The Pain House; Chronic Illnesses and Family Life with Marfan Syndrome

As a young child I pledged to myself I'd never talk about how sick I might be.  Listening to older people discuss their ailments was revolting and I'd never be a part of such conversations for many reasons.  Life was not supposed to be about pain.

We are going to start having fun once more - no more 'pain house' #Marfan

Fast forward to the late 1990s.

Judy and I were great outdoor adventure parents to our kids.  Hiking in the deepest of Florida's swamps, our kids stepped on the tail of six foot timber rattlesnakes, ran from charging boars and hunkered down in the canoe as ten foot alligators sailed overhead.  We made sure their home-school science classes were true hands on experiences.

Yes, flying alligators and the story is worth briefly telling.  One day, Judy, I and Jincy and Ruairi were canoeing up in the wild, wild St. Marks National Wildlife Refuge near Live Oak Island, Florida.  Ruairi was two and a half years old, Jincy four at the time.  Wakulla Beach was our launch site and after paddling out in Apalachee Bay for a bit we made our way up Goose Creek several miles.

Goose Creek is pure wilderness with high alluvial banks of sand and oyster shells along the shores, some as high as ten or so feet above the surface of the brackish water. Mullet swim up the creek to the big freshwater headwaters spring.  Some days the spring is filled with millions of mullet, a haven for the big hungry gators living in the adjacent swamp.  With the mullet come the mullet fishermen.

We heard the loud airboat way before the driver saw us and Judy turned to look at me as if to say 'he's going awfully fast'.  Jincy and Ruairi had their life jackets on as always.  Judy and I paddled as hard as we could to bring our canoe up against the bank under a high sand ridge where, unbeknownst to us, a very large alligator was sunning.

If you've ever heard an airboat you know how loud and startling they can be.

As the fisherman spun around the bend in the creek, barely forty feet from us the commotion startled not only us but the big gator just above our heads.

It happened fast but the memories are so clear.  One second the airboat to our left was churning water, the next second a long torpedo shaped creature jumped off the bank above us, sailing inches over our children's heads, splashing into the water adjacent the canoe.

The airboat kept going, the operator not even noticing us.  The alligator swam off, scared to death.  Jincy and Ruairi sat still, knowing their Mom and Dad were always an adventure a minute and maybe this flying alligator was not really that much out of the ordinary.  Fortunately we made it back to the safety of Wakulla Beach later that day.

But something since has changed.

No longer are we the adventuresome parents we used to be.  Sure time has passed.  Jincy and Ruairi are in their late teens today.

Sitting on the lanai yesterday, Judy and I were discussing our chronic illnesses, my dissection and Marfan issues and her IC problems, and she looked over to me.

'This is a pain house', she said.

Her comment threw me for a loop.  And now I fear I've become what I pledged never to be.

Tonight I wondered how dismal, bleak and gloomy the on-going conversation about pain and chronic illnesses must be for our children, Jincy and Ruairi.

What am I doing to our kids?  What are Judy and I doing to ourselves by allowing third and fourth parties, the party of chronic Marfan pain and the party of chronic IC, to be in our life all the time?

Tonight I could not sleep much thinking about our house and how it had become a 'pain house'.

So I am making a new pledge, one this time I am going to try and keep.  Our house is going to be known as a 'loving,  fun and safe home', not a 'pain house'.

For starters I am not going to speak about my chronic pain or debilitation inside the house anymore.  If I want to talk in a gloomy manner then I will go outside to do it.

For me this will be a challenge because I will now have to think about something new to talk about at dinner, in the living room, in the bedroom and on the phone.

I am sure there will be other steps to take along the way but I was different before and I can be different again.

This is not to invalidate our pain.  I acknowledge our very difficult challenges.  Leaving our children with an example of how to make the best of any situation would be a good way to ultimately be remembered.

Wow!  Marfan life is a challenge.  Being a smart parent is even more challenging.