Sunday, June 17, 2012

Once you're in it, it's okay

I just finished Augusten Burroughs’ latest book, “This Is How: Proven Aid in Overcoming Shyness, Molestation, Fatness, Spinsterhood, Grief, Disease, Lushery, Decrepitude & More. For Young and Old Alike”. While I do not agree with his point of view on everything, one chapter in particular stuck with me, “How to Be Sick” and in that chapter, one passage hit home:

“Once you’re in it, it’s okay.”

Whoa.  Profound. How does Mr. Burroughs know this about me?

Is this true for you?

When I first was diagnosed, I suffered a lot with imagining how bad everything was undoubtedly going to get, allowing the anxiety to swell my brain yet when I finally reached that point, it never ended up being all that bad.  It was (and is) worse in my head.

Allow me to share. When the first pang of pain came on in my left eye and the colors got all whacked out, I thought my life, my visual and artsy life, was over. I manifested in my head that I would go completely blind in that eye or, at the very least, I would not be able to enjoy colors the way I “normally” did. I propelled my anxiety into even worse things and went bonkers thinking that I’d go completely blind in both eyes. I stressed that I would not be able to photograph or color or create or read or drive or watch the sunset or see my loved ones. Well, over a year later, I’m in it and it’s not at all what I feared. The optic neuritis never turned out to be as bad as I imagined. It was so much bigger in my head. While I have some compromised vision, it’s stable and manageable and not at all the utter dread I thought it would be.

I am now within my MS and it’s okay.

Three months ago I switched to a more aggressive treatment, ditching the daily injections of Copaxone for a monthly drip of the Big T. Tysabri. I remember my fears very clearly. I allowed the anxiety in my head to get massive. I imagined that the infusions would be excruciating. I never had an IV drip before so what did I know. In my head, I saw black and blue marks on my arm. I saw myself in pain with the insertion of the IV needle. I was convinced that I would suffer in such a major way that I would need sedatives to survive. Don’t get me started on what I imagined about the side effects. I built a horror story in my head.

I had my third infusion last week and it was another without incident. These infusions are so uneventful that I want to scratch my eyes out from boredom while I sit there for two hours. Not at all what I imagined so many weeks ago.

I am now within my MS and it’s okay.

Don’t get me wrong. I do realize the seriousness of my MS and am very aware of what may (or may not) happen to me and what symptoms I may still meet. But, as Burroughs describes in his book, I do not want to accept them in advance. And, I will try to not empower them. With this, I want to greet my new symptoms waiting to meet me. “Well, you’re new around here and I will adjust to you and then you will no longer be new but just familiar.” It won’t be long after that I say again...

I am now within my MS and it’s okay.


Is this true for you, this notion of building things up to be bigger in your head rather than how it turns out to be? I would love to hear your stories.

Hope you’re well.



  1. I'm just saying hello. Your post showed up in my In Box because I have a Google Alert set for the phrase "how to be sick." That's because I've written a book by the title. If you don't know about it, I thought I'd just let you know how much it's helped so many people.

    Anyway. I wish you all the best. I just had to write and tell you about the coincidence!

    Toni Bernhard

  2. Hi Toni! I know who you are! In fact, your book is on my reading list right here on this blog (check out the section "MS Books"). Small world. Thanks so much for stopping by and thanks for the good wishes. Best, Christie

  3. U of MD is running a trial on Tysabri and SPMS. I probably should try it, tried all the rest!

  4. Hey Andy! Thanks so much for stopping by. It's nice to meet you. I have no idea how Tysabri works with SPMS but it is certainly worth exploring with your neuro. Good luck. Best, Christie

  5. I think this is true of many things...but disease? Slippery slope.

  6. Christie:
    I'm so glad that I happened upon your blog today while searching "how to get out of your own head" I have a heart rythym disorder that I am in the midst of trying to figure out. It is causing me so much grief and anxiety.I can't even work because I'm so anxious. I try and remind myself that there are people that have to face life threatening diseases everyday and I should shake my anxiety and move on...Its not that easy. Your blog gives me inspiration because I think that what I am so scared of is the UN known.. I hope that you are feeling good and thanks for sharing your story..

  7. Hey Sara. So glad to "meet" you. I agree, anxiety is not that easy to shake off and it can be so frustrating! I'm glad this blog helps. Feel free to jot me a note anytime and I hope you are feeling good too. Best, Christie


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