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

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