Cardiomyopathy- What Can I Tell You About My Story? -The Pain, The Experience of Loss, Its Deadly Affliction?

"We can never experience life unless we have gone through pain"

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It has taken a long while to get to this stage and to be able to share a story so close and personal. I am guided by the belief, strength and courage that Lo, loved helping people and giving back to good causes. Also guided by the believe that she would have been at the forefront had she been in the position to share her own personal experience in the hopes of helping other people become aware of Cardiomyopathy. 

"Dialated Cardiomyopathy"- What can I tell you about this heart condition and the impact it has had on me and my family? This is my personal journey of how I experienced the affliction of Cardiomyopathy. 

I share with you this story of my own personal story, so that you know. So that you, or somebody else who might not be aware of this condition are now aware. So that you might be in the position at earlier stages of this condition to do something about it. 

I have been lost for words since the day, our beautiful angel left this world in her entity, but not with her spirit. 

December and January each year is especially one filled with deeply heart felt re-awakening moments and realization of how precious life is. It usually feels like an automatic countdown where my body and soul does not need to be reminded of the significant loss we experienced around this period.  

I am reminded physically and emotional to the very last day,  she finally decided to leave her entity and not in spirit; in order to be with her father up in heaven, who she truly loved. She decided to depart whilst we were fast asleep and only a few minutes and miles walk away from her. Sometimes, I feel as though she knew when was the right time she could easily sneak away without causing us any further concern or worry. 

Each day when I left her Intensive Care Unit (ICU) hospital bed, it felt like another painful reminder that I had to walk away, whilst still hanging onto the belief that all would be well in the end. 

Each day until the final week and last day, it was like living a true definition of "Ground Hog Day." The very last week, last day, last hour, last few minutes still play on my mind like a movie. We would be awoken from sleep (not that we slept much) during early dark morning hours with the same familiar cell phone ring tone. 

Each morning that last week, we would be awoken mid sleep by one of the Nurses and before the hospital visiting hours to come to the hospital (we couldn't stay even if we tried at the hospital). Each visit would still be filled with some moments of hope that she would awaken yet again. 

Each day got closer to us saying the final goodbye. We would be reminded on numerous occasions by Dr's to make peace and to say our final goodbye. This was a repetitive reminder and primer to awaken us yet to another surreal reality. 

My days, weeks and months were filled with many surreal moments. It felt like I was living in a surreal world locked away from the reality of the daily norms that other people around us were still continuing to live. I felt like an outsider looking in, into a world which I once belonged to. It seemed like a familiar distance memory, which I had been unplugged from and placed into another realm which become my reality. 

Hospital food when I could eat became my new normal and the equivalent of home cooked meals. The hospital cafe became a new retreat to stop-by once in a while for a Coffee. 

The hospital pharmacy and shop became a place to refill and refuel our little angel's care needs and our needs as well for the day, or for the week. I was happy to in the position to know that she was being well taken care of. 

The hospital waiting rooms and spaces (not many) became a refuge away from home; a living rooms away from home. Only difference being was that our living space, would at times become occupied either by the same familiar faces, or new faces consisting of other family members. Some of these family members were in a similar situation as ours.  

You didn't need to ask their reason for being at ICU unit after the first hello. I could see through their eyes and soul, their daily lived experience for it mirrored mine. In them I saw a mirror image of me. 

Other times our living spaces were filled with sheer and complete quietness on hot summers day. I would pick the usual spot and chair if possible that I claimed as mine. Sat starring out of the large hospital windows into complete nothingness even though there was life in view. I would gaze past all the life below and beyond the trees into the Skye. 

These were moments of solitude and opportunities to digest my new normal. Moments to catch up on a bit of mental rest in between waiting for visiting hours to re-start again. Also family moments to go over what our agenda for the day would be.

Our daily norm of the equivalent of 9-5 pm working day, consisted of waking up early to go to the hospital until the last visiting hours which meant coming back around 7-8pm to our temporary home. 

The hospital prayer room became a place for me to escape.  Who knew I would want to seek refuge in a prayer room, but it made sense as the only place where time could possibly stand still and I could be surrounded by complete quietness. It made sense to be connected with any spiritual.  

It was a tiny space, suitable just for its function. A place to just seat still and shutout the whole world. Although I had already mentally disconnected from the "real world."

The normal world became a place that was like a far away like Alice in Wonderland World that seemed surreal and distant. As the world I now lived in was completely different.  Smiles and laughter from other people were at times a painful reminder of existence of life, as my soul had become somehow numb and dead to the feeling of what laughter meant and was only filled with deep pain. 

Shops, leisurely things, the sun and the heat did not awaken anything within me. 

I walked and existed in a world as an entity, but not in mind and not fully engaged aside from learning and becoming familiar with what this deadly disease was.  I (we) became involuntary medical experts at knowing Card-o-my-opathy inside out. 

Christmas came and passed just like any other day with no special meaning tied to it. Aside from truly appreciating with great sadness the value of life.  

New Years came with fireworks and parties being held by people in our cul-de-sac complex and home away from home; self-contained hotel apartments with security (to make us feel secure, well as most places in SA security is a requirement).

Fireworks and happy sounds pierced through our living room walls and yet it felt like living a dream. As though I was watching in a movie and soon enough the movie would be over and we would wake up and get out of this foreign city, which had become our temporally home by default.

You would think passing through Nelson Mandela's childhood village and seeing it from afar that would awake something in me. You would think that seeing his statues would awaken something in me. I felt numb 

South Africa (SA) would only remind me that we were in this place at the right, yet at the wrong time and under the most unimaginable life challenging circumstances. 

I was not there as a tourist to take in the sights, or culture, especially as my everyday normal meant visiting the ICU unit to sit with our angel to chat with her, as she slept for months. To playing her favorite music, or to reading her favorite quotes from the bible - the faith that she strongly believed in and held close to her heart.  

To imagining days that she could potentially grow up into a young beautiful woman, to seeing her in her wedding dress and imagining her with her family. 

To reading her machines for I knew exactly what each machine's function was including each intravenous tube and prescribed medication.  I become familiar with each and every medical description and intended usage. So much so, I felt empowered to question if something was a bit off or didn't appear quiet right. 

The same days would consist of walking around the hospital completing our delegated tasks for the day. Whether it consisted of paying off bills for each department or unit, visiting the pharmacy. Followed to being in the waiting room, to much needed coffee breaks in the hospital restaurant. 

Or moments walking outside the hospital, so I could catch some of the summer heat just to feel some form of life within me. Only the touch of the sun to the skin or face, was just another re-awakening of deep intense sadness. 

To days when it felt okay to leave the hospital to go out and have a meal nearby. Especially, when the hospital food had become all too familiar. The food became a function for sustainability.

Days filled with researching online, talking and negotiating with some Health Professionals, Management and Administrative Staff and being stuck with some souls whose sole purpose felt like it was to test your strength of character.

These are moments that you awaken to the reality that there are some aspect of the hospital world which are still very clinical and too administrative. Never mind that you are in the most vulnerable and challenging situation you will ever be in; it was business as usual in the hospital. 

Days when you are stuck with the a Health Professional you wished you had never crossed paths with and only know you are stuck with them, as you have no choice, or immediate alternatives (due to other Health Specialist deciding to take Christmas and New Years holiday break). 

To the most surreal moments of being surrounded by beautiful souls, such as some of the Hospital Nurses, other Doctors and family members going through similar experience us ours. 

To other beautiful souls who came from miles away just to be with our angel and to keep us company, just because they had either heard our story, or were familiar with us and felt compelled enough to visit. 

To then being surprised by "some religious folk" we will call them of the extreme kind. Who believed our angel was possessed by some evil spirit that needed to be exorcised out of her. Who felt entitled (yes entitled) to take up space and pray out-loud. Never mind us, patients and the hospital rules.  Let's stop right there and yes this became my new and surreal normal. 

Some days, I felt like screaming out bloody murder. To willing myself to find a place within my soul and center of inner calm to remain at ease; through meditation and connecting back to my existential spiritual being, I found my center of calmness. 

To days when, I wore my warrior shield and advocated on behalf of our angel. To moments, I felt compelled to advocate on behalf all of us. 

To days I wished for utter complete silence - so silent you could hear a pin drop. So I escaped into the world of daily meditation and yoga; and for that 1 hour the world stood still and nothing else existed just nothingness. Followed by sitting outside our hotel apartment balcony overlooking tall green trees and beautiful endless green land beyond some of the buildings. 

There is something peaceful and tangible when it comes to truly becoming connected to nature and the universe. These are some of the moments, I am most thankful for as they maintained my level of sanity. Including being surround my loving family members. 

The third wake up call came yet again from the hospital nurses. Another gut wrenching reminder that time with our angel was only limited and not on our side 

Many a times I have thought about doing a video to share my story, but I still get tongue tied. I feel like my voice froze in time and all I am left with are film like imagines as a memory. I am frozen perhaps due to still being tied to a deep spiritual connection 💔  and usually don’t know where to start with the exception of finding the space like today to write. 

• How do you start to tell a story of a beautiful angel that came into your life only to be taken away, so quickly, so young and so suddenly. From the time of becoming sick to only two months of her sudden illness to then passing away; before we had come to grips with it all and without any control of the outcome. 

• How do you begin to speak out-loud a story of heartbreak and one filled with deep and intense surreal moments?

• How do you begin? How would you begin? 

I share with you this story of my own personal story, so that you know. So that you, or somebody else who might not be aware of this condition are now aware. So that you might be in the position at earlier stages of this condition to do something about it. 

"We can only raise further awareness through sharing our own personal experiences in the best format we know how, in hopes that another person's life may be saved." 

• So that in one way or another if not through spoken word, so at least you know. And possibly you may be able to relate to my personal journey as well and find a bit of comfort in knowing that you are not alone. 

• So at least someone else, another young beautiful soul, or any souls who don't know about this dreadful condition know and may never have to go through this experience. 

• So that you know and aware of the steps to take, with the hopes that someone else will be treated in a timely manner and provided with the medical care that they need most. 

• I share with you this story, my own personal story for you to see it does not matter how much money you have in the world with this ailment once you are afflicted by it especially if you are not well informed in the beginning to do something to minimize it from escalating.  

• I share my story as well, for I believe it was intended for me to share. As I type there are many numerous people, similar to us in a Malawi, other countries who may not be aware of what they have. Who may not be have the means or access to adequate health care and equipment not due to the fault of their own. 

How did we get here? Lessons learnt: 

Flashback forward to a time before I decided to jump on the plane from the UK through my intensive gut intuition to fly immediately to SA. I can remember when I would speak with her everyday on my way to work and started to know all was not well. 

Earlier signs and symptoms to look out for: 

• No it was not Malaria, or some form  of bug that would eventually go away with a bit of rest, as some medical professionals thought initially. This condition may disguise itself as that at times. Helpful to know your family health history as well. It can show up suddenly and cause sudden death for people. 

• The times she could barely speak because she was struggling to breath and her charmful laughter would fade away with silence. At time's medical professional speculated it might be Asthmatic symptoms and at first the condition may present itself as such.   

• The first site of seeing a picture she sent me to me. I knew intuitively this was not some for flu or malaria; well maybe a viral infection/bug could have been a potential trigger that escalated and impacted her heart. This is can happen too 

• To first sight of seeing her, legs swollen and body as well upon my arrival in SA. These are some of the signs as well, including restlessness that you may notice. 

• You may find yourself going from one hospital to another especially if specialisms are limited, keep persevering through and follow your intuition until you find the right specialist medical professional such as a Cardiologist. 

Cardio-my-opathy is what the first medical professional called it- this word didn’t even exist in my vocabulary prior to this. This word would become imprinted and arched into my heart. Little did we know how deadly this condition could be. 

My gut ached in severe pain and urged me to fly right away from the UK to be with Mon Petit Ange, as she was flown to South Africa from Malawi; unlike some people in Malawi, we were in a fortunate position to be able to seek alternative medical option. For that opportunity I will be ever grafetul. 

Initially, her journey would start off with multiple misdiagnoses and too many delays in between due to lack of knowledge, limited medical equipment and facilities when they were needed most. These are the challenges some people face in Malawi and other countries with limited medical resources 

Like a nightmare these would not be the only challenges and obstacles she or we faced. One in the form of the very same SA Health Professional who could have afforded her and us  better care and medical experience (we shall leave it there for now, still working on Ho'oponopono on this one). 

Our little angel being the person she was would utter the words of forgiveness for those who are unkind (her exact words will forever remain with me). 

I call her an angel (Mon Petit Ange) for this is what she represented in her living form. She was giving, loving, calm, forgiving and religiously connected to her faith. This is what I truly believe caused, so many people to connect with her, even if those who had not met her before.

Never in my life did I think, nor her think, we would find ourselves in a foreign country for two months. That our lives would be flipped upside down from the moment we arrived.  Until the day she finally said her final goodbye in entity. 

You see I only had a couple of day with her before she collapsed to her only awakening for one day only before she wold remain in a coma. Like a movie, I was there for every scene that took place from the moment she collapsed, to the moment the doctor rushed into their office room to deliver the news and then to the moment the medics arrived.  

To a nurse rushing into the room, with sweetened water prompting me and my aunt who I had been with this whole time and in the beginning to drink the water. To me wondering why she would want to offer us water at this precise time and why sweetened water (these were thoughts in my mind). 

To flashing moments of feeling present and not present at, a feeling of outer body experience. 

To forcing myself to find the strength to find my legs to walk down the corridor and then around the corner, even though the nurse tried to stop me along then way. 

To seeing all these medics one on my left on the phone (looking back possibly talking to the ICU department and describing who they were bringing in and what had happened). To seeing some medic professionals dressed in green, some in the examination room, we had just left a few minutes ago.

To seeing the stretcher on the floor with someone on top of it. Again me totally disconnected from reality.  

To feeling like the ground had swallowed me whole, to the point that I could not breath and take it all in, to bringing  myself to awaken to the reality that it was my Mon Petit Ange lying there on that stretcher.  

To the point time stood still, that any form of noise, voices, sounds just become echoes in the background and belonged to a place far, far away from me. 

To the point that my my vision became blurred, as it became  flooded by streams of tears, which I didn't feel, or connect to immediately at the time. It felt like being in a dream, where you are seeing things, but are unable to move your body and to utter any words.

To the moment of finally being able to find my feet. After I had been supported back to the office by the same Nurse who attempted to offer us sweetened water earlier. 

To sitting there waiting and trying to decide what seemed like hours, but was possibly few minutes; to pick up the phone and decide who I was going to call first in my immediate family and what the first words, I could utter or articulate out-loud.  My fingers had lost their sensation and frozen in time. 

To the point of calming myself down, back to self awareness of my body. To finally seeing and hearing my aunt near me, who had also been there with me crying, praying, calling one person after another - only I could not move. I could not utter a word. I sat still. I felt paralyzed as though as someone had glue me to the seat. 

Then I remembered why the nurse had rushed in the beginning to ask us to drink the sweetened water, it all made sense now. She had been there before possibly in emergency situations like ours trying to help other distressed family members and trying to maintain their well-being and to minimizing the risk of us fainting.

Off to the ICU Unit, we went for what seemed like hours had passed by in between calls and completing hospital forms and trying to articulating why we were there. All focus was lost and any sense of being. 

The walk to the ICU took what seemed forever and to waking up to the another reality of how serious the medical condition was. 

Days would go back during the holidays of understanding the condition further, learning more from nurses, health professionals.

To trying to find alternative medical health professionals for second, or third opinion. Like a movie there would be barriers or obstacles we would face, as the specialist we required were off during the same period. 

When we found empathetic and caring medical professionals following the holiday break, we would be sat down for family briefings.  Their narrative would consist of the similar tone. To find ways to make peace and decide ultimately what we wanted to do. To the narrative that our angel would know when it was her time to leave this world. 

So I decided ultimately to make my own spiritual connection with my Mon Petit Ange just the two of us, as I stirred at outside the window far and beyond the trees into the Skye.  
We spoke silent words which brought me internal peace and hopefully peace for her as well (these words shall forever remain with me). The deeply rooted pain in my heart, felt as though it had been lifted slightly as I felt it floating away beyond the hospital window, beyond the tall trees into the Skype. 

You see I would like to believe we both made peace with what we both knew and could control; that was our love for each other. 

In the end, just like the health professional mentioned our angel decided to leave and to join her father in heaven (you see she was a believer in something greater and beyond her). So she decide it was time.

There she lay as herself with no intravenous tubes, or machines and looked very peaceful. It was this precise moment that I knew that her entity had finally departed. 

Then came the time we had to leave and say goodbye and it felt again like the ground had swallowed me whole again. As we walked away from the ICU unit, my feet became heavier and heavier. How could I leave her behind, thoughts run through my mind. For we came together how could we leave her behind? 

How could I leave you behind? 

I recall a nurse in tears running around the corner and calling my name. I knew which Nurse it was  ( a beautiful soul). Her hug, her empathy, her words will forever be with me. For it downed on me yet again that our angel was gone and we were not leaving the hospital as we usually did after hospital visiting hours to come back again.

My legs froze in time and I cried out-load for the very first time to this cruel and heart arching awakening; as I was helped outside of the hospital into the car. 

Thereafter, I continued to exist in entity, but not in full being and existence. Moments would flash by and words would be spoken which I could hear in the background. I would function because there is a level of function that creeps in when you are in an emergency, or flight situation most of the time. 

I will not be able to articulate what it felt like to walk into shops to select a white dress for her to wear.To walking into a mortuary to seeing her laying there, but not seeing her as I had see her before. To feeling like someone had kicked me in the gut several times over. Especially seeing how clinical, cold and how isolating the place was. To wanting her hair to be tied up in a ponytail just like she like it to be; as I described to the lady who would ensure our wishes were met. To choosing her coffin; all within a short and limited space of time.

So how do I tell you my story and vocalize it out-loud? 

I will skip over the days of planning the funeral to the burial to the final goodbye. 

Why do I share my story, because now feels like the right time.

• There are many people suffering with the heart condition known as Cardiomyopathy and die from it without ever knowing that their families had been afflicted by this disease to only be afflicted by it themselves.  There are many generations of families who go without knowing and die from it without ever being properly diagnosed. 

• They are many people from developing countries who do not have the right medical facilities, equipment and specialist support in their countries to help with their condition. 

• There are many of us even when we find the right help and hospital in the end that it may not also be good, due to inadequate and poor quality care by “some” not all medical professionals. Fortunately, in our case the good health professional outweighed one bad seed. 

• There are some people like us who may find themselves in foreign countries - vulnerable and in an unfamiliar medical system that they have to navigate through whilst seeking the best care of their loved ones, but not have an external outlet to help them within the country they are in. 

• There are many people who experience loss through this condition and feel like they do not have voice, or space to be able to speak about their pain. There are some people who believe they need to seek permission before they can share their painful experience.

"It only through sharing our lived experience that we can help many other living soul's become well informed" 

Advise and recommendations I can impart on you: 

• Educate yourself as much as you can about this condition. As you never know who you might be able to help steer in the right direct to go for specialist medical check up as soon as possible. 

• Get yourself tested if in doubt, or believe there might be a family history (even if not known, you will know by the sign and symptoms family members may have experienced in the past).
•  This is not one of those conditions one can shut the door to and hope it will go away. Unfortunately it can escalate very quickly and cause sudden death if the right treatment is not found for the heart. 

• Always identify your Embassy location before you travel. Including medical facilities requirements and insurance cover, should you need them when you are in a foreign country. Although I attempted to contact the British Embassy, as I was not the one who was impacted they were not in the position to help. So this is something to be aware of as well, if travelling with family members, or individuals with different nationalities. 

• When you find the right medical support, do take it seriously and continue to follow the specialist advise. 

• It might be helpful to become aware of your legal entitlements in a foreign current when it comes to raising concerns. Keeping in mind that some services may not be as responsive as you are used in your own country and may take longer to resolve by health governing bodies.

Sudden loss and grief is the hardest process ever to go through especially when you lose a soul only so young and in earlier stages of their adult life. Any form of loss is heartbreaking.

📝 Note: This is only my personal story and a reflection of my own experience in the best way I could articulate it. 

May you continue resting in eternal peace my beautiful Mon Petit Ange Lo,  I shall love you forever more plus eternity, plus infinity - your 

much older and wiser sister 😉💜💜💜

A Millions Tons of Gratitude goes out to beautiful souls in this lifetime who connected with us, in the name of Lo. Thank you being supportive, caring and very loving during our most difficult family experience with Cardiomyopathy: 

Thank you to the nurses/medical professionals from
 Cardiomyopathy UK  for all the online support you provided. I shall forever be grateful for your support and the response provided in our time of need

Sincere deep gratitude goes out: 
The Malawian Consulate Staff in Johannesburg for being responsive and proactive as soon as you discovered our situation. In providing us the support, facilities and resources we needed when it most mattered.  

Medical Professionals and Nurses at the Netcare Sunninghill Hospital especially for your daily encouragement and for bringing in some level of sanity in our lives. 

To loved ones and family friends,who did most of the ground work for us in Malawi with no questions asked you are such treasures and diamonds to keep forever in our hearts. For friends and everyone else far and wide, you are precious and beautiful souls for being there in the name of Lo. 

To Arts Connect International -To Marian Taylor Brown (Founder) & Isable Kumwembe for stirring a great cause "7 Dresses for Health," in raising further awareness about Cardiomyopathy and in helping to raise medical funds.

                                                                 

To Lo's friends you know who you are, I love each and everyone of you for loving her as much as you did and continue to do.  Love you all. 

Learn more about Cardiomyopathy here 

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