Some observations on life after SAH - By Neilhapgood

[Karen]

(Members note - Moved to forum from homepage by Admin; therefore please post any replies to Neil)

Some observations on life after SAH - By Neilhapgood

OK this isn't going to be easy! I am going to try and write about stuff I so barely understand myself, however I don't mind trying within this site as I know I have the most sympathetic and understanding audience possible!

One thing I now really struggle with is the concept of self and self confidence. I have always had a very fortunate life in terms of work, family, friends and general quality of life. Before the SAH I was very much of the opinion that life is what you make it and therefore any successes I had were purely down to me, so for example if I was having a really enjoyable day at work I would draw great strength from this as I was enjoying work because it was my thing and I was good at it. I essentially lived only in my 'conscious mind', this was probably compounded by being a bloke!

However I now feel as though I have a far greater sense of how complex we really are and we obviously don't know how this stuff works, things like, for example, the interaction between your conscious and sub-conscious, the role of a soul if we have one and what actually made us the individuals we are in the first place. Pre SAH if people raised these questions my opinion would normally be well we don't know so lets stop thinking about it and get on with life, after all life’s simply what you make it.

Now however I don’t seem to be able to just be normal, I don’t seem to have any consistency in terms of how I react to situations, without an SAH we are all prone to good days and bad however there is still a general consistency in terms of how we react to things and this is such a natural process it feels like you. Now I don’t really have a sense of self and feel as though I am only made up of the neural pathways in my brain. So if I am feeling good I don’t draw strength from this as a person, I just think that the brain is activating a chemical that makes me feel like that.

I feel as though any achievements in life have simply been because I was fortunate enough to have a start in life that allowed me to develop neural pathways that allowed me to be confident and capable in most aspects of life and therefore follow the paths I wanted to, and don’t have the sense that ‘I’ (in what ever form this may take) achieved these things.

I do consequently feel slightly lost as to how to find happiness and confidence in the future?

If this makes any sense to anyone I will be amazed! I am not expecting answers, just wondering if anyone else can relate to any of it?

Ps – thank you so much to those who commented on ‘my story’, hugely appreciated x

[Lin-lin]

Hi Neil,

We haven’t chatted before. We live close to one another.

I must apologise for not having greeted you earlier. Unfortunately, I have been in a bit of a trough of late and I have barely had enough energy for myself.

Your account of life after SAH is precisely as I feel. I am receiving help from Headway where I receive group counselling from a neuro psychologist.

Headway is a charity for people with brain injuries. A SAH leaves a brain injury, (which I did not know until around seven months ago,) and reading about brain injuries has helped me.

I know exactly what you mean about self identity. I do not know who I am anymore, but am able to describe the old me very well. I previosuly believed that everything that I had achieved was through my own hard work and determination. Life is what you make it, blah, blah, blah.. (!!!)

In hospital, I had the attitude that the SAH would not beat me. Consultants told me that what I had experienced was significant and that there may be emotional fall out. I did not believe them. They did not know how ‘strong and independent’ I was.

I cannot explain why, but I have changed lots. I now dislike large crowds and avoid the centre of towns as much as I can. I struggle in the company of people who knew me before my SAH. Fortunately, I have a family and a boyfriend who are very supportive and I rely upon them lots. I can sometimes feel under confident and anxious. I feel like a diluted version of my former self and it often saddens me.

My neuro psychologist encourages me to think how the SAH has brought some positives. I concede that there are some. I am far more empathic; I appreciate how much our circumstance and environments affect us; I shun materialism and shallowness and I am more understanding. In a lot of senses, I am a better person.

This flatness that I feel of late is a recognised symptom of having a brain injury. It is quite ‘normal’ to be experiencing it. Just knowing that helps me and I hope it brings you a similar comfort.

Lynne

[SarahLou]

Hi,

I'm new to this site,I've been watching from afar for a while. I've finally found the courage to write something!!

Reading some of your comments is like reading my own thoughts.

It's been nearly a year since my SAH and it's still a huge learning curve to me. I'm not 'me' anymore,it's all about acceptance and I'm not quite there yet. I too can't cope with crowds, busy shops etc,too much noise and too many conversations going on around me.

Other people just don't understand,but you guys do.

Each day is a new day and I know that I'll find my way back on track oneday.

So,thank you BTG for the life line you've given me,it's so great to read that all I'm going through is normal,whatever normal is!!

SarahLou Xx

[Anya]

Aw SarahLou hello...delighted to welcome you in. Now don't be shy...it's difficult to pluck up the courage to post I know. Before I joined I had been in direct contact with Karen who introduced me literally as 'Welcome Anya'...I fell to pieces & ran a mile!!! or as fast as my legs would carry. It then took me several months after to join.

Now to the subject at hand!

O’h yes Neil I can relate to this philosophical debate! You explain it well. Now let me try to answer and compare it to my experience.

I was blessed with a good childhood and parents who drilled in to me a moral compass with a strict set of standards and discipline. Comparably like the Waltons meet theVon Trapp family and we each knew our place in the family. This made me rebel to be different but laid down firm foundations in who I was. I felt a close connection with ‘soul purpose’ and I skimmed along enjoying my nursing…feeling whole, spiritually enlightened and rewarded on a profound level. I think nursing does this. Then I married and lived in Sweden several years, had a daughter who added a momentous change to my life, made harrowing when I divorced her swedish father to return home as a single mother. Still working but now life included a daughter (OMG!!), psychically my life irrevocably changed. The flame in my soul went out!! It was as traumatic a memory as that too!!

Then I had my sah, when my daughter was 14…always an easy placid child thankfully, but I became a hopeless inert, a burnt out mother for a couple of years with no direction while struggling for direction and recovery. I had a psychotherapist friend suggest I would make a good counsellor. I thought it pretty straightforward to learn the skills and theories, besides psychology was me! Well, I never anticipated what a profound impact it would make. It stripped away the barriers and many masks I had been wearing, but enabled me to reconnect and know myself.

Now, my daughter is all grown up at nearly 21 and attends University. The weight of burden is lifted and my mindset has shifted. I am nearly back to my old self in that I think my sah reinforced certain beliefs I held about life and my philosophical approach is intact. O’h then again, my new mantra is about “making your life count!"

[Winb143]

Neil Hi,

I come from a big family, My Dad and Brothers always sang in pubs.....Women/Wives always indoors ......and Parties after pubs turned out mainly round Mum and Dads house.

When I had my SAH I saw my Mum, Dad and Brother (deceased).....I do not know if I imagined it but it made me happy to hear my brother sing to me while my mum would not talk to me, she kept pointing to my hubby and daughter............My Dad had a net over his face and kept looking at me and saying "Shhhhh dont tell ya Muvver and laughed.

I felt so happy to see my family so I cannot feel sad, until I saw my Sarah and hubby Al....I feel so bad for what I put them through.

I cannot walk very well but I am getting there...and I feel so happy to see my Husband and daughter the rest of Family again .

Keep smiling and things will start looking up ...sing a song ...treat yourself....What I am trying to say is if possible try and have a

smile on your face even when you feel down, hard I know, I get down but crying makes my eyes red....lol

Hope you feel wonderful soon Neil

Regards

WinB143 x

Edited August 4, 2011 by Winb143

[Riane]

Oh my goodness Neil, do I ever know what you mean.

I was trying to explain the loss of concept of self to my husband last night and I don't think I suceeded. We had just watched the Jill Botte-Taylor talk about her experience with her stroke/hemorrhage (click here to see it, only 18 mins long). I turned to him and said, "I am no longer the choreographer of my life".

This statement of hers spoke so deeply to me because as a dancer and producer of shows, I know what is to be a choreographer. And, like you, pre-SAH I was a confident person who determined her own life. I had a very positive out look on life and was as successful at things as I wanted to be. I always looked at the glass half full. Even if it was empty it just meant I could wash that one out and get a new one.

But, now I feel that all the "landmarks" of who I am/was have been WOOSHED away, like the tidal wave in Japan after the earthquake (back in March was it?). I watched a video on YouTube, back then. The power of nature to destroy all that humans had built was immense and awe inspiring, and frightening.

I feel that something akin to that has happened to me. All the structures I built around myself/for myself and those I relate(d) to, have been crumbled into a puddle of debris. All my roads, pathways and directional signs to who I was - washed away.

Now what?

All of my life I have been graced with a deep feeling, a deep knowing that all is connected. Each of us is connected - by energy, by our souls, by The Creator, by whatever words we want to call it.

Somewhere along the way of my SAH I lost that connection. I lost my deep knowing. It used to be that when I felt despair or sadness I would reach out with an inner voice and call..."are YOU there", and I would be answered, in one way or another. Since my SAH there is no answer. There is only silence.

I wish that I had had a more profound spiritual experience than I had. I wish I had seen my grandparents, or felt the hand of the Creator, or...?

But, as I had my SAH and went through the many hands that finally brought me to the hospital I felt...nothing. There was no deep well of strength, Love, compassion, bright lights, knowing, peace, anything.

There is only my will to survive pulling me back to this moment. My own intuition and the people I am working with on this healing journey all tell me that this moment is where I need to be.

Yet, despite the definite gifts of the SAH (and there have been some), I find myself in this present moment with less than I had in present moments previous to the SAH. I feel diminished. Not just in capacity, but in my soul. In my human experience. In my spiritual experience.

I feel that I have lost something so valuable and so indefinable and I can't find it anywhere.

Strangely enough, I lost my van keys. The day before my SAH I went to work and came home again. I must have had my keys then as I drove the van. Early the next morning I had my SAH. We have not been able to find my keys since coming home from the hospital. I and my husband have looked everywhere we can think of...twice. No luck. On that key ring were many keys unlocking many things, including my van (mobility), our mailbox (communication), my scooter (independence).

I have used the key analogy to explain to my husband what I have lost. While we have searched everywhere for the physical keys, we have not found them and I am dependent on others (him) to get the mail, to provide the means for transportation. Luckily, we can get a new set cut (one of these days we will).

However, much more important than that, I have lost very valuable keys to myself. I have searched everywhere inside of myself for them (more than twice). I can't find them. I don't know if they're even in here. Perhaps one day I will stumble across them, but so far no luck.

In the meantime I feel alone for the first time in my life. I miss my soul/connection. I miss my optimism. I miss some extremely valuable parts of myself.

My husband says they will come back.

I tell him this is like telling me I'll find my keys.

Perhaps both are true. One day I may find my keys/lost parts of self. In the meantime I must stumble along without them. No-one yet knows how to make a copy of a soul to replace the one that is lost.

I'm sorry I have no optimistic ray of light to shine on this topic. I am truly sorry about that. I used to have so much light inside of me. Now, it's just a bit of a confused wreckage in there.

It is here at BTG that I feel some remnant of connection that I previously felt. I feel that we are each connected to each other in our shared confusion, similar experiences, losses of self and experience with personal existential crisis. Right now BTG feels like a lifeline.

I am so deeply grateful for that.

[Winb143]

Welcome to BTG Sarah, Hope you keep well and have a few laughs as well as get help/info

All the Best

WinB143 x

[SarahLou]

Hi Raine,

Wow, your words have left me speechless. I'm sending you a big hug.

A few people have said to me why don't I write down my experiences, but I can't find the right words yet. How do you put into words a heart breaking scream that comes from the very core of you soul??

I hope that you find your light again soon hun,it's in there I promise.

SarahLou Xx

[Neilhapgood]

hi all,

thanks so much for the feedback so far, as I am sure you can all relate, it means so much that it made some kind of sense to some of you, as we all know to well, trying to explain this sort of stuff to people can be so hard and often leaves me more confused than when I started, let alone the poor person on the receiving end! I wanted to get a quick posting in now to say to Lin Lin that I did send you a private message to see if you might want to meet up for at some point as I work in Neath so message me back if you would be interested. And Raine I found your words really heartfelt, helpful and touching and there is clearly something about SAH's and van keys! I was surfing when I had my SAH and my van keys were hidden in my van, the family never found them and thought they were going to have to tow the van out the beach car park to avoid a months worth of parking fees until my housemate found the spare set sometime later and sent them down. At one point they were joking about asking the doctor to bring me out of my induced coma for long enough to ask me where I had hidden the bl**dy keys! Thankfully they did turn up which was good but unfortunately they didn't also unlock the 'old Neil'!

Edited August 3, 2011 by Neilhapgood

[Riane]

I just looooove how much we all have in common on this site. :lol:

Perhaps van (and other vehicle) keys should get into the next study on SAH's.

[Bill B]

Thanks for starting this thread, full of incite, and very articulate.

It is interesting,to me, that you are questioning the interaction between your conscious- mind and your sub-conscious.

I have come to believe that the two are linked, but not in linear way. Time and space, as experienced by someone who has not suffered a brain trauma, is not the same, for those who have been affected.

Memories, once scrambled, take years to rearrange.

Prior to an event, day to day tasks and even the successful prosecution of a difficult job, are taken in your stride.

No thought required for all the decisions that make up your daily work and social life.

Post-event, all the, previously automatic, processes are clouded by the sub- conscious residue that is the legacy of a bleed.

The lingering after effects, (depression, muddled thinking, forgetfulness, apathy, tiredness..etc,etc ) I think, are the result of the sub- conscious

invading the here-and- now of the conscious present.

I have tried to re-invent myself over the past seven years, but still struggle, as you do, with trying to make sense of it all.

Just like you, everything fell into place in my previous life, no need to question the route I was taking. I worked hard and got my just reward.

Everything I did was steeped in "cause, and effect". It all made perfect sense.

Now, things are very different. Childhood insecurities and lack of self-esteem has somehow wormed its way into my everyday existence.

The new "normal" is no longer an automatic, downhill ride, full of familiar, comfortable points of reference.

Now everything has to be calculated and evaluated to confirm that is the right decision to take.

In other words, all the confidence and spontaneity has gone.

The new reality is completely different from before, and really means that I am different person.

I believe that, all we are, is our memories, instincts and nervous reactions.

When the memories are altered, the rest is altered too.

The sub-conscious "hard drive" is much bigger than the "ram- memory" available for normal operation, so, no wonder it affects the waking hours.

Riane mentioned Jill BolteTaylor .

The things that she spoke of are the preferred route to the new reality that I seek.

I,too, felt the euphoria, and glimpsed a world full of beauty and possibility, and now make all my decisions, unashamedly,from, what I regard , as my new

moral high-ground.

I have accepted my new neural- connections, as an opportunity to start my script from new.

This doesn't mean that I have worked it all out yet, far from it, but I know that the old "me" has gone forever, and this I have, now accepted.

As for happiness, I'll just hang on in there, until one day, surely, it will return.

All the best Neil,

Bill B.

[Liz D]

Hi Neil

I think I can relate to this. Before my SAH I thought the same, that life is what you make of it, don't have any regrets just learn from your experiences. When faced with anything my mantra to myself was 'will it kill you? No. Then just get on with it!'. My sister once described me as the strongest person she'd ever known, as no matter what I faced I got throught it.

Even when the docs were giving me statistics in hospital - they'd no idea how I managed to survive 2 sentinel bleeds, a ruptured aneurysm and a sequential bleed. So when they were giving me the stats on the likelyhood of me ever working again, I thought right I'll be one of them that does get back to work!

But as the weeks went by I found it very difficult to push things the way I used to because I could have died. I found it very hard to get around these thoughts and so lost my 'mantra'. This was when I needed some counselling and it was my counsellor that helped me work through things and get my confidence back. I'm 2 and half years post SAH and see some of the old me and yes I use my 'mantra' again!

Before my SAH I had a photographic memory. I used to rewind the video in my head if I needed to find something I'd misplaced or when I was sitting exams I would 'read through' my notes in my head until I found the answer. After my SAH when i tried to do this, all I saw was a big black hole at first. Then as the months went by it changed from the black hole to a very jumbled up picture that I couldn't make any sense of and it's still like this. Now what I've discovered is that I was using the back of my brain to do this and this is where my bleed was. I was told that your brain is 'elastic' and that if one part stops working sometimes another part of your brain takes over. When I try to remember things now it's the top part of my brain that does this. I am now starting to 'rewind the video' once again! I can get a stomper of a headache doing this but it's worth it!

I am now very aware of my brain and very aware that it is this that makes me 'me' and makes every part of my body function. I had a brain stem stroke during my coiling procedure and have had to do a lot of work in regaining control of my left shoulder/arm. I have found it fascinating just what our brains control and we never think about until it gets injured. But then why should we?

I am such a changed person now and I really like the 'new me'. I feel I've found peace with it all. I am so laid back, I never get angry and very seldom even get irritable. I know I see the world differently to most people because of what I've been through but I see it as a priveledge. I have a great job working with great people and I have a very supportive family. I feel lucky that I don't need to be striving for 'things'. The most important things in life are the people that surround you and fill your life with love (bit soppy but true).

I hope this makes sense! I do struggle sometimes finding words. It's so important also to be able to express ourselves to people who really understand where we are coming from you. Thank goodness for BTG!

Edited August 4, 2011 by Liz D

[Neilhapgood]

yeah it is the strangest experience when you join the site as you feel a link that is unexplainable to everyone else on it!

[Neilhapgood]

also Bill, I really liked some of your comments, particularly how your life before was 'steeped in cause and effect', that completely sums it up for me, it is such a natural process and way of living that trying to explain that you have lost that is impossible for people to grasp. Also the sub-conscious and conscious 'hard drive and RAM' analogy sums things up really well for me too. Thanks for the input.

[Leo]

I completely understand what you are all saying.

But can anyone answer ... when or how does one begin to completely accept/understand the "new" you?

I have been trying since my SAH but it is so frustrating at times, knowing that pre-SAH I could have or would have done something without batting an eyelid and now, just about everything bar breathing has to be planned. One day on, one day off so my body/brain can recover. I'm aware I'm not being very eloquent but all I'm trying to say is that I agree, it does feel like a huge part of me is missing, that the key is gone and I'm trying to rebuild myself again. It hurts that I won't be exactly the same again.

I know I am extremely lucky to be alive and try and keep my spirits up everyday but life post SAH is different and exhausting!

Leo

[JazzyDog]

I think that is such an individual thing.

I tell people I am a work in progress - acceptance is still in that stage as well.

I find I stare at people walking or riding their bikes, wishing I could still easily do those things. I also think it's sad that they probably don't appreciate their ability to do something so "simple".

It's kind of like a grieving process - we are all grieving our former lives and that takes time and is a very personal, individual process. Eventually there is a point of enjoying the "new normal". I just recently realized that every day I've had for the last 23 months is a day I shouldn't have been here so I should try to enjoy it good or bad. I still have very down moments (I had a really good cry yesterday) but this forum has helped me a lot. When I was sad yesterday I thought of Win telling people to have a chocolate and shop and it made me smile!

Kelly

[Liz D]

I agree Kelly, it is a kind of grieving process and grieving is an individual thing. It's having to go through the shock, disbelief, anger and then acceptance before finally finding peace with your situation.

Leo it is difficult coming to terms with the changes. I was told in hospital to try and not keep going back to how I was before the SAH and compare how I was then. I was to compare myself with the first day home from hospital. It took a bit of time to stop thinking back to preSAH but when I started to look back at how I was when I came home I could see the improvements. I think this helped me stay positive and deal with the grieving process. I always started with 'well I'm alive' as the bottom line and then looked at all the things I could do. The list slowly started to get longer and I no longer dwell on what I used to be like. I wasn't perfect before the SAH, so it's all right now that I'm still not perfect!

[Winb143]

My Parents always said love yourself first then others will love you.....and if not you can do without them....

I had great Parents who always told me to be true to myself...

So I have had SAH I am still l the person I was sort of...!!! (minus a few memory losses )

I swear a lot since SAH I don't like it, but long journeys in cars upset me and I am so scared of lorries....so my language

on motorways is so bad, but I guess I am lucky for I have my family who understand me...all of them cousins and all.

Apart from language I feel like me ..the old me.... I sing and joke more because I do not want to be down over SAH

I will not let it ruin my life or the person I once was...

My sister said to me "You are determined and you wont let it beat you, you will walk"...So to my Sister Sylvia, Thanks for giving me a goal, and my brother Terry thanks for the laughter and songs ....and to all my other sisters brothers and friends ,Thanks Pals xxxxxx

My hubby and daughter have my LOVE XXXXXXXXXXX and Thanks xxxxxxxxxxxxAlways

Regards

WinB143

Edited August 4, 2011 by Winb143

[Karen]

Liz, I've also learnt over the years to compare myself to the person that came out of hospital, rather than compare myself to who I was before and this has helped to keep my sanity and to enjoy life, see my family grow up and achieve as much as I can ...

Everything achieved, is still a bonus to me....even the small mundane stuff, like cooking, doing the washing and being independent as much as I can be.

It has also given me a realistic expectation of life post SAH, rather than to pit myself against something, that I know at this stage in recovery isn't going to be achievable and that's to be the same person, both physically and mentally before I had the brain injury... it's not going to happen and I could spend time beating myself up about it, but in my book, it's not worth the energy or the depression. However, it did take me the first two years into recovery, to find this sort of acceptance, to find some peace and to stop fighting it. That's not to say that I don't push myself to achieve, I still have that fight in me and it's helped me move forward with my recovery, but I'm now able to work alongside my deficits and accept that "crash" days are still going to happen, even if they're less frequent than in the early years.

It is a grieving process and I doubt that anybody on here, would say that after a near death experience, that life could ever be the same again ... We've all experienced how fragile life is and the shock of how quickly your world can fall apart..... I've often asked myself the question as to why I don't feel the same as before and I believe that it's probably an impossibility not to experience any changes in your life or to the way that you think, after something so traumatic.

I truly believe that most of us experience post traumatic stress after a SAH and it would be great if one day, all future SAH'ers were given counselling as par for the course.

Hope that you guys who are struggling, eventually find some peace. xx

[SarahLou]

Hi,

Winb143 you saying about you swearing more made me chuckle, I've been lucky enough to spend some time with my sis over the last few days,she doesn't live close so don't see a great deal of eachother but she gets to notice changes in me, she commented yesterday 'Cor sis you don't arf swear a lot more now' . I seem to just say exactly what's on my mind now,alot more open and honest about things. Yes, I know I've changed and am slowly accepting the new me.

Totally agree that it's like a grieving process, you need to grieve for what you once were/had. We were told to do exactly that when my dear hub was diagnosed with complete renal failure in 2003. Lifes lessons are tough and often seem unfair but I believe they make us stronger and better people. They certainly make you appreciate every single day.

SarahLou Xx

[JazzyDog]

I love the comparison to hospital release. I find myself *finally* making year to year or month to month comparisons especially when I am frustrated about my perceived lack of progress. I did have the good sense to delete my old "Mi" from our Wii game - so now I compete only with my post-aneurysm self and it helps to see the changes in dexterity/balance through that.

Last month I went out in my kayak with my husband. I was just sitting there in the middle of the lake and he paddled up all worried about me. I told him I was just so happy to be out there and that I knew in the previous summer I would likely have never made it into the kayak and I certainly wouldn't have been able to paddle.

[Winb143]

Well said Jazz ...Life is great....could be slightly bettet lol but I am so happy at this moment in time

Keep smiling

WinB143...alias wonky walker xx

[Winb143]

Hi Sarah Lou,

Sorry about your hubby.......

keep smiling if poss. and lets sing a rude song together lol....

I must stop with bad language...Glad you saw your Sis.....even if she did comment on swearing lol

My Sis used to make me dolls houses out of boxes when I was young and she has always been my older sensible sis

When I had my SAH she sung to me and stroked my head..it made my daughter Sarah cry ..

I reckon my sis was off key lol

Speak soon Sarah Lou.

Love

WinB143 xx

[SarahLou]

Hey winb143, that hub of mine is doing fine, I gave him a kidney in 2006. We have some pretty amazing scars between us!

I'm sure glad my sis didnt sing to me!the nurses woulda thought cats had got in the building!

SarahLou Xx

[Winb143]

Lol Sarah Lou .....

My Sister and Sis in Law sung to me ....and they said I joined in omg bad news

Once my pal Stella came to see me and I sung a Queen song all the way through and they all laughed Cheek !!!!lol

Giving up singing now lol

Glad to hear your hubby is ok trust me to get it all wrong........

Keep smiling

WinB143 xx