Facebook Live is my New Voice!

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In a couple of hours I will be going live for the first in the series on Telling Your Story on my Facebook Page. I’d love to speak with you there!

If you had asked me a year ago how I felt about being on camera, I would have baulked. Actually, a few months ago I would have said the same thing. I HATE myself on camera and I hate the sound of my own voice. I still do, let me tell you!

But with so many talks and interviews lately and before I knew it I’d said yes to doing a Facebook Live for The Mighty. I’ve no idea what’s come over me but I’m loving it. I still hate looking at myself on camera or hearing my own voice, but even with my brain fog and nerves and all the rest of it, I am finding that the live interaction on Facebook Live is right up my alley. I even tried to do one that wasn’t live (as in a podcast / Youtube video) and I just froze through the whole thing.

I think that talking to a live, interactive audience changes everything for me as I quickly forget the camera and simply talk to people. I share my story and my heart and simply answer questions and the next thing I know I’ve run over time. So thank you all for your support in these. Please feel free to watch past streams and sign on for new ones HERE.

I write memoir, and I speak and write on chronic illness, abuse, EDS and more, but finding my voice has been the overarching theme through everything as I have spent my life so far struggling with being squashed and bullied and silenced. Finding my voice has been one of the most liberating things in my life but it has also been the hardest. It wasn’t overnight, it wasn’t even over months. It was a long and painful journey that I am still walking. This adds such a richness to that story.

Nothing will replace the full books where I can speak about things that are too hard to say out loud, or are too long for a single sitting, but speaking live with people brings my story to life in a whole new way!

Just scroll down on the right here to Categories and click on “Facebook Live” to see other posts on this amazing platform.

To book a talk with me and discuss my schedule you can contact me on JPeaSmith@KingsRoadChronicles.com

Where you can find and follow Jennifer: 

@JPeaSmith

Losing Friendships Part Five:

Have you heard about the rule of circles? I Need to find out who thought of this and give them credit, so I will add that here if and when I can find it. But the theory is that when we have a change of path or a crisis, at the centre of the ordeal is the person most affected (or people but let’s stick to one person for a moment), and let’s say that that person is you. You have been hit by a bus and knocked down the mountain. You are battered, bruised and broken. You are going through some kind of crisis. It could be the loss of a loved one, a major physical change to your body or soul, it can truly be anything big.

screen-shot-2016-09-11-at-9-47-46-pmImagine a tight circle around just you. You are inside this circle and it is called the epicenter. You are the only one who is having the operation, moving overseas, has lost your job, or has lost your life partner.

Then imagine another circle around that. It is called circle one and inside that circle are your closest family and/or friends. There are less than a dozen people in this circle, and there may even only be one or two. It is the people that you speak to almost every day (or would if you could). They too are affected by this tragedy as they love you so much that this is hurting them deeply, they are aching for you and they are shattered and devastated. This is their news too. It is their trauma and tragedy too. Their son, daughter, mother, child, someone who means the world to them, is going through something huge. However, it is not happening to these people. They are not lying in that hospital bed and they have not received the tragic news about themselves.

Tightly around circle one is circle two. I am sure you are getting the picture here but before you skip ahead it is important to realize that these circles are actually many and they are tight. Those in circle two are also very close family and friends, but they are not in circle one, and they are not you. Your aunt and uncle adore you and you may see them every week, but they are not there every day. They too are shattered.

As you go out there are colleagues, friends and extended family. Many of these people may well be very close to you, they are not superficial in any way, but there are those who are in tight rings that are even closer to the epicenter; you.

This is the important part, and the basic rule that governs this system whether we like it or not is this:

“You cannot complain about the situation to a single person who is closer in the circle than you are! You may only complain outwards.”

Why? Because no matter how terrible this is for them, their fears, their grief, their loss, is not as great as yours or anyone closer in than them and it isn’t fair on you to add more to your load. You in the epicenter can complain about what you are going through to anyone, because they are all further out than you are. But if even your mother or friend who you speak to every single day starts complaining to you about how this is affecting them, then they will add to your burdens and worries. Yet if they turn to someone even a smidgen further outside the circle than they are, then they can dump all they like.

Two of my major health crises included desperate phone calls to the hospital where I was in critical care, where a close friend of mine (a different one each time) phoned me in tears to tell me that they were terrified that I would die and how awful their life would be if I didn’t come out of this alive. They sobbed and sobbed and desperately needed my love and support. In both cases I could barely breath and was suffocating under my own fear. I was not in a position to be helping anyone, let alone myself. It was highly inappropriate and selfish and each was a massive red flag as to how this was going to go afterwards. Both times I had to remove myself from the friendship because recovery was going to be long and slow and I needed all my energies to get better. I had nothing left to nurse them through their own fears for me.

Many years ago we lost a fellow parent in our preschool. It was a tough year as for one reason or another we lost three parents out of a class of only eighteen four year olds. It was heart breaking for everyone. I had spoken to the first lady who we lost many times, but she wasn’t my best friend. However she was very close to my best friend Janet and they were also neighbours. After diagnosis I never saw this lady again, but I spent many hours comforting Janet who was also a hairdresser. She worked out that she could help this dying lady by cooking meals and regularly doing this woman’s hair as it started to fall out and then grew back again. As treatment failed and we all knew it was going to come to an end, Janet would go in each day to cook a meal and to brush and wash this woman’s hair. She loved on her in so many ways it was incredible.

But Janet had three children of her own to care for and so when Janet was helping this lady, I would have Janet’s children over to y house to play. It was easy for me as I loved her children dearly but I still felt somewhat helpless until Janet reminded me that she couldn’t help her friend without me. On bad days Janet would come to pick her children up and cry for an hour before she took the kids home. Her job for her dying friend was to listen to her, cheer her up, love her, make her feel less rundown, listen to her heartache and put a meal on the table for her family.

Then she took that grief and heartache to me. It would not be fair on the dying friend for Janet to add to her burdens by telling her how had it was for her and how she felt awful every time she went into her house or that she had fears for her own life and children when this is so real and under her nose.

The reason that I am telling you this in the context of losing friends is that all relationships have their ups and downs and even the the very best of friendships are never equal all the time. There are seasons where I need to carry you and other seasons where you need to carry me. But when life changes so drastically that one of us changes paths permanently, the balance shifts. It is no longer give here and take there but it all ultimately coming out the wash equally in the end. That is no longer the basic premise underlying the friendship.

If I change paths I will no loner be there for you in the way that I used to. I may still see you at work every day but I no longer have the capacity to carry you through anything that you might be going through. I might still love you to the moon and back but if I am now living at the other end of the world or I have a new family to feed or the little energy that I have to spare goes on my spouse, children, one closest friend, or as often the case, to the appointments that I feel I spend my life going to. And that is going to hurt your feelings.

I get it, and makes me tremendously sad that you are going through that. But honestly, while I am going down my enforced or chosen path in a different direction, I simply can’t give you everything that I gave you before this happened.

Losing Friendships Part One:

When our lives go through any kind of massive change, it shifts all (and yes, I mean ALL) relationships. Massive change can mean many things for different people, but I think that we pretty much all agree that becoming injured or sick (or both), moving far away, becoming hitched (or unhitched), gaining a baby (one way or another) and losing a job or a loved one, rank up there among the biggest.

Human beings love status quo, they love continuity and stability, and they love connectedness and relationship with other like minded beings. These things are by no means selfish, they are about our primal survival, and are pretty well recognised as being universal, basic, life giving needs. The massive changes above are traumatic enough for the people who are directly affected, however they are also the arch enemies of these needs. They threaten relationships, belonging, stability and friendships, at very deep levels.

Throughout both my expat/TCK and Chronic Condition communities, I hear about the affects of these every single day. I hear the “why?” over and over again. Hiccups and changes in life happen to everyone all the time, but usually the massive permanent changes throughout a life can be counted on one hand. For these two communities however, they add a whole new level of extra massive changes, that be counted on both hands or more, and the effects therefore are far more life altering.

This is the basics of how I believe it works:

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Imagine for a moment a very steep mountainside (like this one I took from my hotel room yesterday!). Now imagine that there are many paths or roads that travel across the face of said mountain. Some do but many never intersect, and it is not impossible to climb the cliff face between the roads, but it is beyond the ability of the average person to do so. The perception of the world in general is that rightly or wrongly, the higher the road the better and moving left to right is better. So regardless of which road you started (or were born on), whether it starts high up or from deep in the valley, the world crowd is constantly moving left to right, on a slightly upwards trajectory, often looking up with envy, and down with distaste.

When two people are bound in relationship through a shared need, path, direction, desire we don’t realise how much of that relationship is bound to an implied loyalty that is way deeper and stronger than our professed loyalty. For each of us there is an implied perception that this relationship is “different” and “special”. That the things that others squabble over will have no effect on us. A promise that we will build each other up when we walk our path beside each other, that we will pick each other up when we stumble and that as we each face the pebbles and potholes of the same road together, our camaraderie is what gets us through. This promise is tested and won each and every day, as one of us stumbles, becomes ill for a few days and the other picks us up well …and as we both look up and dream of ways to climb up the cliff to the higher road, and seek hidden paths to get there, our bond solidifies. We share more than just where we are, ….we share our dreams for where we are going.

If we are the kind of person always looking for the secret shortcut up and the person beside us only ever watches their feet, one step in front of the other, then we will move on to find a different kindred spirit right? Two heads are better than one and all that and we both want the same thing. As for the person who believes that slow and steady wins the race, they are likely to team up with someone of like mind, so that they can encourage each other rather than be belittled, and enjoy the journey as it is, smelling the roses and making the most of life. We find and build relationships with those who’s values, philosophies, dreams and desires fuel our own.

But what happens when only one of us gets hit by a bus and can’t take another step for a while? What if one of us trips and falls off the edge of the road, down the mountain side and landing on a “lower” path? What if our team finds one of those elusive short cuts but it turns out that it is lined with barbed wire and one of us is not prepared to go that far as to take the risk of hurting themselves on the journey? What if only one of us gets hitched and starts to belong to another team as well so the pace changes, or they have a baby which slows our journey down?

Every single major change causes a shift whether we want it to or not. The relationship is changed one way or another and there is nothing that anyone can do to stop it. And when that happens to one of us, the other is forced to make a choice. They have to choose whether to climb down that cliff after their friend and also walk a completely different journey from now on. They have to choose whether or not to face the barbed wire and the very real chance that maybe only one of them will actually make it up a level and that the other could fail and lose everything. They have to face the very real possibility that a different path is not just a pipe dream or a dreaded “lower” path, but that if it becomes a reality, it will also involves losing the other people who have so far walked our same path and who suddenly don’t look so awful after all, that just maybe we do quite like being the tortoise rather than the hare…

Two PR management tools around Chronic Conditions.

img_2713Yes, that is a thing; having to manage public relations. I guess that we all do it to some extent; many of us present ourselves on Facebook only on our best days and so on. But for those of us with chromic conditions, not only is everything else in life more complicated, but so is our “public image”.

There is an article doing the rounds at the moment by a lady called Denise Reich, who has managed to capture and articulate what is being experienced by millions of people all around the world, every day. I have no doubt that she is now a massive role model and hero, and she deserves everything she gets for that. Thank you thank you Denise! There is no point in me trying to capture what she says so well, and I have nothing to add, but like so many others I am sure, it made me think about the things that I do in my own life to manage these things. I have not been purposeful as such, but when I read her article and looked back at what I have already pretty much done in my life, there are things that I do to manage how people perceive me and I how I cope with them.

Here are my two major PR coping mechanisms:

  • One: I have reduced who I have to explain everything to dramatically. For the most part I didn’t actually have to do anything. For the majority of the friends that I have lost in the year since diagnosis, almost all of them disappeared all by themselves. So I guess it was less about me cropping my social life than it was about me no longer chasing after people who clearly no longer want to be as close.

My life has become so limited, that I actually don’t have the physical or emotional energy to deal with people who have made it perfectly clear, (either told me outright or implied it), that they don’t want to have to think about me, be careful of me, thoughtful about me, or helpful for me. They want to be able to say and do whatever they like and if it affects me in any way then I am being selfish and I am the one in the wrong… So I deal with that by letting them go.

  • Two: Consistency is everything. One of the hardest things about Mah Eeds is the unpredictable nature of how each and every day is going to go. But where ever possible I try and be consistent so that I don’t have to explain confusing things to people all the time. It is sad that it means that I have to miss out on things that I could possibly otherwise manage, however the effort and pain of the interrogations afterwards is simply not worth it for me.

One example is that I can’t go far without a crutch or even further without a wheelchair. Neither of these are a choice for me, however if I am only going to be walking from the car to someone’s living room and back, then that distance can theoretically be covered without either. However, apart from the dangers in covering everything from steps to different surfaces, going around corners and negotiating moving objects like people and pets, I have made a rule to never go out in public without the protection of my crutch or wheelchair. For no other reason than on the few occasions where I have decided to “brave it” without them, all everyone wants to know is how I suddenly got better or healed, and the conversation no longer stays safe, “normal” and real, …but instead it concentrates inaccurately about me.

Managing the expectations of others is an endless, thankless task and no doubt this post will be the first of many

 

Fixes & Cures!

A few people have told me recently that they are on the look out for a way to help me. I REALLY appreciate that and feel loved by that 🙂 … and I have some very special friends who actually live in countries like China and India and have access to all kinds of alternative resources… as well as friends who live in the UK, the USA/Canada and Australia… so in many ways I am very spoilt. I also have a fantastic team of doctors caring for me, and we live in an era of amazing access to information over the Internet and I personally have a specific education that allows me to understand how the body works and many of the medical terminologies etc (Biochemistry).

But how does one search through all these ideas and should you suggest them to me or not?

So here’s the thing. There is no cure for EDS. It’s one of those things that one is born with. You can’t catch it from me, you can’t take it away from me (believe me, I VERY much wish you could!). But some people just want me to try.

Treatment for EDS is purely palliative which is a scary word for many people. Mainly because they associate the word palliative with dying. With terminal illnesses. And for most people this is the context in which it is most widely used. So that fear is understandable. But palliative does not only apply to cancer patients:

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When I was diagnosed I was told that there is nothing that can be done for me. This was not cool, and I was pretty annoyed, mostly because I had pretty much worked out what was wrong with me myself at the same time, and had already found a few sites on the web where people with EDS were supporting each other. I hadn’t read much on them because I didn’t want to go down some tangent and get myself worked up if EDS was not what I had, however, once I got the diagnosis I went straight home and resumed my research and there is a ton of stuff out there ON palliative care for EDS.

….. and there are a TON of ideas on exercise (or not), painkillers (which ones, when, for how long), how to get better quality sleep, how to preserve our joints and strengthen our muscles… and a list of helpful things that is pretty much endless… And many of them need trial and error, many work for some and not for others, some are applicable to my particular case but may not be for others and vice versa, … and so we have a real life puzzle or maze to work through.

But to do it, to know what works and what doesn’t and at the same time to conserve my time effort and money, we need to be methodical and we need to be thoughtful and purposeful. If I try two new things at the same time and feel better as a result then which one caused it? If I take it for a few days and it doesn’t help then why throw it out if it is a long term strategy? I need to take one step at a time, and follow each one through to it’s conclusion (unless there are adverse side effects).

Because this process is slow and exhausting and requires doctors and specialists and referrals and so on, there is much emotional and financial stress involved as well as juggling the different priorities and strategies. So we need to prioritise the things we try into those most likely to succeed, most researched, “most likely” in all kinds of ways, to be at the top of the list. This list is already pretty long, and so anything that my kind and helpful friends add, needs to go at the bottom of the list.

This is where this can come unstuck. People tell me as if they have single handedly found me a “cure”, and when I don’t respond with the same enthusiasm, they usually respond in a way that is some form of deep hurt and rejection, which isn’t fair or helpful to me.

To these people, please know that I am keenly aware that you are trying to be helpful, and that you really do care for me. But please also know that your suggestion that I try drinking 2 litres of carrot juice each day, starting from tomorrow, is a problem for me because:

  1. No matter how remote the chance is of it making a difference, I cannot start a new trial of anything while I am in the middle of another one.
  2. Both myself and the specialists and doctors who I work with are working extremely hard on my care, even though it is “just” palliative. We have access to an unbelievable amount of information in the world (and they have even more access than you or I), and so if carrot juice will “fix” me, then we will see that out there too and will add it to the list.
  3. When you bring me a solution that I “have to” start right away, there is an implication that I am not already trying something, …anything, …all the time.

It would be so helpful to me if you have a thought or idea that you think might assist me, if you first find out where I am and what I am doing, and incorporate your idea into where I am at, make it a discussion rather than a solution, instead of shoving it down my throat and being deeply offended that I didn’t take it on board.

I would love it if you would like to work with me as a team member, but please be aware that you are just that, a team member out of a massive team of online and real life support and research.

 

Disabled Friendly?

img_4736Living in Africa and needing disabled access to anything is a nightmare. We love to travel and have a lot of opportunity to travel with my husband’s job, but we are starting to learn that the words “disabled”, “access”, and so on, have completely different meanings in different places.

Checking before booking, the internet and photos on line should make this process much easier, but it doesn’t at all. There are places where disabled rooms are available and we have arrived to find that all rooms have the same flat wide path to access them, but the cruddy room without the views is the one where they have installed railings all over the bathroom… yet forgotten about the three steps to the front door.

There are legal codes, country codes, world wide codes, and then there are people who cut corners, make claims, and simply have no idea what they are talking about. Then there are the lovely people who tell us that they have no idea whether their place will work for us or not, ….so best we not come at all.

After two years, over a dozen international flights, even more domestic flights, road trips, boutique hotels and enormous cookie cutter hotel chains, we have learnt to expect nothing, to hope for the best, to pack and plan for any number of outcomes, …and to do what we have always done in life and simple “wing it”! I never leave the house without my crutch and we usually take the wheelchair. We take our own long life food and drinks (in case we can’t go anywhere and there is no room service), kettles and hot hot water bottles, my own pillow and blanket, warm clothes, every kind of medication, laptop and phone, plus a good book to read.

The above photo was taken out the door of our hotel room in the middle of Lesotho in June this year. It zigs and zags it’s way up from reception (hidden by the hill) this side of that big river which loses perspective a bit, …but if you see the road by the river and note that it is a two way road, you can see how far up we are, and how reception can be hidden this side of the river (and how high it is). There is absolutely no way on God’s green earth that I could get up or down this path and all these steps. Thankfully we were able to drive around the long way across the donkey paddock around the back, and that we could do it because we have a SERIOUS 4 wheel drive, … even a small one would not have been able to drive up over the rocks and ditches. It snows mid winter there and so if the snows had already come then even with our 4 wheel drive we would not have had access.

I actually don’t think that everywhere can have access for all people, it simply isn’t practical without pushing prices through the roof and making places therefore unobtainable for the financially challenged, however it would be great to have some kind of idea of what to expect?

My blog on all things writing my story and my book is here and all things arty and creative are here. I’m on TwitterFacebookInstagram and Pinterest too.

RePost: How Chronic pain feels

This is a fabulous article that I read a while back from a fellow EDS sufferer. I’ve been to reblog it for ages. I will leave the rest of the words to her 🙂

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https://jboccupationaltherapy.wordpress.com/2016/02/27/how-chronic-pain-feels/comment-page-1/#comment-703