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.

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.