Winter's coming, Ms. Jenner

Maybe today is not the day to write this article.  I am angry, very angry.  It's a rather unusual state for me as I firmly believe that volatile emotions can be fleeting experiences and I try not to get caught up in them as a permanent mental state.  So why the anger?  Why now?  I am now a wheelchair user and the reality of that has begun to hit me like a sledgehammer.  Perhaps it's self-pity, perhaps it’s a lack of strength, but with winters arrival I am finding myself in a panic.  I never gave much thought to how different the winter experience is for a wheelchair user and holy crap I am scared.

Two days of rainy cold and blustery days have driven home the point that I will be like a prisoner when the deep snow of winter falls.  I do not have a vehicle that is easily accessible.  I take my chair apart and put its pieces into the passenger seat, in the rain I am all but drenched in the process.  This also means that I sit in a saturated chair for hours till it dries.  All things I never considered when I was able-bodied.  When you add the freezing temperatures of winter and how I am going to push my chair in the snow into all of that, it’s more than a challenge than I maybe up for and that truly frightens me. 

There was this ridiculous albeit beautifully shot picture of Kylie Jenner using a wheelchair as a prop.  Was the point to say she has been “crippled” by her fame and just an empty shell as her vacant stare would imply?  As she hopped her lovely self out of the chair and walked away on her stilettos, did anyone tell her that using someone “legs” was in bad form?  Could she and her media team not have foreseen how offensive, at least it was to me, her manikin pose in a wheelchair might offend people.  How is a wheelchair a social commentary or an art form?  I struggle every day not to feel broken by this limitation in my life and they used it for sell magazines. 

I struggle to: dress, shop, make food, clean the house, and engage in any sort of social functions. I deal with loss after loss whether it is being unable to visit friends because I can’t get in their house never mind their bathrooms, to not being able to attend my beautiful niece's birthday because the facility doesn’t have to comply with ADA standards…and Jenner used a wheelchair as a prop.  To be honest I am not sure why this has me so angry, perhaps it's the frivolousness of her sexualized pose in my prison.  I generally don't feel like my chair is my prison because I know it gave me back some of the freedoms my disease has stole from me, but today and maybe for the entire winter season I will be thinking of my chair and the disease that put me there as my jailers. Jenner’s cover is callus in the least and exploitive in the worst. 

I FULLY know now that heroic people with disabilities have blazed so many trails for my family and me.  The ramps into many buildings, the changes to educational rights of the disabled student, accessible bathrooms, and accommodations in the workplace are just to name a few.  But I also know that in spite of all the hurdles overcome, we have so far to go.  It has taken years and years of hard work on behalf of some intrepid souls to actually have a person in a wheelchair included in ads, on television shows and most recently in a Broadway show.  We are not as invisible as we once were in mainstream media.  To those who think what’s the big deal, it’s just a model in a wheelchair?  I say, why not use a real wheelchair user as a model?  I say, she actually doesn’t use a wheelchair and to use it as a prop is insulting and demeaning in her portrayal of one.  I say that your prop is my freedom, my prison, and my jailer.

 I will say thank you for one thing; her cover gave me the opportunity to figure out why I was so angry.  I am not a vacant shell of a human being because I reside in a body that doesn’t function well.  I am not a broken person because I need adaptation. I am not invisible or a freak that needs to be stared at sideways as I roll by.  I am not forgettable because I am a little more work to include.  What I am is scared and afraid of being left behind, of having my spirit broken from isolation and loneliness.  What I am is a person who is searching for meaning from this new chapter in my life, for my place in the world and to know that I still have value.  I guess Ms. Jenner’s cover did provoke a reaction as all good art is apt to do, but for me the provocation came from the actually fear of living a vacuous life. Perhaps I saw reflected in her eyes my own fear.

 Winter’s coming, and I need a plan.

Super moon

The moon last night was amazing!  So inspiring in fact, I tossed and turned as I mulled over how to recreate the feeling of this phenomenon in a new piece of jewelry.   I wanted to design a bracelet so you could be the one looking at it, kinda like seeing the moon.  A necklace, while beautiful, adorns you and other people enjoy seeing it on you but you can only see most of it in a mirror.  I specifically wanted to make a bracelet to remind people to look up, and to keep life in perspective.

The full moon of June 23, 2013 was the largest moon of the year - a so-called super moon.  Scientist called it a perigree moon or a time when the moon is at its closest point in its orbit to the earth.  They claim it was 14% bigger and 30% brighter than any other full moons of 2013.  Not sure how that gets measured  or validated but one thing I can attest to was its beauty.

At first , when we went outside to see what all the fuss was about, my friend Diane and I saw nothing but a few stars.  For accuracy sake,  we did see something!  Hundreds of fireflies had decided to give us quite a show!  But that's another story for another piece of jewelry which added to my night time musings!  Okay so, back to the moon,  We decided to go closer to the River walk that runs along the Connecticut River in Agawam, Massachusetts to try and get an unobstructed view.  As soon as we left our street the moon made its entrance.  It orangey glow was beginning to peak out between the trees.  As we got closer to the river's bank, it was quite a sight to behold.

In my minds eye I feel I captured the vision before us within this bracelets design.  The moons reflection shimmered upon the water like liquidy gun metal with a bright silver band running vertically from one bank to the other.  The moon itself was like a rich  peachy and glowing amber in color.  I chose the stones to represent these images and used seed beads to capture the luminescent qualities of the moon reflection of sunlight.  The piece felt like the perfect choice to "break out" my grammy's vintage glass seed beads.  The fantastic amber opalescent cut charlotte's from the early 20's made the perfect match for the color of that moon.

It is very humbling to realize that humans, for as long as humans existed,  have all gazed upon the same moon that we were enjoying last night.  Its a shared human experience. Super moon is my interpretation of that experience.
   
Available now on our Etsy store :  https://www.etsy.com/listing/154916698/pearl-and-blue-super-moon

I can see clearly!

Most of the time, my design inspiration comes from a feeling evoked by a place I have visited or photo I have taken.  Sometimes it's a serendipitous artistic flub that inspires me, while at other times a fantastic stone calls out to me.  The latter is the case with Clarity.  The stone pendant is known as a Mexican crazy lace agate.  Its fantastical beauty is the result of how the stone is sliced to reveal the swirling and striation of color.  While most stones of this type are fiery and bold in coloring, this stone struck me for its more subtle and harmonious effect.  Its soft colors reminded me of a great day on the lake and thus inspiration for a necklace was born.

What better semi-precious stone could echo the yellows in the pendant than citrine. I love citrine for its complete versatility in jewelry making.  From a deep rich golden coloring to its barely there yellow coloring, its beauty is often revealed in the manner in which it is cut.  In this set, I used two cuts of citrine - a fancy carved melon shape and a smooth polished round.  

With that decided,  I looked again at my pendant. I was once again transported to my "day at the lake" metaphor, realizing my necklace needed grounding literally. I looked to find elements that reminded me of soil and water.  Faceted and smooth tiger eye were exactly what I was looking for as well ass chunks of softly colored blue aventurine.  Something was missing though-I needed that sparkle.  I needed to find a way to emulate the sun's effect as it hits the water making it come alive with even the briefest hint of wind. What twinkles better than foil lined gold seed beads!  And then I had to tackle the pattern...

It just happens...I put everything out in a mish-mash in front of me and with very little premeditation, the design just happens.  To me the stones  dictate where I am going with the design. It isn't a design strategy that I would normally recommend, since the failure rates are generally pretty high. However, it can be magic when it works out!

I hope you like the results of this artist's rambling.    Behold - Clarity!  or "day at the lake," which ever works for you.

              

             

btw - I needed a dragonfly,  it just fit the theme.

This piece is currently for sale on our Etsy site. Check it out!
Clarity Necklace and Earrings Set on Etsy

Beads for Batteries: Charging up Awareness

Beginning on September 16, is MitoAwareness week, so I wanted to share a little of our story, our Mito story:

Years ago I heard these 3 simple words, Turn the Prism. A professor said them to our group when I was a student nurse. She was encouraging us to change the way we looked at the people we were caring for and the way we perceived situations in our own life. Those words have stuck with me all these years and really define the way I have dealt with the ups and downs of life. The saying, When life gives lemons; make lemonade, never rang true for our family. Lemonade implied something sweet and refreshing. Living with a life-threatening disease was not so easily turned into something invigorating. It was something that we have learned to manage, find meaning in and grow from but lemonade sounded too trite to give us comfort.
Turning the Prism on my own life was a whole lot tougher than helping my children or my family. In 2001 it became imperative to see my life from a new vantage point when I felt the first serious symptoms of mitochondrial disease within myself.  This disease had touched not only my two children, but my mother, my sister and her daughter as well. So I knew the possibility for me to "crash" was a very real threat. I was to busy to let it consume my thoughts and pushed forward running here, there and everywhere. Looking back I see that running all the time, never left me with enough time for "thinking". It was my coping strategy, and it failed miserably. That is when jewelry making came into my life.
A friend said, hey do you want to help me out and design some bracelets for my fledgling company, I'll pay you"? The idea of doing something with my hands, at home that could bring in some extra cash certainly peaked my interest. I agreed and soon found myself surrounded by thousands of glass beads in every possible array of color, shape and texture. It occurred to me one day that this combining and stringing of beads was rather meditative and therapeutic. Thoughts about my life, my children, mitochondrial disease and my larger family would float into my "therapy session" like a gentle tap on the shoulder, getting me to pay attention but in a much more gentle way. It helped me to "accept" this new path I found myself on.
I find it completely ironic, that our family creed, "Turn the Prism" has crossed the line from the figurative to the literal. I began to make a necklace or two for myself, that were happily purchased right off my neck! From that a rainbow of possibilities began to swirl in my head. I voraciously taught myself all I could about the world of jewelry making, took a class, bought out Barnes and Noble section of jewelry making and found multiple internet resources. I was beginning to see a life beyond being an ICU nurse; a life where my artistic creativity was rekindled, bringing with it an unexpected satisfaction. This is the place where Prajna Jewelry Design was born, within the light shined upon a new perspective on my life. Prajna means wisdom or knowledge gained from insight and deep meditation, so it seemed fitting to name our jewelry company.

Mitochondrial disease is a disease that affects children and adults of all ages, races, and gender. More common than cystic fibrosis, mitochondrial disease is characterized by a defect in the body's ability to make energy, and causes symptoms that range from moderate to severe. Like running the body on a "low battery", mitochondrial disease affects a person's entire body and can change moment to moment, day to day. There is no cure.

This is our Mito:  Symptoms range from severe mental retardation, autism, heart problems requiring full time pacemaker, unstable blood pressure, weakness, fatigue, migraines and strokes, just to name a few.

Giving back is also a huge part of our family's life, so in keeping with our tradition, 10% of the proceeds of each piece of jewelry sold from Prajna Jewelry Design will be donated to MitoAction, a vital organization, near and dear to our hearts.  www.mitoaction.org . Please help us spread the word about what Mitochondrial disease.  Mito Awareness week runs September 16 -22, 2012 please help spread the word

http://www.etsy.com/shop/PrajnaJewelryDesign

also,  "like" us on Facebook  and spread the word

Bacon and Pork- How can you go wrong?

I tried this recipe a few weeks ago at our Sunday-Funday picnic and it was a huge hit, so when the opportunity to make it again presented itself,  I jumped at it.  The recipe is from Giada De Laurentiis from Food Network,  and it is a keeper! http://www.foodnetwork.com/recipes/giada-de-laurentiis/honey-mustard-pork-roast-with-bacon-recipe/index.html

You start with a 3-4 pound center-cut pork loin NOT a tenderloin.  This inexpensive cut of meat goes far for a family and its left overs can be become the base for empanadas, a family favorite.  Be sure all the silver skin or the shiny striated covering is removed carefully with a knife.  Next you want to make diagonal cuts into the top of the loin.  Okay onto the marinate.

In a medium bowl measure out the following ingredients:
Dijon mustard, whole grain mustard, honey, garlic, and rosemary leaves.  Be sure to chop the rosemary leaves finely so you don't have chewy leaves stuck in your teeth!
I also added just for the heck of it, Bone Suckin' Sauce Seasoning & Rub,  which I got from our local butcher shop.  I liked it because its gluten free and has no MSG in it,  and the Butcher said it was awesome.  He was right its great.

Cut butcher's twine in pieces long enough to tie around the loin and go the full length of the loin about 2 inches apart.  Tying the loin like this helps the pork to cook more evenly.  Lay the roast over the parallel pieces of twine. Gently pour marinade over the top of the pork as pictured.

massage the mixture all over top being sure to push into the diagonal cuts.  Don't forget the ends!

Lay bacon strips lengthwise on top of the loin covering the whole surface

tie the strings!

All bundled and ready to roast at 350 degrees for an hour, uncovered.  Then tent with foil for another 15 min till internal temp reads 150 or so, ultimately you want it around 160 degrees, keeping in mind when you remove it, and let it rest for 15 minutes internal temperature keeps rising!  Can you tell I have screwed that up a few times!!

 Sorry for the half picture of the loin!  It smelled so good we just dug in!

In addition to the pork we had home-made applesauce, green beans with garden tomatoes and bacon, and roasted yukon gold and sweet potatoes sprinkled with the Bone Suckin' seasonings.  Delicious!  Look for these recipes on another post, coming soon.  Enjoy!

                                                                     

We're Back

After a long hiatus,  we are ready to begin selling our jewelry again! All the pieces are handmade and one of a Kind!  It truly is wearable art.  Check us out on our etsy store; its open for business  http://blacklab01129.etsy.com./

What made you smile today?: Being grateful

What made you smile today?: Being grateful: Being more aware of  things that make us smile is the key to being more grateful and generally happy. Gratitude make us more resilient when...

all in your perspective....

I am a shit magnet. Ask anyone who knows me and they will tell you its true. If anything can go wrong it will, at the most inopportune time with the least amount of warning. If something isn't happening directly to me, its effecting someone I dearly love. It has become something of an embarrassment, which sounds completely ridiculous but assuredly true. I feel shame for some reason, as if it was some kind of personal failing on my part that negative events have occurred. Like a child who believes in magical thinking, I have wondered what I am doing wrong, was it something I thought, something I did or didn't do, was it somehow my fault?

When I first began this blog, I wrote a post about Turning the Prism. I forgot to do that. I forgot to look at things from a new perspective, to change my point of view. Today I was walking by the computer which uses a screen saver slide show of all the pictures on the computer; I am always surprised by what pops up. Today was a beautiful picture of my dog buddy who we lost a few years back. I smiled and was deeply touched to see him albeit it digitally. It hit me then that it didn't hurt so bad to see him. I felt this sweet sorrow but not that pressure, can't swallow pain in my chest. Buddy was a great but challenging companion. He was a beautiful black lab with shiny fur, regal bearing and a bit of the devil in him. Seeing him today reminded me that the love never dies and has indeed become sweeter and more poignant. Even the times he aggravated me to no end, somehow have become more humorous when viewed through the lens of time. So maybe I needed to re-look at my self-imposed title of "Shit magnet", maybe I needed to see my life through a new lens.

I am not skilled enough to look at almost losing my daughter last summer from a different point of view however. It was a horrific event that causes me to hold my breath, feel my chest tighten and my stomach clench to this very day. It is still surreal to me that it all happened, like a nightmare that still effects everything we do everyday. How does Brianna face everyday given what she has been through? How did she go to college 11 days after coming home from the ICU? How did she achieve very respectable grades given the fact her brain was on hold for 17 days while in a coma? How does she push ahead with her life, knowing she will be facing her disease again in another battle? I talked to a psychiatrist from the military, an expert of PTSD (post traumatic stress disorder) who worked with Veteran's from Iraq and Afghanistan about ways to help her cope with her nightmares and anxiety. He said, she was in a terrible position because unlike a war veteran who after being discharged won't be in a combat zone again, Brianna has to still interact with the very places that have caused her injury for the rest of her life. How does she do that? She must have found ways to cope, to compartmentalize, to move forward, to turn the prism and see something beyond what I can imagine. Being happy has become mission for her, not something that she will eventually become, but something she is actively choosing in her life. Maybe that's the gift, the gift that has come from her being born with this disease. Turn the prism to see something ahead of you and move on from what was behind you. Bring with you the good things you have learned and let go of the rest.

Almost losing Brianna, having my mother become acutely ill, losing my father, having my niece struggle with seizures, watching my brother struggle with addiction, are just a few of the past few years struggles. Some are issues that have always been there but became worse and others were life altering. I can see some of the gifts that have come from these events very clearly. My family has become closer, more connected than ever before. Maybe we always were close but it had never been tested in such a meaningful way. I learned its okay to ask for help when you can't do it alone anymore. I have come to know that I am not somehow diminished because I needed help to cope with something. Being strong means knowing when to call in reinforcement and the gift was that when I asked, my family and friends responded. Even friends of friends and strangers became angelic beings in our lives.

Every event in my life has prepared me to survive another event, I have come to know that for sure. That has been an amazing gift to me. Looking at things from the benefit of time has given me perspicacity. My appendix became infected before we left for our 25 wedding anniversary vacation, when it might have burst while we were in California. I have been like what the hell, I am a shit magnet! When is it going to end? Never. That's the truth, so I better embrace it. Nothing is permanent, nothing is guaranteed, forever doesn't exist. Change is the only thing you can count on to always be there. To be honest, I hate change. Change always seems to be negative, but in fact my infected appendix being removed is a very good thing! timing not withstanding.

My father dying has devastated me and my family, I want him back everyday. Except he was suffering, was sick and he didn't want that anymore. He chose when he had had enough, he said his good bye's to his doctor and three weeks later he was gone. That is a change I could have done without, but not at the cost of his well-being. I am blessed to have had him for 45 years, I know I was loved and he knew I loved him. He was surrounded by love, affection and when taking his last breath he extended his clenched hands up towards the ceiling in a movement that left no doubt that my father was reaching for something beyond our comprehension. It was a peaceful death. Our family was tested and we amazed even ourselves. That is the gift, the lens through which I am choosing to look at losing my dad. Maybe that's the point, it is all in our perspective. We can swim with the tides of change, maneuver around the boulders and roadblocks. It will still hurt like hell when we ram against those rough edges, but at least we are moving forward. We can also sink, try to swim against the tide, be a strong unwieldy piece of steel or to quote my son Brett, we can "be water" It is really all in your perspective.

Touching Heaven

Beautiful trip to White Mountains of New Hampshire, Thank you Family!

a life well lived

On Thursday, my father died. Those three words, my father died, are so unreal to me. How could he be gone? How could he not be just a phone call away? My head and heart just cannot take it in.

My dad was not a perfect man but he was an amazingly good man. Kind, loyal and trustworthy, devoted to his family and seriously hard-working. Arthur was the kind of man who in his late 70's refused to work the day shift at stop-n-shop with all those old people who did nothing but talk about their bowels! He liked the energy of the young people who worked nights. His wake was an amazing turn out of friends past and present, family members needing to reconnect and even a wonderful young woman who flew from California to pay her respects. It is hard to imagine that a life that was so full is condensed into the words of this brief obituary. He so generously left us the details in his own writing and we filled in the rest.

Agawam- Arthur Joseph Forgues, 86, died peacefully at home, Thursday, August 5, under the care and comfort of his loving family. Born February 26, 1924 in Springfield MA, Arthur was the son of the late Eva St. Germaine and Alphonse Leopold ...Forgues. He attended the old Springfield Technical High School. Arthur proudly served in the 3rd division of the United States Marine Corp. from 1942- 1946, fighting in the Asiatic-Pacific campaign in the battles for Guam and Saipan. He was honorably discharged after serving as a Staff Sergeant in the Marine's military police. He was employed at E.J. Pinney Construction and Home Spun Electrotype in New York for the Daily News, NY Times,and finally the Wall Street Journal in Springfield. Arthur worked as an Engineer for Amtrak and Conrail until his retirement in 1985. His last job was an associate at Stop n' Shop in Agawam, a job he really loved. Arthur had a profound love for his family and was a longtime communicant at Sacred Heart Church in Feeding Hills. Arthur leaves his beloved wife of 54 years, Lucille (Pierce) , and his four children; Thomas L. Forgues and his wife Joyce, Timothy J. Forgues, Theresa A. Couture and her husband Paul, Tina Walker and her partner Antonio Simmons, one sister Camille Marie Forgues of Longmeadow, and many nieces and nephews. He was a proud Papa to his grandchildren, Joseph, Amber, Aimee, Gina, Renee, Stephanie, and Shannon, Brett, Brianna, Whitney, Daniel, and Alexandra , also to his 15 great-grandchildren. Arthur often said that outside of his family, serving as a Marine was one of the proudest things he had ever done. The family would like to extend their thanks to Dr. Philip Glynn, Noble Visiting Nurse & Hospice Services, and Great to be Home Care, Inc. for all their care and support during this difficult time. Arthur will be missed by one and all who knew him.Visiting hours will be held Sunday, August 8, 2010 from 3-7 at Agawam Funeral Home, Main Street in Agawam, MA. Service will be held Monday at 10 a.m. Followed by service at the Veteran's Cemetery.Memorial contribution to Noble Visiting Nurse & Hospice Services.

A few days before he passed, my mother and him were talking about what happens to our energy when we pass. Rather an unusual concept for their Christian beliefs, but it was her way of telling him the end was coming. She stated she felt that she might come back some day as a deer or something like that. She said what do you think you will come back as, and he answered thoughtfully, " I just want to come back as myself"

Those words have been replayed in my head over and over. He didn't want to be anything more or less, just happy being who he was. What an amazing lesson for me. To learn to be accepting and happy with who I am.

I love you papa bear,

Your loving daughter,
The Hammer

the BIG picture about Mitochondria

Fascinating info that changes the landscape about what we think we know.

There exists a connection between this tiny but powerful organelle...and life as we know and understand it.

The mitochondria have long been understood to be the "powerhouse of the cell" but the relationship between mitochondrial function and aging, and diseases of aging, is beginning to be uncovered.

The evidence is convincing, as profiled by three leaders in the field of mitochondrial medicine.
Dr. Christoph Westphal, CEO and co-founder of Sirtris Pharma, discusses the relationship between mitochondrial disease and more common diseases, such as diabetes, Parkinson's, Alzheimer's, and cancer.

http://www.mitoaction.org/podcasts/mitochondria-the-big-picture

Prajna Chronicle: Jamie Oliver speech! so amazing

Prajna Chronicle: Jamie Oliver speech! so amazing

Jamie Oliver speech! so amazing

Jamie Oliver, a fantastic chef is bringing his food revolution to America. This is his award speech from TED. So inspiring to remember that most of our deadly diseases are treatable. I found cooking half way through my life and hope that eating and cooking healthy foods will inspire my children, friends and family to eat well and healthy. Environmental toxins in our food have been linked to some of our most devastating illnesses. I admire Jamie Oliver's mission. Let me know your thoughts

http://www.jamieoliver.com/news/jamie-wins-prestigious-ted-prize

Tips on Advocating

Just when I think I am getting a firm handle on my life, another medical
issue hits and knocks me off my feet. I can't seem to regain or maintain any
balance in my life!

When you and/or your child learn about the diagnosis of Mitochondrial Disease, it can be extremely frightening. As time goes on you will begin to develop some perspective and distance from the initial shock of your diagnosis. Bills will need to be paid, laundry done, birthday's celebrated, holidays respected - in other words life will go on. For patients or parents who are dealing with this for the first time this maybe hard to imagine but ask a "Mito" veteran and assuredly it is true. This is when the questions about, "how do I live with Mito" begin to get asked. "How do I get off this roller coaster called my life?" To some extent, the ups and downs can't be avoided,

but there are some things you can do to gain some control and lessen the disruptions caused by these ups and downs. It may take some work but it will be worth it.

The following three strategies can be effective in reducing the degree of disruption caused by the ups and downs of living with mitochondrial disease. Even doing just one of them can allow you to step off the rollercoaster or at least control the brake pedal!

Control your information flow

Control your responses

Control the quality of your life

Control your information flow

Choose how you want or need to receive non-emergency medical information. This is usually never considered but can become essential in developing quality in your life. Here is one example about a parent but adults can relate to it as well:

A mother of three children affected by Mito disease begins her day, not your ordinary day, but a Mito-ordinary day! Just when she thinks things are under control and she is getting the hang of it, the phone rings and the neurologist tells her that the EKG (electrocardiogram-a tracing on paper that shows the electrical activity of the heart) from one her children's sleep studies showed an enlarged left ventricle. The mother has 101 questions, and the neurologist cannot answer 50 of the 101 questions. He tells her he will need to call the other doctors to gather more information, and suggests she make an appointment with a cardiologist. Mom agrees, hangs up the phone and understandably panics! Her thoughts become consumed by this new information. She calls her husband and tells him what has occurred and he asks her 102 questions. Anxiety and some panic takes over and they begin to research articles, they go on-line to search "enlarged left ventricle" and on it goes...crisis mode kicks in! She forgot about the shopping she was supposed to do, oops! She forgot the therapy appointment for one of the other kids, never made it to the bank, you get the idea. This is the roller coaster of mitochondrial disease.

This is how most of us receive our medical info but it doesn't have to be this way. Quite a few people were out of the loop in this verbal exchange: the primary doctor, the metabolic specialist, the cardiologist. By creating a rather formal method of information dissemination the parents can help to control the non-emergency ups and downs that go along with having a mitochondrial disease. The goal is to give your primary doctor the opportunity to become an expert along with you in your mitochondrial disease. When you become the case manager and the only expert in your care, the primary care doctor is left out of what is their primary role. They are busy, but there are many doctors who've really want to take the initiative and learn about mitochondrial disease but have felt out of the loop. If they receive information about your abnormal EKG reading from you, it leaves them at loose ends as to what they can do to help you.

They will always be one step behind where you need them to be. The medical system is extremely challenging to navigate: the more complex the care, the more difficult the navigation. One way to have your physician become a partner with you and your family is to schedule a meeting to talk to them (this can be on the phone or it can be face-to-face). Explain to your physician that you would like receive non-emergency medical information and results through them: the who, what, where, when and how. Have a pad of paper to write down what's being told to you. This will give you something to refer back to when questions come up. Sometimes as patients or parents, we become anxious about the information that's being given to us and we may only hear one quarter to one half of what the medical profession was telling us. Having something to refer back to will help to control any anxiety you may have over thoughts that sudden pop into your head.

In the case above, the pediatrician could have spoken with the neurologist, received a copy of the test results, and contacted the metabolic specialist about what cardiologist was working with the mitochondrial clinics. They then would make their recommendations to you based on a review of the information. This allows the pediatrician to become increasingly knowledgeable about mitochondrial disease and about your child specifically. Patients and parents do become the experts in their or their child's disease. BUT they shouldn't be the only expert.

To take this from a more altruistic point of view, when your doctor becomes more knowledgeable about one child, it expands the professional's knowledge about how mitochondrial disease can impact the lives of other children that might be in their practice. Having a little-known disease, like mitochondrial disease, can be a lonely place By involving more of the professionals that are involved in the care of you and/or your child you expand the circle of support that your family will receive and, like a pebble in a pond, the ripples will extend far beyond just you and your child. If you are fortunate to have a physician/pediatrician who is willing to get involved in the care of your child, encourage them to become empowered and to become a partner in care with you. If your physician/pediatrician is not willing to work in a partnership with you, you may need to consider finding one that will.

Control your responses

When you hear new information one of the things you can ask yourself, "is anything bad happening right now.", "is there anything I can do to fix this situation right now?"

If the answer is no, then go forward with your day. If you had planned to take your child to the park, go to the park. If you had plans to go to dinner with your husband, go to dinner with your husband. If you planned to go out with friends, by all means go. This is obviously not as easy as it sounds. Over time, you will get better at this. These very steps will help you ensure that you have quality in your life.

Long-term stress can have a tremendous consequence on your own personal health, on the health of your child and the health of your family unit. In the Mito world, never underestimate the effects that psychological stress can have on a person's fatigue and symptoms. You have a choice and must choose to not function in your everyday life as if every situation was a crisis.

Control your quality of life

Another strategy that may help is to teach yourself is how to compartmentalize through visualization new and overwhelming information. As an example, begin with closing your eyes, imagine a filing cabinet, see yourself pulling open the drawer of the filing cabinet and placing inside it a visual picture of this new information, see yourself closing the filing cabinet drawer. Then imagine a to-do list entitled filing cabinet. Imagine writing down what you put in that filing cabinet. This will give your mind control over the information you receive so it won't become engulfed by the information. Of course, at some point you will need to open that filing cabinet and take the information out, look at it, study it and see how it fits in with your family and see what you have to do with it and if there are things you can do to address it. There will be times when you will be able to cope with that new information and there will be times when it needs to be put aside to be coped with at a time that you are better able to deal effectively.

Recognizing parallels, Embracing the difference; A new leadership

Sometimes I read something that reminds me to breathe easy because the mistakes of the past generations will not be repeated by the future generation of young people. The drive for more personal wealth and success is giving way to the collective good. Enjoy reading the answer to the college application question: "You have been elected the leader of a new populace. The future is in your hands. Outline a platform on environmental issues, education, and race and ethnicity".

I am THE woman, I can see the future. For me, no race or religious body is not worthy of respect. On the other hand, the world has been for too long focused on just the exterior, missing the true value of the interior person. The fact is that we are all born with the potential to be great or to rise to greatness when it is thrust upon us. Does it really matter what people look like when it comes down to the desire to achieve something great or to change something for the better? How will I bring my view of this new future to you?

First, I propose to level the playing field so that everyone has an equal chance to
achieve. How do I propose to level the playing field? You, the people, will each choose a colorful paint. Every day you must paint yourselves this color. It can be any color, as long as it is your favorite and you have a reason for "being" that color. Can you now discriminate based upon color? Can you now see the differences between people? Can you see now the cultural or the materialistic things that have been held higher than the value and morality of the person? I think not!

In my new regime, environmental issues will be nothing but child’s play. I will
educate and further enlighten the creative minds to fight back against the negative
thinkers of this world. Out of this euphoric state of mind, creative genius will appear. No problem will be impossible to solve, no great idea will be shelved because of special interest. The environment will be the “special interest” My belief is that WE ALL HAVE TO LIVE HERE, so where is the reverence for our home, the Earth. This is not magic; this is brainpower.

In my new populace, educational standards for my people will be the highest
pinnacle of human accomplishment. The educational system will realize the importance
of designing schools based upon the fact that we all don’t learn in the same way.
Everyone will have a special education plan, because we are all special not "SPED-cial".

Evaluations will take place based on the way a person learns not for what may work for the majority. Tests and compositions do not determine who is better prepared for one type of life. We need to be prepared to live diverse lives, because we are diverse people. My regime would be filled with open-mindedness in every crack of human life. We are not meant nor born to be singular creatures, but to live, love, and appreciate the beauty of which every person is capable. It is our collective job to recognize the parallels in our lives while embracing the differences.

I wish the world was even a fraction of my dreams. And in this way, I hope that
some of our collective color will rub off into the world to make it a little brighter.

I am not good at this!

Disappointment, I am not good at this. For me personally, life's ups and downs become just another lesson in impermanence especially as I get....shall I say it older? Things that are good don't last forever, actually nothing good or bad ever does. That is the beauty and curse of our reality. This is what I truly believe....except when it comes to my kids.

I almost get physically ill when they suffer the little setbacks, the normal downs of life and the big setbacks. I don't know why its so hard for me. Maybe other parents just hide it better and they feel the same as me. Maybe it is because Brett and Brie's lives are so challenging to begin with, medically speaking. Maybe others parents are more pragmatic about it, saying, "hey that just the way life goes" Personally, I get ill. Stomach churning, nauseatingly, head achy ill.

About 3 this morning I had this bizarre moment where I thought Hey maybe all their good fortune ran out in terms of maintaining their health. Maybe a person can only get so lucky in their lives, and they used theirs overcoming the medical hurdles, like open heart surgery, or metabolic crisis. In that case, all the little setbacks in life are just the price we pay for health..... Okay, it was three in the morning and Ambien was making me delusional. Like there is some magical amount of luck you are suppose to get in your life, and my kids are using theirs to maintain their health. Okay, I will take health over an easy social, academic or professional life. They however would see it differently. Which is thus the root of the problem. I hate seeing them hurt.

From the outside looking in at some other kids lives, I see they get into the colleges they want right away or school is a breeze for them or they get a cold and never miss a day of school or they get the plum roles in a show or their amps and mics never fail to work during a performance. For some kids, it all looks so easy. They all seem to get these opportunities my kids would die for. What the hell is up with that? Okay Universe, cut my kids some slack! isn't it enough that they cope with a life-threatening illness everyday as does our family, can't the other parts of life be just a weeeeee bit easier.

I sound pitiful and ridiculous and I hate it. I am not good at this. This accepting thing. This whatever will be will be thing. I am pissed off and have no idea who or what to be pissed at.....so then I just eat a cookie, okay two cookies....well sometimes the whole bag. It is Mint Milano, I cannot be held responsible!

Perhaps we need to send a better message into the universe, you know the power of positive thinking. Hey the mics will work tonight, the mics will work tonight, the mics will work tonight, and if we say it enough times, believe it will all our heart, imagine Brianna singing with her beautiful voice loud and clear and strong...it will happen. I will give it a try and report back to you!

Shay's Essay

It was some time in the afternoon. I gazed outside my kitchen window, lulled into daydreams by the blankets of white snow, tucked into every corner, and draped over every tree branch. The trees black and barren, they looked lifeless, stunted in their attempt to reach the sky. The future held spring though, and there was something under the brown bark, deep inside their core that calmly waited, made stronger by the harsh winter.

The noise barely reached me, but I picked up the phone, “Hello?” I snapped out of my trance, the reflection of snow in my eyes began to melt down my cheeks. My best friend was sick. Brianna had been diagnosed with a rare Mitochondrial disease at birth. Her doctors thought she wouldn’t live to be a year old. Others with the same disease have wheelchairs for legs and machines for lungs, but not her. Just turning 18 and looking completely normal, she struggles daily with a frustrating and inhibiting disease.

Inside every cell in the human body, Mitochondria create more 90% of the energy the body uses to grow and support life. Coming in many forms, Mitochondrial disease occurs when the mitochondria fail to supply enough energy to sustain the function of cells and organs. The disease is genetic, passed down maternally. The disease is virtually invisible, but extremely unpredictable. It’s most severe effects such as organ failure can strike almost instantly and without warning.

Challenges are the stepping-stones towards greatness, and Brianna never seems to have her feet on just one. Constantly threatened with death, imprisoned inside an unreliable vessel, she keeps on across the great river of life, each step aimed towards her dreams. Lying on a hospital bed shaking uncontrollably, wrapped up in white sheets that looked only as if they would strangle her, fever rising to 103 degrees, but still fearless.
One minute shopping with friends, the next in rigors with septsis, her disease becomes real in a matter of seconds. She dances past broken ribs though, sings through chest tubes, and laughs literally in the face of death. She still puts shows together, awes a crowd with her beautiful voice, and opens her heart to the world.

Life is filled with unpredictability, happiness, and sadness, which always threaten to hinder our abilities to be the best we can be. I find strength in Brianna’s amazing perseverance through incomprehensible hardships. Her resilience and courage inspires me to stay motivated and determined. She has taught me to find the beauty in ugly situations, to hold on to rays of sunshine in a storm, gather up and celebrate all of the laughter and color in the life around me. It’s a short thing and finding the perspective that brings out it’s magnificence is something I have found with the help of a wonderful person. I will carry the experiences she has gifted me with for the rest of my life, drawing from them hope, strength, and inspiration to live my life to the fullest and to find the inner power to persevere.

It’s easy to live in fear, the unknown as abundant as the air we breath, or the blood in our veins. When dreams and passions are hidden behind hospital walls or ER curtains, it takes more than an IV and a pacemaker to get through. Arms, veins, branches; we reach towards the sky where our dreams shine bright as the sun. There is something inside each of us, something quiet and waiting that is made stronger by the most severe winters and the earliest frosts. Something, that through the bleak always emerges and colors the bounties of a beautiful summer.

Emotional Prisoner - can you live mask-free?

What does it mean to see someone...... really see someone? I came to the belief that people see only the shell of who you are, the pretty package and judge the package not the contents. For years and years ( not an exaggeration!) our families struggle with mitochondrial disease, has mostly been a battle against an invisible foe...or at least it feels like that because of the way people respond to it. Statements like, "you look so good", the ever popular, " you would never know from looking at you, Really?" and the annoying "you seem to have enough energy to me" are enough to drive a person suffering everyday with a life-threatening disease over the edge! Perceived competence because our disability is invisible is just as irritating as perceived incompetence because someone is a wheelchair user. Everyone sees everyone through their own set of beliefs, perceptions, and previous knowledge including people with disabilities. We judge those who are "healthy" as unable to comprehend a medically fragile life. Well recent events have made me question that.

Our daughter Brianna, has struggled with Mitochondrial disease for 18 years. Her whole life. She has never known a life without pain, without risk, without challenge and she is one of the most courageous young woman I know. Her dear friend Shay, thought so too and wrote her college essay about Brianna. It was so incredibly humbling to read. No one gave a lecture to Shay about the path Brianna has walked or taught a lesson on Mitochondrial disease. She just was brave enough to step one foot into her friends shoe, and wonder what it might be like to be Brianna. That was enough for her, and the results were an essay that brought me to my knees. Brianna opened the door just a creak to let Shay peak inside her world, and Shay understood.

How can someone know you, the real you if you are not brave enough to reach out to them? Sometimes you maybe disappointed, sure, that can happen. But what if it doesn't? What if you share who you really are, the good the bad, the ugly and people do respond in ways that are loving, supportive and inclusive? Letting people into your reality is risky, you run the risk of being rejected, alienated or abused. But what if that doesn't happen?

Brianna loves to perform and was fortunate enough to be cast in the musical, "HAIR" being performing by her school. Performing is her passion in life. It is the things that makes her get out of bed in the morning despite a night racked with pain. It pushed her to continue to sing and train for a year with an unknown rib fracture. It gives her the strength to return to full on rehearsals one week after having her chest opened up to repair that fracture with a plate and 7 screws. She wants it, that's it. It is not negotiable. Having said that, she was distinctly afraid of being left out, forgotten, disenfranchised from the cast when she was absent to have this surgery. Her teacher's Mitch and Andrea along with the Director Alecia, worked their magic, and little by little gave Brianna the message that she needed to open herself up to the cast, let them in and share what was happening to her with them. She had some negative experiences in the past that gave her great trepidation about what could happen. Her trust in them was so great that she eventually did share, and the response when she got back to the cast and during her recovery was fantastic! She was embraced in a very real way and that singular event has helped her to heal her spirit.

Much of the time people with chronic diseases feel so lonely walking along a path they believe that no one could understand. While surely no one can crawl into the shell of your body and feel exactly what you are feeling, the search for commonality is something that is part of our humanness. In the book, "Sick Girl" the authors singular journey of being the oldest surviving heart transplant patient was to me the ultimate realization that wearing a mask to hide your pain from others alienates you from their affection, acceptance and love. She spoke of wearing the veil over her face at her wedding as something that allowed her to hide, literally and figuratively. She wanted everyone to see the fairytale, the beautiful bride and not the "sick girl" behind the veil. She spent her life hiding behind the outward shell of who she wanted people to see, the strong, undaunted young women who was surviving longer than anyone could have imagined. Yet inside she was angry, lonely, isolated by the same skill that had allowed her to survive. She constructed an emotional prison for herself, and was pissed that people didn't get "it".

This post in is no way saying that it is easy to live an open life. Most people just want to know the good stuff...the sunshine days. If we are brave enough to share the rainy days too, our connections with people may for the first time be deep, spiritual and uplifting. The may feel brave enough to share their story with you. Then you both can finally see each other, mask free with the warts and all.

Do you demand a fish or fish for yourself?

Sometimes when I am designing a piece of jewelry, I get into this place....I guess others would call it "the zone". It is like this quiet focus that is peaceful, productive and makes me feel very content. Whenever I have made a piece, "in the zone" it is usually pretty spectacular. My mental ramblings don't enter into this creative process. If they do and I begin to question or doubt my design or myself in anyway, I am quickly bumped out of "the zone". The design then becomes infinitely more challenging, sometimes so much so I have to leave the piece for another day and stop working. Sometimes, I never pick it up again.

In life I think its the same process. Creativity is not just related to something we can make with our hands, its the way we have to approach our lives. Every time we find solutions to a problem, we created something. Conversations we have are a very creative endeavor, i.e. The brilliant conversationalist. Helping someone to find solutions to their own challenges, or problems is creative, even if the best way to help is to do nothing but listen.

My very bright son, recently reminded me of a well known philosophy. If you give someone a fish every time they ask for it and in some cases demand it, they never learn to fish for themselves. They become stagnated in a place of dependency with no tools to create their own solutions. Perhaps teaching children how to critically think needs to be taught in conjunction with lessons on how to tap into their own innate creativity. Art and music programs have all been slashed in schools, and those creative chops are not able to be developed. The entire thought process of seeing, in your mind's eye, the vision of what you want to create, and then designing the strategies or steps necessary to see your vision come to fruition is a fundamental life skill. If we can, then we'll be teaching kids to do their own "fishing", showing them how to get "in the zone" and create lives for themselves that are pretty spectacular.

0The only cure for the stagnation in our lives, our jobs, our relationships, our art is to begin to living a life in which we create the reality we envision for ourselves. Our own ability to fish, will feed us for a lifetime.

Turning the Prism

Years ago I heard these 3 simple words, Turn the Prism. A professor said them to our group when I was a student nurse. She was encouraging us to change the way we looked at the people we were caring for and the way we perceived situations in our own life. Those words have stuck with me all these years and really define the way I have dealt with the ups and downs of life. The saying, When life gives lemons; make lemonade, never rang true for our family. Lemonade implied something sweet and refreshing. Living with a life-threatening disease was not so easily turned into something invigorating. It was something that we have learned to manage, find meaning in and grow from but lemonade sounded to trite to give us comfort.

Turning the Prism on my own life was a whole lot tougher than helping my children or my sister. In 2001 it became imperative to see my life from a new vantage point when I felt the first serious symptoms of mitochondrial disease within myself. (www.mitoaction.org) This disease had touched not only my two children, but my sister and her daughter as well. So I knew the possibility for me to "crash" was a very real threat. I was to busy to let it consume my thoughts and pushed forward running here, there and everywhere. Looking back I see that running all the time, never left me with enough time for "thinking". It was my coping strategy, and it failed miserably. That is when jewelry making came into my life.

A friend said, hey do you want to help me out and design some bracelets for my fledgling company, I'll pay you"? The idea of doing something with my hands, at home that could bring in some extra cash certainly peaked my interest. I agreed and soon found myself surrounded by thousands of glass beads in every possible array of color, shape and texture. It occurred to me one day, that this combining and stringing of beads was rather meditative and therapeutic. Thoughts about my life, my children, mitochondrial disease and my larger family would float into my "therapy session" like a gentle tap on the shoulder, getting me to pay attention but in a much more gentle way. It helped me to "accept" this new path I found myself on.

I find it completely ironic, that our family creed, "Turn the Prism" has crossed the line from the figurative to the literal. I began to make a necklace or two for myself, that were happily purchased right off my neck! From that a rainbow of possibilities began to swirl in my head. I voraciously taught myself all I could about the world of jewelry making, took a class, bought out Barnes and Noble section of jewelry making and found multiple internet resources. I was beginning to see a life beyond being an ICU nurse; a life where my artistic creativity was rekindled, bringing with it an unexpected satisfaction. This is the place where Prajna Jewelry Design was born, within the light shined upon a new perspective on my life. Prajna means wisdom, wisdom gained from life.

The world of blogging, is a bit intimidating but I will conquer my fear of this new world. Hopefully you will find it to be entertaining, uplifting and inspire you to turn the prism within your own life. Our jewelry designs are evolving as is our life, so check in to see what new pictures and ideas we've come up with.

Each piece of jewelry is named, given its own identity and will not be duplicated. It was made in the present, moved by that moment and when that moment is gone, so is the inspiration. When someone wears one of our pieces, we want them to feel the way we felt when we made them; energized, blessed and uniquely fortunate.

many blessing,

Theresa