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In The End, We Are But Alone
Written by Sean on Monday, May 4, 2009
One of the most common reactions to people who have BIID and find this site at first is relief at the realisation that there are other people out there feeling so very similarly to what they feel. Some have pretty much told me "get out of my head", when they read some of my posts. No, we’re not alone. And yet, we’re so alone.
I don’t know how many times I’ve told people "You are not alone". Dozens upon dozens of times, for sure. Some people never write back. Others exchange a few notes and disappear. And others become regular correspondants. They all pretty much tell me it was a huge relief for them to hear from me that they weren’t alone, that I had a pretty good idea of what they were living, what life was like with BIID.
And it is true. We are not alone. There were people before us that suffered in silence long before the internet. They weren’t alone, but didn’t know there were others, in effect, feeling alone. Then there was the internet and a slow growth of awareness. When I first got on, I discovered that there were other people like me, only they needed to be amputees. Then I found a couple people who needed to be paralysed. This goes back nearly 15 years!
In the last 15 years, I have encountered more and more people who needed to have a physical impairment. A lot of people who needed to be amputees, but also people needing paralysis. People needing blindness. Or deafness. This site has witnessed steady growth in readership and in participation. I am humbled when I realise the large number of people reading this site regularly.
And it was so helpful for me to realise I wasn’t alone. And I think it is helpful for others to realise that as well.
What it did to me was allow me to start accepting that I had BIID. It wasn’t just a weird thing I came up with in a flight of fancy (well, it is weird, but…). It was a real condition. And if it is real, it is easier to accept.
It also allowed me start talking about these emotions with other people who really "got it". It felt validating, but more than that. It gave me perspective. It afforded me the chance to think more about BIID, what it meant to have it, its impact on me and how I could alleviate it as much as possible. It was helpful to me in the "first stages" of acceptance and dealing with BIID.
And I still find solace in corresponding with all of you folks. Even after so many years, you manage to bring up new points. You offer support. You offer to listen to what I have to say. You read my whinges.
So why do I do I feel so alone? I am alone in my family. They know about BIID. They accept. But they can’t fully understand. That isolates me. I am alone in society, fighting doctors to be able to get surgery. You’re there, thousands of miles away, but you’re not HERE, right here, sharing my spot on the coal face.
Sometimes, I feel that even if you were right here, right beside me, we’d still be alone.
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10 Comments
@Sophie@Sean. You two are lucky to have met. I dream of the day I can meet another transabled person face to face, give a big hug, tears streaming down my cheeks, not feeling alone at all.
I’d live to be able to meet up with others.
I know of another two in the North Island of New Zealand, where i live, but none in the South Island where it’d be a lot easer for me to meet some one.
Hugs and tears would be right tho, lol!
Meeting another TA person, and especially one of you great people, would be overwhelming to say the least. I feel like it would be like meeting a long-lost brother or sister. We probably share much more than we’d ever guess. I sincerely hope this happens in my lifetime.
Finding this site, although I don’t have the time nor internet access to participate all that much (sorry!) has been a definite positive in my life. transabled.org is literally my first exposure and my proof that I am not the only human being in the world who feels this seemingly insane need. You can, I bet, imagine how much that’s worth.
On the flip side, BIID is very very lonely. My partner doesn’t know I have BIID. I presented to him as blind because, functionally, I was living as a bright person when we met. Will he hate me if he finds out that I can see? Will he feel disgusted? Betrayed? I don’t know.. but I do know I’m too scared to change things now, to rock the boat by telling him. And having to isolate the part of me that is on my head 23 hours a day from him… is as lonely as it gets.
8 On 12 May, 2009, Lane said:
@Lil Managing my BIID with my wife has been really hard, but it’s so important to have someone that cares about you for you. The fact is, from their perspective, there is an element of deception, but you have to communicate how deep the truth about yourself goes. It will either take time and be hard, or give you closure and an opportunity to find someone who will love you for who you are - disability and all.
Please try to move past the fear and to a place of mutual understanding. It’s taken us a decade and we’re still working on it, but it’s so worth it.
I still get lonely - I don’t think a non-BIID person can ever truly understand, but I know that I have someone that really loves me, so it makes it make the effort worth it. I’m glad that (most) everything is out in the open.
That, and you’re not really alone. We’re certainly here for you as you work through everything…and we absolutely understand.
I have to agree with Lane. There is nothing so comforting as having someone love you for who you really are.
I’ll second (or is it third?) that. I’ve been so muh happier and relaxed since I told my husband about all this BIID stuff. He’s been so supportive and I can’t believe just how OK he is with everything so far.
He’s actually been more cross about me lying to him about related stuff (such as telling him I’m in one place when really I’m somewhere else presenting as paraplegic) than about the BIID.
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1 On 4 May, 2009, Sophie said:
I’m “almost” here Sean I might as well be a thousand miles away though given the issues preventing us from meeting up.