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The Hardest Thing I have Ever Done

It is quiet.  The air is still. I hear a soft pounding in my chest and my feet on the asphalt.  My heart reminds me of the task at hand: kee...

Sunday, February 9, 2014

Another One?

So, I am going to run another full marathon!  Yep!  Newport in Oregon in May.  Should be a lot of fun.  My friend Stephanie and I are going to go for a 4:30 time, too (I am speaking of this as if I actually believe it can be done).

But, that is not the reason for my title.  No.  In fact, running another marathon is just another kick to get me back to the blog, and back on the road, upping the miles and downing the carbs.  No, my reason for this title is a bit of a bitter sweet bite on the inside of the cheek of another friend receiving her diagnosis of MS.

Now, I have received some phones calls and emails from folks over the years that have received their diagnosis.  I have talked to all sorts of people from those with pretty advanced Relapse and Remitting MS (RRMS) to advanced and progressive MS.  I know kids with MS and older people, too.  Everyone is at different levels of abilities.  I even get asked questions about neurology from people who have other diagnosis, rheumatoid arthritis, strokes, epilepsy, cancer.   Sometimes I get to share my experience on interferon with hepatitis-C folks (and am grateful for their advances, I can tell you that with much enthusiasm!)  But then, here's this story.  Something different; unexpected.  Not like I ever expect to get a phone call saying "I got my spinal tap results," or "My doctor says I'm in your club." But still.  Sometimes the news is more jarring than it is at other times.

Let me back up.  Let me tell you that I am ordained to marry people and I really love doing so.

No.  Let me start somewhere else.  Let me back up even farther.

Once, when I had first moved to Oregon, I was involved in helping to plan a party.  As with many parties, we needed ice.  My sweet friend Kami worked as a waitress while she went to school to become a teacher and her restaurant had an ice machine.  We went to her work and scooped ice to our hearts' contentment.  We bonded a bit in that time; me with my awkward new-person-in-town-throwing-a-party persona and her with her accepting-of-everyone knack.  She listened as I worked through my nervousness and she reassured me that she and I were friends, not in her words but in her easy manner and sweet way.  Ask anyone.  They will all say the same.  She is kindness personified.

So, fast forward.  I have been living in Oregon for ten years and who have I known the longest, longer than anyone else?  You guessed it.  Kami.  In fact, she and her husband (whom I married--a story I started earlier but blah, blah, blah) she and Travis came to support me in the first full marathon I ran in Portland.  Here we are "carb loading" at Slappy Cakes the day before the marathon:


Kami came and stood and cheered with Dave and the girls and Travis rode his bike around Portland trying to find me "whne and where" along to route to support me.  What a great couple.

Two Years ago they welcomed Dax, their handsome little man.  He is a darling, too. Just look:


And, life has gotten on with us.  We have all grown up a little bit over the years.  Kami has become a tenured kindergarten teacher and Travis teaches sports to kids (Travis is an amazing character all in his own, with his own chronic illness that he 'handles'--and he does, too).  These people are just about as awesome a family as you could ever want to know.  And they are good and loyal and sincere friends.  I am grateful they are in my life.  It doesn't matter how much time goes between visits, when we get together it seems like no time at all has gone by.  They have a standing invitation at my house, even if it's just to use it as a hotel.  They know this.  They have only come sparingly because they are busy and responsible and also considerate. 

Naturally, when I heard from Kami about her diagnosis, she did not want to bother me.  It is just like her to not want to put me out of my way or talk about something unpleasant.  I reassured her by telling her that I keep a blog about this "for crying out loud!  The more I talk about it, the better I feel about it."  I find that has been true for many of us with this diagnosis.  We like to talk about it.

MS is such a nebulous, individual disease.  How it effects me is totally different from how it effects anyone else.  I have never met anyone who has it just like me and I do not expect I ever will.  Yet, somehow I am reassure when I speak of it or write about it or email with a new friend about it.  I like the MS Walks because I feel empowered.  I make connections with others who have MS and we all get a chance to talk about it and walk and --hell, why not-- raise some money and awareness too!

So, this conversation I had with Kami was a few months back now, early December.  It started with a text that lead to a phone call. She was super tired and I could hear her exhaustion, like a physical weight, through her voice.  She was not her usual peppy and upbeat self.  She described to me the things that I do understand, the general way that this disease gets us, the fatigue, confusion, fear.  She told me about the scan she had already had and the tests that were forthcoming.  I listened and I kept thinking to myself how unfair it was for her and Travis and Dax.  I thought about how they have already had their hurdles with Travis's diabetes and how when God is handing out chronic illness, he needs to take these things into consideration.  They have a young son.  Dax needs his mom to chase after him, to play with him, to stay up late with him when he is sick.  But then I thought about the other side of this horrible condition.  The other side is healing...

When I was diagnosed, nine years ago now, there were only three different medications available and one of them was being held back by the FDA because of issues with fatalities in Europe.  All were injectable with horrible side effects.  The one that was selected for me made me sick three times a week and gave me horrible site reactions with bruising and sores.  I woke in the night with tremors and shakes so bad that Dave would have to hold me until they passed.  I was dependent on Tylenol.  Nine years ago, there weren't the many medication available that help combat fatigue and restless legs and numbness and gait issues.  I tell you, when I walked the booths at the MS Walk in San Diego last year and spoke with the many different drug companies, I was in awe at which parts of this disease are now specifically treatable.  And they are, too.  In fact, I feel like the world of MS treatment has the right idea about drugs.  Because there are so many different facets and nuances to each and every one of those diagnosed and how we experience MS, there should be specific drugs that target each specific issue.  It makes sense that when I talk with so many people who have MS, all with different symptoms and prognosis, that we should have many different plans for healing and treatment, and now we do.  At least, that's the current trend.  It's a trend I think we will continue upon also.  Why, just in the number and kinds of medications that treat RRMS itself, I have lost count.  Some are topical and some injectable and there's even a patch.

All of the talking is working.

As I listened to this young mother, hopeful for the growth and future of her family, talk about hitting this wall, I offered her the one and only thing that I could think of that has worked for me and will continue to work: faith.  Faith in a power greater than all of us, faith in our fellows diagnosed and the immeasurable value of their experience, and faith in the healing research coming down the pike that is making advances every day.  Every day.

I wish that no one else had to receive this diagnosis.  Maybe someday, they wont.  Until then, it will take strong people like Kami and Mackenzie and Ticky and Johnny D. to keep on showing up and talking about it and letting our doctors poke us and scan us and whatever it takes.  We are going to keep looking for solutions.

There will always be another one.



Here's Kami's rad announcement picture.  So brave!