Me And Mum

World Alzheimer’s Day – 21 September

Image credit: courtesy of digitalart at FreeDigitalPhotos.net
Image credit: courtesy of digitalart at FreeDigitalPhotos.net

I hadn’t intended to post again so soon after my last post, but World Alzheimer’s Day today is too good an opportunity to say let’s support the people in our communities who live with Alzheimer’s. People who have the disease, people who support those with the disease, and people who are employed in working with both groups of people.

In writing about Alzheimer’s and my family’s journey it is really important to me that I don’t take advantage of my mother’s plight. She deserves her privacy, something which she has always held tightly to. She doesn’t deserve to be some kind of joke. The struggle she lives with is real, but she is also real. She has feelings. Part of my task in supporting her is to protect those feelings, even though she might not be able to express or even understand them.

This post comes from my own reactions to my mother’s illness. I have tried to write from a perspective of my journey, rather than my mother’s. I hope that in doing so, I have preserved at least some of Mum’s right to privacy.

It’s funny how things happen. I think I would be pretty much the last person my mother expected or even wanted, to be there for her as she traverses her last years – with Alzheimer’s Disease.

“The phrase ‘Love one another’ is so wise. By loving one another, we invest in each other and in ourselves. Perhaps someday, when we need someone to care for us, it may not come from the person we expect, but from the person we least expect… [ someone] whose love for us has assigned them to the honorable, yet dangerous position of caregiver.”

Peggi Speers, The Inspired Caregiver: Finding Joy While Caring for Those You Love

Mum and I never got on. Not when I was a child and not for most of my adult life. It might seem harsh but the reality is that I think Mum and I tolerated each other for the sake of my (now late) father. I always got on great with Dad, but Mum didn’t appear to understand me and I didn’t understand her. I fully expected that when she was old, we would simply go our own ways.

My father died suddenly nearly six years ago. My parents had been temporarily living with me (after they lost their home in the Christchurch 2010/11 earthquakes). I remember the night after Dad’s funeral, I looked across the room at Mum and wondered how we would go from here. Mum hadn’t been diagnosed with Alzheimer’s at that stage, but both Dad and I were clear that she was showing symptoms.

You see, Alzheimer’s runs in my family. My grandmother died of it, as did one of my uncles more recently. Earlier generations possibly bore it’s burden too. I have known it for most of my life, being only about ten when my grandmother was moved into residential care back in the late 1970’s.

Sadly, it’s something we have grown to expect. Mum never talked about this family heritage, but I’m sure she was probably quietly terrified. Frankly, I’m quietly terrified of it myself. But I’ll face that when I get there. My fear is not the focus for today.

It wasn’t long after Dad died that I got a very clear sense that he would want me to ‘be there’ for Mum. People have since told me “don’t be silly, he wouldn’t put that burden on you” but that’s not the way I saw it. To me, it was just one last thing I could do for him. I never stopped to see it as some type of burden. It was just the way it was going to be. Strangely, doing it for Mum never came into it back then. Supporting her would be definitely something I did for my father. Perhaps that’s just the way I needed to see it back then.

Mum was finally diagnosed about two years ago, but symptoms were obvious to those of us who were with her regularly, about six years earlier. And I’ve been learning ever since. I thought I knew the disease, but I really didn’t know anything until I learnt to live with it daily. There are new lessons each day.

Our relationship has changed enormously. It’s still not what I would call a typical close mother-daughter relationship. It never will be. Our relationship centres around her, and what she needs. My needs don’t really come into it. Some days that is really hard. Some days when I’m not well myself I want to scream “what about me?”. But mostly it’s okay. While Mum isn’t able to acknowledge it, I know that she needs me to prioritise her. This is her time now.

Mum needs me. She is living in a rest home, so yes, her basic needs are met. But I see her most days. I am clear that when I am not there, the staff take good care of her, but they are clear that Mum needs (and wants) my presence.

I’m the one that meets all Mum’s other needs. It might be the little things that no one would ever think of, or maybe bigger things like making decisions for her. I’m the one that notices the dirt on her shoes and stops to scrub it off just before taking her out to church. Maybe the dirt doesn’t matter, but it would have mattered to her… and so, now it matters to me.

Mum never appears to have any difficulty knowing who I am. She’s never once hesitated over my name and has no problem telling anyone who will listen that I am her daughter. That said, there are times when it’s quite clear to me that she is talking to me thinking I am my father. Other times I am a mystery third person, who she was eventually able to reveal to me was her sister (she never had a sister!).

I know that Mum has a great deal of difficulty knowing who most other people are. She’s confusing names or having to ask me who someone is. I admit that I try to keep the family names alive in her mind. I talk about my brothers (by name), about her grandchildren (again by name). I talk about my father because I can’t bear to think that she might forget the man she was married to for 53 years.

Maybe I do all of that for my own sake. Maybe I make decisions for her in such a way that will save me from having to see her suffer. I don’t know if it’s that I don’t want her to suffer, or that I can’t bear her suffering. Does that make sense? The two things are different to me.

Alzheimer’s Disease is a terribly cruel illness. I’m not the first person to write that. I see it’s cruelty daily as it robs little pieces of my mother.

I see the pictures in many Alzheimer’s publications of two brains side-by-side. On the left is a ‘normal’ brain and on the right is the smaller ‘Alzheimer’s’ brain. I wonder what my mother’s brain looks like now. How much has it shrunk? And for how long it can go on as it is? I don’t know.

The future of the journey which Mum and I are on is unknown. There is so much that is unknown. Each day, I don’t know what it will contain. Even though I already see my mother struggle so much, I know the struggle will only get worse. It’s just a matter of time. Will it be today? Or some time ahead?

What I do know, is that I have a remarkable opportunity to serve a woman, my mother, in her final days. What an honour. Seriously. I never thought I would say that, but Mum’s willingness to let me be there for her is a gift.

I read that “being a mother is about protecting your children from every conceivable thing that might cause them hurt”.  I’m not a mother myself but I now see my role as protecting my mother from everything that might cause her hurt. Sometimes I can achieve that but sometimes I can’t. At least I can try.

By choosing to look at our journey in these ways makes it bearable for me. I dearly hope that I am somehow making it bearable for Mum.

Thanks for reading

 

Cate

 

Other Posts You Might Be Interested In

Bewildered

Never Say Never

 

Bewildered

Bewildered was reflected in my eyes. I hadn’t seen it before, but there was something devastatingly familiar in that look. I couldn’t turn away from it.

I had been Bewildered in times past. It came as a symptom often not recognised, from too many anti-depressants, benzodiazepines, antipsychotics and even too much ECT (yes, it is possible to have too much). Those left me with little idea of the world around me. I didn’t know the people around me. I didn’t know the world around me. I was a little bit scared but mostly I didn’t care.

The Bewildered now reflected in my eyes was mostly not there to reflect mine in the days I needed it. I was mostly alone. It’s not that they didn’t care. I had just pushed away anyone who cared. I had moved away to places no one knew me. Those that cared were few in number. Well, that’s what Bewildered wanted me to believe.

Actually many people, admittedly at a distance, cared. Actually, many people, family and friends, wanted to care, but I couldn’t see it. Perhaps it was the psychosis, the depression or perhaps it was the drugs… they wanted me to think I was alone. Actually, Alone was the last thing I needed. Alone would kill me if I let it.

It’s what made me think when I saw Bewildered staring back at me last night. Alone is the last thing that Bewilderment needs. It’s not that it would kill them. Well, not yet and not in the way it threatened to kill me.

It is easier to stay away. Because it’s difficult. What do I say? How do I respond to Bewildered’s strange statements? How do I stay, when Bewildered seems to push me away?

I’m lucky in a way. I have my Grandfather’s example to follow. He wasn’t alive by the time I faced my Bewildered, but I know what he would have done because I’d seen him do it before. He would stare Bewildered straight in the face, and say, “I’m not leaving you”. And he didn’t.

Whatever Bewildered you find reflected in your eyes, I challenge you to stare them straight back in the face and say “I’m not leaving you.” It seems so small, but maybe if it can take out a little of the fear that Bewildered faces alone, it has to be worth it. It will probably be difficult, but still worth it.

“Peace. It does not mean to be in a place where there is no noise, trouble or hard work. It means to be in the midst of these things and still be calm in your heart.”

 – Unknown

Peace is something that even the Bewildered deserve. No matter where that Bewildered is sourced, I believe that I can help someone Bewildered find even just a little of their own peace just by being willing to let that Bewildered be reflected back in my eyes. In that, they are not alone.

Thanks for reading

Cate

 

Never Say Never

I did say ‘never’. More than once. Actually I said it repeatedly for about 20 years. That’s a long time to say ‘never’ but I was sure of myself. I was sure that I never wanted to do this again. I’d been, got burnt several times, and wasn’t going to go there ever again.

About six months ago I had my first inkling that perhaps I had said ‘never’ with a little too much certainty. But I had never pictured myself in this situation, ever. While I was still saying ‘never’, I was starting to realise that I might have to change my mind sometime in the future.

I can tell you that I hate that! Having been adamant for so long, having been sure that this would never happen, and now because of a number of decisions I had made over recent years, I knew that I should never have said ‘never’. Never say never, Cate!

I have shared in past posts that my mother has Alzheimer’s Disease. It’s a cruel disease. Everyone says that but I had little idea just how cruel it was. I had seen my grandmother’s journey through Alzheimer’s. An uncle’s journey more recently. And one thing that’s sure is that I’m nowhere near the end of this Alzheimer’s journey yet. I know now that contrary to past thinking, it’s a much worse experience for my mother than it will ever be for me.

I remember being told “at least they don’t know what is happening to them”. That was a somewhat comforting thought. Just yesterday someone told me “they’re really already dead” (ouch!). But research has now found that patients do know. It’s just they don’t know what they can do about it. It’s a good reminder to me that no matter how hard this is for me, it is much worse for my mother. That’s enough for me to never say ‘never’.

For all of her life, my mother has gone to church. It has been central to her life as a child and as an adult. She was married to a minister. Now it continues to be a key aspect of her life, although she is more limited in the extent of her church activities. Apart from perhaps when she has been in hospital (rarely) I can’t think of a time when she didn’t go to church on Sunday.

When mum had to give up her driver’s licence and so couldn’t get herself to church, we set up a system where another brother (who went to the same church) would pick her up and take her to church. I would be waiting outside church at the end of the service to take mum home. Many times I have been invited to go to church with her, but I was saying ‘never’… quite firmly. I had absolutely no intention of going. But the system we had set up worked.

For a big chunk of my life, I had gone to church. I had grown up in a minister’s family so church was central to our family activities. As an adult, I had continued to go to church.

Several things happened in my teens and twenties. They dulled my enthusiasm, although I never said anything and I kept up my participation. When I was first diagnosed with a mental illness, in my late 20’s, a number of statements made to me by a few unwise people, left me concluding that church was no longer the place for me. I felt judged, and I felt uncared for. To the extreme perhaps, people who had hurt and abused me were somewhat more important to some church people than I was. My needs for safety and protection were seemingly unimportant. My experience was that church was not the compassionate and accepting place they said it was.

And so I stopped going to church… about 20 years ago.

Until now.

My thinking has driven me further away from the church. But just sometimes, it’s necessary to put that aside. My mother now needs someone to be with her when she goes to church, otherwise she probably wouldn’t be able to go for much longer.

I made a choice. I would go to church with her until the point where she can no longer go (with me).

Aside from my own beliefs and thoughts, I’m not ready to see mum unable to go to church. It is very important to her, even with her disease. For some reason that I don’t fully understand yet, I’m prepared to help her keep it in her life.

Ok, so I have only been once so far. There is little that has changed in 20 years, except some of the music. It wasn’t somewhere I felt comfortable, but my comfort was not what this exercise was about. I don’t call myself a Christian, and suspect that will continue. I didn’t agree with everything that was said. It is a middle-class church and I wondered where the inclusion of others was.

But I will be there, with her, again this Sunday. And the Sunday after. And for as long as Mum can make it.

This is about being there for my mother. Making sure that something so important to her remains in her life, and setting aside my own thinking, I hope, for her sake,  that we can keep doing this. You see, when we can’t keep going, a very large chunk of mum’s life will have been taken away by Alzheimer’s. And that will be tragic.

It’s going to be a hard road for me. But I am willing to do it, not because I love her but simply because I hate to see this disease swallow up someone’s life before it has to.

Thanks for reading

 

Cate

“looking at my reflection, in the window opposite, hollow and translucent, I see a woman disappearing. It would help if I looked like that in real life – if the more the disease advanced, the more ‘see-through’ I became until, eventually, I would be just a wisp of a ghost. How much more convenient it would be, how much easier for everyone, including me, if my body just melted away along with my mind. Then we’d all know where we were, literally and metaphysically.”

― Rowan Coleman, The Day We Met

4.35am

It is five years today since my city, of Christchurch, was shaken so badly that I seriously thought the end of the world had come and was happening right on my doorstep.  A shallow, 7.1 Richter scale earthquake began a rollercoaster of quakes which would last more than two years. What followed was four earthquakes over 6 Richter scale and a staggering 16,000 plus quakes to today.

Not to mention the physical and emotional damage, it is without exaggeration that I say my life totally changed that day. How I live, how I think, how I feel and perhaps most importantly (in my eyes anyway), what matters to me. I am more compassionate. More mindful.

Christchurch wasn’t a city that got earthquakes.  That was Wellington (head north).  I had grown up knowing how to deal with earthquakes (run for the nearest doorway and hold on!), yet that 40 second quake was beyond anything I knew or had ever thought would happen to me.

It was 4.35am, so it was dark and I was asleep when I hit.  When I woke to the bed rocking and rolling, I immediately knew I had to get to the doorway (some maybe two metres away). You have no idea how hard is to get to a doorway in the midst of such a quake.

As I left my bed I instinctively grabbed one of my most precious possessions which was sitting by my bed. But when I (finally) made the doorway I realised I had left another very precious item still beside the bed. I immediately wanted it with me but wasn’t sure I could get back to the bed to get it… and perhaps most importantly still be alive. I chose not to go back.  I didn’t think I could get back and then back to the doorway alive. I still find it incredible that all that was in 40 seconds, it seemed so much longer.

No one died that day but more quakes happened, and people did die,  I admit I moved my focus of what mattered.

When people died in the quake of 22 February it really hit me that lives were at stake.  As I stood in an office car park with hundreds of others, having been evacuated from the building I was in, I saw injured people. While I probably had no doubt by then of the risks we faced, I heard on the grapevine that other buildings had collapsed. I knew that lives would be lost today. That said, my parents were by my side so I knew they were safe.  It was only a few hours before I could speak to my sister-in-law and knew they were all safe.  This was bad, but the worst (death) was happening to other people. I know that sounds a little callous, but it is what I was thinking at the time.

185 people died that day, one was known to me.

Six weeks later, my thinking changed again in a very abrupt way. The quakes continued and as a result of extreme stress, my father suffered heart failure. I was down on the floor in my lounge (my parents were by now living with me as their home had been declared unlivable and would later be demolished) doing CPR on Dad. I had never expected to be here, but thankfully had learnt CPR some 20 years ago. It took 20 minutes before paramedics arrived and took over (many roads were still blocked and impassable), another 20 minutes before they declared Dad dead.

Now this ‘worst thing possible’ had happened to me. Earthquakes now meant death, what’s more, death of my father and best friend. I now had to look after my mother, and this time when the phone calls were made to the family, I could no longer say that everyone was safe.

Some seven months earlier, my focus was on my possessions.  Of my most valuable, I had one with me but had left the other just a few metres away. The death of anyone hadn’t really  occurred to me. While the quake was bad, I never thought someone close to me might die. Now the unthinkable had happened.

Draw your own conclusions, that’s really what we have to do in such situations.  But I’ll tell you my conclusions.  I’m reminded of them each time I feel yet another shake (last night).

I’ve concluded that taking one day at a time is not an option. It’s essential. It’s what I have to do because I simply don’t know what tomorrow will bring. I don’t know if I’m going to be able to say “I love you” tomorrow and I don’t know if I’m going to be able to say “I’m sorry“. I don’t know if my precious possessions will be gone, and whether my house will still be standing. Think that’s going too far, and in my opinion (now) you’re fooling yourself. My aim now is to take each day as it comes, because I really don’t know if tomorrow will actually come.

Five years on and I’m still waiting for my house to be repaired.  It is expected to start in November and will take six months.  I’ll be looking for somewhere else to live shortly. My brother’s business was all but destroyed five years ago. He’s still working hard to try to rebuild it. We are not finished with the aftermath. Not by a long shot. It will be a long time yet before we can breathe easily again. But meantime, kiwis (and especially kids) are now taught to “Drop, Cover, Hold” rather than trying to run for far away doorways.

Kia kaha, Christchurch
(Be strong)

Cate

To Cope

cope

Pronunciation: /kəʊp

 VERB
[NO OBJECT]

1(Of a person) deal effectively with something difficult:
 

his ability to cope with stress; it all got too much for me and I couldn’t cope

(Source: Oxford English Dictionary)

And now that the English lesson is over for the day, let us get on to more meaningful issues around this word.  Like how do we cope?  What coping mechanisms do we use in order to get through life?  Are those means of coping, healthy or otherwise?

But here’s the catch… I don’t want you to tell me how you cope.  I have enough dealing with my own means of coping.  Tell yourself, instead.  Tell yourself what coping mechanisms you use to manage physical or mental difficulties.  Maybe you have both and so you need to tell yourself about both.  And check with yourself, are they healthy or unhealthy?  And perhaps more to the point, does it matter?  Be honest with yourself.  Know what it is that keeps you going.

And now I will get on with my post. I have had a means of coping with a particular aspect of my life, for a very long time.  Actually I have used this means for as long as I can remember.  I’m talking pre-school.  I can’t remember when I didn’t do this as a way to cope.  This is a very longstanding way to cope.  And it worked.  First as a child, and then as an adult.

There are only two occasions in my life where this coping mechanism of mine was denied (for want of a better word).  Actually they were similar but different.  One involved me sharing some small detail of my means to cope with another, and that other using it to abuse me.  Obviously that didn’t work.  The other refused to accept me if ‘me‘ included that means of coping

Both times I had to weigh up what was more important, my coping mechanism or the people involved.  Both times it required a potentially life-changing decision.  These people insisted I remove the coping mechanism from my life in order to have some type of connection with them.  Actually I chose my means to cope with my life, and it hurt like hell.  But… I never had a doubt that I had done the right thing.

For a third time, this week my means to coping was challenged.  Actually it was more than challenged because of the environment involved.  This time my means of coping was totally chucked out and I was told I ‘couldn’t use it anymore’.  Gone.

If I could go into details, then I could go some way to explain just how devastating that has been.  I can’t.  But maybe it doesn’t matter so much because perhaps my feelings are what are important.  I’m not sure if I can adequately put those in a few words but I will try.

Hurt, denied, shut out.  I was fighting for air to breathe.  Literally my means of life was being denied.  It hurt to the extent that it felt my skin was being peeled off.

I know that it is difficult to comprehend, but go back to your own means of coping.  Maybe one you used from childhood, or something you had to do to keep yourself alive as an adult?  One that actually meant a difference between life and death.  Now have that taken away from you, by someone important in your life.  Maybe it’s happened to you already.  Can you see now a little of how I might feel?

To be honest, I spent most of the week in denial.  There was too much to do, people to face, it couldn’t work any other way.  It simply was the only way to handle it, without totally losing it.  But then I had to go back to the person who did it.  That’s where it felt like my skin was being peeled off all over again. Fuck!

And I felt myself crumbling, not sure if myself even existed anymore…

“You think you’re lost but you’re not lost on your own. You’re not alone. I will stand by you, I will help you through when you’ve done all you can do.
If you can’t cope, I will dry your eyes
I will fight your fight, I will hold you tight and I won’t let go”

— Rascal Flatts

Good Intentions

I had good intentions.  You know when an event is coming up and for once you’re organised?  Each day leading to the event is planned?  That’s how I was with Christmas this year.  I knew what I had to do, I had most of what I had to do done.

But then I got a phone call on Monday morning.

It changed all that.  While Christmas still happened (like such events have a habit of doing regardless of what we have happening in our lives), Christmas changed.  The days before, and the days afterward changed.  I think I’ll remember this Christmas.

I had already come to the conclusion that Christmas this year would be about family.  For once, I was actually looking forward to the day.  I don’t usually.  I’m one of those people who would rather ignore the day.  Usually I grudgingly do the things expected of me, but mostly detest this celebration… for a number of reasons.  This year was going to be different.  Somehow my mindset had changed just a little.

Early Monday morning I got a phone call to say my almost-87-year-old mother was not well.  I wasn’t yet dressed but threw on the nearest clean clothes I could find, and drove over to Mum’s flat in a nearby retirement village.  And there began a search to get help for her.

To be honest, I wasn’t quite sure what to do to begin with.  We are all fairly new to all this.  Thankfully I was able to get some quick advice and then acted on it.  Many phone calls later, Mum had an emergency appointment with her doctor in a few hours.  That followed with more appointments.

I can tell you that a few days before Christmas is not the time to seek help from health professionals.  Everyone wants to see them, but luckily those involved made room for mum.  Unfortunately the problem wasn’t solved and the conclusion was eventually that family would have to provide the care Mum needed.  That basically meant me!

What followed was three nights on Mum’s couch.  The most uncomfortable sofa bed I have ever had the misfortune to attempt to sleep on.  I have now spent seven days with Mum, although we agreed that she didn’t need me so much at night and that because my back was now extremely sore, I have been home at night.  I only live five minutes away and I can easily jump (if my body lets me) in the car and go back (as I have had to do).

Nearly a week on, Mum is doing better although is not herself.  I wonder whether I will ever see that ‘herself‘ again.  I don’t know.  That’s the nature of the illness.

I will continue to spend days with my mother, and then on Wednesday she will move to a rest home, providing residential care for the elderly.  This is something that was already planned.  This past week we tried unsuccessfully to move Mum early.  It didn’t happen because… well, I won’t get into that here.

That is the short story.  The purpose of sharing it here, as well as to simply write out for myself what happened, is that it very much fit with what I had already been thinking of for Christmas, and what I had intended to post about on Monday.  Obviously it didn’t happen.

Image credit: Permission obtained from Penny Redshaw http//: motivating giraffe.wordpress.com

I am sharing this image firstly because I love Penny’s blog.  Somehow, without my involvement (obviously… it is not my blog) she illustrates what I am thinking.  Amazing!  I also love images of giraffes.  I’m sure I would love giraffes themselves but there are not many in this country.

For some weeks I have been thinking about what is important for me at Christmas.  My thoughts came from a disappointment that I simply wasn’t going to be able to give my nieces and nephews gifts this Christmas.  I had no money as a result of not only a very small income but also because of some recent very large and unexpected bills.

I started (a few weeks back) to feel pretty down about this, not to mention embarrassed.  I had to shift my thinking somehow, and I started to do that with Penny’s statement in this image.  Remember what is important.

What is important is that I am alive and can be with at least some of my family.  The niece and two nephews who I would be with were really what mattered.  But that doesn’t exclude the other family members I would also be with.

When my mother got sick this week, it gave me a new appreciation of the fact that I still have her, and that regardless of her illness she would (and was) with us on Christmas Day. Who knows how long she will be with us? I had to take her presence on Thursday as another thing that mattered.

It’s been a long, hard week.  And it’s not over yet.  My fibromyalgia is screaming, as are side effects of a new medication which made it almost, but not quite, impossible to get down on the floor and do jigsaws with four-year-old niece L.  Getting up afterwards was even harder.  But it was fun, and that was what was important.

Hey, life goes on and I have a new appreciation of what’s important for me.  It didn’t matter that I hadn’t given gifts.  I suspect the teenagers might have objected a little, but they didn’t to me.  We just had fun together, with their Grandma quietly looking on.  I wonder what she was thinking.  I know I’ll never know

But that’s what’s important to me right now.

 “My dear young cousin, if there’s one thing I’ve learned over the eons, it’s that you can’t give up on your family, no matter how tempting they make it.”

― Rick Riordan

What I Did And Didn’t Want

Do I exaggerate? That’s a rhetorical question for most of you.  My family (who might or might not be reading) are welcome to try to answer that question but you must be kind.  Very kind.  Your purpose in attempting to answer must be purely to educate me and not to, in any way, attack me or get back at me for some random, unrelated misdemeanor.  The question is really one for myself if I am completely truthful.  It won’t be the first time I try to answer, and it certainly won’t be the last.

I just have got the impression over the years that those people close to me have the impression that yes, I do exaggerate.  Personally I don’t think I do.  I think that I feel things strongly and that I notice a lot of what is happening around me.  Perhaps more than others.  But when I express it, it’s not exaggeration but simply what I am seeing and/or experiencing.

This past week I have been through a lot, and for some of the people around me, they have been through even more.  It has been really hard.  Emotional, soul-searching and stressful.  And no, that’s not an exaggeration.  It has been hard on us, and it’s not over yet.  Actually in some ways I suspect it is only just beginning.  For some of us, it has been something that we always knew might happen, going even as far back as childhood.

It comes down to what I did, and didn’t want.  Clear as mud, I know!

It’s always important to me that just because I am a blogger, that doesn’t mean those around me must have their lives printed here too.  As such, there are no details.  If you’ve been reading my blog for a while, you will know that is how I sometimes write in order to protect the privacy of those people.

For what seems like a long time, I have been very concerned about something that others around me seemed to not see.  Of course, we see not only what is apparent but also what we are open and willing to see.  In addition, we can only see what is there.  If it comes and goes, if at times it gets hidden, it is pretty hard for others to see.

No one has said it out loud but I got the impression that they thought I was exaggerating.  Maybe they thought that was because of my mental illness.  I don’t know.  No one has ever said.  Maybe they thought I was simply too emotional and reacting too strongly to what I could see.  Again, I don’t know.  No one has ever said.

This week finally, some other people told me that they could see what I could see.  Wow!  That was such a relief (in some ways!).  As I watched them, watch what was going on, I was quietly terrified that they would say they couldn’t see it.  They didn’t.  They could see it clear as day.

It’s hard because I wanted them to see, but at the same time I wanted to be wrong.  I know that will make little sense, but I guess it’s just human nature.  I wanted to be right, but I also didn’t want to be right.

I was right, and actually those other people assessing what was happening, were even more concerned than I was.  I didn’t know how to feel then.  I wasn’t quite ready for the depth of their concern, even though I was glad they could see and were concerned.

What had been sometimes unspoken, and sometimes barely whispered, had now come amongst us.  I had really hoped it never would.  Others around me had hoped it never would.  Even those who had passed on hoped it never would.  But now, here it was, and there was no denying it… for any of us.  I got what I wanted.  I wanted others to see.  But now I really didn’t want what I had got.

I can’t wind back the clock, and that is painful.  I want the clock set on today when everyone concerned can see what I see, but I so don’t want it.  It’s totally thrown me off-balance, even though I wanted this, I also knew that what I wanted was the last thing I would ever want.

If you’re confused, then I apologise, but just imagine how I might be feeling with all this in my head.

I think I need a rest.

“Because that’s life, you know? Good and bad. You can’t have one without the other. The bad brings out the good in us, and the good can be corrupted by the bad. It’s always a struggle—to fight for the good, so it tips the scale. – Jet Phoenix”

― Rachael Wade, Repossession

 

An Apple Never Falls Far From The Tree

Image credit: Wikipedia.com

Caution: This post contains a (small) mention of self harm and eating disorders.  Read at your discretion.

Today my family are gathering together.  No special reason, except that it is a rare opportunity when we are all in the same place at the same time.  My memory is a little hazy but I’m guessing that it is about 18 months since we have been altogether.  Of course, one important person will be missing.  My father who died over three years ago is a very big absence in the room.  Perhaps especially because Dad was always my reason for being part of the family.  Now I feel a little lost without him there.

Family gatherings are something I find hard.  I have fallen near the tree yet I struggle to find a place for myself amongst that basket of apples.  I don’t fit.  Perhaps I should say I don’t feel I fit.  Actually I have never felt I belonged there.  I guess, that I have felt an outsider in so much of life, and the family context is just one more.

In the past I have tried very hard to get my family to reject me.  I grew up with this notion of unconditional love, which I didn’t believe really existed and also didn’t really understand.  I spent years doing and being something that I expected my family would reject.  I would prove that this unconditional love thing was a hoax.  To my surprise, they didn’t reject me.  Perhaps they didn’t like what I did always, but they never rejected me.  I admit I was surprised.  I was sure I could prove them out, but I never did.  For some reason, largely beyond my understanding, they kept on loving me.

I’m not at all sure that they necessarily like me, or actually ever liked me, but that is a different thing than love.

I don’t fit.  I’m not sure that I fit anywhere in this planet (except maybe surrounded by another family of stuffed animals) and so when I am in a group (whether it is my family or any other) I feel out of place.

While my siblings were creating marriages and families (very lovable families at that), I was creating a canvas across my body of places I had dragged the razor blade, not to mention destroying my own marriage.

When they were building careers, I was focussed on starving myself  and plans for death.

When they were building lives, I was gradually destroying mine.

Admittedly I am not in that destruction phase now, but I know it still hovers not far from the distance.  That’s just what chronic mental illness does.

When their children are growing up (fast), I am by choice, alone.  I don’t know how to be anything else, nor do I think I want to.

My life has turned out (so far) very different from my family.  Practically, I have no idea what to talk about with them.  My interests, let alone my goals are so very different.  But more than that, I just feel like I have no right to belong.  My achievement for life is to still be living today, and while that is big for me, I know it is not easily comprehended by others.  Nor is it something to talk about around the dinner table while the children play.  It’s a conversation stopper rather than anything else.  I just don’t know how to fit into the conversation in the room.

I’m more comfortable outside with my good canine friend Duncan.  He will no doubt be locked in his kennel today, to protect unfamiliar children and Grandma who risks being knocked over in his exuberance and friendliness.  Frankly I would almost be happier out in the kennel with Duncan.  He’s not worried about social niceties, careers and school reports.  He’s not worried about having conversation.

But it’s not like that, is it?  I can’t hang out in the kennel, and to be honest sometimes Duncan’s kennel needs some ‘housekeeping‘.

It’s another time when I have to be with the people, yet I feel so out of place.

My family are good people and I know they love me.  I want, and need them in my life.  I’m still not convinced that it’s unconditional love but I’ve stopped trying to prove that.  I’m not sure that humans are capable of unconditional love, but maybe that’s another topic.

I know my family have suffered in a different way, during the years of my destruction.  But they seem to have little understanding of my life of chronic illness, both mental and physical.  We are two types of apples, from the one tree.  I want to be with my family today, but yet again I have no idea of how to be with them.  Somehow Duncan is so much easier.

“The boughs, without becoming detached from the trunk grow away from it.” 

― Victor Hugo, Les Misérables

Cure Me, I’m Depressed

Recently I had the opportunity to watch the UK television documentary Cure Me, I’m Gay in which a gay doctor (Dr Christian Jessen) subjects himself to a whole range of treatments and therapies designed to cure homesexuality.  Wow!  I chose to watch it because I find it interesting that some people can see their role as to judge others (who are doing no harm to anyone else).  Personally I find it sad, but that’s me.  I know many people will disagree with me, and that’s okay too (although it’s not really the point of this post).

Let me be clear that no one has ever seen the need to, or tried to cure my sexuality (that they told me anyway) but they have tried to cure my spirituality.  As I watched the Cure Me, I’m Gay programme there were elements of familiarity that sprung up unexpectedly for me.  I realised that back when I was first being diagnosed with mental illness, in some ways I was put on a journey of ‘Cure Me, I’m Depressed‘.  It was all seeming a little familiar to me when I watched the last ‘treatment‘ that Dr Jessen underwent.  That of exorcism of evil spirits and demons.

I should add that at the age of about 15 I witnessed an exorcism of demons from a girlfriend.  I wasn’t meant to be there (judged too young to see such things) but circumstances determined that I had no choice.  The Christian people praying for this were doing so because they believed a demon was the cause of her chronic suicidal thoughts and self harm.  What happened that night was dramatic and downright terrifying for 15 year old me to watch, especially when it was my friend it was being ‘done to‘.  It was something I will never forget, and frankly wished right then that I didn’t have to watch.   Did it work?  Others there told me it did but I had no knowledge on which to base a conclusion.  That said, my friend is alive and well today and eventually overcame that part of her life.

The apparent existence of evil spirits and demons in my life was seen by some as the root cause of my depression.  I should add that I was also being treated for Anorexia Nervosa and Post traumatic Stress Disorder (PTSD) but most people (including those who were taking this approach) were either not aware of that or ignored it.  I might have been literally skin and bone but mostly this was either ignored or actually praised (many thought and said that I looked great and that my diet and exercise regime must be working really well). I suspect they would have had a field day if they’d known of the other issues.

So the focus was on the depression.  As I’ve said before, I was an active Christian at the time and had grown up in a Christian family (although it wasn’t my family that were involved with this search for answers to my decline in mental health).  I knew very well that there were many people praying for me, although I had little idea of what most were actually praying for.  I appreciated their commitment (mostly) but left them to it.  I had no desire to join this prayer effort.  At the time I was sure that nothing, including prayer, would save me.  I simply knew that for many Christians to be able to tell a person that they are praying for them, absolved them of any other responsibility (is that too harsh?) and also put their mind at ease.  They’ve done something to help.  They don’t feel quite so helpless.

My (soon-to-be husband) was very anxious to find a spiritual reason for my illness (the cynical me would suggest that he took this approach to get the heat off his role) and arranged for me to see a Catholic (BTW I was not Catholic) priest who was well known in the city where we lived for having a “successful healing ministry”.  There were about five people in the room including this priest.  Before they prayed I was asked many questions in their attempt to understand the evil forces that were apparently in my life.  They were keen to know how I had sinned and how I might have let ‘the Devil‘ into my life.  They eventually found no reason why there should be such forces in my life until they started to question me about my family background.

The short story is that my grandfather had been part of the Freemasons during his life (by this stage he had died and actually I don’t think he was a part of this organisation during my lifetime).  Some Christian people believe that the Freemasons are some type of secret, evil religion and according to the people I was with that day, they were a completely evil influence.

I was told that it was my grandfather’s fault that I had Depression, and from memory I think they prayed for me that ‘the evil spirits let into my life by my grandfather‘ would be gone.  There was so dramatic exorcism this time, maybe because I was sitting thinking  ‘how the heck can my grandfather who loved me and would never, ever have done anything to hurt me… cause this?’  My heart was definitely not in what they were doing, and no doubt if I went back and questioned why I wasn’t healed of Depression, it would have been my fault.

I don’t believe for a minute that my grandfather contributed in any way to my mental illness.  He would have been devastated to be blamed for my suffering.  Furthermore I think it’s sad that they searched until they had something to hang a nail on, but never once asked me anything that might have lead to the real reasons for my mental illness.

While I do believe that there can be a spiritual element to mental illness, I don’t and never did, believe that to be the case for me.  At the time I probably couldn’t put words to the reasons for my emerging mental illness, it took years before I could even begin to find words.  Now that I have a much better understanding of my illness, I know it was nothing to do with spiritual forces and more importantly nothing to do with my grandfather.  They were grasping at straws, and in my mind were doing so dangerously.

Much like the documentary on homosexuality where ‘therapists’ seemed to be grasping a straws too.  Homsexuality was apparently caused by sin and/or abuse.  It all leaves me sad for those who must carry the weight of those straws.

Postscript
While I was an active Christian for more than half my life, I have since removed myself from any organised religion mostly because of my experience as a person with a mental illness trying to be find a place I would fit.   I still hold Christian beliefs but they are personal, and I have no desire to push them onto anyone else.

I see my own spirituality as a personal expression of belief and I respect whatever beliefs you may or may not have as your right.  All that said, I write about my experiences such as that above, because it has been a major influence in my life and I admit, some of the force behind my illness.  It’s not something I want to deny.  Nor do I have much desire to get into a criticism of beliefs different to my own.  I hope that I have largely avoided that here.  It is simply that what I have  labelled the ‘Cure Me, I’m Depressed‘ approach to my mental illness did not work for me.  That said, if a similar approach has worked for others then I am happy for them.

Who’s Going To Look After Me?

Who’s going to look after me?  Well, I guess that’s Me!

(If you’ve got this far then you’ve got the answer now, so if you choose to skip the rest of the post below, I’ll understand😉 )

I live on my own and have done so for a while now.  Actually to many people’s surprise, I like it that way.  And I’ve learnt how to look after me, simply because there is no one else who is going to do it.  That means that I know how to do many things that others assume need two people.  Chronic illness (and low income) mean I know how to fend for myself with whatever is in the house, and whatever is missing.  Sure, sometimes it would be nice to have someone look after me, but I don’t need it.  And that is a huge advantage in my life as it is right now.

Today was one of those days where I woke up immediately knowing that fibromyalgia was here for a visit.  With an anthem of Beethoven’s Ode to Joy ringing in my ears (thanks to the still ever-present music hallucinations) I can’t say I was overly enthused about the day.  Played once is lovely but when it’s gone on repetitively for about 30 times, any music turns to beyond ugly.

Add to that, a feeling around my head that brain fog was back (oh yay!) and my body feeling the presence of a hundred rocks and shards of broken glass.  Nothing was looking good, although I don’t want to misrepresent things.  There are plenty of days which are worse, I just knew that today I needed to rest.  Otherwise bad would probably become worse.

As usual there were things that weren’t going to happen.  Perhaps most important (to J anyway) was that I wasn’t going to get my nephew’s birthday present wrapped and posted in time for his birthday on Saturday.  Sorry J.

And the usual support I give to another human being most days, was also not going to happen.  She’s used to this.  She doesn’t necessarily understand the existence of chronic illness in my life but she knows the consequences for her.  And that’s what matters in her world.

I rang and made my apologies.  Right now is the time I most need to hold onto looking after me.  It would be very easy to give in, regardless of how bad I feel, when I hear on the other end of the phone:

What About Me?

followed shortly after by

Who’s Going To Look After Me?

Those are really hard questions to answer, especially when you’ve had almost a lifetime of wonky learning that I have had to re-learn for myself with many hours of therapy and self-talk.  I should stick in right here that actually there wasn’t necessarily anything wrong with the teaching I got.  It simply wasn’t detailed enough.  You see I learnt half the message, and more often than not, failed to get the important part.  While I don’t have children and so I don’t know a whole heap about teaching them, it strikes me that many times something I needed to learn as a child was simplified so much that I entirely missed the point.

I’m not blaming anyone for this. It just happened.  I missed the point so many times, but I know many children taught the same lesson, got it.  Maybe I just learn differently.  Maybe I just needed more specifics.  Maybe… anything.  It’s simply that what I got in the way of teaching didn’t work for me.

One of the things I learnt, rightly or wrongly, was to put other people ahead of myself.  My lessons with Christian based and there is plenty in the Bible that I could misinterpret to believe (as a child) that everyone else was more important than me.  This isn’t a biblical post so I’m not going to get into what the lesson really was meant to be.  What matters is what I learnt.  Anyone on this planet was more important than me and I had to put their needs first.  It’s just a shame that no one realised how wrong I had got this.

While I’ve now learnt that I matter and that I need to take care of myself, the damage was done and in spite of many hours therapy, and many hours talking to the person who taught me as a child, if I’m not careful I still find my thoughts going back to putting everybody else first.  It’s nothing to do with selflessness either.  Just me not realising that my needs mattered.  Actually the line I learnt (from a Sunday School song) was “Jesus first, Yourself last and Others in between”.  It spelt J-O-Y and I was under the impression that I would be happy if I put myself last.  It is still very firmly stuck in my mind, and I have to consciously change my thinking.  It’s really no wonder that I ended up deeply depressed years later.

So today when the question “Who’s going to look after me?” came through the telephone I had to consciously stop myself from leaping to look after her.  I had to put my needs first, and I know that if I hadn’t it would be longer before I could be back to her.

Maybe it seems so simple, and I know there have been a few therapists in my time who didn’t seem to understand how much I had this stuck in my mind.  I guess when I learnt this as a child, even though I got it wrong, I held onto it.  Tight.  So much so that many years later, it is a constant battle in my head to change that almost automatic thinking.

Today I’m looking after me.  Tomorrow I will be too.  And for the third person in this post?  I left her with a few ideas of how she could care for herself today.

“If I had my child to raise all over again,
I’d finger paint more, and point the finger less.
I’d do less correcting, and more connecting.
I’d take my eyes off my watch, and watch with my eyes.
I would care to know less, and know to care more.
I’d take more hikes and fly more kites.
I’d stop playing serious, and seriously play.
I’d run through more fields, and gaze at more stars.
I’d do more hugging, and less tugging.
I would be firm less often, and affirm much more.
I’d build self esteem first, and the house later.
I’d teach less about the love of power, and more about the power of love.” 

— Diane Loomans