The Princess and the Pain....

We have a lovely daughter who has been chosen to be the subject of the "Survivor Spotlight" and featured in the INvisible Project of the U.S. Pain Foundation.  This is a campaign creating chronic pain awareness through photography and story. Their mission is to empower, recognize and inform society on the challenges/misperceptions of pain ... while empowering those survivors who refuse to give up, who keep moving forward despite the obstacles.  Mary's story is compelling.

I want to be a nauseating Mommy braggart about Mary being chosen, but I also want to shed some light on a subject that is difficult.  The name is so appropriate.....  the INvisible Project.  Mary recently wrote about being chronically ill with several progressive and incurable disorders/diseases and she named the most difficult part as being INVISIBLE.  However, she also feels it is her call from God to suffer well, not inconvenience others, to serve instead of being served and to get herself and anyone around her to heaven.  She smiles, laughs, sings, serves....and suffers.

Invisible.  It is a more difficult word than you might imagine for those with chronic illness that cannot be seen from the outside.  At our house , learning to live with chronic illness is part of the growing up process since all of our children are affected.  Some more than others.  Ed and I make it a priority and goal that these kids learn to suffer well, do not become self centered or live in chronic self pity, but recognize the many blessings they have.  None of this is to negate the difficulty of chronic illness and pain, it stinks, but we choose instead to focus on what is positive and good since we cannot change the facts.

Our family, like many other folks with pain sits precariously on a razor's edge.  We do not want to project our "stuff" on to others, we do not want pity, we want to be independent, we do not want to stand out, yet the very things we do to cope, make us rather invisible and this is painful. This is even more profound for our boys who, by the nature of being male, never talk to others about their illnesses. If we rarely talk about the medical mumbo-jumbo then we can get away with looking relatively normal for a period of time. This, however, can cause us to feel invalidated as if the real person doesn't exist, is invisible .

Healthy people go about a regular routine without having to think. For those with pain issues it takes so much more effort, energy, planning and then paying the piper when they are done. Everything has to be thought about. That in itself is exhausting.  There is a wonderful, thought provoking  explanation  called "The Spoon Theory" written by a gal with Lupus, Christine Miserandino.  Please take the time to read it at  her website http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/ .  It will help anyone who wants to understand others with chronic illness. 

I guess I am writing this because after all these years, all the La-La-La-ing (what we call making everything lovely for everyone else), all the surgeries, bald heads, treatments, studies, needles, traveling, symptoms, medicines (more than 110 doses per day in our home) we still do not have the answers.  Do we fake it or do we share?  In what ratio?  There are folks who cannot handle hearing about medical at all and others who want all the gory details.  This makes it a challenge to La-La-La.   It is a constant balancing act.  I think it is important to make others feel comfortable and informed if they are asking. I know this is a controversial stance but I have never seen a benefit to shoving our diseases and the limitations they place on us in anyone's face. That sort of militant stance of "deal with it" is, I deeply feel, unproductive.

  Another factor for those with chronic illness, is coping with others' loss of interest in something that may take your life or that of one of your children. That makes your days very unlike theirs. When an illness is first found it is a huge deal for everyone and is most likely met with love, compassion, help, calls, cards, inquiries of health. Unfortunately when the illness is chronic, progressive, does not get "better", the newness fades away.  This is particularly difficult because you become....drum roll please....invisible.  Though this fact is acutely painful, there is no blame or fault in play here. It's just the way it IS.  Friends and family cannot maintain the level of care that was shown at the beginning of the medical journey over years and years. It's just not possible even if they care deeply.  Even as things progress and get more difficult, most folks involved become immune to the real life drama unfolding behind the scenes at home.  A new diagnosis becomes just "another" diagnosis.

Thankfully there is a wonderful, huge, world-wide, understanding community of those who suffer. The advent of the internet has been a huge blessing in this realm. To be able to connect with others who share the same diagnosis' is invaluable.  It is a place where no one is invisible if they choose to communicate. 

We liken it to living in different worlds. The one where people think you're fine and "isn't it wonderful how well you handle things"...then the other community of medical folks who "get it".  They know when you're La-La-La-ing and can see right through it.  I have several close friends who share our diagnosis who I either have never met or have seen only a few times at Ronald McDonald House. They are such a huge blessing to me and I can call them when I just cannot maintain La-La-La "normal".  I suppose we just keep our feet firmly planted in both worlds....a bit of a split personality never hurt anyone right?

The challenge then, is being diligent about not becoming resentful, and sharing just enough to re-appear from the invisibilty that weighs down upon those with chronic illness.

I find the closing of this post difficult. I do not want this to have been a negative post because we put great effort into being positive and we truly are a thankful bunch. Yet, I feel the weight of trying to describe something so....well....invisible.  I feel I have not, can not really describe this invisibility and it's inevitable difficulty. I will let the coming story and photographs of our daughter and others make all of us visible.

~Many Blessings~
Lisa