Turn back time

I realised something the other day.  Something quite profound really.

We've been recovering from our losses and our grief and our trauma for the last nearly 18 years.  

I saw a meme flash by on FB.  I've seen it a few times recently.  It basically says that we haven't been learning how to live with loss and grief and trauma, because we already know how to do that.  Instead, we've been learning how to let joy back into our lives, because we lost joy.

That really struck me -- every time I saw that meme, I thought - that is so true.

My brother has said to me several times over the last couple of years that we've been recovering.  We're remembering how much we used to love doing certain things, and now, as we're doing them, we are remembering.  He's right.

We are doing some of those things again.  We are socialising with people.  We are going out for lunch or for dinner.  We are doing stuff.  Not just sitting at home doing nothing, being sad and lonely.  Because that is literally what we were doing, for the longest time.

Craig is now working again, and loving it.  He's enjoying being part of a team, and doing something really meaningful.  Whilst other people want to stop working as soon as they can, he's looking forward to doing this for a few years yet.

I've also started realising again how much we have lost.  It wasn't just our children, and our lives with them, but also ourselves.  

I missed nearly 18 years of me.  I missed nearly 18 years of a career.  Of friends.  Of music.  Of socialising.  Of exploration.  Of fun.  Of happiness.  Of joy.  I missed nearly 18 years of that.

I'm incredibly sad about that, and quite resentful about it as well.  So many good things were taken from us.

I can put it into words now.  I couldn't for the longest time.  Now I can see other people enjoying their lives, and I think "that's what we should have been doing".  I can see what we have been missing, and that's a good thing (because I can do something about it now) and a bad thing (because we missed that for nearly 18 years).  

And we can't turn back time.

 

Another windy day

And here we are, years later again.  Another windy day.

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We've moved to Adelaide - to an apartment in the city - the central business district.  It has been many years since we've lived in the centre of a city - not since Amsterdam in fact.  We are loving it.  I'm loving the hustle and bustle.  I love the convenience.  I love the busy-ness.  I love the greenery - we live near many gardens and large parks.  I love the daytime and nighttime views.  I'm finding I'm not missing the ocean very much at all.

We have plans to build a house - yes, those 5 years in the lifestyle village were great, yet something was always missing.  We still dreamed of building a house.  So hopefully now we will do it.

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A phone conversation today reminded me that I used to have many friends.  Friends that were friends before all our losses.  I'm sad that I don't have those friends any more.  I'm more sad that I'm not that person any more - that person I used to be before grief changed me.  

The reality is that those friends were starting their families just at a time when we lost ours.  And so those friendships suffered.  It was extremely difficult to be friends with people when they were sending us their "newsletter" emails full of their pregnancies and their baby news and their childrens photos.   It was right at a time when we were so totally overwhelmed by our grief.  Our grief and our anger and denial was so profound and consuming and was with us every waking moment.  News of our friends' growing families was incredibly confronting and brutal to us.  We were not in a place to be accepting or joyful for others during those times.

The reality was that our grief snowballed over those years when we lost our three children.  It became complex and overwhelming and left us feeling so incredibly sad and alone for many years.

So when I hear (via someone else) about a person who used to be my friend being sad about our lost friendship, I think about how their lives continued, how their children were born and lived. How their daily lives include their children, every single day.  

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My lost children are part of my daily life now.  My grief for them is with me as surely as I wake up and breathe and walk every day.  I'm sure it will be a part of me until the day when I no longer wake up and breathe.

I grieve much more actively for the person I used to be.  The person I was before I buried my three children.  The person I was before I had MS.

It is difficult to explain to people.  Honestly - I think most people don't want to know and most don't care.  

Those friends, back then, they didn't really want to know.  They were busy with their lives and their pregnancies and their children.  My dead children were shocking to them.  My reality didn't fit with theirs.  And that's how the friendships died.

Thoughts on a windy afternoon

(I found this post so I thought I'd post it.  It was written about 4 years ago.)

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It's a windy afternoon, and Craig is driving to Victoria, working for a few days.

I'm home alone, with the dog and cat.

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I just read my previous post and realised that it's been more than a year since I wrote on this blog.  Lots of things have happened since then.

We survived living with my IL's for 8.5 months.  It was tough, especially through the hottest summer on records, as their house has no air conditioning, however we got through.

Since then, some major stuff happening in our lives.

We sold our land.  Yes, it was a difficult decision, but we decided that building a house, a big house, on a big block, was too much work for us.  It would have been a big financial commitment, a big time commitment and an enormous physical and mental effort for us.  We would have been busy for years setting up the house, the garage/s, the garden, etc.  And quite frankly, we need to live for the now, make the most of the now.  Because we don't know what's ahead of us.

So we sold our land (sob sob) and bought into a Lifestyle Village.  For those of you who don't know (and most people don't) the Lifestyle Village we bought into is for people aged 50+.  If you are a couple, at least one of you needs to be retired (ie. me).

Craig talked me into it, and, having been here now for nearly 7 months, I think we made the right choice.

We decided for several reasons.  Firstly, instant community.  Secondly, no children (this is a big one for us -- we were worried that if we spent all our time, energy, money, etc, on our new build, and then a young family moved in next to us, we'd have to move).  Thirdly, lock & leave -- if we want to go away, it's easy to just go and not have to worry so much about the house - the neighbours are all keeping a close eye on it!  Fourthly, we wouldn't spend all our money - we'd have enough left over to buy a motorhome.  That was a biggie - instead of committing all our finances (now and future) to a new house build), we'd be able to buy a motorhome immediately.  Which we did.  Additionally, the Lifestyle Village has parking onsite for recreational vehicles - bonus!

So, here we are.  And we're enjoying it.  We like our neighbours.  We love the location.  We totally renovated our house - so we love our house.  Our garden is well on it's way to being established.  And we have our new motorhome.

We've already been for our first major trip - up to Uluru - which was wonderful and a successful trip.  We hope to travel many more kilometres with this vehicle, which we have named the Tar Trekker.

In addition, great news:  the Ocrevus treatment is working.  My last two MRIs have shown no new lesions on my brain!  This is the best news possible.  So now we cross our fingers and hope that it continues to work.  Unfortunately, existing damage in my brain remains, so I continue to have health issues.

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I found this post so I thought I'd post it.  It was written about 4 years ago.

A move. (written about a month ago, published today)

(written about a month ago, published today)

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So, here we are.  In my in-laws home.  We have moved.

Yes.  After the diagnosis we decided that with all the extra driving up and down to the city, we needed to move closer.

We bought land close to my IL's a few months ago and we are now planning to build a house.

It looks like we may have sold our house as well (post-script: we did - it's gone).

But we needed somewhere to move to before our house was sold.  And because we have two dogs and a cat, that is difficult.

My MIL offered some time ago for us to move into their house for the duration of the build, but I was hesitant.  They need their space and we need our space.  But my MIL is persistent, and she really wants to go travelling in their caravan, but they are tied to the house because of their youngest daughter.

Craig's sister was involved in a car accident many, many years ago.  She suffered a closed head injury and has been physically and mentally disabled since then.  She lives with and is totally dependent on her parents.  So my in-laws ability to travel is very much limited by her presence.

When we started having trouble finding a place to rent, we re-thought our plans to rent a house, and instead took my MIL's offer to stay with them seriously.

So here we are.  At my in-laws place.  They're planning on leaving on the first of their travels in 3.5 weeks.  I think my MIL is excited.  My FIL could take it or leave it, but he's needed to drive the car to tow the caravan, so he has to go along.

But of course, there are limitations.    Of course.

Highly Active MS

So I've had two half infusions.  That makes one "treatment". 

I don't really like to call it a treatment because it's not.  A treatment implies some sort of healing or treating, whereas this is just a punt.  Hoping that it will be successful and maybe slow or halt the lesions.

The lesions aren't slowing yet.  I've had three MRI's so far.  First one showed up lesions and led very much to the MS diagnosis.  Second one, three months later, showed new lesions.  Neurologist concluded I had "active MS".  Third one, three months after that, showed more new lesions.  Neurologist changed his diagnosis to "highly active MS".  And the Ocrevus hasn't done much yet that we can see.

Craig and I had our birthdays.  The big 5 0.  I didn't really know what to make of it.  It's kinda hard turning 50, having just been diagnosed with a disease like MS (with no knowing the cause, and not having a cure), with three dead children, and life just sucks really.  I mean:  what am I supposed to do?  Smile and play happy?  Coz that's what most people expect.

No-one asks me how I am.  No-one.  It seems everyone else is suffering more from my diagnosis than I am.  Because (apparently) it's very difficult for my mother and my MIL that I have MS.  Really.  It's apparently terrible for them that their daughter and DIL has MS.  Can you believe it????  I certainly can't.  Bloody drama queens.  And no-one seems to care how I feel.  No-one except Craig.  I think I'd kill myself if I didn't have Craig. 

I hate not having my own space.  I hate being tied to this house.  I hate that I can't just go away.  I'm hating pretty much everything at the moment.

What if the lesions keep coming the way they currently are?  What happens then?  One day I'll wake up and can't speak, or can't move my arm(s) or can't walk?  Or one day I'll be blind?  Or worse?  What happens?  Oh, yeah, but I'm supposed to be optimistic and hopeful.

Right.

This is it

This is it.

That's what I've been thinking the last few days.  That this is it.  This is my life.  This is it.

It turns out I've been waiting this last decade or so, since losing our children, for things to get better.  For life to get better.  Turns out that isn't going to happen.  Turns out that this is it.

I'm really pissed.  I'm really angry.  I wish it was all different.  But it's not.  This is it.

I guess it really is a good thing you can't see what's going to happen in your life.

This is my life.  This is it.

And it's shit.

Empathy, or lack thereof

For quite some time, I've noticed that most people cannot empathise.

Empathy is defined in the Merriam-Webster online dictionary as:  "the action of understanding, being aware of, being sensitive to, and vicariously experiencing the feelings, thoughts, and experience of another of either the past or present without having the feelings, thoughts, and experience fully communicated in an objectively explicit manner; also: the capacity for this."

Those who have lost children, like we have, will know that it is rare to meet someone who can truly empathise with you and your loss.  In fact, the only people I've met who can do so, are other loss parents.

It's been nearly 12 years since our first loss (Freyja) and still it shocks me how little people can or will show any empathy or make any effort to.

Having recently been diagnosed with MS has reminded me of this lack.

As with loss, when I mention I have MS, people are quick to immediately jump in and tell me about their friend and/or relative and/or neighbour and/or someone else who had MS and lived a "perfectly normal" life.  They feel that this is showing empathy.  They feel that this shows they know and understand.  Whereas of course it shows anything but.

My mother (typically) immediately reminded me that her biological mother had MS for most of her adult life (as if I needed reminding), so therefore she knew everything about MS.  This is despite the fact that my mother lived with her foster parents from age 5.  Also despite the fact that her biological mother died in the early 1970's.  But still, despite these issues, my mother knows everything about MS.  She knows all about the treatments available too (despite these not being available back then).  In addition, she had a friend, who very recently died, who had MS for many years and "lived a perfectly normal life".

In fact, my mother had nothing remotely sympathetic to say to me when I was diagnosed.  All I got from her was "well, you were expecting it".  That's it.  Not even a hug.  Not a sliver of empathy.  Nothing. Nada. Niks.

Even my MIL, who has shown more empathy than my mother has about my diagnosis, has been quick to point out that she has a friend (of course) who has lived a "perfectly normal life with MS" and has only recently started to have some minor issues.

There is such an incredible lack of understanding about this disease.  And yet it seems everyone is an expert.  The facts are that everyone diagnosed with MS is different.  Everyone's challenges with MS are different.  Some people do live fairly normal and lengthy lives, but others don't.  Others live with many challenges, and some live challenging and much shorter lives.

When I first mentioned to my sister that the MS diagnosis was a real possibility for me, she said "yes, Mum told me that you think you have MS".  I politely told her that actually a neurologist and radiologist thought I had MS.  I politely told her that they thought I had MS because of (i) symptoms which I had described to him, and (ii) evidence of demyelination shown on a MRI of my brain.  She seemed quite taken aback, and then told me that "Mum hadn't mentioned that".  It didn't surprise me that my mother hadn't mentioned that.  My mother knows everything about everything, including MS (because, after all, her biological mother had MS).  What did surprise me is that my sister took my mother's word as gospel without thinking to maybe check with me.  And, again, there was no empathy.  None.

I learned quite some time ago that people are all different.  The person we are at any one time is constantly changing and evolving.  As we experience different places, different persons, different cultures, different events, we become different people.

I guess the gift of empathy is one where we can look at all those differences and yet still be able to imagine and possibly understand what life must be like for someone else.  Someone who has totally different experiences to you.

The ability to imagine and understand without having experienced.

And that, I'm continuing to find, is quite rare.

You don't get over losing a daughter or a son.

There is no cure for MS.

Try to imagine that.