You’ve Got To Be Kidding.

Fucking Awesome.

This weekend, I got a comment from a stranger on this blog. She let me know that whenever she does a Google search that includes both profanity and MS, my blog pops up.

On the one hand, there’s the tiniest amount of shame because, truthfully, my parents and grandparents did their best to encourage me to have clean language. (In high school, I was constantly getting corrected for using coarse language. When I came home from my first semester of college, my grandfather joked that I had become a sailor. In truth, I did use some variant of the word “fuck” between every phrase that came out of my mouth. It had become a verbal crutch.) On the other hand, I feel a bit of pride. It means that I’m unabashedly honest about this bitch of a disease.

Who would have thought that my use of “bad” words would drive traffic to this site? Hilarious and awesome. Or, as my friend J.R. would say, “Rich and compelling.”

I’m not gonna lie.

Last week, I received an email from Healthline asking me to participate in their campaign for MS called “You’ve Got This” where individuals living with MS can record a short video to give hope and inspiration those recently diagnosed with MS. For each video, Healthline is planning to donate $10 to the National MS Society.

I thought, long and hard, before choosing not to participate. At the end of the day, I couldn’t in good conscience tell someone who’s newly diagnosed that MS isn’t a big deal and that they’ve “got this.”

Had Healthline approached me to do this during my first year after diagnosis, I would have been all over it. Despite the MS diagnosis, I both completed a legal externship with a record label and graduated law school. I refused to let MS stop me from doing the things I wanted to do in life. I believed that nothing could stand in my way if I just tried hard enough.

But then I developed a seizure disorder, thanks to the MS.

That seizure disorder meant that I missed the first bar exam that I prepared for, and that I would fail the bar exam twice, despite my best efforts, because it’s impossible to pass that test when you’re repeatedly seizing during it. It would mean that I would not be a CA attorney or even be able to continue to live in CA. It would mean moving in with my husband’s brother in a small town that I did not like because my medical expenses had financially fucked us.

Having a seizure disorder caused by MS meant that it would be 4 full years before I even felt safe enough to try exercising (which also meant 60 pounds of weight gain). It meant not ever being able to have a career, not being able to be in a hot kitchen with sharp knives and cook safely, and not being able to perform with a band as a vocalist.

It would mean never being allowed to drive a car again, and because of that, suffering years of isolation and being trapped in the apartment while Adam went to work for us. It meant that it would take more than 2 years to come off seizure, MS, and depression medications before I could even have the opportunity to be told by an OB/GYN that I still needed to get my hypertension under control and lose 20 pounds before I could even think about pregnancy.

Having MS and seizure disorder took all of my plans for life, laughed derisively, and then took a big nasty shit on them, then looked me in the eyes and dared me to try making more plans.

So, all that being considered, I think it would be at best disingenuous for me to tell someone who just was diagnosed that they’ve “got this,” and at worst, it would be straight up lying.

A Healthy Respect For MS

Anyone who tells you, when you let them know that you’ve got MS, that “you’ve got this,” or who tries to minimize it by suggesting that it’s not a big deal, is totally blowing smoke up your ass.

Multiple Sclerosis is different for everyone who has it. Some folks are lucky enough that it’s “benign” for them. Most of us are not so lucky.

Most of us deal with many of the conditions on this list, caused entirely by MS.

  • Blurred or double vision
  • Thinking problems
  • Clumsiness or a lack of coordination
  • Loss of balance
  • Numbness, tingling, and/or burning sensations
  • Chronic pain
  • Weakness in an arm or leg
  • Muscle stiffness or spasms
  • Fatigue
  • Paralysis, most typically in the legs
  • Problems with bladder, bowel or sexual function
  • Depression and other mood disorders
  • Epilepsy

That list is great, and all, but it doesn’t tell you the larger truth behind what it means to live with MS.

Living with MS means being the embodiment of resilience. You will learn how to live in the moment, if you’re smart, because none of us knows when MS will make our lives more difficult. It means that this disease will, more than likely, knock you down, over and over and over again (sometimes literally!), and that you will have to find a way to get back up every time. It will redefine your idea of what it means to be successful, grateful, or patient.

Living with MS necessitates learning how to deal with insurance companies, just to get the coverage you need to be okay. And, unless you’re extremely wealthy, it will also cause you accept charity, usually in the form of copay assistance for medications that are priced in such a way that you may consider it punitive.

Life with MS forces you to question your faith in both God and man. For some, that means that their faith becomes stronger. Prayer and meditation have certainly been comforting for me. For others, it means leaving religious communities that are not supportive of receiving medical help. Personally, the experience has increased my faith in mankind and decreased my faith in the idea that God’s got a plan for everything. I just can’t believe that the suffering of so many people is part of a plan towards some greater good.

If anything, MS has made me painfully aware of my mortality. I am aware that at any moment, I could suddenly not be able to breathe, or my heart could stop, or any of the other functions that are controlled by neurons in the brain stem could just stop working.

MS is like a box of poisoned chocolates. You never know what you’re gonna get, but you know it’s not gonna be good.

On Maintaining Individuality

One of the biggest challenges, for me, has been fighting against isolation and loss of individuality. For more than 5 years now, any time I leave the apartment, I’m with someone else. Usually, that someone else is my husband. This has been out of necessity, for safety’s sake. I’ve made it to the mall once. I took myself to an ophthalmology appointment once. But, those 2 times are not enough. It’s kind of dangerous just wandering around town with an uncontrollable seizure disorder, but my other option involves a level of entropy to which I’m not willing to succumb.

And Adam’s not sick. He needs the freedom to go to game stores and get his geek on. He deserves the time to go to a writer’s group for his screenwriting…but he feels bad doing either of these things because it just means more time alone for me.

That means I need to find a way to stop being “forever alone.”

My challenge is to find a way to make new friends in a city that I barely know, to find hobbies that don’t seem impossible with my physical challenges, and to dare to live normally.

Step one: getting some breakfast so I can take the meds I should have taken 2 hours ago.

9 thoughts on “You’ve Got To Be Kidding.

  1. You are awesome!! Thanks for not sugar-coating your experience. I ignored the “chronicness” of this disease and I am not sorry I did. If we can find joy and hope in denial, why the fuck not? Now, I’m dealing with the realities of this. Still enjoying life and squeezing all the social out of social media I can. My best to you and thank you!

    • Haha! “squeezing all the social out of social media” <– This made me laugh out loud, because I *so* do the same thing. Facebook is my lifeline to the rest of the world. I spend *way* too much time on there.

      And I think a little bit of denial is healthy and necessary when living with MS. It's the only way I'm able to do stuff. Full-time focus is a prescription for depression.

      Best to you as well! 🙂

  2. Even with the swearing, your communicate your thoughts and feelings so well and are full of honesty. I am so proud of the strength you have. I love you with all my heart.

  3. Thank you for this post! Thank you for being real and honest. I have found that many people would rather not hear the real and honest side of having MS, but would like to hear the “It’s all going to be fine” version. Just nice to read an honest post. 🙂

    • Glad you liked it! It makes sense that people want to hear the “It’s all going to be fine” version. I mean, MS is scary as hell! Being hopeful is an important part of coping with the uncertainty caused by the disease. That being said, it can also be a powerful delusion. I’m committed to being real, so I’m always happy when I get to find out that it’s been helpful or positive for someone else. Hope you’re having a good day!

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