Boxes

I’m cleaning house today…I am such a pack rat. I try very hard not to keep things I don’t need, however, I am very good at coming up with a need for everything. Today’s challenge is “the box” I think almost every woman I know has one of these boxes. Chely Wright even wrote this song about “the box” http://www.youtube.com/watch?v=0Ga9zMZf3LU.

It’s full of memories of every kind, the good, the bad and occasionally the embarrassing. The problem is, I don’t have just one…or even just two of these boxes, I have four. I keep every note, every letter, movie ticket, concert ticket, any ticket of any kind…I keep it. I keep menus, keys, and rocks. Bottle caps, happy meal toys, and the cheesy beads no longer reserved for Mardi Gras that show up at just about any holiday where you might end up drinking.

I live in a tiny one bedroom apartment, I have to pear this stuff down but how do you choose between memories? If I was Martha Stewart and had unlimited time and recourses these things would be in a scrap book and shadow boxes in no time. Sadly and thankfully, I am not Martha Stewart, who has that kind of time? I have ever birthday card my grandmother has given to me since the age of 12 when it occurred to me that there would come a day that she wouldn’t be writing me one. It took me a little longer to realize that same fact about my mother, meaning I have 15 birthday cards from her. I can’t even imagine how many cards and letters are in there from time spent in the hospital. People I barely even knew cared enough to send me well wishes. While some would say the fact that I barely knew them was reason enough that they could be put in the pitch pile, I find many of them more heartwarming that the ones from people I hold dear. Of course those I love will send their wishes, it is a blessing that those whom I was not as close cared to send theirs.

Like most things I am sure I am over thinking, and the actual solution is just to get an even bigger box and find clutter to eliminate in some other part of my home. I just don’t want to end up on Hoarders…you know? 

Pain is Pain, the importance of perspective.

Life isn't easy. I don't care who you are. We all have our own unique set of problems and tough times that we have to navigate our way through. It is important to me to always remember that pain is pain, everyone feels it, and your pain doesn't make someone else's pain any less.

 I do my best to never enter one of those conversations that ends up in a contest to see who's pain wins, who's pain is greater. Isn't it bad enough that there is pain in both peoples lives? The pain I deal with as an adult with CHD doesn't make a friend  who has a headaches pain any less.

It is tempting at times to want to yell and scream at those who complain of seemingly minor pains and troubles. You've just got to remember is their pain is no less because of yours. If that was the case I'd put Tylenol out of business! Have a head ache? No problem! Let me tell you about a day in my shoes...there feel better? No! Why? Because pain is pain.

It is hard to keep perspective sometimes, but I really believe that perspective is the most important thing you can have in life. . I don't have the answers, in fact I am still looking for most of them, but hopefully writing things down in this way and sharing them with others I can find that I am not alone out here in the universe.

An introduction.

How many times can a person start a blog only to abandon it? For me it seems the answer is dozens. I have started this blog over and over again and stopped because it didn't feel right. I shared too much, or I didn't share enough. This time I feel confident that I know what I want to say and who I want to say it to. Most of all I think this time I know where to start.

My name is Monica Wells. I am 30 years old (as of just a few weeks ago). I was born with Transposition of The Great Arteries (TGA), one of hundreds of forms of Congenital Heart Defects (CHD). I am a survivor and so much more as I hope this blog will show. 

I am writing to be blunt and I hope that is ok with you. In the next 5-10 years I will almost certainly be a candidate for a heart transplant. Something I narrowly avoided at the start of this year. Those are all stories for another time. 

I'd like to start with something my mother and I wrote together. Something meant to be the start of a book I still intend to write. I hope it serves as a jumping off point as we get to know one and other. This story takes place almost 15 years ago at a time when it was becoming clear that I would once again need medical intervention to deal with my chronic illness. Thanks for reading. 

Monica 

The Appointment

As told Monica Wells, 30 year old TGA survivor.

I’m fifteen years old, sitting on a table that is covered by a thin sheet of white paper, supposedly a barrier between me and whatever sickness the person who last sat here might have left for me.  It is cold and hard. The paper crinkles and shifts with every movement pointing out that I am fidgeting without the need to see that I am.  Finally I jump off the table careful to keep the gown I am wearing closed, trying to maintain at least a semblance of modesty. Whoever designed these things didn’t do so in the hope that anyone would feel better while wearing it. The material is a dull green with darker green trim, blue dots cover it and all it says to me is you’re sick.  If I wasn’t sick I wouldn’t be wearing this god-awful looking thing, freezing on this cold table in the first place.

The doctor comes in and I see his lips moving, I hear his voice filling the room but I have no idea what he’s said after he has gone. I don’t know if it is because I don’t understand what he is saying, or because I don’t want to. Either way I am in no rush to be filled in about it. I’ve heard it all before anyway. Every time it is the same thing. Nothing is ever conclusive, there are always more tests to be run, more procedures to be done, and then we’ll know more. I wonder what more there could possibly be to know. How there could possibly be another test that would tell them something more than the hundred that came before it.

The drive home with mom will include the usual pep talk, and I will let her give it.  By now I have learned that it is as much for her as it is for me. It’s the usual, “It will be all right, we’ve been through this before, you’ll be fine, and we’ll be fine.”  In a way it makes me feel better.  At least the talks don’t change. But the talks don’t change because nothing has changed. Here we are in the same old place, having the same old talk, after the same old appointment, telling us the same old thing.  

The Appointment

As told by Pam Bryan, mother of Monica a 30 year old TGA survivor.

I am tired after our long drive but anticipation keeps me on the edge of my seat.  This exam room is not so bad as I actually have room to sit my purse down on the floor and am not squeezed in among the medical equipment and file cabinets like in some places we have been.   

 I bite my lip as I watch my daughter squirming on the exam table unable to sit still.  I wonder to myself how much she knows about her condition and almost hope that she doesn’t know that much.  Sooner than we both want she will be out on her own and she will need to know it all - the good and the bad – but for now I just want her to be a kid and to be as normal as her heart will let her be.  The rest can wait until she is older.

I try to swallow the lump in my throat as I hear the knock on the door and the doctor enters the room.  I hang on every word and struggle to remember the meaning of all the medical terms he is using. I have read everything I can get my hands on about Transposition of the Great Arteries starting 15 years ago when she was born and still it is not easy to translate what he is saying.  I get out the list of questions I have tucked in my purse and ask them all, but the question that is always on my mind will remain unasked.  How long? What is the survival rate of patients with TGA?  To even ask the question is to admit that “it” could happen and I am not ready to admit that today. 

On the ride home I talk to her about all the things the doctor told us.  I give her my best pep talk and convince her and myself that everything is good and that she will be fine.  Yes, we made plans for more of the same tests and yet another procedure but that is somehow soothing to me. There are still things to be done and we will do them…she will do them, and we will move forward.

With all the heart-talk out of the way and the distance between us and the doctors and the hospital growing, we turn up the radio and she makes me laugh playing “Name that Tune” and we begin transforming into a “normal” mom and her “normal” daughter on a road-trip back home to Kansas.