Monday, 25 April 2022



Last night I woke up in the middle of the night in distress, thinking about so many different things that are going on in my life right now and also many things that have occurred in the past. My mind was searching as to "why I feel the way I feel?"

As I lay there thinking and crying, remembering various events, I realised that I seem to feel this way over a similar period of time each year that passes..... and have felt this way over so many years that I've lost count! After hours of sleeplessness, It suddenly dawned on me that this was the time of year that we received a diagnosis for Heni before she was born....that she would have Edwards Syndrome, a severe chromosome abnormality with bleak prospects of life expectancy. It also dawned on me that this was the time of year that I received the news seven years previous to that, that my father had esophageal cancer and would likely die very quickly. To add to that It is also the time of year that I was given the news that my mother was on a quick decline and to return home as she was about to pass imminently. 

The body remembers.... even if the mind sometimes tries to push it out of consciousness.... it gives us signs and hints as to what is still left unhealed..... and last night many things returned to consciousness and I felt validated that the reason "why" I was feeling what I was feeling was the remembrance of those anticipatory grief "triggers" that had been just simmering in the back drop of my mind still awaiting processing.

Grief is by nature, complicated. Sometimes we deal with the emotions that emerge and sometimes we push them back down ready for them to reemerge at a later date further down the line. Sometimes we recognize the feelings for what they are and sometimes we don't know why we feel the way we do. There are many things that can side track us in every day life from our healing and there are old wounds that come up and sometimes hinder that healing too. 

They say that time heals.... but it doesn't...it's not just time that counts,  it's what we do with that time that matters. It's HOW we deal with the emotions/ feelings/ pain that is important... it's the WORK we do to overcome it, because without that work things stay put and time alone does nothing. Last night these thoughts came up ready to be healed.... and more work is needed and ahead. I've done a lot of grief work over the last five years both by myself, with counseling and as I studied to become a certified grief educator (Grief.com)..... but it appears that there is still more left to do.

 

 

Grief takes time. It is the processing of information, feelings and emotions, the expression of the love that we had for our loved one...love left with no where to go anymore... a redistributing of that time , attention and space that our loved one occupied while here with us but is now left vacant. When they leave we need to learn how to grow life around that gaping hole that is left, and surround if with something different. 

it takes time to untangle the many things that come up and at times others can judge this process ...they can tell you that its taking too long, that you should be done by now and that you should be over it. You are never over it! It's like telling someone to stop loving the person who is no longer there. Yes, you move forwards but you take that person with you in your heart and find ways to honor them and keep them a part of your life even if their life is over. 

 So it's somewhat conflicting when the DSM is now categorizing "Prolonged grief" as a disorder... a thing to be medicated and treated. So what IS actually a natural process of coming to terms with loss is now being pathologized and at the same time will become stigmatized. 

I just listened to a discussion on line about this subject and I would highly recommend it. Grief experts discussing the downfalls of the DSM and confirming that grief is a natural process most of the time. Yes, sometimes people do get "stuck" in their grief but there are other ways of becoming unstuck without the extra stress and shame that a diagnosis may bring with it and the pressure from family and friends to push you through grief quicker than you can process. Not to mention the numbing that can be brought about by medication that stops that unraveling process in its tracks. Also all medication has side effects that need to be factored in too. Feelings need to be felt, moved though and expressed and as David Kessler is quoted as saying..."If you have 10,000 tears to cry you can't stop at 500", nor should you be made to. Each one needs to come out in it's own time and in it's own way. Have a listen  to the discussion below..... you may just realize that prolonged grief is just plain old NORMAL after all!


 

Until next time 


Jx

 

Sunday, 4 April 2021

 

 

                                          Meditations on Grief

 



As many of you may know by now, (from reading the blog), we lost our daughter just over four years ago and life since that point has been a process of grieving and finding new meaning and purpose. Grief is a journey that doesn't end... the pain of the loss doesn't just go away. However, It does get more manageable and gradually bit by bit life starts enlarging around the pain in the middle. 

Its a tumultuous journey of ups and downs... at times you can grieve openly and other times you may feel like others just don't understand and you hide it away, trying to figure out what is acceptable or appropriate. You feel broken... but you learn that you are not broken... and you not only GO through the grief (as David Kessler, a well known grief expert puts it) but you GROW through it. You learn that you can't "DO" grief wrong and that its very individualized. 

I love what David says, when asked, "How long do you grieve?" His answer is so to the point..."How long is the person dead?".

I also find the story that he tells... of how buffalo's run in to a storm to shorten the time that they will have to spend in the worst part of it. Most people do the opposite....people run away from grief and try and avoid the pain and emotional storms and in doing so often elongate the time that they spend in its epicenter. As the sayings go... what we resist persists! and "you can't heal from what you don't feel" 

 

Sunday, 10 May 2020

Lockdowns and Liberations






I just literally almost had a heart attack! 
I haven't logged on to Blogger or on to Henibean for quite a while, but for some reason today I tried to access it through my Instagram account and it said my accounts didn't exist anymore! I couldn't find them anywhere.
I can't begin to tell you how my heart flipped upside down, inside out and fell into the nethermost parts of my stomach. The hours I have spent writing, musing, creating.... during Heni's last few years of life... the therapy that it was for me... the memories it contained... the source of hope that I pray it gave/gives other families in the same situation as us... all gone?



 The prospect that it had ceased to exist made me panic, search frantically through the web...and fortunately, the heart attack was averted and was replaced by a skip in beat as my blog miraculously showed up before my eyes again. Phew! 
All of a sudden (amid the eagerness to find and keep what I had created), a desire to write something came leaping back again. Maybe nothing huge or grandiose but just a desire to share a little right now and to reach out and check that you are still there and that you are ok?

It's been a weird, surreal, almost dystopian time in the last few months hasn't it?
 Just when I thought that we personally were nearing the zenith of yet another challenge allotted to us after having to move out of our home for the last 15 months (due to a water leak) and continuing with the ever onward ups and downs of the grief journey... something else hits us... ALL of us, and changed the lives that we currently live and know.

I'm no stranger to change. I'm well acquainted with challenges and bad news. Hey, I'm even best friends with self-isolation and can keep my own company rather well. There were often months at a time that I would stay home with Heni during her prolonged illnesses and shut the rest of the world out... living in our own little lockdown bubble.  When we ultimately emerged from our own final "Heni bubble" we each had to work to adapt to a new status quo, look at what we had gained and lost... and learn how to live without her and enquire "what next"?  


....and so although lockdown with Covid19 has had its unique challenges for us personally,  I'm cognisant of the fact that all lockdowns are not created equal. Some individuals have gained extra quality family time, community spirit, and a virtual couch to 5K medal... others have lost jobs, hope, and loved ones. Some have worked their socks off as key workers while others have caught up on sleep and self-care that they maybe haven't had for a very long time.  


On one hand, my lockdown has consisted of long daily walks, bike rides, runs, pilates, food, sleep, reading, virtual physio consultations with my patients, studying, tv, social media, gardening. However, this has been intermingled with boredom, feelings of displacement at not being in our own home and frustrations at our insurance company for being so useless on our house project. Also, the lack of clarity on the COVID situation and the seemingly inconsistent stories we have been told along the way has brought a certain level of distrust in what we are being fed by media. Mainly I've been regrouping and trying to get some much-needed energy back after what has seemed to be a very long slog of difficulties.  


 
Here we ALL are... people from all corners of the globe in some stage or other of lockdown, and soon, potential liberation/emancipation.   We are all going through different trials and "personal learning experiences" right now and we are all coping in different ways. When life resumes again (and it WILL), we will do it in our own way and in our own time and style...  Some will emerge out of lockdown with a new direction and skillset, others with new talents and motivation. Some will emerge more emotionally battered, or even physically ...with bruises and broken marriages. BUT hopefully, the liberation that we will all feel will be a little more than the ability to go out of the house and be outdoors and exercise whenever we want. I'd like to believe that we will all come out of this with somewhat more.  
Regardless of how we emerge from our governments' lockdowns that have been imposed upon us, I'd like to think that we will emerge having changed for the better.  To surface with greater clarity for the future and having maintained our freedom to choose our way and live our own truth. Mostly to have gained a greater capacity to control our individual reactions to adversity.  

I've always loved Victor Frankl's book, "man's search for meaning"  and some of the quotations in it ring true in many circumstances... of both life and death, lockdown and liberation. So I thought I'd share a few with you below.

Viktor Frankl Stoic Quote - TO CHOOSE ONE’S OWN WAY Canvas Print


        “The meaning of life is to give life meaning.”
                     ― Viktor E. Frankl

So I guess what I am trying to say in a roundabout way is that although we didn't choose lockdown  (like we don't choose many challenges in life),
we all possess a capacity to choose how we will respond right now... and hopefully grow from it eventually as a result. I'd like to think that no matter what heartache or difficulty it may have brought for you personally, that you can know (like I know from my own previous learning with Heni) that there WILL be positive things that come out of it. All we have to do is look for them and wait while we each work to adapt to a new status quo, look at what we have gained and lost... and learn how best to live as we look to "what next"?  


 


I would be interested to know what you have done during your lockdowns and what they have taught you? What would you like your "new normal" to look like when you are finally liberated? I'd love you to message me on Facebook or Instagram or leave me a comment below. 

I  am feeling so thankful that the blog still exists and I hope I'll be back writing again real soon ; )

Know that I'm thinking of you all...until next time...

Jx



Thursday, 7 March 2019

Pain - self education resources





                                                The above pain scale is by Allie Brosh




I promised a while back that I would share a few of my favorite "go to's" that I've found useful for patients to learn more about pain and how to get rid of it.  
 

Here are a few below:-


1) Heal your pain now" by Dr Joe Tatta DPT, CNS

Part of my role as a physiotherapist is to explain pain and work with my patients to help them to reduce/remove it from their lives. When I came across the book (below), I was really pleased to see that it was a comprehensive "homework" resource that I could advise them to read between sessions.







Saturday, 29 September 2018



PAIN.....The first real episode was after lifting far too much weight during a squatting session when I was 15... the second major one, years later, lifting a patient who decided they didn't want to stand anymore. After numerous sports injuries, four babies and 21 years of lifting my disabled daughter (HENI) my back was pretty much shot to pieces. I, like many of you have suffered chronic pain for years. Even though looking in from the outside I can still run and exercise etc, there hasn't been a day in a very long time without feeling Pain. I understand pain intimately, (experientially as well as academically) and I've worked hard (since Heni passed away) to reduce it, and hopefully eliminate it from my life once and for all.


 

Friday, 20 July 2018

A New love?




It's been a while since I had the desire to write on here..... but something just keeps pulling me back. Maybe my reluctance thus far stems from the fact that Heni (who my blog centered around) is no longer here. It's a year and 9 months since she passed away... and yesterday, the (19th of July) we celebrated what would have been her 23rd birthday at the beach.


Henibean was originally written around my life with Heni ...a Trisomy 18 warrior... the whole blog was pretty much a record of how I tried to keep some semblance of health, sanity, creativity and balance in my life and family throughout her last few years of life.

Sunday, 18 March 2018

World Trisomy 18 awareness day




It's Sunday the 18th of March 2018....World Trisomy 18 awareness day (and month)!

It seems like forever since I last wrote anything here on the blog and I've missed it... but It's been a journey of many ups and downs and even now over one year on from losing Heni, our Trisomy 18 warrior, it's still really hard and a constant daily battle. A journey of adjustment to life without her.
However, despite the lack of motivation that I often have (to put words about how I feel down here on these pages) I didn't want today to slip by and NOT remind myself (and you) of the enormous blessing that my daughter was and that all of these precious little souls with T18 are.

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