PPMD President Pat Furlong and Colorado FACES Coordinator Ivy Scherbarth co-blog about vulnerability and what you risk when you open your heart to people. One the one hand, we risk fraud – a subject Ivy has been dealing with intensely with her family, as of late. But at the same time, our vulnerability allows us to love and be loved. Pat and Ivy explore two perspectives on a similar idea.
 

Vulnerability
By Pat Furlong
 

Vulnerable. We all are. We all have that Achilles tendon, that place where our human-ness is exposed and tender and subject to injury. As a child growing up, my father would say ‘you wear your heart on your sleeve’, suggesting that how I felt about nearly everything was obvious and ‘out there’ ripe to be trampled.
 

At different times in our lives we are vulnerable and often it is by degree – a little more or less vulnerable. Sometimes we are vulnerable because of what we have or what we have little of. Often we are vulnerable when our defenses are down and sometimes when they are up. And there are times when we are vulnerable and only see how vulnerable we were when looking back.
 

We are vulnerable because of our connectedness, the fact that our lives connect to so many other lives and in such different ways. It is this vulnerability that gives purpose and meaning to our lives. Vulnerability is the ability to tell the story of who we are with our whole heart and in the telling of our story, we often share those times when we were most vulnerable. It is through these experiences that we learn about ourselves and others. Exposing our vulnerability involves our willingness to let go of who we think we should be and tell the story of who we are, even the bits that we hide, the insecurities of our lives, the ‘I’m not good enough, or smart enough, or thin enough…’, the parts we feel others judge.
 

So often we view vulnerability as a weakness and try as best we can to build a hard shell around our feelings. But perhaps there is another side to vulnerability. And it is in the telling of our stories, sharing our vulnerability – our fears, our struggles, our imperfections – that becomes the birthplace for belonging, for love.
 

It is the wonderful daughter, searching for answers to circumstances that are harming those she loves. It is the mother, interrogating a potential boyfriend or girlfriend. It is the dad, keeping one ear open to a teenager’s conversations. It is our sons, holding our hand when they see tears welling up and smiling. It is the friend who calls, just to listen.
 

We are all imperfect, though we are wired for struggle, and it is in the struggling that we strength and power. It is in our imperfection and our vulnerability that makes us authentic, that makes us worthy of love and being loved in return.
 

Pat Furlong is the Founder and President of Parent Project Muscular Dystrophy. Follow Pat at her blog.
 

Fraud
By Ivy Scherbarth
 

Fraud. It's a word that should strike terror in all of our hearts. We all think we're too smart, too wary, too well protected for it to touch us. How I wish it were so! In fact, crimes like fraud occur to all kinds of people regardless of their intelligence, income, social class or status.
 

Whenever we open our lives and trust another person, we expect them to be honest. We expect them to actually be who they say they are. We expect them to have good intentions, just as we do. We expect them to have the same goals for the relationship as the goals that we have. But the fact is that sometimes some people lie. They misrepresent themselves and their credentials and their goal for their relationship with us is to take advantage of our trust.
 

In my particular recent (and ongoing) experience, it was my parents who were the victims of this crime. As I have worked over the past few weeks to help my parents uncover the extent of the fraud committed against them for many years, I have been thinking about my children and the future as well.
 

When I imagine a high quality adult life with Duchenne for my son, I always imagine him employing professional caregivers as well as relying on care provided by friends and family members. I imagine him placing his trust in his doctors, nurses, therapists, personal caregivers. What the heck, in my imagination I can picture my son managing a large team of people like the feudal lords of old, nobly commanding hundreds of men and women from their loyal knights and castellans down to the cooks and servants in the great hall. (Surely every parent's thoughts go there when their son puts on a yellow felt dress-up crown and declares himself a king on his broomstick toy horse? Or maybe it's just me.)
 

The point is, a person with a disability like Duchenne has to ask for help and trust the people around him. He will have to allow many people into his life, a lot closer to his center than a person without his special needs would ever have to do. How can he ensure his safety? How can we protect our sons against fraud?
 

Here are a couple of things I've learned from trying to help my parents sort out what happened to them:

  • Always keep a written record. Contracts, billing statements, even emails detailing the expectations of the relationship. I find it hard to believe but in fact, it is Paperwork, and only Paperwork, which separates us from the beasts. Prosecution of a crime in the United States requires that law enforcement prove their case "beyond a reasonable doubt." Without a written record to support your word, law enforcement cannot always make the bad guys pay.
  • Check credentials and backgrounds. If you are allowing someone into your life and home, spend the time and money to verify that they haven't victimized someone else in the past and that they actually have the skills and education they claim to have.
  • Keep good track of your records. Remember what you expect from the relationship (and the billing!) and check that what you are actually receiving and paying for is what you intended to receive and pay for. Have a trusted friend or family member review things with you on a regular basis.
  • Keep your family and trusted friends informed about your personal business. The people who really love you actually want to hear every nitty gritty boring detail of your life! Really.
  • When all else fails, call the police. The police are there to help you. There is never any excuse for criminal behavior. It is never the fault of the victim when a crime occurs.
     

Ivy Scherbarth is a Colorado/Wyoming FACES Coordinator for PPMD. Follow Ivy at her blog: My Son, My Rain: A personal, biased account of one family living wi....

 

 

Pat Furlong, Founding President, CEO
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