Red Herring

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“Comes The Dawn”
Veronica A. Shoffstall

After a while you learn the subtle difference
Between holding a hand and chaining a soul,
And you learn that love doesn’t mean leaning
And company doesn’t mean security,
And you begin to learn that kisses aren’t contracts
And presents aren’t promises,
And you begin to accept your defeats
With your head up and your eyes open
With the grace of a woman, not the grief of a child,
And you learn to build all your roads on today,
Because tomorrow’s ground is too uncertain for plans,
And futures have a way of falling down in mid-flight.
After a while you learn
That even sunshine burns if you get too much.
So you plant your own garden and decorate your own soul,
Instead of waiting for someone to bring you flowers.
And you learn that you really can endure…
That you really are strong,
And you really do have worth.
And you learn and learn…
With every goodbye you learn.

Social Experiment

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Do what you feel in your heart to be right for you’ll be criticized anyway. You’ll be damned if you do, and damned if you don’t.~ Eleanor Roosevelt

Well, here we are. I guess I shouldn’t be surprised. Statistically, my last blog should have resonated with many of you. I’m guessing it did, but the topic made you uncomfortable. I received exactly one comment on that post. Hmmmmm, and everyone wonders what stigma is.

Pardon my sarcasm, but obviously I’m not the ONLY one who feels stigmatized. If I were, perhaps that would explain why no one wants to admit that they struggle with the knowledge that they too are different. That without the wonders of the modern medical world, their lives would be very different. We are all quick to point fingers and happy to blame someone’s actions on their mental status. But when the rubber hits the road, support evaporates like water in the Sahara.

The news tonight covered stories about the woman in DC that ran into barricades, a man who shot his soon to be ex-wife, a veteran who is limping along and young woman who was recently traumatized in a random accident. Three of the four stories headlined with how the individuals never sought help for what appears to be mental illness. The young woman stated she could never go back into the building where the accident happened. Resilience of youth perhaps, but I suspect at some point she will be offered counseling for PTSD. So there’s our answer…blame erratic behavior on mental illness and try to comfort those who can be “saved.”

Eleanor Roosevelt really did nail it with her damned if I do, damned if I don’t statement. If I talk about mental illness, people slip off into the shadows. If I don’t talk about it, I’m as complicit as the rest of you. If I do talk about my personal issues, I become a “psych” patient. If I don’t, my doctors inadvertently do harm. If I do, my friends ignore me. If I don’t, they will never know who I am. I am the sum of my experiences, both positive and negative.

I challenge you to recognize that frailty of any kind does not make a person less human. It matters not whether it is a frailty you can obviously see or one that is invisible. And listen to your friends. Be the friend you’d like them to be for you. Don’t let the friendship evaporate because you are uncomfortable. Honestly, if I am willing to put this out into the ether, the least you can do is acknowledge that invisible disabilities do exist.

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State of Mind

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One has a greater sense of degradation after an interview with a doctor than from any human experience.~ Alice James

I bet that those who read the above can identify with the sentiment. Even the advertisements on television try to make asking a doctor questions seem like a pleasant and worthwhile experience. Medical practices use catchy phrases, colorful logos and photogenic people to entice the public to come see them. Haven’t you ever wondered why a profession that has been deemed “necessary” to modern man needs to spend so much effort on its public image?

I’ll come right out and state that I don’t believe physicians as a group desire to do harm. I believe they genuinely want to be helpful. Sure, there are a few that became physicians to improve social standing, meet someone’s expectations or perhaps lack the imagination to do anything else. I’ve met those physicians…my favorite saying is that someone had to graduate at the bottom of the class. I’ve met some that are quite compassionate and others whose bedside manner could freeze, well, you get the idea. I’ve met some who want to educate me, lay out my options. And I’ve met some that need educating. It is a mixed bag with respect to doctor-patient relationships.

But, I have found there is one thing that doctors as a group don’t handle very well. Mental illness. Just mention that you’ve got the blues and out comes the prescription pad. Try to convey how mental illness affects your daily living and you will most likely be met with many nods of the head, but no understanding. It’s an illness that has no cure, piggy-backs on other illnesses and is so stigmatized that people go to great lengths to hide any signs that might even be remotely interpreted as mental illness.

It’s time to break that stigma. It’s time to stop over and under reacting to the human condition. It’s time to realize that mental illness does not define a person. It is an illness. It isn’t simple to “fix.” It’s frustrating for everyone, especially the person going through a crisis. We need doctors to understand that in order to grasp what is ailing a person, they shouldn’t balk at our mental states because they are messy. We are people. By nature we are messy.

But doctors degrade me. As soon as my past comes up, it becomes the driving factor behind my medical treatments. They start talking to me like a toddler who needs stern guidance. They threaten to take away my decision-making rights under the guise of keeping me safe. Medical care is withheld “for my own good.” One whiff of mental illness and suddenly I’m no longer a person. Doctors act like I’m contagious and try to lock me away, to shoo me out of their office as soon as possible so they don’t “catch” it.

I am honest with my healthcare providers about my past. I want them to understand that this is part of me that I have to live with every single day. I need them to understand why some things that they suggest are not realistic for me. In response, I get labeled as “non-compliant,” “faking it” and “attention seeking” to name a few. I have those in writing from physicians I’ve just been treated by. They met me twice and decided that, despite reams of quantitative data and hours of testing, I’m “faking it.”

Maybe I should stop wearing my happy face all the time. Except then I’d be labelled with something else and probably placed in a mental health facility. This burning need (and of course, legal liability) to control my behaviors because of my mental illness is ridiculous. Ten years ago, I was in therapy. I was having a bad day and said it would be great to just go to sleep and never wake up. That resulted in police knocking on my door, performing a “welfare check” which I’m sure, had my husband not intervened, would have resulted in me being removed from my home and institutionalized.

So why do my doctors become so concerned about my mental health to the exclusion of my physical health? Is the driving need to preserve my life by any means possible only applicable when they think I might hurt myself? Do they ever consider that their actions, their fervent desire to prevent any behavior outside of “normal,” may be the reason people act abnormally? When I ask my doctors these questions, they stare at their shoes. I guess it’s easier to blame mental illness than it is to try to find answers.

We should not fear physicians. They have knowledge, but we give them far too much power. They make mistakes and based on anecdotal observation, may panic around people like me because they see themselves when they look at us. No one likes a reminder of frailty staring at them.

To those who live each day with mental illness, know that there are many others standing with you. Understand that even if others don’t admit it, statistically 3 out of every 5 people in he United States is affected by mental illness. No one can fully understand the effects of mental illness. I would tell you not to be afraid of doctors, but I can’t in good conscience state that. Until people stop placing a stigma on mental illness, we will always be at risk of being marginalized, degraded and ignored.

Today, just accept that we are all human. Help someone understand that mental status does not define a human being, Embrace your friends and family, warts and all. Support the people you know are struggling and always be kind because you don’t know what state of mind someone else may be in.

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Service

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There are places I remember
All my life, though some have changed
Some forever not for better
Some have gone and some remain
All these places have their moments
With lovers and friends I still can recall
Some are dead and some are living
In my life I’ve loved them all~ Lennon/McCartney

I attended a memorial service today. I think I was the youngest person there. We were celebrating the life of someone I first remember from 1976. This remarkable woman and her late husband took care of us when my grandfather died and my parents had to go overseas to help my grandmother. My parents were gone for three weeks. In that time, I learned that “idle hands were the devil’s work” and meatloaf actually came in a color other than confetti (my mother had a habit of mixing everything and anything into ground beef to make it stretch further). Her son became our “cousin” and was so much a part of our growing up that even though it’s been twenty years since I saw him, he’s still “Cuz.”

The sermon wasn’t anything resembling a eulogy. It was about relationships and how our human relationships don’t end with death. Rather, those bonds sustain us as we ourselves move towards death and, depending upon your beliefs, reunion with those who have gone before.

This summer has been one of reflection for me. I’ve had many hours by myself and spent some of them revisiting the places of my youth. As I drove around my old haunts, I had time to think about all the memories. My first elementary school where I met my “kindergarten husband.” The second one where I got in trouble for bringing a banned book to school. The junior high I attended is now completed fenced in like Fort Knox and is a preparatory school. My high school, which I remember as being located in the middle of a cotton field, is also fenced in and surrounded by strip malls. I guess this is the “some forever, not for better” part of the story.

But the people I’ve reconnected with are like favorite tee-shirts. A bit worn and maybe faded, but they still fit perfectly. You would think after being gone almost 25 years, things would have changed between us. Yet we greet each other as if no time has passed.

As I stood in the church today, I realized that things have changed for many people. The churches I attended as a young adult were “progressive” and “forward thinking.” I caught myself wondering if that was a good thing. I grew up in a religious tradition steeped in ritual. I found myself saying the “old school” version of the prayers. There was incense and bells (bells and smells as we kids called it). My memories are, of course, shaped by time. But even with the well-rounded edges that occur from turning them over and over in my mind they are brought into sharp focus when placed back in context.

I’ll miss my “aunt” and everything she taught me growing up. As the priest said today, she is among the last of a generation that served without questioning or seeking glory. Long before churches started offering “Alpha groups” and ways to “reconnect our youth,” there were people who attended church for the communion with others in worshipping under a common umbrella. Congregations welcomed new members and all pitched in to keep things running. I think that’s what’s been missing in my more recent forays into churches.

So, dear readers, think about your relationships. I want to be able to say I’ve loved them all and that is true for the most part. Help me change “for better” so the next generation understands that service is not a burden. Don’t let my aunt’s generation be the last that serves without seeking glory. Above all, make sure you love them all….

A Letter to My Son

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Do not go where the path may lead, go instead where there is no path and leave a trail.~ Ralph Waldo Emerson

Twenty years ago, I was a young, scared parent who had a 10 month old and found out another child was on the way. Those remaining eight months were stressful. I was sick, we moved, my husband started a new job which created the possibility of a deployment and my unborn boy was thought to be at risk for birthing complications. Yes, we knew from the multiple ultrasounds that our baby was a boy. The only easy part about this time was picking out a name.

My son arrived 19 years ago today. It was a messy delivery, ending up in an emergency C-section to deliver a baby that weighed 11 pounds, 15.6 ounces. We round it up to 12 pounds for storytelling purposes. My husband had to go to the store and buy diapers because the nursery didn’t have any to fit him.

To my It-Man:

You came into this world ready to tackle anything, literally. Doctors asked if we were ready to sign you up for a football team. You blew all the growth charts out of the water. Running around at 10 months. Charming everyone with your smile. Being taller than your sister and loving it. When you grew taller than me, you were so proud!

We faced challenges over the last 19 years, but I have seen how those challenges shaped you as a young man. I wouldn’t trade one minute of our past. Those bumps just made our lives more interesting. Sometimes, I think other parents could learn a lot from our experience. Our path was definitely not the well-travelled road that so many of your peers followed.

I hope you remember all the people who helped you become the man you are now. The camping trips, the reunions, Boy Scouts, Robotics, teachers and friends that helped guide you along the way and most of all, your family. There was an entire village that helped you reach this point. I’ve forgotten some of the names, but I’m truly grateful for their presence in your life.

As you celebrate this weekend, keep all of us with you. Look to the future, but never forget the past. It’s time for you to try out those wings we gave you a few years ago. Your tree is firmly rooted in the ground, but your path is now yours to forge. I know you can find your way back if you want or need to. Soar…take in your surroundings…enjoy the journey. Find your own path, knowing your village is extremely proud of you.

Happy birthday, It-Man.

The Friend I Thought I Knew

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Be courteous to all, but intimate with few, and let those few be well-tried before you give them your confidence.~ George Washington

I have had reason to ponder this quote recently. So far my readers know I am a medically disabled mom who uses a service dog. I’ve also disclosed some of my philosophies about parenting. I long ago learned that friends come and go for various reasons and because of those experiences, I tend to not disclose very much about myself. You see, like many of you, I’ve had friends that for whatever reason decide they no longer want to be my friends. Some of those relationships ended up being downright poisonous. Others, well, they ended in less overt painful actions.

I learned to be courteous to all from my parents. I was raised to believe that all life has value and it is up to me to find that value then cherish and nurture it in the best way I can. Sometimes, it is a fleeting moment such as giving up a seat on a crowded bus. Other times, I find myself becoming closer to someone over the long-term and taking them in confidence. However, I have learned to guard my heart and the number of people who know me very well is small. Today, I have learned yet again that, as Oprah puts it, “everyone wants to ride in the limo, but few want to ride on the bus.”

I have watched my children stumble with relationships many times. Their fair weather friends have, unfortunately, been many. I am helpless to do anything but watch as yet another human being hurts my child. Some of them do it accidentally, but others seem to thrive on personal attacks. After these train wrecks, I am left to pick up the pieces. Much like my beloved procedural novel heroes, I try to figure out why. Inevitably, I end up looking at the adult role models for the bully and discover that it is a familial trait. I have long since stopped trying to talk to other parents as it seems I’m among the minority of parents who hold themselves and their children accountable for their actions.

You may be wondering what brought on this examination of friendships. It has to do with what I perceive to be my ability to be courteous to all. Some people take my courtesy to mean they know me, what is best for me and how to “be there” for me. Dear readers, the news is that I have hundreds of friends in real life. Yet, the ones who could actually give you my address number less than a dozen. Because of my willingness to listen, people assume they know me well. Then, when I break course, they determine I was never their friend. And the rumors start. Then the painful realization that yet another person dislikes me because I didn’t fit their mold sets in.

Over and over, yet I keep trying. My kids do too, probably because they were also raised to enter into a friendship with an open mind. They have started to learn not to open their hearts readily. I find this sad because at their ages, they have experienced so much hatred for being themselves that they no longer extend an open hand to everyone who walks into their lives. They are missing the richness that a diverse group of friends brings to life. They are missing opportunities to nurture others because they have been hurt so much they feel the need to not only guard their hearts, but put a moat around themselves as well.

I ask that each of you think about the impact your words and actions have on your friends. I want you to consider whether you are causing pain to others in your life. Think about your fellow humans and how it feels when you say or do something for your own personal gain at their expense. We all have feelings. Just think before you act…if you wouldn’t like it, what makes you think someone else will?

Pay It Forward

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Patience is necessary, and one cannot reap immediately where one has sown.~ Soren Kierkegaard

I was recently part of a discussion about parenting children with special needs. One person basically came right out and said there was no way I could understand a child with Autism because I’m “just” a mother. Another commented that because my children aren’t “severely” disabled, I can’t understand what other parents are going through. I’ve already written about how I feel when people start playing the disability olympics. I struggle so much with wanting to tell people that every day is a new day and then being shot down as overly optimistic.

I am optimistic when it comes to children. They represent new opportunities for everyone. Just as each adult brings a new thread to the tapestry of life, so do our children. If you think about it, we were all children once. We learned, struggled and overcame obstacles. We became reflections of our upbringings.

It is those upbringings that parents are responsible for. It’s tough being a parent. Despite all the parenting advice out there, each kid is unique and doesn’t fit “perfectly.” I’ve had friends whose babies started sleeping through the night within weeks of birth. Other parents have had to cope with colic for over a year. Consequently, we’ve all learned to adapt to our children’s needs in order to keep our lives running more or less smoothly.

My knowledge of children with disabilities comes from both raising Autistic children, working with children who have significant disabilities in the school setting and providing advocacy assistance for families whose children have a variety of disabilities. I do not profess to have all the answers. But, I can offer advice from a variety of perspectives. The first piece of advice I always offer is that tomorrow is another day.

I have been following another blogger as her toddler with Autism grows. When I first started reading that blog, I smiled a knowing smile to myself. The frustration and love for her child were evident in her writing. Yet, I knew she had many days of discovery in her future. Life would change, sometimes for the good and sometimes for worse. She is now blogging about how cool it is to watch her child start to do tasks that her friend’s kids did a year ago. I wanted to say “I told you it would be okay” so many times, yet did not feel it was my place.

My advice to all adults out there, parents or otherwise, is to be patient. Be patient with yourselves. Be patient with your children. Be patient with the kids you have in your life. Know that parents are trying to figure out how to be parents. Don’t judge, even if your kids share a disability diagnosis. Be kind. Remember that you’re a role model for those around you. You don’t have to be perfect, just patient.

Voyages

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Most children threaten at times to run away from home. This is the only thing that keeps some parents going.~ Phyllis Diller

Parenting. The final frontier. Bravely going where no one has gone before. Well, sort of. We’ve all had parental figures in our lives. Yet, each one of us has some quirky little things that others do not. In others words, parenting is a journey we make with others, on parallel and occasionally intersecting paths.

I have 3 biological children in my life in addition to scores of others that have been passed through my hands as a teacher, Scout leader and child advocate. A couple of days ago, I was in a conversation with my youngest about the benefits of being the youngest. My point was, I made all of my parenting mistakes on her siblings. Her point was, I still make far too many mistakes.

I’ve been thinking about this a lot. Not to mention being reminded of it daily now by my youngest. I found out today that I hadn’t taught my son how to address an envelope. My oldest is still trying to figure out how to put together “outfits” of a professional style. And my youngest told me yesterday that her life would be so much easier if I’d just get a clue. Ah, yes, the grand times of parenting. Yet, it is strangely fulfilling to hear them whine and realize that if that’s all I did “wrong,” I’m pretty darn lucky.

This blog is a short one on purpose. I have more mistakes to go make…..

If it has teeth….

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My own quote today…Anything with teeth can bite you.

I mean real teeth, not metaphorical for once. I’ve had a guppy latch onto my finger. I’ve had dogs, cats and guinea pigs bite me. I’ve had children bite me by accident. I’ve had teenagers bite me on purpose. Family members, students and even a stranger have bitten me. Are all these people and animals evil for biting me?

I don’t think so. Sometimes I’ve deserved it…really, if you stick your hand in a guinea pig cage you should expect a nibble. Working with students who have severe disabilities means sometimes things happen when students are frustrated. Horseplay frequently leads to someone being bit in my house. It’s just part of what to expect.

By now, you are probably wondering why I’m talking about bites. In my social media platform I received notification about a company that denied access to a girl and her service dog (http://doggirlpitbull.blogspot.com/2013/09/famed-california-tourist-spot-bans-pit.html#). The girl has Autism, the dog is a pit bull. From the sounds of it, they were denied access because of the bully breed. My point is, anything with teeth has the capacity to bite you. It has nothing to do with the organism in specific. It’s just part of the package you have to accept when you decide to be around things with teeth.

Just in case you’re not familiar with service dogs, I’d like to correct a few statements made in the article linked above. By Federal law, service dogs are not required to be “certified” or “registered.”  Some states do require a registration tag for identification, but that is a state requirement for people who reside permanently in that state. Nor are service dogs required to be “vested” or “harnessed” for identification purposes. I’m not required to carry documentation or “paperwork” about my disabilities or my dog. By law, a business owner can ask if my dog is a service dog and does she mitigate a disability. That’s it. See http://www.ada.gov/qasrvc.htm for more specifics. The owner may also ask me to leave if my service dog is acting unruly or disrupting business (although not if her alert is to draw attention to my medical needs).

My service dog is a blue heeler mix. The breed is well-known for their high energy and herding abilities. Most people seem to be familiar with how these dogs nip at ankles to get people to move along. I get many comments about “how can you have a dog like that around children?” The answer is easy – she was trained not to nip at ankles.

Before you condemn a breed because of reputation, look who’s holding the leash. I have many friends in the service dog community that rely on bully breeds because of their ability to perform mobility work. These dogs are highly trained and are no more threatening than the person standing next to you. A poorly trained dog, whether it be a chihuahua or a Great Dane, is a poorly trained dog.

As an aside, next time you want to bite someone, remember you just might get a reputation as a vicious individual.

One day

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The best thing about the future is it comes one day at a time.~ Abraham Lincoln

This last week has been a whirlwind. With so much happening in my life and all around me, it is hard to slow down and catch a breath. I pushed myself hard this week in preparation for enforced rest that will be coming soon. I am so not looking forward to that time. But for now, I shall keep pushing every day.

I’ve met some amazing people in the last few months in addition to reconnecting with people from my past. I was thinking on the airplane Friday about how rich my life has become. And how I would never had met these people if I hadn’t been forced to slow down. Through social media, I’ve made friends with people around the globe. Every day, I now get a peek into how other people see the world. It fascinates me how many different, yet similar, perspectives my friends have. I had no idea that one of my childhood friends, whom I’ve considered an introvert for over 40 years, is actually quite the extrovert. It wasn’t until I took the time to “chat” with this person that I realize how much time had shaped us.

Jumping to greater community, I’m amazed at how people are helping each other. My state experienced enormous loss due to fire in June and is now being inundated with rain, leading to widespread flooding. I’ve lived here 11 years and watched as the community seemed to rend itself over ideological issues. On the news a few minutes ago there was a story about how people have set their differences aside and opened their homes, churches and other places of refuge to those in need. I just kept thinking it would be great if these same people could remain side by side when the regular day-to-day living conditions return.

I don’t know if George Strait is a fan of Abraham Lincoln, but it seems they share a philosophy. Strait sung “life’s not the breaths you take but the moments that take your breath away” a few years ago. Build your day around the moments. Take each day as it comes. I bet you’ll find your life in richer than you ever imagined.