A long, long way

This weekend, one of my oldest friends got married.  The wedding was about three hours away.  My mother rented a Mustang convertible, I packed all my various medical supplies and a couple of dresses and we drove up on Friday night.

“Can you ride with the top down?”  she asked, excited.  I thought about it.  I thought the sun might make me feel gross, and it was very hot out.  But it isn’t every day that you get to drive around in a convertible so I figured I’d give it a shot.  I put on sunscreen and sunglasses and away we went.  It was very Thelma and Louise.

I felt gross on Saturday morning, but I didn’t really care.  I loaded up on meds and tried to keep the nausea at bay.  I put on my dress and braided my hair.  I crossed my fingers that I got through the day without vomiting indiscreetly or needing epinephrine.  And I did.

The bride and her family have been close to me and mine for over twenty years.  She and I grew up together.  She and her mother both told me how glad they were that I made it.  They knew how sick I had been, and that making the trip was hard on my body.   So often people don’t understand how hard things are for us that when people do understand, it means a lot. 

It was this month last year that I started having serious bone pain.  It was this month last year that one of my doctors told me that he thought my CT scan had been misread, that my spleen looked swollen to him.  It was this month last year that I lost the semblance of health I had been holding onto. 

It was this month this year that I drove to my friend’s wedding three hours away in a convertible on a hot summer day.  It was this month this year that I went to the wedding and didn’t need epi or IV meds while I was there.  It was this month this year that I reflected on how far I had come while driving home from the White Mountains.  There has been a lot of struggle, but there have also been a lot of good days, and some really great ones that I’ll never forget. 

One of the things about being sick that healthy people don’t experience is how satisfied and accomplished you feel when you are able to do something important in spite of your illness.  I was exhausted and in a lot of pain when I got back to the hotel last night.  But I was also very happy that I had been able to be present for such an important day.  I was proud of myself and my body for pulling it together.

You don’t get a choice in being sick, but you do get a choice in where you place your energy.  A lot of the time, it goes to mundane things, cooking, shopping, laundry.  But every once in a while, I save up and blow it all on something big.  It will take a few days to get back to my baseline, and I took a lot of extra medication, but some things are worth it. 

I can live with this if I can still do the things that are worth it.  Having mast cell disease doesn’t matter when you get to be with someone you love while they have the happiest day of their life.  And when I look back, I can't deny that I have come a long, long way this year.