MS: My Dark Passenger

Multiple Sclerosis; MS; the Monster; the Beast; there are so many names for this disease that people refer to it as. “Oh the monster is showing it’s ugly face again today”, someone might say when experiencing some sort of flare. I have never called my MS anything, it just wasn’t me, I always felt a lot of these names were too… cute? They didn’t do the evil known as Multiple Sclerosis any justice I suppose. For my MS, I called it as it was; my MS. I never called it anything else because nothing really seemed to fit my MS as I experienced it, so no nickname from me.

Today I got an email from a fellow MS’er and she brought up the name thing and told me what she called it asking me if I had a name for mine. I answered “no” and pretty much just left it at that. Then I sat down for lunch flipping Netflix on to watch “Dexter” as I have been doing every day for the last couple of months or so (awesome show). As I watched I was still thinking about this email I had just received. Then it hit me. Dexter refers to his urge to kill as his “dark passenger” that sometimes he could control and sometimes would get the best of him. That’s it! My dark passenger! MS! My MS is my dark passenger. Sometimes I can control it and sometimes I can’t.

So I am on a ride called life that I was hoping would be just me and maybe a nice girl someday. Kids? Who knows? But now it seems that something else has hopped on along for the ride. Multiple Sclerosis. My dark passenger. I now have to ride through life with this dark passenger that I don’t want riding along with me but unfortunately is. It is on my journey with me for the long run. This uninvited passenger is doing everything it can to slow my ride down or even derail it. Most of the time I can control it, suppress it, keep it at bay, but sometimes it wins. Sometimes my dark passenger takes ahold of me forcing me to lie down in bed or stay in the hospital. Sometimes my dark passenger makes me do stupid things, forget important information, names, dates, and sometimes it causes me pain; both physical and emotional. Sometimes you may try to talk to me and think “wow, Matt is not himself today, he is being a bit of a jerk”. Well that would be my dark passenger running the show. It has greatly altered my life and now it finally has a name but that doesn’t make it any more powerful. This is the name that I gave it; I gave this evil a name because I own it. So now? Now I own it a little more.

 

29 Responses to MS: My Dark Passenger

  1. Joey says:

    Matt, you should put all your videos and experience together and enter them this next year into the Neuro Film Festival. You have a year head start https://www.americanbrainfoundation.org/go/neurofilmfestival

  2. Oh no no no, I am ashamed of the videos that are up, so old, out dated, hardly a reflection of the reality of MS. I am trying to get myself to start pumping them out again I have just been so busy with some other stuff. :p

    • Joey says:

      Matt, you have to use clips of what happened then, compared to now, and the updates this year. Your original videos tells a great story. Just add to them and you will have a great entry for 2015

  3. That is my plan I just have to DO it lol….

  4. I may have to borrow that….dark passenger,,love it!

  5. Hello Matt! I don't normally comment on your posts (i just read them, sorry for that :D) and i wouldn't have now but my sister said something that i want to share.I am pretty happy with my MS so far, i was diagnosed in july 2013 just after my birthday (i spent my bday in the hospital) and it hadn't caused too much troubles, just some balance issues and of course fatigue, and i didn't thought about a bad or evil name for my MS. I was at the hospital to talk to my neurologist for some insurance documents and she was saying to me that she has to schedule my next MRI and after that i was talking with my sister and said that i would want to see my MRI (i haven't seen any of the 3 i had so far on different locations). Now comes the funny part. She doesn't really understand why i need to be super informed and read everything about MS, she's worried i may cry a lot, and said that because they are my dalmatian spots i have the right to see them.
    I liked that very much and decided to call my lessions my little dalmatian spots 🙂

    Sorry for the long post, but lately i am very talkative and i don't personally know other people with MS. I believe i'll comment more after this.
    Hope you're feeling at least 1/2 as happy as i am

  6. I like that lol, dalmation spots. Doctors should ALWAYS go over an MRI with you, I don't get how they don't??? I have all mine on disks so I can look over them myself at home haha….. But I am glad your MS is not so aggressive that you feel the need to give it some name lol

  7. Well, my sister was trying to be ironic, but i liked it anyway.
    They gave me the interpretation of them, but it is my fault because i didn't ask for the images, they would have given them to me. Next time i'll ask for them. The hospital is a little far from where i live, and i didn't want to come back the next day after i get the results on paper for the flash drive.
    Hopefully it will last this way many years, but we'll see.

  8. Haha don't worry, just take care of yourself! Eat well, avoid junk food, try to "exercise" a bit, and find the right treatment for YOU!

  9. I'm not, things are good now, so i don't have serious reasons to worry. I try to, i'm actually on Copaxone since December and can't complain.
    I know what you mean, 'cause everybody is so different and you cant't just apply everything you read, you have to find what works for you.
    I do have a bit of an issue, i can't sleep in the past days. It is actually 1 am in my time zone, and i am still dancing in my kitchen (2 night in a row) so it's not that bad

  10. Insomnia, pretty common, I needed meds for a long time to sleep but was able to eventually train myself to sleep… That sounds weird but it's true haha.

  11. I know, but in this case it's aggraveted because my grandma is in the hospital and i'm stressed and always on the go. I take some light sleeping pills, but i sleep only 3-4 hours a night with long pauses.
    Can i add you on Facebook, so if we'll talk more, we wouldn' t do it here? 😀

  12. Conversation with my sister about the name of my MS ended something like if i am a dalmatian, that would make MS Cruella DeVille
    I' m gonna keep this in mind for when i need to use it

  13. lol interesting analogy :p

  14. I sent a message on Facebook, you haven' t received it?

  15. My personal FB or my FB page?

  16. your FB page, sorry i didn't think to ask where should i add you

  17. Lol let me check, it never alerts me there for some reason

  18. Jenny S says:

    This entry made me cry.
    I also now have an unwanted Dark Passenger.

    But, the show DEXTER is awesome! 🙂

  19. Matt, I'll be honest and say I can't imagine the journey you're on right now, but I have to say, your way with words is a gift. After reading a few of your posts, including this one, you've allowed me to gain a different perspective on MS. I recently volunteered for the Walk MS event in the Inland Empire, prior to which I had no connection or affiliation with. I clearly realized the individuals enduring this condition and those supporting them displayed certain vibes that really are admirable and inspiring. I can totally see this in your writing, especially in your mindset of owning this condition. Just wanted to say thanks for sharing this and I hope nothing but the best for you.

    • Haha I live in the IE, I find it funny that there are so many walks this time of year when it is a million degrees outside! But yeah, I only try to write in a way that will communicate a feeling, a thought, or a struggle. Thank you.

  20. Kirstie V. says:

    Hey Matt! I know this is your old blog, but I just came across this post and I had to comment because I love how you used the analogy of Dexter's Dark Passenger (such a fan of that show!) to refer to your MS! I can't speak for how you must be dealing with your "dark passenger" but in general, I think that any way that you can try to make sense of a situation is good way of coping. I think it's better to acknowledge the elephant in the room than simply ignoring or dismissing it. Everyone has their own "dark passenger(s)" and we all deal with it in different ways, for me personally, I like to surround myself with positive people that help me see my significance and worth. So, I hope that you have found that great support system as well throughout this process. Thank you for continuing to share your thoughts on your new blog! I look forward to reading more! Take care! 🙂

  21. It's a work in progress for me haha but thanks. I also wrote about this here;https://multiplesclerosis.net/living-with-ms/stubbornness-beating-my-dark-passenger/

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