The Princess and the Pain....

This Post is for all those who suffer from diseases and disorders who feel invisible. Whether the disease itself is visible or not, the person may feel invisible and this is very difficult and isolating. If you are a sufferer or know and love some one who is you may be interested in this post.

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 websitehttp://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 invisibilityand 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  

Re-Post ~ Just SAY It.....Or Not?

I have been blessed by an introverted husband and 6 introverted children out of our 8. However, this presents a challenge for a gabby girl like myself.  It literally took me years to recognize that being happy was not, as I perceived, about talking and laughing all the time.

I had a very special friend, Mary, who was herself quite introverted. She taught me well, that allowing shy children to hang onto my leg while we went to visit would ensure that they let go much sooner than if I was incessantly telling them to go play with the other children, pushing them away from me.  She was always so good at giving advice without me realizing I was being instructed.  Well, her advice worked and I learned that to let them be themselves, as different from me as that was, made them more secure, more confident and led to more good times for them.

This lesson carried over to my husband.  I learned that the very situations that exhilarated me, caused him to be acutely stressed.  People are just too fun to me. All kinds of people from all kinds of places talking about all kinds of things......yippeee.  For him that meant too much noise, too many people at one time, too much effort at trying to talk to people he didn't even know. Stress. We came to a middle ground early in our marriage with things like big events. I would go by myself or with friends since it really was just torture for him and I would spend my time worried about him or stressed that he wasn't having a good time. When we each finally accepted who we were, doing our own thing was FINE. Accepting our opposite personalities was key to being happy.

I recently read an excellent book that I recommend highly to anyone who loves an introvert. And, by the way, the word "introvert" is not necessarily the same as "shy" according to the author. The book is called Quiet : The Power of Introverts in a World that Can't Stop Talking.  It's by Susan Cain and is meticulously researched.  I learned so much about my children, my husband and all people who are not extroverts and those who are in- betweens.  It explains the strengths of introverts in a world that overly values extroverts or extrovert impostors.  Excellent read.

Here is a wonderful Ted Talk by the author regarding her book. It's wonderful.....
Susan Cain TED Talk

As to the title of this post....Just SAY It.  This is what I consistently wanted to say to the introverts in my life. However, it isn't that easy. My extroverted kids and I tend to say too much. The results many times requires an apology.  The fact that the introverts in our family cannot just spit out what they want to say when they want to say it is foreign to me. I, of course, cannot even fathom this as I am a big mouth and love to talk to anyone. However, I also find myself having to apologize not infrequently (although it's less and less as I age). Sometimes my words come out so fast they bypass my intellect completely. It's lame and I hate it. Sigh......   This is not a problem for most of my family. How nice for them.

The opposite is true in our family of introverts they all tell me; at times they have much to say but do not or cannot say it. This causes problems as you might imagine. Feeling they are not heard, that their opinion is not respected, even anger as they push down what apparently needs to come out.  It takes time for them to form their thoughts and words. BUT when they do....they are almost always eloquent, thoughtful and meaningful.

However, feeling unable to say what one wants to say is frustrating.  We cope with this on a daily basis here and I try and teach my children that it is only in communication that they might hope to get what they need or want. Also to be able to convey something meaningful.  Not an easy job folks.  It's like them asking me to be totally quiet for a week...won't happen for me.

One of the most amazing things that happens every time we have a houseful of people is after everyone leaves, our introverts who appear to have not had a very good time AT ALL, will be able to tell you about all the conversations that were going on between everyone for the whole darn day!!  They can give you the run down on everyone, their emotional state, their ups, downs, etc.  It is seriously amazing! They ALL have this ability. They have radar. They really are people people just not directly.  Very interesting.

  

Another difference in the two can be seen in decision making actions that are carried out. (I hate to generalize because there are certainly those who have mixed personalities and of course better or worse work practices.)  Many extroverts can be quite impulsive, quick, prideful. Decisions come fast and are made without forethought or consultation with others. On the other hand an introvert will ponder, think over all sides, ask other's opinions and wait until the decision has been weighed carefully before handing over an answer.  You can easily see in this situation the value of an introvert in the work setting.

There is a large percentage of Fortune 500 companies run by introverts because of their ability to delegate. They are able to be calm, quiet and watchful and see who can handle what in which situation and this is key in a successful company. That whole charismatic, big smile, big personality CEO thing is not necessary to run a successful corporation, store, family, or anything else. This is a societal lie. It is perpetuated in pre-schools, schools, camps, universities.  It is forming the self esteem of children and it isn't good.

 If a child wants to sit in a corner with a good book, this is just as valuable as the child who wants to hit a baseball out in the ballfield with the loud screaming kids. BOTH are okay.

Introverts have many qualities that were highly valued in the 19th century. This book tells the unfortunate story of how 20th century society made introversion a pathology. It is terrible really. But, the book also gives great hope and understanding regarding this personality type and it is well worth the time to read it. If you love someone who is an introvert it will give you GREAT insight into how they think, what gives them energy, pleasure, stress and the riches inside those quiet exteriors.

~Blessings~

Lisa

An article by Susan Cain the Author of the book mentioned above.

This and That and A Couple Re-Posts

I have been absent for awhile due to what else.....drum roll please.....medical mumbo-jumbo.  However, we have also had some wonderful chaos and that is a family wedding! It was just two days ago and it was lovely. Here is a picture for you.....

This is our son Michael and his lovely bride Bridget.

Anyway, in my exhausted stupor I was reading some old posts feeling sad that I had not written in such a long time, so I thought it would be nice to re~post some of my favourites until my brain starts working and I can enjoy writing as the joy and stress reliever that it is for me.

Please enjoy the following few posts.

~Many Blessings~

Lisa