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.


Wednesday, June 13, 2012

Marlo Rocks!

Every time I read something written by Marlo Donato, I am reminded that she is indeed one of my MS heroes. She should have a cape, preferably one designed by Donna Karan.

She recently posted five reasons, one a day, Monday through Friday, on why companies should hire folks with multiple sclerosis. Her list is great! They range from cost effectiveness and time efficiency to delegating and sharing knowledge.

Cheers to some great articles! I, for one, appreciate the message of empowerment conveyed in each of these five posts. Thanks Marlo!

To read the articles, check out her blog here:

Ciao for now.


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