I feel torn about starting this post.  Part of me feels like it’d be good to get things off my chest, and part of me is afraid of dredging up all the fear and worry that I’m doing an ok job of distracting myself from.  I guess there’s also a superstitious part of me that worries my writing about all of this will make it real – will make it happen.  Where on earth does that superstitious part of me come from?

Anyway, the day is almost over and sometime tomorrow we hear the results of J’s MRI.  I know I’ve mentioned on Twitter that he was having a health scare, but I kept it kind of vague.  Again, I had an irrational feeling that, by giving voice to the details, I was somehow going to call it into being.  Anyway, we’re worried that he has Multiple Sclerosis.  J’s mother has MS – a very severe form of the disease.  She’s been disabled for many years and has to live in a full care facility.  She can’t walk, or feed herself, or light any of the many cigarettes she consumes every day.  I know that J is very close to his mother and loves her dearly, and that her illness has caused him an unimaginable amount of pain.  No doubt it’s part of what makes him the kind, gentle, nurturing person he is today.

I know the fear of having MS himself has been with J for years.  He carefully packs that fear away and doesn’t ever talk about it, because he’s good at not giving rein to emotions that aren’t useful.  That kind of fear is inevitable when you have a parent with a semi-genetic disease, though (MS is a little complicated – it’s not strictly a genetic disease, and isn’t always inherited, but genetics is thought to be part of the picture along with environment and who knows what else. It supposedly makes the odds of your getting it higher.  Like IF, they still don’t know a lot).  The other confounding thing about MS is that the symptoms vary greatly by person, come and go, and can often be attributed to many other things.  It’s a really tricky disease to diagnose. They can only do that by MRI, and I guess even that’s not completely reliable.  Sounds like hell, right?  Sounds like the same sadist who designed IF designed MS, if you ask me.

So, lately J’s been experiencing odd pains in his legs.  They could just be dehydration and a lack of electrolytes.  It could be that he just needs to exercise more.  Or it could be MS.  There you go.  Either he needs to increase his intake of water and stretch more regularly, or he might slowly become disabled over the years and our lives might be changed forever.  And that’s where we are.

When I’m faced with a crisis, I go immediately into problem-solving mode.  Faced with this possibility, my early thoughts were pretty practical.  Does J have disability insurance bundled in with his life insurance? How do I ask him that question without making him angry or frightening him?  I felt like I needed to know – and that we needed to do something – before he was possibly diagnosed.  My income is paltry, and if something were to happen to his ability to work down the line what would happen to us?  We couldn’t get that kind of insurance AFTER he was diagnosed, I’m sure.  And then I was wondering, if he does have MS should we use donor sperm as well as donor eggs?  Would we want to risk passing MS on to our child?  Apparently, it is passed on to offspring more readily by men – great.)  I had to stop myself from researching the vitamins and therapies that are thought to help slow the progression of the disease.  Of course, all these practical, nuts and bolts thoughts are just the way my brain has of trying desperately to get control of the situation – of trying to avert disaster as much as possible.  That’s just what my brain does.  That’s what it did with the IF, too.

I had to hold my husband in my arms and try to comfort him as he told me that he “didn’t WANT to have MS.” He’s a man who loves to snowboard, mountain climb, and backpack in places like Tibet and India.  It broke my heart.  I wished so damn hard that I believed in a God that was watching down on us and that decides how things are going to go.  If only there was someone I could bargain with.  I instantly wanted to tell whoever was in charge that I would gladly give up having my own genetic child – or even ever giving birth at all – to make this not happen to him.  Even though I don’t believe anyone in particular is listening, I keep pleading anyway.  Please let him be ok.  Please let him be ok.  Please let him be ok.  How can I not?

So, we’re in this limbo while we wait for the results of the MRI.  It seems like limbo is the theme for our lives these days.  The one good thing that’s come of this scare is that it’s put the IF in perspective.  I don’t give a damn whether this cycle works or not.  We can use donor eggs and donor sperm.  Does a genetic link to our child matter AT ALL in the scheme of things?  It’s amazing how something that seemed so enormous suddenly seems so unimportant.  I just want my husband to be well.

Ok, now I have to dry my eyes, and pretend that I’m fine and just browsing online.  J’s pretending like everything’s ok and that he’s not really concerned, and I have to play along.

I will not be making him sick by posting this.  I don’t have that power.  How can I be so superstitious?!!

– Patience

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