For a number of reasons that are long and complicated and so on, I have never felt that I truly belonged anywhere until recently. I have felt like an alien, a visitor, an outsider, a leper all my life. I often feel as though I am invisible and that even down to my earliest childhood memories, I have watched the world around me as if I am looking in through a glass wall, as a silent observer on the outside. I have always had a deep deep desire to belong somewhere and I have spent the bulk of my life thoroughly confused about where I am from, where I belong, and looking for my place, my belonging, my world, and my tribe.
It has meant that in the analogy of the mountainside of life in Part One (which has nothing to do with religion by the way), I have just simply been lost and it has been tough on many levels. But I am finding myself belonging to a few new paths and tribes that I would never have imagined even existed before, and it has given me a great deal of peace and comfort. One of these tribes are the ExPats & TCKs, but another is alongside the amazing group of men and women who belong to the Chronic and Disabled Community.
My story is different to many of them as I have never been healthy so I don’t have much of a “before and after” story with a single major disability or injury incident, but because I spent the first half of my life to date able to come across as healthy, I never considered or understood myself to be disabled either (and in fact physically I was able to achieve a lot). But it was killing me and as each added part of my body gave out and there was nothing left to compensate and my brain fog and fatigue got so bad that I stopped functioning altogether, people slowly started to pull away.
They got sick and tired of me being sick and tired. I was always a helper and caregiver and as I could no longer fulfil that role in some people’s lives they quietly moved on and found other to carry them. I did work out that I had boundary issues and that I had always allowed people to use me and take advantage of me, so when the first lot started falling away it was actually a huge blessing.
But when at last I was diagnosed with EDS (Ehlers-Danlos Syndrome or Mah Eeds as we call it in our family), and could no longer go anywhere without a stick or a wheelchair, all the people that I knew would have felt the shift in the relationship. Some leaned in and became closer to me than ever, as for whatever reason they experienced me as even more on their path than perhaps before, but others leaned out and ran for the hills. No one ever actually said anything and it is easy to assume that those who ran are the baddies and that those who came closer are the goodies, but that is a discussion for another day.
For the purposes of this discussion, why did a lot of my friends run, or at the very least pull away? In the analogy of the mountain side and the various paths we walk along, I had alway been assumed to be “healthy”; I could walk, go for walks, go shopping, participate, go camping, all those kinds of things. The fact that I was totally exhausted, often damaged myself and was always too hot or cold was something to laugh at. They never thought that they were being unkind I am sure, or that my feelings were hurt, but the more they mocked and joked the more I hid my symptoms. I would wear long sleeves to hide my bandaged wrists and ankles and when I fell and hurt myself I would get up and pretend that I was fine. I made excuses as to why I couldn’t swim or go somewhere.
At the time I could not understand why or how, but it turns out that I was in fact walking on a path all my life that I did not belong. I was walking on a path that “healthy” people take, and I was constantly behind, awkward, struggling. In my effort to convince them (and myself?) that I belonged there, I worked twice as hard and I totally overworked myself in the fear of collapsing and never being able to get up again… I did more and more damage to my totally falling apart body and never got the rest that I needed.
So just over a year ago when I was diagnosed, for me my health made sense for the first time ever. No one can fix it but I now know how to take care of myself and get the rest I need. It is too late to get walking again, but at least I am living a physically congruent and transparent life now. It is simply wonderful for me, on all kinds of levels, but for those around me who partnered and walked beside me, who had no idea how bad I was or what I was trying to do to keep up, …in their eyes I have fallen down the mountain to another path. They don’t know what to do about that. They look down at my path and feel that for whatever reason, they themselves can’t join me down there. They have their families to care for, they need (rightly or wrongly) to still go camping and shopping and for long walks around the old neighbourhood. And I can’t do that with them any more. They can only walk beside me on my path, and that requires them giving up theirs.
It is as simple as that. I can’t walk their path, I shouldn’t have in the first place, and I never will again no matter what I do. I wasn’t hit by a bus like someone who goes from being a fully “healthy” person to a disabled person overnight, and for them it is a thousand times worse because they did walk on a path before that they were entitled to. There isn’t the relief that I feel that I no longer have to pretend to be someone I am not for fear of being told that I am slow or lazy, or being laughed at because I am weak and/or stupid for being too hot or too cold.
I am so inspired, encouraged and uplifted every day by many in my new community. I cannot tell you how honoured and privileged I feel to be a part of such a rich, diverse and brave group of people. It saddens me deeply that every single day I hear about the losses of relationships that they face over and over and over again. The impact on me is that I feel angry and hurt and resentful and we all talk about how shallow and fickle these people must be and how we are better off without them.
But as I sit in such a lot of pain from so many people, I feel that that is not as helpful a solution as we would like to think it is. Rather recently it has helped me to see the situation through their eyes, and the dilemma that they are faced with. Not because I am noble in any way, but because I think that this is true, and that they aren’t such bad people after all.
The reality is that we are all mostly uneducated on disabilities, other countries, what it is like to walk a different path, and no matter how much social awareness there is we can’t all absorb, retain or know everything that there is to know about everything. The reality is that we all live in fear of bad situations rubbing off on our families and our own children, and we all want to live as best a life as we can. I don’t want to take anything from how much it hurts. Regardless of intention, the impact on us is still the same, and sadly it is usually made worse by the fact that those who dump us totally believe (and often tell other people) that the fault lies with us.
The other reality is that the world is full of shallow and fickle people, but we are rarely dumped from deep, long and meaningful relationships by people who are either of those things. I believe that we are dumped because we are now on different life paths and it is easy to forget that that puts them in a very difficult position as well. It is easy to assume that those who love us will jump paths with us any time that we do, but none of us does that for anyone and neither should we…
Many people simply don’t have the skills, time, resources or abilities to simply jump paths with us when we are hit by a bus or pushed off our paths down the mountain. It leaves them in a guilt ridden dilemma that is extremely hard to articulate and I think that the decision not to join us is so judged by the general public… that they avoid making it, struggle to keep a middle ground, become resentful and the ultimately blame us for those feelings which gives them an excuse to choose the path that they were already on and to leave to “someone else”…