litany against fear

Fear is a funny thing.

Since I am, truth be told, a big nerd, the first thing that comes to mind when I hear or see or write the word fear is a passage from Frank Herbert‘s “Dune.” If you’ve read the book, I’m sure you know the one I’m referring to:

I must not fear. Fear is the mind-killer. Fear is the little-death that brings total obliteration. I will face my fear. I will permit it to pass over me and through me. And when it has gone past I will turn the inner eye to see its path. Where the fear has gone there will be nothing. Only I will remain.

I won’t lie: Fear is a big part of my life with chronic illness. A lot of what I’m dealing with is unknown: How will I react to [insert medication here]? Will it help me, do nothing, hurt me, or some combination of the three? Is how I’m feeling right now my new normal? Will I ever go into remission? For how long? Will I get worse? Will there be better treatments or, dare I say it, a cure in my lifetime?

The answer to all of those things: I don’t know. And, to be honest, that really bothered me for a long time; in some ways, it probably always will. But nothing is guaranteed for anyone. No one can say for certainty what the next year, next month or even next minute will look like.

But for all of that, I don’t think fear is necessarily a bad thing; without fear, there would be no opportunities for courage. Chronic illness, like fear, need not take away our hopes, loves, dreams.We can be brave and still chase down what we want. Sure, it might look a bit different than we’d hoped, but we can get there. And that realisation—that I can still expect great things from myself—that was huge. Giant, even. And so very precious.

I learned that courage was not the absence of fear, but the triumph over it. The brave man is not he who does not feel afraid, but he who conquers that fear.
—Nelson Mandela

everything will never be ok

My recent birthday was an anniversary of sorts. My 21st birthday five years ago was the last one without chronic disease. I guess that’s kind of a morbid anniversary, but it’s there nonetheless. Five years seems like a long time to be sick, and it is. Five years is the difference in being and undergrad and working in the “real world.” It’s the difference in being happily single and happily married. It’s the difference in knowing I wanted to be a journalist and realising that it’s not all it’s cracked up to be.

But, looked at another way, it’s not very long at all. It’s taken me almost all of these past five years to come to terms with the fact that chronic illness means forever. That, unless something changes over the course of my lifetime, I will have psoriatic arthritis and psoriasis for the rest of my life. If the average lifespan is 77 years and I’m 26, I have (God willing) at least 51 years left if I hit the average. In that span, five years doesn’t seem like all that many.

In the last five years, I’ve accomplished quite a bit and experienced many changes — getting married, moving eight (!!) times, getting two degrees, adopting a dog and then a cat, coming out of remission, the ups and downs of trying new drugs — and I expect the next five years will hold so many things I can’t see now. I guess the point is this: Life doesn’t stop — for me, for my loved ones, for the rest of the world — because I got some bad news. It may have taken me most of the past five years to accept that things will be different for me from now on, but I don’t think that means giving up. I will live life with as much gusto as I can manage — or fake — for as long as I can. I’ll keep trying and re-trying different medications until I find the combination that works best for me. I’ll take care of my physical body — with exercise and good food — as well as my spiritual life. I will keep experiencing
the things that make life so full and good: the laughter of children, curling up with a good book, seeing the beauty in things great and small, the sound of my husband’s voice, the joy with which my little pup Otis takes in everything and so much more.

I am lucky and blessed in so many ways. It would be a shame for me to dwell so much on the negative — on what I don’t have — instead of loving what I do. Lindsay posted this great quote that sums up so much of what I’m feeling that it seems right to end with it:

The psychological war with illness is fought on two fronts: on the battlefield of the mind and in the depths of the heart. Emotional strength must be learned. I am a better person for that struggle. Attitude is a weapon of choice, endlessly worked. … Self-pity is a poison. There is no time. I need a future and refuse to become a victim. Too often we become oblivious to our own prisons, taking the bars and high walls for granted. Sometimes we construct them ourselves, and the barbed wire goes up even higher. Too many of the limitations placed on us are an extension of our own timidity.
– Richard Cohen

breakdown, go ahead and give it to me

The newest edition of the Chronic Babe blog carnival is up! Here are some of my favourites: