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.
C
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.
ReplyDeleteAnyway. I wish you all the best. I just had to write and tell you about the coincidence!
Toni Bernhard
www.howtobesick.com
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
ReplyDeleteU of MD is running a trial on Tysabri and SPMS. I probably should try it, tried all the rest!
ReplyDeleteHey 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
ReplyDeleteI think this is true of many things...but disease? Slippery slope.
ReplyDeleteChristie:
ReplyDeleteI'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..
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
ReplyDelete