Looking for Respect…

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I have a high tolerance for media insanity.  However my tolerance is running thin. It now seems that name-calling back in the election of 2016 has become mild compared to this past week. We were appalled with “nasty women” and “deplorables” and now these words have little to no effect. One strategy used is to take away the power/pain of words is by normalizing them. So the media figures and voters alike decided they would not be offended by those names but now embrace them. Little did we realize that this name-calling would just be the beginning…

Remember when Hollywood and TV audiences alike were so offended by Ricky Gervais’s humor starting in 2010 (some of us are still offended;-)) But he did tweeted a reasonable question today:

“When did it become more fashionable to undermine and discredit someone who disagrees with you than to offer a reasoned and winning counter argument?”

 We have lost respect for an intellectual, thought-out, researched argument and now we accept the winner as the person who shocks you the most with their insults. Whoever has the better insult with the most supporters wins.

I hate getting political. I specifically created this blog to create positive and uplifting content and to get away from the world which seems politically focused and not human being focused. My ideas were to bring people together on all different sides to remember what decency and respect was.

I hate that we are so willing to look down upon those that think differently than us. We should take that time to listen. One of the worst sayings is “Respect is earned, not given”. NO! You should treat EVERYONE with respect, from the president to the homeless person.

One of my favorite examples of this was when my dad used to run summer camps. There were campers who had made some bad decisions at camp. Their punishment? Instead of spending time with the campers they had to walk around with him for the day. Chatting with him while he was checking on all the activities and running the camp. He would talk to them with RESPECT. 

Since then I have had several men (who are grown-up campers), who have come to me and asked me if I was indeed the daughter of the man who ran these camps. I would confirm – they would break down and tell me how horrible their family life had been and how they were on the wrong path but they would never forget the “day of punishment” they had to spend with my dad. They tell me how my dad changed their lives because he had treated them with respect (something they had never experienced before) and as a result they realized they were worth something. They realized they could do better. As a result they made better choices in their lives. 

Respect changes opinions and makes the world a better place. No one has ever changed their mind through being called names.

People these days are not surprised by name-calling, but what throws them is treating them with respect – even if they have caused offence.  Name calling is a way of dehumanizing others – it’s the beginning of war. A good example of this is Frida Gashumba’s account of genocide in Rwanda. Name calling in the media and political realm causes a theatrical environment:

In leading up to the first World War:

“The theatrical quality of the political world had become so patent that the theater could appear as the realm of reality.” – Hannah Arendt, The Origins of Totalitarianism

Giving others respect does not mean you have to trust, like, or even become friends with those you give respect to.  Respect gives basic human decency and acknowledges the rights of others. Acknowledging other’s rights – is one way we prevent the beginnings of war.

Get Hanna Arendt’s book The Origins of Totalitarianism  here

Get Frida Gashumba’s book on the Rwandan genocide called Frida: Chosen to Die, Destined to Live here

 

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To the chronically Ill:

 

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Being chronically Ill is something I don’t talk about much anymore, for many reasons.

Some of those reasons is that this subject tends to be the only one that people know how to talk to me about, I want people to see me other than “the sick girl”. It is shocking but I do have thoughts and opinions on many other things. I have also decided that being ill doesn’t define my personality.

On the other hand, my mind is managing my symptoms and working extra hard to ignore this part of me (which does take up a lot of thoughts and mental energy) that I just can’t take the idea of talking about it anymore…  at the same time there are moments where I need someone that truly understands and to talk to about it.

I need to know that that one person I talk to about it, isn’t burdened any further by all the issues and pain and symptoms I have going on because I already feel like a burden.

BUT I WRITE THIS – because I believe it’s helpful to those that are struggling:

In the period of time where you are still trying to figure out what chronic illness you have that you will want to give up. You are guaranteed to have at least one doctor tell you it’s all in your head to make up for the fact that they don’t know how to investigate your symptoms properly. I want to say sorry for that. It has only been after a lifetime of health issues that I can look back and say that those doctors get away with it because they have education certificates that tell people they are qualified, but they are obviously lacking in what they should know. They should know that you either need help from a different specialist or the tests they should be running to discover the truth. It’s not you, it’s them. I can tell you a list of the insanely stupid things that doctors have said to me because THEY were incompetent, but ultimately – if they can’t work out the puzzle of your symptoms – it’s somehow your fault. Wrong. I’m sorry if you have experienced this – please don’t let it stop you from going to doctors – there are truly some great ones out there. Don’t let the ones who have to big of an ego to admit that they don’t know something affect you (easier said than done I know).

There are times you will wonder what you contribute to others, why you are here when you are in pain and feel like you have nothing to give. You do. Even if it’s just empathy for others, or writing a card to someone who’s ill, or sending a caring text. You have a gift, even if it’s hard for you to see at the moment because you are overwhelmed with pain, discomfort, and exhaustion.

I want to express encouragement for you to keep going. Whether you know what is wrong or not, my doctors are always telling me of a new technologies everyday that can help people who could not be helped before. I have had challenges with my health since I can remember, with so many different health systems. I really could fill up my Facebook friends with my specialists (I see them more often than my actual friends). I have to constantly see them, and have check ups and have them keep an eye on things until my next surgery. There was a period of time though where I was told I didn’t fit in “any category” of illness. Some doctors (the bad ones) told me it was in my head. Some doctors (the good ones) knew it was “something” but an awesome doctor will admit it is beyond them. The good doctors would say “I feel like you have something, that will be discovered soon, and we can all figure out what this is. I didn’t realize that at that exact moment was when my illness was being discovered – but had yet to be widely recognized or published until 3 years later.

I have things that did not show up on one type of scan but showed up on another…. There have been mistakes but ultimately there have been wins. I have an amazing support team of doctors. I have had such rare conditions that I know I’ve been written up somewhere in some medical journal. So I’ve had my fair share of doctors who shrugged their shoulders. This is discouraging but I will say I would much rather a doctor say “I believe you but I don’t know what it is” than a doctor who would like to pretend I’m imagining symptoms (even with abnormal test results).

I also look back and realized I tried some kooky things all because I had hope that I could get fixed and I had no answers. I get frustrated with people who offer crazy things, they are scam artists at best, and they feed on people who are desperate for help. Someday you may shake your head or laugh at how silly it all was.

I am sorry for all the ‘friends’ in your life who don’t understand and make stupid and judgmental comments. These people will either no longer be in your life or you will learn to ignore them. I have found that the majority will finally understand (after going through their own health trial) how much they were ignorant about. That’s when you can turn around and be the friend to them that they never were to you. It happens…

Hang in there. You are not alone. There is much I don’t like about social media but a beautiful thing about it is that there is easier access to support groups for people who can’t get out of bed that day (that week, month or year). There are many blogs I have found on chronic illness… (if you are reading this and you blog about having a chronic illness, please place a link in the comments section) that I find to be comforting on those difficult days.

My life is better in the sense that I now have more good days than bad (that’s how I measure it), and hence why I don’t discuss it as much but I know quite a few people going through their own health struggles lately so I felt like it was time for me to write this and just say sorry. It isn’t fair, I know that if you were well you would be seizing the day and doing amazing things. Sometimes the endurance you have to keep going is what inspires others – and if you don’t even feel strong enough to put on a brave face, and all you can do is feel miserable, I hope you have some company to feel miserable with, a person or a pet, or just to vent in a chronic illness group.
Keep going.
Jen

 

Why I’m not going to treat you like a victim…

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So I’m sure you know from experience by now that life isn’t easy. The Scottish author Ian Maclaren (aka Rev John Watson), is known for his words “Be kind, for everyone you meet is fighting a hard battle”.

Some of us have been through difficult trauma and life-altering circumstances. We need to own these feelings that are a result of that trauma. We need to express them somehow. Holding it in makes it worse. As Maya Angelou says “there is no greater agony than bearing an untold story inside you”. We sometimes are under the impression we must convey that we are “fine” all the time. Why? Because not being fine makes others uncomfortable and how dare we make others feel comfortable with our truth, and our feelings right? So we bottle in those emotions and feelings in. Not to be extreme but harboring those emotions can lead to an early death.

If you have trouble opening up… writing your feelings in a journal helps to process them. Either way, in order get through the effects of trauma – we HAVE TO, we MUST talk about our feelings and own them and not feel guilty about them.

The problem is, I’ve seen people respond to these situations by treating the victim, like a victim for the REST OF THEIR LIVES. Treating people (or even yourself) as a victim robs people of the feeling of having control over their lives. Yes, something out of your control happened to you, but you actually have a choice to not let this moment of trauma define and control you. However I want to be clear, people cannot get through trauma until they are at a point where they have owned their feelings about it first. Otherwise it never goes away.

Being a victim should be temporary. The state of having a victim mentality can last forever. The victim becomes prisoner to a traumatic event and victim mentality leads to worse situations down the road which cause a greater ripple effect of others getting hurt.

If you are a parent – it is VITAL that you empathize with your child over something that is unfair, or painful that has happened to them, but it is NECESSARY to give them tools to help work through those emotions, and help them be free of the pain by encouraging resilience. If this means that you too need to learn how to get out of your own victimhood, then getting help for yourself first may be the first step in being a better parent. If you yourself do not have the tools to work through your own emotions and demonstrate resilience – there is no way you can help your own children in this area.

There is a lot more to this, more than can be written in a blog but a lot of hurt that is being done in the world are people who not only have been victims, but have been encouraged to see themselves as victims or have not received the support needed to show them that they can learn to move on and be resilient.

Hope your week has been amazing!

For more resources on this subject click here.

 

“People will never forget how you made them feel…”

Maya

It’s been 4 years since the woman who spoke these words passed. It’s one of my favorite quotes especially in this age of social media. We have been trained to give our judgement and opinion more than ever. These judgements are made so quickly because we are used to scrolling through multiple news items without reading the whole story. Those news items are published to create an emotional response.
We are trained to speak without seeing the other side. Today there was another post of a woman who did something socially unacceptable. A woman shaving her legs at a hotel pool. As far as I can tell, no one confronted this person, no one alerted the staff of establishment that this act was taking place. Instead, there was a picture posted on social media while everyone from around the world could label it as disgusting. There is something this does for us. It helps us feel better about ourselves because at least we aren’t as disgusting as this woman. However no one thinks about how the children of this woman will be easily identified in their home town, no one will realize that this will cause pain for the children, and probably a lifelong experience of bullying. This is for something that the children had no control over, but that their own mother was publicly shamed on the internet.
This was not an uplifting story which made us feel good about someone doing something lovely for others. It was not anything that made us feel happier about the world we live in and the good parts of humanity.
I pointed this out on a thread and was challenged with the response “but this woman deserves it!”.
Two weeks ago I saw a woman doing socially unacceptable things in a public area. A lot of people were giving her dirty looks and I am thankful there was no one with their phones out. I was curious as to why the woman was behaving in this way and struck up a conversation with her. To my surprise, she couldn’t have been more thoughtful or polite when discussing her situation. I discovered through having an open discussion with her that she was struggling in more ways than I imagined, and appearances were definitely different from the person that I had a conversation with. I realized it was judgement that caused this woman to be isolated and lack help from the greater community. I now keep an eye out for her so I can have a chat with her again.
She completely changed my assumptions about her.
We have the right to pass judgement and share our opinions, but how amazing would it be if we lived in a world where we thought a little more about the other person. Sometimes people surprise us. Sometimes there is more we can learn from those that do things that seem so different, or socially unacceptable. When we stop focusing so much on who did right and who did wrong, and we treat people who are so different from us as equals, we become blessings in other people’s lives.  You will be someone like Maya’s quote – and people will remember how you made them feel.

For more of Maya Angelou click here.

To Those Mothers

 

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We all have those days.. especially as a parent where we feel like we failed. Today was a particularly hard day for me being that I had both of my children have difficult days as well as a husband who struggled with some challenges at work. However there are the mothers that struggle ‘a tad’ more. Those are the mothers with children who require that extra work. I have a child that may be on the sensory scale when it comes to challenges (although some have mistaken him for being autistic) but he is not on the Autism spectrum. This week – memorial day week – reminds me of the mothers of Autistic children. Why?
I was 12 years old when my nephew was born into this world. I was closer to him in age than I was with some of my siblings. May 31st is my nephew’s birthday. I remember feeling so overwhelmed with happiness when he was born as he was my parents first grandchild and I was the youngest. I thought of him as that younger brother I always wanted. Then the confusion set in when I came home from school to be told that he was “different”. We later found out he suffered from a brain hemorrhage at birth. Despite passing all sorts of milestones – I remember him losing a ‘normal voice’ and his giggling personality to autism. I don’t talk about it because I feel guilty. I feel like I have no right to feel upset or angry or sad about what has happened to him as he is my sister’s child, not mine. She has to be the one that deals with the most on all of this. I may have lived with him when he was little but she has spent every day living with him and the unpredictablity, discouragement and appreciating the little things.

I am still surprised when I come across people who think “Autism doesn’t exist” or “the child wasn’t disciplined enough”. I know from first hand experience this is not the case.

There are bad statistics for mothers who deal with severe autistic children. They have to do with the success of their marriage and their health just to name a couple. This makes me concerned for my sister, but makes me think of the’ general Autistic community’ and the EXTRA stresses they carry each day.

I know as an aunt there are times I treasure. I know my nephew doesn’t like to be touched much but I have sat in silence with him and he has laid his head on my shoulder. That day makes me happy.
The day where I hadn’t seen him in years and wasn’t sure if he remembered me – and I walked into his room only to have him tell me to “come here sweetheart” in the most excited voice as he hugged me.
These moments I can think of and remember knowing they are not the norm – they are the exception. I remember when I was younger and my nephew lost it when I was in a van with him. He had to be warned the indicator was going to come on to turn and even when he was warned he still protested the sound of the clicking of the van.

It also makes me wonder about the people who lose it with road rage when someone doesn’t use their indicator – is there a possibility that a driver is weighing up whether to upset their autistic passenger with the noise of the indicator or someone outside the vehicle with road rage.

Mothers of autistic children know there are so many more things they have to pre-plan  and worry about with such unpredictability of knowing that no matter how much you plan there is still something small that may cause a national-sized meltdown.

So with this I just wanted to write something small – and not even close to measurable in honoring those that deal with this stress everyday. This is the weekend that I think of you, and consider the stresses that are on your shoulders, and hope and pray that there is someone near and dear to you that can help relieve some stress.

I hope you have a chance to take some time for yourself this week. Take care of yourself because there is so much on you. You aren’t alone.

Jen

The story isn’t over

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This is one of my favorite sayings to keep me going in a time of stress: “The Story isn’t over”. A lot of stress that we give ourselves or feel during difficult times is because we cannot see the light at the end of the tunnel. All we can see is the hard lemons that life is throwing at your face and there is not enough sugar in the world to make it sweet enough for lemonade.

There are times in our lives when stress piles on, or as the saying goes “when it rains, it pours”. There are too many things to process, too much pain to deal with or just a constant battle that we don’t remember being without.

One of my “raining and pouring” is that I was born with internal health issues that should have been fixed with one surgery here. Well, one surgery turns into more and then more and well… you get it. I have been advised that as much as I thought “okay, this is the last ‘big health’ thing I need to deal with my doctor explained that there will probably be more in the future. I am gearing up mentally for having procedures for the rest of my life in order to be here.

This is just one of many difficulties that affect my life. I know people who go through much more or just different challenges –  but sometimes it makes it difficult to see how you are ever going to get through the tunnel.

This is where it’s a good time to look back (not something that is usually recommended) and think about something difficult, and how it felt overwhelming at the time but you got through it. Had we known that there was light at the end of that tunnel maybe it wouldn’t have been so weighty at the time.

Sometimes the pain is so great in that moment and all you can say is “I survived that” but the point is: YOU SURVIVED.  Sometimes our burdens seem so overwhelming but the story doesn’t end there and it is good to remember that in a few weeks, months, years from now you can look back and say “I survived that”.

Whatever challenges, pain, grief, or difficulty you are going through – it’s survivable by you and/or others. The story isn’t over yet…

Keep going…

Jen.

You just have to go through it….

 

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After some pretty stressful times (Physically and emotionally) people are asking me how I am doing and I keep responding “fine”. Or I say “yeah, dealing with stuff but I’ll be okay”. This is the only way I know how to respond to the majority of people who surround me with their own version of support.

Honestly I have been dealing with a lot of crappy left over emotions of some difficult years (and possibly more to come).  I’m usually very social but lately I have needed to be alone. I just don’t have the energy required to hold up conversations like I normally do.

If I am in a conversation I try to keep conversations on topics that have nothing to do with me.
I did worry one person around me when they couldn’t understand some of my behavior. I explained I haven’t slept well (part of that has to do with the schedule that the hospital keeps you in – constantly waking you in the middle of the night). Not sleeping well doesn’t help you process your emotions clearly or help you recover your energy easily.

The thing is, I can’t escape going through these feelings. I can try to avoid them but eventually I have to face them and they aren’t fun. There are a lot of traumatic thoughts, and feelings that I need to own. I have expressed them like they are no big deal “Oh yeah sure, the doctor told me my chances weren’t good for survival and warned me several times that they may not be able to do anything for me would not have not long to live”.
I almost laugh at myself internally when I say it so casually when inside I know that I have avoided facing the aftermath of surviving that.

I went through a period of time beforehand when I tried convincing myself that I was totally okay with not surviving because ‘”I’m sure everyone will be able to step in for my children and husband and the community will come together and it will all be okay”. I know deep down it is not okay.

  • I know also I cannot avoid it forever
  •  I know I have to process those thoughts and feelings.
  • I have to acknowledge the considerable toll that has taken on my energy, emotions and how it’s changed me.

Our whole family and myself included are more than thrilled that I survived and am alive but there will be a time to really digest what really happened and the emotional toll that all those words and feelings took on me.
Yes I can focus on the positive – I do most days – but that doesn’t erase the burden of the stress that was placed before this.
Those feelings aren’t pretty – I can’t make them sound “good”, but they are feelings I just need to go through so I can focus on what’s next.