At the end of this 18-month period, I've now completed the two most important jobs of my life. I've cared for my mother during her final months, and I've written a book about that experience - and about the the experience of growing up with (then undiagnosed) autism.
With mum's passing, there's no one left. My brother - my closest-living blood relative - might as well be a stranger I've never met. I've honoured mum's memory in words... and there's not much else I can do.
I live alone, with my cat. I work with autistic people.
Apart from that, I go through the motions of a life. I pay the bills, I eat, I sleep, I get up in the morning and go to work, I come home, I watch a movie, I go to bed... I start again.
I'll be 60 next year. Life has largely passed me by. I don't really have anything left to do. I don't want to travel any more. I don't have anything I'm burning to learn. I don't have anything left. If it wasn't for Daisy, my cat, I'd probably take myself out of the picture permanently. It would be so easy. And such a release.
But she's here. And she needs me. So I must be here, too.
Until I'm no longer needed.
I count my remaining days with hers.
I for one am truly glad you posted it. This world needs more humour, not less.
You did right lad.
I found them funny too, think they didn't upset people because of something hurtful you said but because some of the problems each was about sounded painfully familiar and we can't change them.
Wished we could do something that shows more convincingly how much you mean to people. You certainly do on here, your posts mean a lot to me, they help to understand myself and other people and to feel a little less alone, and I think it does the same to others too. Think you probably also mean a lot to people in real life, those you work with, their families... They just don't tell you so much, because they can't or they don't know about you as an individual. Try not to see the value of the work you do through the salary lens. Somehow it seems to me that you are not really lacking purpose so much but it's rather that you are struggling to see it and it is something important for you while lots of people have a lot less purpose but it doesn't seem to bother them too much. I can identify very much with that, not sure what helps though. Sometimes things happen that, looking at them at hindsight, have helped a lot, but it's difficult to know beforehand and often you would not want to make them happen anyway. Guess seeing the GP and whatever counsellor they sent me to or pills they put me on was not one of those things. Doesn't mean that it wouldn't help you, it may be worth trying but if it doesn't feel right it simply may not be right and have the opposite effect. Guess you may be a little sick of suggestions that you have either tried and they didn't work or you don't have access to them or they are not your cup of tea at all, but maybe making someone elderly who is lonely feel a little less lonely would be something to try? Some charities try to organise people to do that, visiting someone at home for an hour or two each week to give people something to look forward to, not sure if there is one in your area but maybe someone from AgeUK or so would know. Maybe it's not your sort of thing at all, so please don't feel misunderstood and more upset if that's the case, just ignore it and see it as a compliment because based on your posts I think you would be good at it.
Please take care Tom.
I was so sad to read this Tom, you are a remarkable person.
You have, as others have said, lost your sense of purpose, you may be burnt out from it all.
Give yourself time, it will take time to replenish yourself, see if you can get some grief counselling.
Please give these a go to see if they help you and persevere with them because at first they won't feel that they do.
Each morning think of a couple of your purposes for the day ahead - your cat needing breakfast, think of one your clients at work needing your help and what you have planned for that person, think of their parents trust and gratitude - how will you praise your client to parents that day - just one or two per week and it might bring returns back from the parents but then they are maybe so wrapped up in their cares they might not think to say anything but this might prompt them.
At the end of each day think of 3 things you are grateful for, even if it is only just 1 to begin with and then rises to two then three - a welcome from Daisy, you made a connection with a client, a client achieved x, a parent thanked you, your own front door......
So tonight, if you can, try to write down what things you are grateful for and get this ball rolling and your purpose back in your life.
They helped me at a time of loss, at first they seemed useless and it was hard to think of even one - it didn't rain today... I was just going through the motions but it was working somewhere inside and I was pleased when I found two and then got to three and after time I didn't need to do them anymore, but you do them as long as you need and have faith in yourself coming through. I hope you can do this and I hope it helps.
Watch or read A Streetcat Named Bob.
It may be that you need time to process it all and come out at the other side.
I will need you around in time to come when I am in your position, please be there for me.
that's a shame, I've not seen it and I won't look for it then.
Thanks so much for your thoughtful response. Actually, those things you say are things I know I should be doing - and I do do them. Sometimes, though, it comes crashing down. But yes... I'll pick myself up again with what you say.
I've seen A Streetcat Named Bob. Great little story. I often think that Daisy came into my life at an important time. If I didn't have her to be responsible for after mum passed away, I could easily have gone off the rails.
I can't really see a way through to the other side of my current way of life. I can't really earn any more at the job I do, and that makes it impossible to move. But I take it a day at a time, and try my best to look forwards. I have a lot to be grateful for, really.
Thanks again. Being here helps to keep that faith going. Sometimes, though - as the other night - it can backfire.
It’s funny, I’ve just been writing about friendships. I started to cry, not because of my realisation, but for the lost years, all those years where I was pretending to be a friend, pretending to be normal, not even having a clue what normal was.
My realisation tonight, was that I don’t like having friends. In fact I hate it. I have friends on here and friends at my autistism group and I have friends at my trace your family history group. But that’s how I like my friends. In their place. I don’t get that whole nt friendship set up. I don’t like it, I never have and I never will. And the truth is, I never wanted ‘friends’ in the first place. That’s not to say I don’t like being around people. I do, sometimes. But only when it’s for a good reason to me.
When I first started to cry. I thought it was because I had suddenly realised that it looks like I’m going to be spending the rest of my life, with just me, my dog and cat. But then I realised I wasn’t crying about that. I was simply crying for the lost years.
If they are the ‘lost’ years, that means I’m no longer lost. And it’s true. I’m not. This realisation is one of the best things to happen to me. I can now do away with all the ‘friends’ and concentrate on my real friends. You guys on here and my other friends that I mentioned.
Tom, you’ve experienced three great losses, in a short amount of time. They are huge. They really are. As well as realising you’re autistic, these are monumental losses. We are not always aware of what we’re feeling or why, and that’s no surprise, after a lifetime of thinking we were wrong. But we weren’t wrong and there’s nothing wrong with us, or the way we like to live our lives.
You're ok Tom, this is grief and you deserve this time to process all these losses. I promise you, you give yourself some time, some tender loving compassionate care, and when you’re ready, you’ll start to come through this. And we’re all here to hold your hand, put our arms around you and tell you, it’s ok, everything’s ok, it really is.
This is grief my friend. And quite rightly so. But you’re not alone. I promise you that. There is more than just Daisy who needs you. I count you amongst my most cherished friends. Not the nt type of friendships, that wear themselves out and do what they do, this is real friendship. I feel your pain Tom. I still miss being a child. A little girl. Maybe before I went to school. Change is so hard for us guys. But more so because we’re trying to squeeze ourselves into somebody else’s idea of how to be.
Please be kind to yourself, gentle, compassionate and loving. Is there anything I can do to help? Anything at all? Give yourself comfort. You don’t have to do anything you don’t want to do and do whatever you need to do to process, grieve and gather your strength back up, in your own time, and step into the new world. Our world. No more pretending. No more fitting in. We’re going to be loud and proud, or maybe, quite and proud, but either way, we’re going to live our lives our way, whatever way that is. I’m glad you’ve got Daisy. I can’t wait to get my little puppy and kitten. My two new buddies. Hang in there Tom. Give yourself permission to grieve. Are you speaking to anybody about this?
You don’t have to pick yourself up Tom, you’re grieving, it’s ok. There’s time a plenty to pick yourself up. As NAS said, try some grief counselling and even if it doesn’t seem to work, just give it a go. I started to take the anti depressants about 6 weeks ago. At first I thought it was crazy, but then I realised, I really did need to try something. I’m still not sure what they’re doing, but I’ve had several people tell me that they stopped taking them because they thought they weren’t doing anything, yet the people around them said they were having a positive impact, but the individual couldn’t see it. That’s kind of how I feel, but even though I don’t like taking medication and they don’t seem to be doing anything, I’m willing to hold judgement and just keep going with them for now. Maybe we’re not supposed to feel ‘better’. There’s one thing for sure, I’m beginning to process and understand my emotions a lot more, which is a benefit. I think what I’m saying is, we don’t want to suppress our emotions, we’ve been doing that for too long and I think the tablets and the support I’m getting, isn’t supposed to ‘get me back on my feet’ but to enable me to process my emotions, feel the sadness, let the tears fall, and when I’m good and ready, I’ll make some moves to creating my future. I don’t think we’re supposed to feel great when we’re grieving so much. But as is clear from all these loving people, you have so much value. Let us help you. We all need some support through these difficult times. I think it’s important to get some support though, it helps, even if it doesn’t make us feel better.
As somebody mentioned, why not start up a support group. I’ve been alluding to this. I’ve set the ball rollimg to start up support groups offering pre and post diagnostic support, and more. It’s not a unique idea but it is, and there’s too much to say here, but I’m counting on you to be part of this. We’ve got a lot of value to give, but first of all, we need to look after ourselves. I’m still in this grieving process, ups, downs, sadness and all sorts and sometimes despair. But when I’m feeling despairing, I come on here and you, always make me feel better, like I’m not alone and you help me to understand myself better. I hope we can do the same for you. (((((( Group hug ))))))
BlueRay said:My realisation tonight, was that I don’t like having friends. In fact I hate it.
Thanks for those words, BlueRay. And yes... I identify with this. For years now, I've found friendships to be vaguely embarrassing. I think that in part it was to do with such low self-esteem that I couldn't understand why someone would want to be friends with me, anyway. But there have been people, over the years, who've clearly wanted to be friends with me: who've invited me out for drinks, or to their place for a meal. And I've never, ever - not once - felt comfortable with it. In fact, in each case I've let the friendship slide: peter out by not maintaining it. In some ways, I envy people like my brother: loads of friends and an active social life. But then I think 'No... I simply wouldn't like a life like that.'
In some ways, I stick by that final part of my original post. I think if anything happened to Daisy now, I simply wouldn't know what to do - and I don't think I'd want to go on. I once said to a therapist, who asked me what I would do once my mother was no longer around, that I would probably just give everything up and go off to a war zone or a refugee camp somewhere. And if anything happened to me in the process - if I was to be killed in a bomb attack or something - then so be it. I have no one in my life to be responsible for. I have no friends. It would be just me. So I'd put my life to some use somewhere, helping the desperate. And I really wouldn't worry what happened to me.
Yes... I stick by that.
Oh Tom, you have got friends and bloody good ones. When we’re grieving, we don’t see straight. We see through our grief and of course, we can see nothing good through those eyes. And that’s ok. We deserve to grieve. God knows we’ve got a lot to grieve about. Rightly or wrongly, good or bad or whatever, we all know deep down, that had we been diagnosed when we were younger and given the proper support, our lives would have been different. And we have to allow ourselves to grieve that loss. As well as all the other losses. But we didn’t lack self esteem. We just thought we did, because we couldn’t do what others could. We couldn’t do that whole friendship thing and that’s bound to cause a lot of confusion and self hate in us. But the truth is, we don’t want those kinds of friendships and we don’t have to ha e them but we’ve got each other. We’re all friends on here and some day we’ll meet up. We’re free now to stop comparing ourselves with nt’s. There’s nothing ‘wrong’ with them, but if we compare ourselves against them, we will come out losing, but only 100% of the time. But we can enjoy friendships with each other. That’s not being exclusive or anything but if an nt had the choice between living amongst nt’s or nd’s, they’d choose nt’s because that’s what they are. And we’re who we are. When I’m with my autistic friends at the support group. I feel completely normal. To the point that I sometimes think I’m making all this autism stuff up. But of course I feel normal, because I’m finally around other people like me. I need your friendship. I don’t need you to do anything other than to continue to be yourself. You have to give yourself time to grieve. Get some support with that. I think what the anti depressants are doing for me are dumbing down my emotions to a level I can cope with them and therefore process them. My dad is currently undergoing treatment for cancer and I’m terrified of him dying. We don’t do well with change, and change accompanied by loss is more than we can bare sometimes. The tablets are helping me bare my loss and process my grief. I don’t know how long it will take and it doesn’t matter. When you surrender to it it doesn’t matter how long it takes, because you know that when you allow it to process, it moves on through you. And the sun will shine again. Right now you need some support. The support I get from the well being officer is also helping. She was suggesting all these things for me to do. All great ideas. I could see they would help. But the truth is, I’m tired. My body is processing a whole load of stuff and I’m allowing it to happen. Be kind to yourself. This really will pass. But it’s deserves respect. You’ve lost so much. Spend some time with your mum. Hold her tight and let her hold you. Because you know, I can’t always hold my son, but I hold him in my heart and I know that that is more than a physical hug. I might not be able to express my love in the nt way, but I do love. Greatly. I’ve got something for you to do, when you’re ready, when I’m ready and I’ll be better than anything you’ve done before and you’ll love it. I keep alluding to this, and not really saying anything, but that’s because I too need some time to just rest, look after myself and allow all of what’s been and gone to also leave me. Completely. We’re new people now. We’re who we were born to be and we’re gatjering in numbers. You just need to take some time and when you’re ready, we’ll be getting that book published as well. That’s not a loss. Just a temporary set back. Maybe you just need to digest what’s in it. Have some time with your Mum. Allow yourself to grieve but get some help. It helps keep one foot in the here and now. And of course, we’re all here for you.
p.s. we don’t have to have nt friends anymore but it doesn’t mean we can’t have friends, just ones that understand us, including our pets.
I hope nothing happens to Daisy and that in time to come you find some purpose that puts a spring in your step.
But right now, you could be grieving, I could be totally wrong, but what if you are? there's no right or wrong to grief, no timescales, maybe you just need longer on this one, it is quite a finality and life changing. it's a lot to come to terms with. Be strong for you and for Daisy.