Strength in Diversity

It is time for parents to teach young people early on that in diversity there is beauty and there is strength.~ Maya Angelou

I had an interesting experience today. Someone was reviewing my resume and commented on how many things I’ve been involved with over the years. Also noted was the duration of time I’ve committed to various interests. I know that everyone’s interests change over time, but apparently my pattern doesn’t fit what this individual felt was average.

It was an odd feeling to have my life dissected this way. Trying to find a way to explain why some causes are nearer and dearer than others. I thought that I was just going with the ebb and flow of life. Apparently, I’m not. I’ve always been an avid reader and continue to read 3-7 books per week. I go though phases of genres, but you will rarely find me without a book nearby. I’m a professional student, pursuing knowledge just for the sake of knowing. I take up the banner of many causes.

I won’t dismiss that I share Autistic traits with my children. I don’t obsess over topics to the point of excluding other activities, but I do want to know as much as possible about my current interests. My knowledge is far from encyclopedic as I forget things when they are no longer useful. But, the reviewer though it odd that I can retrieve esoteric information when prompted. I feel like a science project right now.

At what point do we earn the label of “abnormal?” I really want to know how many people it takes to make that determination. I frequently read articles written by adults with Autism that they are tired of being told how weird they are or how they feel “abnormal” because of the way people treat them. After today, I can honestly say I relate.

We are so busy trying to label and containerized each person that we are forgetting that our differences are what make us diverse. This diversity is our creative force. It’s what generates new ideas, breaks new social ground and pushes each of us to be better people. Instead of fussing over our differences, let’s embrace them and use our collective strength to progress towards greater humantity.

Wake up!

All life is an experiment. The more experiments you make the better.~ Ralph Waldo Emerson

Today is, of course, a brand new day. An opportunity to “be all I can be” and to “seize the day.” I’m sure if I gave it more thought I cold come up with a whole string of clichés that have been used over the years to tell people to live in the present.

This week has been crazy busy so far. I’ve been helping families who have children in the public school system. These families are fighting for their children’s right to attend school unharrassed. To be engaged and included in activities. To have the same opportunities as their peers. Wow! It sounds like I just stepped back 50 years in time.

And it feels like it some days too. These children are affected by disabilities. Federal law mandates they be provided with a free and appropriate public education. The sticking point seems to be “appropriate.” Some schools deem that just allowing kids with disabilities to attend “their” school is sufficient. Other schools go above and beyond to meet the student’s needs. It’s a broad a spectrum as any disability.

My daughter told me last night that in one of her classes, students with significant needs are brought to class. The teacher makes a point of telling the group “Good Morning Special Friends” and then proceeds to have every student walk over and greet each of the “Special Friends.” My daughter is in high school. I know she would be mortified if someone called attention to her in this fashion. Why does this teacher insist on singling out the students with disabilities?

It’s most likely not mean spirited. It’s probably lack of awareness and assumptions. That doesn’t change the fact that it’s wrong. It’s legally wrong because the student’s right to education privacy, in this case being openly “outed” as having disabilities, is being violated. It’s also morally wrong. The founding fathers of the United States proclaimed that, at least in America, all men are created equal. We’ve fought wars of this ideal. We’ve been forced to open our minds and let go of long-held beliefs about various things. Now, we need to let go of segregating and labeling people with disabilities.

Yes, all of us. Stop seeing the wheelchair and start seeing the person. Stop whining about people parking in handicapped spots who seem to be “okay.” Stop assuming that a person who talks slower or not at all isn’t capable of communication. Stop believing that someone who is different from you is less than you.

It’s hard to let go of long-held beliefs. It’s been about 40 years since mainstreaming became law in the schools, yet “teams” still insist on separate classrooms for students with disabilities. It’s shouldn’t be about money, pride or personal beliefs. It’s about human beings. It’s about seeing beyond how something affects you and realizing that the effect on someone else is far greater than imagined.

Remembrance Day

In Flanders Field

In Flanders fields the poppies blow
Between the crosses, row on row,
That mark our place; and in the sky
The larks, still bravely singing, fly
Scarce heard amid the guns below.

We are the Dead. Short days ago
We lived, felt dawn, saw sunset glow,
Loved and were loved, and now we lie,
In Flanders fields.

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.
If ye break faith with us who die
We shall not sleep, though poppies grow
In Flanders fields.

John McCrae

Those People!

I’d agree with you, but then we’d both be wrong.~ Unknown

Have you ever met a person who just has to be right about everything? I’ve met quite a few, myself included. I guess it’s human nature to want to always “win” a discussion. To have the last word in an argument. But what happens when someone is so completely sure they have the only opinion that nothing else matters?

Some context here. I’ve been diagnosed with a disease that shows up in Rare Disease databases. Still in the process of confirming it and coming up with a lifelong plan for managing it. I have three other major diagnosis that must be managed as well. So, four biggies plus all the little stuff that humanity experiences. As you can imagine, the testing and doctor visits that led up to this have involved a number of personalities. Some were overbearing, some exceptionally timid. Some had nothing to contribute, others had some great theories. When chasing zebras, it’s best to remember that the hoofbeats make a different sound than expected. And then ,there was the doctor today.

Oh this one was a beauty. Hadn’t read my file until it was opened on the computer in my presence. Didn’t know my name, my medical history and had not even become familiar with why I was there. The file was read for 3-5 minutes and then the doctor launched into all the ways I could change my life. When I mentioned that x-condition wasn’t compatible with her suggestion, the answer was “what does it matter?” When I had processed a chunk of information and asked a question, I was told “don’t interrupt MY thoughts.” Ummmm, what about me? Isn’t this visit about me?

Not to be crass, but not only does this specialist charge my insurance $600 per visit, It cost me about $500 to come here this time. And I wasn’t even allowed to ask questions to figure out how to use the information being provided. It was literally do as I say or else. Well, I’m taking the or else. While some useful suggestions came out of the conversation, most of it was not applicable. It was a practiced speech, obviously recited so often that questions threw it off.

So I guess we’re both wrong. I agreed with the doctor just to stop the firehose of relatively useless information and being chided for not welcoming the doctor’s manna from heaven. The doctor was right from the start because as far as they were concerned, I’m an idiot who requires strict supervision, The doctor’s parting shot as we walked out was “I know you’ll do what you want anyway so why am I wasting my time?”

I honestly feel sorry for the doctor. There was an opportunity lost today. An opportunity to make a difference in someone’s life. But due to arrogance and poor presentation, the information is lost.

The lesson for all of us is to remember that regardless of how you say it, when your past catches up with you it’s not pretty. You don’t have to win. You don’t have to be superior. Just open your mind, see the potential and work with it. We are all students and we are all teachers. Recognize the time and place for what needs to happen and your past won’t run quite as fast to catch up with you.

Morality of Medicine

Never be bullied into silence. Never allow yourself to be made a victim. Accept no one’s definition of your life; define yourself.~ Harvey Fierstein

I think this quote is supposed to be motivational. Something about not letting others choose your destiny. About making your life about you. I’m not sure if Mr. Fierstein would approve of my selection for this piece, but if you put things in the public eye, you have to expect that it may be used differently than intended.

For me, this quote is another way of stating my currently rallying cry. I am a person, not a policy. Now I have been diagnosed with a rare disease, that cry becomes even more important. I have no desire to become a victim of my disease. In order to prevent that, I must now convince the powers that be that my life is worth saving.

It’s hard when doctors and “professionals” have so much control over my life. I know for a fact that none of them have taken even one step in my shoes. When the numbers say that 1 in 50,000 people across the globe have the same disease as I do, the odds that even one of my doctors has experience with what is now my life is miniscule. Throw in a few other more common ailments and the “professionals” really have no idea.

I don’t fault them for not possessing the knowledge to care for me. I do begrudge them their smug righteousness that they know what is best for me. Their desire to “do what’s best” for me without regard for how I feel is beyond aggravating. I greatly dislike the imposition of their morals on my life. All because they went to medical school.

Right now, I’m having difficulty with the way personal beliefs are infused in medical care. No, I don’t want a robot who only follows the rules. I want a compassionate person who respects my beliefs while providing my medical care. Who understands that I am the one who will live with decisions. While they may experience fleeting feelings such as success or failure, I must get up each day with the knowledge that a decision helped or hurt me. I want a doctor who recognizes that their job is to provide me with information and options and then accept my decision.

I know that’s too much to ask for. Government is so embedded in healthcare that we no longer have a say in our treatment. What pieces government hasn’t touched, morality has. Between the two, finding an individual who isn’t influenced by either is a lost cause. My decisions are no longer relevant nor considered. I’m a layperson who is theoretically incapable of providing input in medical decisions. I feel helpless.

But I refuse to become a victim of this system. I will advocate, or bully if needed, to get the medical care I need under my terms. I won’t be held hostage by other people’s ideas about the sacredness of life, of who gets to live under what circumstances. There is no “que sera” ending. It’s time for everyone to stand up and loudly declare that they are people, not policies.

Chasing Zebras

Medicine is a science of uncertainty and an art of probability.~ William Osler

Anyone who has a chronic illness can tell you that reaching that diagnosis was a long journey. Even the diseases doctors know the most about take a winding path to diagnosis. Imagine spending almost half your life trying to figure out what’s wrong with you. Being told it’s psychosomatic. Having doctors shake their heads and announce there’s nothing wrong with you.

This is my life. Fifteen years ago I had a doctor tell me that I needed to see a doctor who specialized in finding “zebras,” or odd diseases. For various reasons, that didn’t happen until about 6 months ago. My primary care doctor finally agreed he had met his match and sent me to a major medical center. I’ve been at this center for 5 months now, shuffling from one specialty to the next. Learning all about insurance and bureaucracy. Oh, and the bureaucracy!

I feel like we’re in the home stretch now. That elusive diagnosis may very well be confirmed tomorrow. Let’s just say that getting here has involved scores of things that no person would readily agree to unless they were desperate. I guess that made me desperate. Trust me when I tell you that there truly are some um, odd, people coming up with testing. I would really like to meet the inventors of some of the diagnostic tests (who came up with using three IV lines for three different dyes during the same exam).

Sadly, if this is the diagnosis, it explains much but there is no cure. There are definitive treatment options which is a plus as my doctors will no longer be fumbling around trying to figure out what to do. It’s not progressive in that I will die from it. But, it does get worse and the complications are high. Over 40% of the people diagnosed with this disease die from complications. Before that freaks you out, the statistics on this condition are that it occurs in 1:50,000 across the globe. There is still much to be discovered and new treatment options are being explored.

So, I may have caught my zebra. I’m borderline hopeful right now because labels are what doctors understand. Labels are what makes treatment possible. Labels are what help track progression. Think about it…you break your arm and the doctors know what to do. Doesn’t matter where you are, the treatment is pretty standardized. But, show up with cold/flu symptoms and what happens? Some testing to rule out infections and then treatment based on your provider’s informed diagnosis. Show up with vague symptoms that don’t fit neatly into a box…you probably have a zebra on the loose.

So here’s to zebras and the people who chase them. I really, truly hope mine has been caught.

All in a Day’s work

For me, half of the joy of achieving has been the struggle and the fight, the pitting myself against the world and all its competition – and winning.~ Conrad Veidt

I admit it, I am competitive. People who know me from various venues can attest to the fact that I rarely go down easy. It might even be obvious to the readers of this blog, based on previous entries. Competition spurs me to think outside the box. To ponder other roads not taken and then beat my own through the jungle of life.

Some days, I feel very much like David of yore. Today was one of them. It began with a phone call at 0811 informing me that the medication, literally the last one we can try to find relief for one of my medical conditions, was denied by my insurance. I was welcome to appeal, but should expect at least 3 months for that process to go through. I spent an hour and a half on the phone to no avail. The rules are the rules I was repeatedly told. And, when I attempted to contact the rule makers, I was informed by recording that they were furloughed and had no expected return date. It was literally a morning spent chasing my own tail.

And then, I had an idea. As my mother has always told me, there is more than one way to skin a cat. I called the military pharmacy and asked if they stocked the drug. Why yes, of course, was the answer. Would they fill an out-of-state prescription? Of course, just bring it in. And just like that, I won. By thinking outside the box and fighting the good fight, I’ll get the medication and see if it helps. I’m still marveling at how two pieces of the same system can operate so ignorantly of each other.

So, my words to you tonight dear readers, are to never give up. Keep trying and remember that you are the only ones capable of changing your fates. Compete with yourself to find ways through challenging times. You may find other competition, but there is nothing so satisfying as winning one for yourself.

Clann

Family means no one gets left behind or forgotten.~ David Ogden Stiers

Over the last few days, I’ve seen multiple stories in the media about families. A woman who has 15 kids now is demanding that someone, not her, take responsibility for them. A 5-year-old girl has been missing for two years and her family no longer mourns her. A young man was killed in a drive by shooting a year ago and his mother is still passing out flyers asking for anyone with information to come forward. A teenaged mother threw her newborn over a fence so her parents wouldn’t find out she had been pregnant. All this is swirling around my head, begging me to ask how did we as a community reach this crazy place?

I admit I was raised under rather traditional rules. My parents are immigrants (hence the Gaelic title of this entry) and raised us how they were raised. Even in the 70s, my childhood friends would comment on how weird we were. We ate dinner together almost every night. My parents were present at our activities. They were involved in our schools and communities. Discipline came swift and hard to violations of the house rules. My friends laughed at my curfews, since they had none. They laughed at the boundaries of my life, daring me to bike further from home in defiance of the rules. I remember believing that my mother was omniscient as I was always called out on those transgressions. Turns out she just knew someone in every part of my life who would call her and tell her I was misbehaving.

I look at all the “family” things that make the news and wonder how anyone could stop missing their child. How anyone could just give up. How anyone could abandon a child. The families that keep fighting are becoming less noticeable. The only place I saw news of Joe Bell being mowed over in Utah while on his walk against bullying was on social media. The family of a New York teen with Autism is raising money to offer a reward for the safe return of their son who wandered away from school almost two weeks ago, also on social media. A Florida family is trying to get the word out about concussions because their child died after a football collision, again on social media. Broadcast media is still going with “if it bleeds, it leads” and has no interest in sharing these stories.

I don’t think I will ever understand parents who have such callous disregard for their children. I hope my three children know that the village that raised them will welcome them back anytime. I’m pleased that they already seek to find the good in people and to work towards improving their communities. Because that’s what it’s about. Accepting responsibility, building community, strengthening relationships and knowing that your family has your back.

And just in case you missed it in previous posts, family is not defined by blood. Surely that is one of the first things most of us experience as children. But as we grow older, family becomes those we choose to allow into our lives. If each of us refused to leave others behind, I think humanity just might have a chance.

Open Mind Without Inserting Foot

The only source of knowledge is experience.~ Albert Einstein

Oh, this quote could take me down so many roads…from watching new parents struggle with the new normal in their lives, hearing stories of success from the families I help support in the education system, guiding my own children as they journey to adulthood. To me knowledge is hard-won through experience. You can read books (an experience), become involved in something (more experience) or try something new (experience). It’s all in the perspective.

I wonder sometimes if the quality of the experience affects the value of the knowledge. If my school teacher (read college professor) hasn’t worked directly with elementary age students in over 10 years, how valuable is their experience today? Does the new influx of information add or detract from previously learned knowledge? That’s probably too philosophical and abstract, which means it’s best filed under keep it in my head for now.

Tomorrow, I will present my knowledge, gained through research and personal experience, to an individual who may or may not be receptive to the information. I’m no professional in the field I’m presenting and the individual is. My task is to make this information palatable so the professional can see and think from my perspective. Am I the only one who plans out these things?

I doubt it. When the message is near and dear, we all think about the best way to convince others we have at least part of the answer. For some, it’s a matter of pride. For others it’s seriously questioning the established “chain of command.” You need look no further than your news casts or social media platforms to see this playing out on an hourly basis right now.

I’m just hoping that if I leave big enough breadcrumbs, this professional will follow the trail and consider what I’m saying. I’m hoping the individual sets aside the need to be right and recognizes that I am the most invested person in the process and therefore the most devoted to the outcome. I’m hoping the individual’s prejudices can be set aside long enough for my message to be heard. That’s a lot of ifs and hopes to expect.

The next time you find yourself trying to present information, think about your audience. What can you do to make sure your voice is heard? Take the time to prepare. This applies to school, work, recreational activities and social lives. Give some leeway in your interpretations to provide an opportunity for the other person to be heard. You can be strong in your convictions, but opening yourself to new ideas can help you understand that there is a wide spectrum of ideas and some just might make sense.