7 Choices I Make Every Day Since My Cerebrospinal Fluid Leak


I read a fantastic book many years ago that changed the course of my life. In it I read that there are two ways of being in illness: there is illness with suffering, and there is illness without suffering, and you have to choose which kind of patient you would like to be.

At the time, I thought that was a little strange, but when I first got sick with a cerebrospinal fluid leak in March of 2016, I quickly realized that I had to make that very choice.

I chose illness without suffering.

What I mean by this is that I decided I was not going to call a bunch of people and tell them how horrible this illness was and wallow in inaction.  That is not to say that I did not solicit advocates and seek advice from a few very dear people in my life. What it did mean is that I had some choices to make and I had to make them each day.

1. Choose happiness: I choose, despite my horrible headache, nausea, and other neurological symptoms, that every day I will find something to make me happy. A flower, a walk in the garden, a video to make me laugh, a special cuddle with my dogs, a text to a friend… anything that will bring me a ray of light.

2. Choose action: I did not want to spin my wheels so I inform myself and then I take action to find a way of getting answers. Yes, it is taking a long time, but I am slowly but surely getting there and not feeling that I am helpless and hopeless.

3. Look outside myself: I dedicate time every day to think about someone else who is struggling. I had three friends with cancer this year and choose to send out positive vibes to them each day. I send them texts, presents, cards, I call regularly because it does me a world of good to think of someone else and let them know they are loved.

4. Inform myself: When I am well enough I research as much as I can. My neurologist admits to not having a lot of experience with CSF leaks so I do a lot of research with very reputable sources so I can bring up-to-date information to him

5. Connect: I make sure that I connect with others outside of my four walls.  I sent out a message that I would love visits and phone calls because I feel very isolated and lonely at times. I have connected to Facebook pages, Inspire site, CSF Leak Foundation, and headache groups for support and advice. My husband can only talk about this issue for so long… it is exhausting making it through each day for him caring for me and running a household… he needs a break! (And I needed a place to talk about the same things over and over in hopes of hearing just the right thing to make it all click for me).

6. Live in Gratitude: Much like choosing happiness, I have to choose every day to highlight the things that I am grateful for. This is true of my life at any time but I have found it particularly helpful since my CSF leak. I talk and write about my gratitude so that I can remind myself, both inside and out, of all the many joys and wonders that exist in each day for me.  From tiny little moments of grace that come in the blink of an eye (like when my dog really gazes into my eyes and we each know how important we are to one another) to the really big moments of gratitude like when a family member takes the time and effort to come an visit me and we can share great laughs and intimate times to really know how things are going for one another.

7. Give Back: When I had a little bit more of a handle on things in terms of what was happening with me, the natural teacher in me came out, and I knew it was time to give back whatever I could. I started a blog to help others like me and I have reached out to organizations to open up dialogue and awareness. I am just at the beginning of this part of my journey but already I feel better for reaching beyond the bounds of my body. 

So, how will you choose to live in illness? We have no decision of whether or not we have this debilitating illness, but I believe we certainly have a choice of how we are going to live with this illness!

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