ODE TO DARLING June ❤
[I respectfully write with June’s permission to use her story to help raise awareness and in the hope that someone will find inspiration from her, one of our favourite breathing tunes below!]
I met a woman through my work last year who was and remains to me most remarkable. Her name was June. We connected at a time in her life when she was working desperately hard to cling on to some quality of life because her path had been to experience the most debilitating physical condition of ALS (Amyotrophic Lateral Sclerosis) a variant of MND (Motor Neurons Disease). When I met June, her lungs were beginning to shut down due to the progression of her illness; she wanted to learn how to open up her restricted breathing so she could claim back some of her life juice. I didn’t know anything about MND other than Steven Hawkin had defied science and medicine by disobediently continuing to live on many years after his prognosis had instructed his demise. Of course, there was also the ALS ice bucket challenge of 2014 that took the world of social media by storm to raise awareness about the disease, but my experience was not that my curiosity was pricked about the condition, but more the antics of the challenges and subsequent nominations.
In short, any type of MND will see the degeneration of the nerve (neurons) and motor (which control muscles in the body) cells in the brain and along the spinal cord. This weakening of the muscles means that the body of a sufferer will begin to weaken and waste away, thus impairing movement, speech, breathing and the ability to swallow. The way that the disease progresses varies according to individual and life expectancy following a diagnosis is between 2 to 5 years.
June taught me so much. Her knowledge steamed from her need to understand what was happening to her body which she was able to learn because of her sharp, keen unrelenting mind. One of the things that I learned from June was that not many people are au fait with MND and what it means to have to live with the condition, even the support services whose task it is provide help to those people who are in need are not fully equipped both with the knowledge and or the facilities to be able to provide adequate care. I need to stress here that this is not an attack on the assistance that is available, because there are some very well-intentioned services and service staff that do their very best with what they have, I am merely stating my understanding of what I observed and listened to being expressed as her experience by my dear friend June.
The day leading up to our first meeting was a little bit bumpy. June had been referred to me and there had been a mix up of email addresses which meant it took a while for us to link, and when we did initially electronically, I knew June was a woman who was very forthright and clear with her questions and what she needed to understand about what breath therapy could do for her. When I met June face to face we got each other from the off. Humour was one of our binding threads, and we had a shared love of the ridiculous, sublime, spiritual, metaphysical and mystical. We had so much fun together, it was a truly beautiful coming together of souls.
In my ignorance of how June’s condition progressed I was unaware of its potential to advance at quite a rapid rate. As with many cruel diseases of the body, the breakdown of physical function serves to enslave one’s perfectly functioning logical mind in such a way that is very difficult to reconcile; how can it be that my thinking and comprehension is uninhibited and yet it becomes more and more impossible for me to be able to use my body?
There came a time when it became harder for June to breathe as respiratory breakdown is a key characteristic of MND/ALS, the way that each person experiences symptoms differs, but muscular erosion is inevitable. Some will find breathing compromised from early on in whilst others will only notice the effects of the breakdown of the respiratory function caused by a collapse of the diaphragm and intercostal “breathing muscles” (which cannot be reversed but managed using therapies such as Transformational Breath®) as one of the later physical symptoms. When it comes, most patients will eventually need to have a breathing machine to ensure that the body is able to receive enough oxygen to sustain life, without this, the build of carbon dioxide which cannot be expelled from the body adequately. Not getting enough air in will result in reducing the energy levels, the way that cells and organs function and not being able to get rid of carbon dioxide waste will also give rise to further symptoms such as headaches, inability to concentrate, broken sleep (which also contributes to feeling tired throughout the day), nightmare and hallucinations and loss of appetite.
What I observed with June that was heart breaking was the effect that having difficulty breathing had on her state of mind as well as her physical body. Breathing difficulties are associated with anxiety and when one feels anxious, ones breathing becomes more laboured, and as ones breathing becomes more laboured, one becomes more anxious. This impossible spiral creates another layer of hardship to an already testing dynamic. The more time I spent with June the more important it became to help her find ways to be able to relax her thoughts for as well as giving her peace of mind, it was essential in helping her to enjoy the physiological benefits that come from a mind more at peace.
As time moved on however, the inescapable drew closer. June was reaching a stage where not only her breathing was becoming an increasing challenge and her physical ability to move decreased, but the time when she would not be able to swallow was on the horizon. We had many chats during this time about what this would mean for her, and she resisted the implications and how having to be fed through a tube would impact on the remaining quality of life that she experienced. After having some time away, my next meeting with June was very different. I often used to receive information via email from June as this was a way that she could express herself well and share the things that she had been researching and learning about. June had mentioned a case to me about a man who wanted to exercise his right to die with dignity by choosing how and to a certain extent when he would pass on, this is not the same as euthanasia which in my understanding is the assisted suicide of a person in severe distress caused by a physical illness, this type of patient choice is illegal in the UK. Rather than assisted dying, a patient may control how they end their days because they can choose to withdraw life sustaining medical treatment – knowing that this treatment is the thing that is sustaining their life. Making a choice to do this will mean that it becomes a matter of time until that patient will pass over. They may also receive palliative sedation to help relieve a patient’s distress. The sedation may make them unconscious and therefore unaware of the pain caused by not having the life sustaining treatment. Such sedation is often favoured where a patient is terminally ill and in deep distress. My selfish human reaction was – no, you can’t do that, I’m not ready for you to go and what that means, and I couldn’t actually imagine not being able to have our little chats, and share information of our mutually loved interests. I manged to get over myself quickly enough that I didn’t convey any of this to June, but instead because I knew how serious she was, I asked her why she was considering this as a real option. Her answer touched me, and made me have to see things from her point of view. She was tired, tired of not having the use of her body that she has experienced the whole of her life, tired of not being free to roam and take care of herself by herself. She was frustrated and not having the strength to do the simple things like comb her hair, cut and paint her nails, walk into the conservatory to watch the birds. She was unhappy about having to wear her NIPPY machine not only during the day to help her breath but increasingly at night if not through the night. She was fed up at her loss of appetite and the difficulty (which was escalating) she had in swallowing knowing that this would necessitate a feeding tube in the not too distant future, something she cared for not at all. June wanted to know that when she went, which she knew whatever the case was on the cards sooner rather than later, she wanted to make sure that her ‘family were going to be ok’, she wanted to know that the things that she had envisaged on her passing were taken care of with absolute precision, she wanted to know that even though they would have to mourn and grieve they would do so knowing that she had given them the clearest and most straight forward of instructions on how to practically ‘deal’ with her passing without feeling guilty or constantly having to consider when it was the right time or not. Her matter of fact approach to her death was refreshing, neat, orderly and as she intended so very practical. It was the bravest thing I had heard.
June had spent many minutes, hours, days, weeks and months so intimately acquainted with the details of her condition. From first diagnosis to the probable symptoms she had and would continue to experience. She was linked to the understanding of all the treatments available from the standard medical route to the most forward thinking and all-encompassing holistic therapies all in an attempt to stem the progression of her condition, and possibly even help to reverse the incidence of symptoms. Her knowledge of treatments and common misconceptions and diagnosis of medical treatments was staggering, she was a woman that was not dramatic about her circumstance, rather circumspect and very well considered. Having taken the time to really know and understand her predicament, she wanted to make sure that everything that followed was driven by her will and desire to round things up in the best way for her.
Taking a firm decision to withdraw treatment, lead to a period of time to be spent in a hospice as part of her end of life care. During this time, June was able to spend out her last days with specialised attention surrounded by friends, family and loved ones in a controlled environment with the very best medical support. I was fortunate to be able to spend the best part of a day with June, her family and friends in the hospice. It was a sunny warmish day towards the end of March, so we took the bed outside and all sat, talked, laughed, listened to Vivaldi and drank red wine in cups (at June’s request). The atmosphere was relaxed, filled with love and a bittersweet sadness because we knew what was to come. The withdrawal of treatment meant that June was sedated in a way to ensure that she was not suffering from not being medicated. I am not clear on the detail, what I know is that is was to ease breathing so as not to make it a worry that, and to remove any other physical pain that would have otherwise been present.
June’s last days gave her a chance to make peace with life, those she loved, her lot in life and her turn this time around the merry-go-round. I had been to visit her the day after she arrived at the hospice which was a Thursday and had gone away working for the weekend, with a view to see her on my return. It was not meant, for I received a text from her husband, that June has passed in the early hours of Sunday morning. The news made me so glad of the time that I had been able to spend with her, I was saddened that I felt like I would have liked to have seen her one last time, but she had somewhere else to be. Her passing was peaceful, gentle and easy – in her sleep, just the way she wished it to be. As per her wishes and her way in life, June took care of this detail in the most fuss free and practical way.
June’s legacy is potent and far reaching. She touched the lives of many, many people in such a varied and eclectic collection of walks of life, circumstances and age groups. Every single person that had the joy and gift of knowing her would have been all the richer for it. She leaves behind her ability to share a wealth of knowledge and scatter it far and wide. She has left with me much wisdom, love, knowledge and inspiration not to mention a beautiful relationship with her family who I came to know during the time I spent with her both professionally and personally.
One of the things I cherish about the work I do is the opportunity to make a tiny bit of difference in the lives of those I interact with. Empowerment of my clients is essential, there is no mileage to be had from our arriving together if it does not leave a client with an expanded sense of self and an enhanced ability to use the tools I share to grow and be more of themselves. I am also very fortunate to be able to connect with those who need to make peace with their lives, events and people in their past to enable them in moving forward to the next phase of experience whether it is in their current body or not, this is such a divine gift for me to be able to assist them with and through.
Ta Ta June Darling – I love you millions ❤ ❤ ❤ see you soon xxx