Category Archives: Life Happens

Dear Doctor…

Posted on by
Reply

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

 

 

Dear Doctor,

I really wish you could understand that the human body is an ecosystem. Everything that happens affects every part of the human body. It’s not as simple as fix this and everything will be fine. Your fixes have frequently created more problems in my ecosystem. And, by the way, each ecosystem is unique and responds differently than any other ecosystem out there.

If only you could pull all the information I have about my ecosystem into your head and see what my life really looks like. Maybe you would stop guessing so much. Perhaps you could admit that you don’t understand and need to study things some more. On a shooting star, I wish you’d stop telling me that all my problems are psychosomatic. I have consented to your tests, hospital stays, blood draws and office visits so you could have data you knew how to quantify and draw conclusions from. Now all I want is for you to follow through and do your job.

That’s right. Do. Your. Job. Use your powers of inquiry that got you into your chosen profession. Stop limiting yourself to the narrow box that has come to define your idea of disease. It’s rumored that we use less than 20% of our brain’s capacity. Imagine what you could do by committing even 1% more to solving the mysteries of my life.

Stop complaining about me wanting answers. Stop denying me basic medical care because you don’t believe I have any illnesses. Stop reading just one line of my chart and spend a few minutes seeing where I’ve been to help me get to where I’m going. Stop treating me like I’m an idiot and have no idea. Stop trying to use terminology you think I won’t understand in an effort to “satisfy” my line of questioning. Just STOP.

Before you start griping about me, think about how you would feel being on the receiving end of your statements. Think about what it’s like to be told you are purposefully making yourself sick. Think about the impact your words will have on me. I came to you because I wanted help and hopefully answers. Not because my self-esteem needed another hit.

Act. Tell me your theories. Give me space to tell you my experience, which may answer more questions that you have. Apply your knowledge and realize that my ecosystem is rather precariously balanced. Don’t just toss out random lines of thought. Do your research and be ready to DISCUSS, not tell, the information. You see, I’m not quite the idiot you make me out to be. Maybe that’s what knocked you off course and made you think it’s all in my head. Just a hint…while I may not have a medical degree, I’ve been sick long enough to know my own symptoms AND to recognize where you are blowing smoke up an orifice.

Sincerely,
The Patient You Blew Off Today

Undercover Autistic: on disclosing autism in the (academic) workplace

Posted on by
Reply

I’ve been undercover most of my life. Now I’m “out” I can read pieces like this and vigorously nod my head in agreement.

 

Undercover Autistic: on disclosing autism in the (academic) workplace.

Autism…It’s not an epidemic

Posted on by
Reply

I’ve had a few months now to come to terms with my diagnosis. In a way, I guess I’ve always known. I was labeled gifted in 1973…kindergarten for me. Throughout school, I remember the run ins with teachers, the compassionate few that took me under their wing and, well, the bullies. I was a special education teacher until my other health issues got to be too much to juggle with a job. From that perspective, I can honestly tell you that I think we have made great strides toward including learners of all abilities. However, the overall system is still in place. As are the teachers who don’t understand things, the compassionate few who guide instead of punish and, well, the bullies. In spades.

I keep bringing up bullies because that behavior is so prevalent in American society (might be in others, but I don’t have personal experience there). Really, would it be so hard for people to just stop thinking solely about themselves and consider the impact of their behavior and words on others? There is a social media meme that states “Kindness is free. Just sprinkle that stuff everywhere!”

I don’t think it would be that hard to think before you say or act. Forty years ago, that’s how kids were raised. I’m not going to lapse into a “good old days” speech because while I believe in boundaries, sometimes I saw kids whose boundaries were so tightly defined, they suffocated. Parenting requires effort and balance.

In case you’re wondering by now…there is a reason for the title of this blog. One of the biggest bullies in the Autism community is at it again. You’ve probably heard about Autism Speaks by now. If not, feel free to search the web. You’ll find lots of information, both pro and con. For me personally, Autism Speaks does not speak for me. I can see why some families want a cure and if that’s for you, ok. But like everything else, I don’t think it should be forced on people. If you weren’t prepared to raise a child who may be different from you in behavior, beliefs or any other way, you probably ought not to have children. Every little human eventually grows up. They may or may follow in your footsteps. Accepting that different is okay will go a long way towards sprinkling kindness.

Autism Speaks actively negates all the good things Autistic individuals are capable of doing in their lifetimes. I know many Autistics that are quite accomplished by society’s standards and even more who are successful in their chosen pursuits. Yes, these individuals are primarily what is now considered “high functioning” under the spectrum diagnosis forced on us by the DSM-V. I really struggle with that verbiage. It allows organizations like Autism Speaks to propagandize against Autistics with impunity. Now we’re all “suffering” from a “disease” that is an “epidemic.”

Curious? Check out http://autismwomensnetwork.org/film-review-of-documentary-sounding-the-alarm-battling-the-autism-epidemic/. I can’t watch the “documentary” without getting really angry. I want you to substitute the word “cancer” for Autism and see how you feel by the end. Because that is what is implied…an epidemic in need of a cure. Oddly enough, the only part where adults are asked anything is a segment about :30 seconds long. As I said, all little humans grow up. We aren’t “cured” when we turn 18. We don’t develop powers of invisibility. I’m still here as are thousands of individuals who grew up Autistic.

Honestly, if I wasn’t being singled out for Autism, I would have been singled out for something else as I was growing up. Proof? Autistics attended separate schools when I was younger. Remember, the education laws everyone holds up now were enacted in 1974. That means about the time I hit high school, I saw my first “disabled” student in my own school. I wasn’t diagnosed Autistic. I was gifted and quirky. There’s a reason I started college at 16…I couldn’t stand the one size fits all high school I attended. My teachers disliked me. My fellow students shunned me (there are 3 friends from high school on my social media page). It was a living hell.

Read the review. Think about what you could do differently. Sprinkle kindness and sow acceptance. We’re all in this together and if you’d like things to change, remember the change has to start with YOU!

Guinea Pig

Posted on by
Reply

As I’m writing this, I’m hooked up to machines and having blood drawn every hour. I’m a
“research subject” at the medical facility I’m currently calling home. I didn’t know this until a few minutes ago. I knew they were running tests to see if they could figure things out, but no one told me I’d be the test subject.

I’m not sure how I feel about this. On one hand, I’m contributing to the knowledge base for the greater good. Perhaps someone who comes along after me can benefit from this experience. Theoretically, I’ll benefit from more in-depth study of what’s going on in my body and possibly find the best treatment.  But there is still a sense of “wtf” did no one tell me that they don’t really have a clue and I’m the first person they’ve had an opportunity to study.

Oh, and I questioned what the nurses were doing because it wasn’t what I signed up for. I dragged the truth out of an nurse…mainly because I refused to agree to treatment until they could explain why they were doing these tests. I know, blackmail is the strongest currency out there. You want my data, then tell me why or I’m out.

So, once again, caveat emptor. Read the Fine Print. Ask questions until you understand. No one else will do it for you. And maybe, just maybe, you’ll understand and appreciate all the guinea pigs that went before you.

 

 

Black Sheep

Posted on by
Reply

Growing up, I always heard the expression black sheep of the family. I came to understand that it meant those who didn’t conform. Conforming is so ingrained in our culture that anyone who doesn’t “fit” soon finds out they’re not a member of the club.

Personally, I think black sheep are beautiful., both literally and figuratively. They’re uncommon enough that people post pictures of them on social media saying “look what I found!” And they’re common enough that we seem to find each other on a regular basis.

There’s nothing inherently wrong with being a black sheep. We’re funny, repositories of useless information ( Usually blackmail material on our families) and always looking for new things to do. If there’s trouble to be had, we’ll find it.

Embrace your inner black sheep. You know you have one. Bring it out and see who else finds it beautiful. I think you’d be surprised at how many people you though were pure as the driven snow and yet have that funny dark streak down their backs. Closet black sheep are especially fun, because they don’t see the humor in their situation.

Love your quirks, tics and oddities. They are what makes you, well, you. The world would be very boring indeed if all we had were plain white sheep.

RTFP

Posted on by
Reply

Over time, you learn more about things going on around you, just because they are part of your life experience. If you take the opportunities to learn, then your knowledge base because both wide and deep. Unfortunately, some people fail to learn and consequently are doomed to repeat their mistakes a la “Groundhog Day.”

As I write this, I am sitting in an outpatient surgical center waiting for my husband to have a relatively minor procedure done. All around me are the standard warnings about wearing a mask if you have cold/flu symptoms. Wash your hands frequently. Make sure your trash is thrown away. Big, bold signs with pictures for those who can’t comprehend the words.

Moving into the pre-op holding area I see more signs. The “5 Moments of Hand Washing” is particularly prominent. I guess this is where the downside to being medically involved comes in. The pre-op nurse appears to not understand the importance of basic sanitation. I didn’t see her wash her hands even once. She pulled on gloves…and then picked things up off the floor. She pre-filled syringes of lidocaine and dropped them into a workstation drawer. She dropped an IV set on the floor and picked it up for later use. Sharps were thrown in the trash instead of a sharps container. The whole time I wanted to say something, but I’m trying to not freak out on my husband, who I’m sure is freaking out in his own way.

To answer your question…I’m sure these centers work great for most people. Personally, I’ve had the “it only takes one germ to kill you” lecture many, many times. You won’t find me signing up for this. It’s really kind of scary how casual the staff is here. Maybe I’m just hyper-aware. Constantly on alert for ways to reduce the risks I face every day. Yeah, I’m probably over reacting and high strung.

But, there it is. RTFP- read the fine print. In this case, just read the print. Make sure you understand what’s going on around you. Speak up. Don’t just randomly agree to things. We all have a stake in improving things. Anything from the safety of our vulnerable members of society to ensuring our personal safety. Don’t go quietly into the night. I will be filling out the satisfaction questionnaire when it shows up in the mail. After all, if you don’t make any effort to enact change, who will?

Options

Posted on by
Reply

Attitude is a little thing that makes a big difference.~ Winston Churchill

I had another doctor’s appointment today. Another specialist who is referring me to yet another specialist. Some days it seems like an endless road of cobblestones with the all too frequent speed bumps. I know I’m not alone on this journey. Many of my social media contacts seem to have similar paths. I read their updates and laugh/cry with them. I’ve met many of them in person now and am constantly amazed at how much people cope with on a daily basis.

Today my new specialist asked me how I could be so clinical and calm when describing my health. I must have looked weary as well since she asked me how many times I had repeated my history. Truth be known, I’ve lost count. I’ve been ill since 2000 and “chronically” ill since 2010. My life changed. I can’t do some things anymore. I’ve discovered new pursuits to replace the ones I’ve had to cross off. My coping mechanisms are wide in scope since I have so many things to deal with. Yes, I am clinical. It’s actually one of my ways of dealing with the speed bumps.

What I find interesting is how different people look at their circumstances. I have one friend whose battle cry is “Quality over Quantity!” This friend is determined to live a full life, however long it is. I read their updates and find myself hoping it’s a long one. The sheer will to keep getting up day after day, never knowing how beat down you’ll be at the end of the day, is a testament to the strength of the human spirit.

And I know other people who see what I envision as small challenges melt into a hot mess. Their response to a stubbed toe is worthy of an Oscar for Best Acting. Yes, I find myself chuckling and restraining myself from posting something sarcastic. I keep telling myself that I haven’t walked in their shoes and shouldn’t judge. But, really. I have a hard time sympathizing with you over a cold that lasts THREE WHOLE DAYS when I have weeks where I struggle to stay out of the hospital.

Then there are my “in between” friends. They triumph over challenges and quietly mention their latest success. They write about things that bug them and a few days later post about how it’s amazing the way things work out.  I read about their kids and family members and cheer them on. Again, seeing the human spirit in action is an amazing thing.

So what am I talking about in this blog post? Attitude. There’s a whole lot of “not fun” in this world. there’s also a lot of great opportunities. People who get hung up on the “not fun” parts absorb that attitude and, in a way, make their own lives “not fun.” I used to be one of those people. There was a time when I would have stayed in bed all day because of a cold. I’d bemoan my stuffed up nose and feather-filled head. Even in the early years of being ill, I’d do an “oh poor me” schtick for anyone who would listen.

Now, I see things differently. I weigh whether the level of “not fun” is worth doing an activity. I speak up and tell people what activities I can do without experiencing too much “not fun” as a consequence. Ever so slowly, my friends are picking up on my cues. More people are becoming less fearful about including me in activities. I like to think it’s because I’ve put them at ease. That maybe they have learned that while I’m ill, I’m still a person who needs companionship. I can still do many things. Sometimes it’s mind over body if I really want to do something.

It comes down to attitude. We have to make peace with our past, cherish our todays and celebrate our tomorrows. That’s what I told the specialist today. The look on her face was one of astonishment. And we proceeded to map our the next plan of action to deal with the latest issue. I encourage you to continue moving forward, head held high, facing the challenges with grace and dignity. It’s your call.

On my Mind

Posted on by
Reply

She had been doing this for some time when a man approached her and said, “Little girl, why are you doing this? Look at this beach! You can’t save all these starfish. You can’t begin to make a difference!”

The girl seemed crushed, suddenly deflated. But after a few moments, she bent down, picked up another starfish, and hurled it as far as she could into the ocean. Then she looked up at the man and replied, “Well, I made a difference to that one!”

 

I’m just going to throw this one out there. Mental health is just as important as physical health. Study after study shows that people who take care of all aspects of their health live longer, more fulfilling lives. Like many health related things, however, people don’t want to talk about it.

So I’m going to talk and hope at least one person listens. In the last two months, several people I care about have become so disillusioned with life that they decided suicide was the only way out. While I’m not an expert, I’ve been there myself and walked with many others who have felt this way. I’m not going to sugarcoat things here with the hope that at least one person understands what I’m saying.

At the time a person reaches this point, the sense of reason is gone. There is literally nothing visible to the individual aside from release. It’s like tunnel vision or wearing blinders. Distraction is almost impossible because the fixation on relief is so strong. If someone is well and truly only focused on the relief, there is not much anyone can do to stop the inevitable conclusion. You can try to talk someone off the ledge, but a truly determined individual will not hear you.

Which brings me to my next point. We’re social beings. If you start to see a friend withdraw, ask why. This is the time your words may be heard. Waiting until the cries for help become so obvious they can’t be ignored is too long. Engage your friends on a regular basis. Check on each other and listen instead of thinking about your next activity. Just imagine if we all paid as much attention to the people around us as we do to celebrities. Everyone’s well-being would improve.

The flip side of this is to recognize when you are over your head. Some people need more help than others. While a chat or a hug may help someone regain a wider view, it’s just not possible for everyone to bounce back as easily. The airline advisory to put your own mask on first is so true. If you become fixated on helping someone who doesn’t want help, you can go down as well. Especially if the person is ultimately successful despite your efforts.

Ironically, mental health professionals are some of the lowest paid individuals and yet they carry such a huge responsibility. My insurance only reimburses up to about 1/3 of what they pay my physicians. As my news feed becomes plugged up with stories about how mental illness is to blame for most shootings, I just think about how great it would be if we not only had the professionals, but also the respect for the profession. Money isn’t everything, but everyone has bills and it would be nice if the people we hope will step up could be compensated accordingly.

Many years ago a movie titled “Crocodile Dundee” screened across America. The title character is from Australia and ends up in America. He has a conversation about life’s troubles with the female lead who mentions her therapist. And the words he spoke “don’t you talk to your mates (friends)?” still reverberates in my mind. We have all become so busy that we have forgotten about our mates. In this crazy, self-absorbed society we have left our friends to fend for themselves. And that is just not cool.

For those of you who contemplate relief on a regular basis, I urge you to seek out professional help now. For those of you who think, but don’t act, reach out. There are many avenues out there available to you. Sometimes you just need to see around the next corner. For those of you who think you’re immune, I ask you to share your strength. Engage with your friends and community. Help others see the sunny side of life.

We’re all in this together. Don’t place blame. Shaming people because you think they’re weak is not okay either. You don’t know what is up next in your life. Or how well you will cope with the next curveball life throws you. It’s okay to ask for help. It’s okay to offer help. Don’t shy away from someone because they have hit a bump. You may be the one who makes a difference.

 

Challenges

Posted on by
Reply

Truth is, I’ll never know all there is to know about you just as you will never know all there is to know about me. Humans are by nature too complicated to be understood fully. So we can choose either to approach our fellow human beings with suspicion or to approach them with an open mind, a dash of optimism and a great deal of candor.~ Tom Hanks

 

I discovered this past week that I have not been communicating as clearly as I could have been. I’m sure many of you have read blogs about what people with chronic illness want you to do. But, it seems that the affected person needs to do some things as well. Here’s my new list:

Never apologize for who you are. It gets on people’s nerves.

Stay in touch with the people you want in your life. If you make the effort, so will they.

Focus on the relationship, not your problems. Unless the person has specifically asked, they don’t want a medical tutorial.

It’s ok to say no. Just try to reschedule as soon as possible.

Friends want to be with you but may feel awkward. Acknowledge that you understand and ask them if they have questions you  can answer.

Focus on things you can do. Enjoy the time you have together with no regrets.

Finally, it’s not all about me. Relationships are two-way streets. Everyone has challenges and wants to talk about them. Don’t trivialize their concerns/situations just because you “have it worse.” It’s not a contest.

Come to think of it…this list applies to everyone. Whenever you hit a speed bump, keep these things in mind and hopefully you’ll get past that bump quickly.

Courage

Posted on by
Reply

Courage is being scared to death… and saddling up anyway.~ John Wayne

Having a disability is challenging in more ways than most people can imagine. I choose to use a service dog to help with my disabilities. It’s not as easy as some people think. Aside from countless hours of training a canine to help me, I have also had to learn how to help people understand how Blizzard and I work as a team. Some days I’m more diplomatic than other days. I have a list of snappy comebacks to many of the snide comments I hear every day. And then ,there are the “situations” we find ourselves in when we least expect something to happen. The following is a social media post, reposted with permission, that my friend Karyn B. wrote this morning:

Some of you know that I have had a bit of tense history with an elderly gentleman, a Korean War Veteran, who is a patron at my pharmacy. I have had three very unpleasant encounters him regarding Silas. Being we have not crossed paths in quite some time, I assumed the pharmacy warning to compose himself came to fruition and resulted in his transfer to another pharmacy. No, and I quivered as I parked my car and thought I recognized his truck. I am glad I chose to go inside. As Silas and I rounded the corner to the pharmacy, there he was. Scowling. Mumbling in a grunting manner. One eye one me and one eye on Silas. The pharmacist simply said, “Mr ?, that is a service team. You must ignore them.” The man looked at Si and looked back at the pharmacist and said, “She needs to keep that monster bastard away from me.” As if my mouth ran on new Energizer batteries, “Sir, he’s not a bastard, he was an orphan. I am certain you have killed more people than he has, and he is no less a survivor than you. He serves me with the same diligence you served our country. And, his name is Silas, not monster.” Yes, everyone heard the pin drop. My hands were shaking and my voice trembling. I actually had nervous tears in my eyes. I went silent. He checked out, then took a seat. I made my purchase and turned to leave. In a slow, arthritic rise, he stood up and came to me. He said no other words as he walked directly beside Si with the same prong cane he instigated and threatened Silas with before. We exited the sliders as if we went into the store together. The man stood waiting as I had Silas load. I did feel uneasy, uncomfortable with him so near. The man then opened my door for me. I thanked him. He didn’t smile. He didn’t respond, but his actions spoke a million words These are the moments that make life so beautiful. Brave, yet simple and pure.
You don’t need a cape to be a superhero…just the courage to face your challenges with grace and dignity.