief soon.

      Everyone should check out your insta to see the inspired and beautiful art you produce. Love seeing your paintings and am amazed by how much you produce. The things that heal us are so much more than medicine (but like, still take your medicine).

  15. Wonderful watching you speak so well. I live in Scotland where it is currently grey wet and dark for the next 6 months anyway so am heading for hibernation like a bear. It’s great to know there are fellow MS ers out there who can share stories.

    1. I loved visiting Scotland, but we got lucky with the weather. I hear you on the hibernation front. I love Toronto 6 months of the year. The rest of the time I feel like the city is trying to kill me.

  16. Ardra, would it sound funny if I said this movie made me want to just hug you? Maybe
    because sometimes I (a somewhat control freak) just wants someone who understands to hug me. Your attitude and your truth is what needs to be known throughout because people have NO idea. The show “Elementary” is a perfect example of NO idea. Their rendition was appalling. She was diagnosed and dead within 8 years!!! Really? WTF and how freaking ridiculous! Is that what people really think? Sure it’s hard and sometimes I hate my life now after being so athletic, but it’s not a death sentence, is it?

      1. You are absolutely right. It bothers me a lot how much we hear the opposite narrative. This doesn’t give voice to the people who don’t survive this disease, nor does it motivate the resources needed to find a cure.
        Thanks for commenting.

  17. Ardra this was really great. Wish I’d found it when I was diagnosed seven years ago but happy for all the newbies who get to watch it now! Keep going you’re great.

  18. Ardra this was really great. Wish I’d found it when I was diagnosed seven years ago but happy for all the newbies who get to watch it now! Keep going you’re great.

  19. You have become my biggest role model! I feel like you just put exactly how I have been feeling about MS, in a perfect 10 minute video. I am 25 and 2.5 months into my diagnosis, and the hardest thing was 1. The cane, and 2. Feeling like I had to be strong for everyone else. Also thank you for being real, we need more people like you!

    Olivia

  20. I have Primary Progressive MS. I loved what you said, i wrote about my journey with ms. Mine started when i went blind in one eye on holiday in brazil and it took 16 years and probably 3 bouts of ON to finally get diagnosed with ms at the age of 67 because i had lesions on my spine in different places and two positive VEPS one at the beginning and one at the end.

    I am lucky with aids as at my age its expected but it must be harder when you are younger to use them. I believe if i had been younger I would have been diagnosed with MS much quicker. I noticed you have a lazy left eye, i do too it is this eye that is worsened for me with my Optical neuritis.

    I too hate to seem myself walking. I have a wildlife camera out at the moment catching hedgehogs and foxes and i caught myself on the video and truly freaked out. I had no idea just how old and decrepit i looked. I cant wear eye make up as now i have blepharitis and it makes it worse.

    Your very beautiful in body and soul, and a great advocate for younger women who have MS to show them its not all scary. I am going to share this as I think its important to do so.

    I hope you dont mind this is my journey with MS and in my journey i also lost my mum and my husband.

    https://livingdailywithmultiplesclerosis.com/2018/03/04/the-beginning/

  21. Ardra, thank you for your honesty and for telling it how it is. Like you, I hate having to explain myself to random strangers, sometimes I want to tell them it was an abseiling accident!!

  22. You’re awesome. Thank you! I love how candid you are about this shitty disease. And I love how you are transforming how our world sees disabilities. It gives me courage to not be ashamed of using a mobility aid.

  23. Would I give MS back if I had a chance….? Yep a question someone asked because people learn sooooo much from thier illness they’re glad they have it….I’d give it back in a moment! I call myself an ” ENDURER ” I endure and thrive where I can and after 26+years its a slow slide into disability. Social media has given me a voice and an Avenue to share and connect. So thankful compared to past years where there was no one to talk to…except that support group I got asked to leave because I suggested we do something else than whine……@mrtowdswildride

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