Dawn Drayton

It is suggested that bloggers plan content in advance – I do not! My process serves as an emotional release so I just put pen to paper (i.e. fingertips to a keyboard) and by month end I have at least 20 roughly written text based on one thing or another that I felt, read or heard during the month. When I decided to use this particular musing as my March 31st post it was with a calm resolve – I had managed to inspire myself with the way I related the project* to my journey with Guillain-Barré Syndrome (GBS) + Neurogenic Heterotopic Ossification (NHO) and I was chin deep in my conviction that I am not giving up on my dream to have hip surgery.

*Project semicolon was started in 2013 to support persons who struggle with but overcome self-injury, addiction, thoughts of suicide and depression. The semicolon was chosen because in literature it is used when a writer chooses not to end a sentence. Likewise, when persons (writers) choose not to end their lives (sentences), the semicolon tattoo/symbol is an outward sign of the strength exhibited to make that choice.

Familiar with the struggles of depression and anxiety I can get behind the movement. GBS was my semicolon – the pause between the two main clauses of my life and the point at which I used inner strength I did not know I possessed to make a choice to rise above my depression and physical pain to continue living as best I could. A choice that while first made in 2016, I still have to consciously make daily. 

I was editing a paragraph intending to employ jest as a means of convincing you (read: us) that I prefer to use my physical scars as my signs of strength – as I (read: we) blatantly ignore the fact that I have declared “I am getting a tattoo on my birthday” every year for the last 20 years and I still do not have one simply because I am scared – when I received a call that started with “Dawn, are you sitting down?” The paragraph, the banter and my original ending were instantly altered…

Death is as permanent as a tattoo and I lost a very dear friend to it today… it is the kind of loss that makes taking a deep breath extremely difficult. He was a ‘point of light’ for me and I cannot imagine navigating the darkness without his confident and reassuring presence. Exactly 3 years, 1 month and 20 days after my GBS diagnosis I am in another sudden and devastating tailspin that I cannot immediately process and even though somewhere in the recesses of my mind I consider it significant that I was actively thinking/writing about choosing to overcome depression when I got that call; this experience will without a doubt be another semicolon in my life.

March 31st, 2019: 1,151 days with GBS & NHO and I am back at the beginning (https://www.dawndrayton-gbs.com/hello-world/) but with an addendum…. 

On the 30th of March 2019 at 6:22 p.m., I had a brief exchange with a friend. I have gone over this in my mind so many times, I wonder what I would have said or done differently if I knew what was coming, the glory and agony of hindsight….

***Life goes by in the blink of an eye…appreciate the moments and cherish the people you love because you never know when they will be gone from this life ***

 – Rest In Peace and Rise In Glory Terrence – You Are Destined to Soar With The Angels – 

I have happy, childhood memories of window shopping; the thick glass of the storefronts was like a magic trick that made the lights brighter and the displays more impressive. Years later I am experiencing a reversed version of those moments – much like the inanimate objects that were fixed and staged I am stuck in the ‘ my recovery from Guillain-Barré Syndrome (GBS) will always be incomplete because I need surgery to correct the Neurogenic Heterotopic Ossification (NHO) ’ position. Continue reading →

I intended this post to be an epic rant but at some point I reminded myself that we (i.e. all humans including myself) can only understand from our individual level of perception so my epic rant is now a passionate plea…

The physical and emotional effects of Guillain-Barré Syndrome & Neurogenic Heterotopic Ossification are traumatic at best. I woke up one day and felt, looked and sounded completely different to the person I knew for over 30 years. My self-confidence was inevitably shaken and I am much more vulnerable than I care to admit (to myself or you). Your words influence and affect my life so think before you speak because your pleasantries are not always pleasant… Continue reading →

For one month every year, persons across the world acknowledge several different diseases and causes with colours, ribbons and activities. In May, some use blue for Guillain-Barré Syndrome awareness, green for Mental Health awareness and/or purple for Lupus awareness.

Regardless of the disease or the colour, these initiatives promote messages of strength, hope and courage because for us fighters, illness is not limited to a month – it is a 24/7 365 days a year battle of and for our lives.

                  *** awareness is the greatest agent of support *** 

Solitude, Isolation, Loneliness…

Three distinct words that are often analysed as a whole; some believe that solitude is connected and replenishes while isolation and loneliness are disconnected and diminishes, some proffer that loneliness and solitude are the expressions of the pain and joy (respectively) of isolation and others poetically compare a season of solitude, isolation and loneliness to a caterpillar cocooning itself before morphing into a beautiful butterfly with wings and the freedom to fly.

Continue reading →

February is a unique month; it is the shortest of the calendar year but definitely the longest of my life; to skim the surface (purposely omitting in-depth details on the pain, swelling and daily physical struggles) within the last 28 days I have celebrated the birth of my gran-mother (the silver lining), continued to grieve the deaths of my gran-father and former self, cried over the disappointment of yet another stumbling block in my quest for corrective hip surgery, joyfully reflected on or painfully agonized over – dependent on the hour of the day – the 2 years that have passed since my diagnosis with Guillain-Barré Syndrome (GBS) as well as tried and failed to rationalize why the anniversary of these tragedies seem like I am reliving the moment.

Continue reading →

Each one of my physical therapy (PT) sessions are structured to promote movement, restore physical function and reduce pain. As a personal goal, every month I try to increase my weights or reps and add a new exercise to my routine.  The last two additions were push-ups and balancing exercises using wobble cushions and boards. 4 push-ups on a good day is all it takes to make my arms tremble and the relatively basic balancing exercises can be so strenuous on my back, knees and ankles that they are rated at least a 7 out of 10 on my challenge scale, however as is true for most things, the bigger the challenge the greater the feeling of accomplishment on completion. Continue reading →

In my ‘ The Other Stuff ‘ post, I described the intense nerve pain associated with Guillain-Barré Syndrome (GBS) as a life form that threatened my sanity. Preservation of mind came only after I started to move my toes and concluded that if the unrelenting pain equated to nerve regeneration and movement it was worthwhile… Continue reading →

Today Barbados celebrated 51 years of independence from the United Kingdom. National celebrations are most often preceded by discussions and heated debates about what independence means and if it truly exists for us as a nation. Within 24 hours, the national celebrations end, the discussions cease and Christmas becomes the focus. I suspect that this cycle is not likely to change or be completed in the near future but lying here on this cold and rainy independence day (in pain!) I wonder about my independence, what it means for me and if my cycle will soon be completed…. Continue reading →

From separate conversations recently, I realized that the specifics of my paralysis and immobility are not fully understood by some persons who are following my journey with Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO). At first I was surprised, in my opinion I write (and speak) about my pain levels and physical limitations incessantly, in fact the instances where my finger hovers over the delete button while I mentally debate over repeating information occur often. Regardless, as the blog / Facebook page is to promote awareness of the effects of GBS & NHO and clarity is the precursor for true understanding here goes …  Continue reading →

At the moment that I was admitted to hospital it did not occur to me that I would be in a coma within 24 hours, I expected to be home in 5 days. At the time of my discharge from hospital – 108 days later – it did not occur to me that my paralysis and pain could be permanent, I expected therapy and time would heal me completely. At the point that I was told that my hip joints were never going to move again without invasive surgery, it did not occur to me that it would be multiple surgeries and millions of dollars, I expected difficult but doable. I could go on but for me the pattern is abundantly clear – my reality of Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) is never consistent with my expectations. Continue reading →

When I was planning for this post I intended to write about milestones – I would have highlighted the 11th of August as my 18th month anniversary with Guillain-Barré Syndrome (GBS); discussed my emotional health and the relief I felt that I am crying less; updated on my physical status and celebrated that I have moved the blog from reflective to present day writing. I had a plan, then Baptist Health (BH) contacted me. Continue reading →

Les Brown said “too many of us are not living our dreams because we are living our fears.” I can relate, I live in fear of…

…what else will be added to my current diagnoses of Guillain-Barré Syndrome (GBS), Neurogenic Heterotopic Ossification (NHO) and Osteoarthritis (OA)

…losing hope to the ever lingering depression, insecurity, despair and isolation

…waiting indefinitely to recover, hurt less, walk and get back to living

Continue reading →

The physical limitations and emotional chaos of Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) have created havoc in my life – loneliness, anxiety, boredom, depression and lack of productivity are just a few of my inherited struggles. While I am yet to find the one thing that permanently cures all, I have discovered something that makes a tremendous difference – a purpose! Continue reading →

Do you consider how your mind and body functions to allow a day in your life to happen?

I did not, my well established routine happened independent of my conscious thoughts until Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO) provided a mind-blowing clarity on how every simple and minuscule detail morphs into an expansive thing. Continue reading →

Birthdays are a celebration of life. It is a day when we acknowledge the passage of time and the cycle of change. A moment where we reflect on the past, count our blessings and plan for the future…it’s a new beginning!

March 2017 – It is impossible to survive Guillain Barré Syndrome (GBS), grieve to the extent that I do and then take life for granted. I clearly understood that the ability to breath, eat, drink, talk, move, exist, love and be loved is a privilege. 1 year ago I was a quadriplegic, in a coma and on life support, I now have an opportunity to embark on my 39th year of life – time, change and blessings – a new beginning! Continue reading →

February 2017 – how do I record time relative to the drastic changes in my life?

1 year..366 days..12 months..52 weeks..8,784 hours..527,040 minutes..31,622,400 seconds

Seconds! The 8 digits were best suited to the enormity of Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO). I was then wavering between celebrating time conquered or grieving time lost, both options had compelling supporting arguments. However, before I could decide what 1 year with GBS was going to mean for me my gran-father died suddenly and was buried on the exact date that I was admitted to hospital the previous year. It no longer felt like it was a choice, grief was over-powering. Continue reading →

I had a conversation with a lady who fought and won her battle with Cancer, I referred to her as a ‘Cancer Survivor’ but she corrected me and said that she is a ‘Cancer Fighter’; she had never embraced the term “survivor” as for her it suggested that the illness was in control which it never was. Continue reading →

I saw this image and could immediately relate it to me and the last 10 months with Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO). Continue reading →

Have you ever fantasized about something? What was going to happen, how you were going to feel and the conversations that you were going to have as you relayed the sequence of events to others! I did, I had a vivid image (and conversations ) in my mind about a successful Manipulation Under Anesthesia (MUA), the pure joy that I would have felt and the amazing story that would be told about my miracle and a decisive moment in the trauma that is Guillain-Barré Syndrome (GBS)…but that image blurred and vanished; I did not get my miracle. Continue reading →

After the consultation with the Physical Medicine and Rehabilitation Specialist & Orthopaedic Surgeon I managed to make it into the taxi before breaking down. The driver was so concerned that he pulled over and attempted to console me with kind words and prayer, in that moment I could not be comforted. Continue reading →

My experience with Guillain-Barré Syndrome (GBS) has evoked the purest and sincerest of thoughts and emotions; I am always awed to hear persons relate their interactions with me after GBS, below my dear friend Kellie Cadogan-Price shares hers… Continue reading →

Guillain-Barré Syndrome (GBS) epitomizes change, pain and time at their greatest…

Every aspect of my life had changed, I missed the person that I use to be but most of all I missed the independence that I had taken for granted. Continue reading →

There is a saying that time flies when you are having fun, the opposite holds true! I was home for only three days but they were three especially long days and I was reeling from the pain, exhaustion and whirlwind of emotions and thoughts. Continue reading →

28th – 31st May 2016

Day 114 / 28th May: 16 weeks after the onset of my symptoms I was being discharged from the hospital. Continue reading →

Regardless of the situation or the severity, illness is never isolated. GBS especially, demands that everyone with whom you come into contact with give of themselves physically and emotionally. Continue reading →

12^th FEBRUARY – 10^th APRIL 2016

Day 8 with GBS…I have no definitive memories from this moment, everything that I share with you about this period in my journey is as told to me…I attempted to take a sip of water and started choking, the paralysis had ascended to my chest and throat muscles, I was unable to swallow and was going into respiratory failure. I was immediately intubated and placed on a mechanical ventilator to breathe. Arrangements were made to transfer me to the Medical Intensive Care Unit (MICU). Continue reading →

They are days that I need all the help that I can get, when the prayers, support and care provided by those who truly love me are the only anchors I have. This song/video says it all, top five on my playlist – Andra Day’s Rise Up from the album Cheers to the Fall. Continue reading →

11th – 12th February, 2016

On the 11^th at 6:12 p.m., for only the second time in my entire life, I was admitted to hospital….I was in accident and emergency for a little over an hour before being taken to my hospital room. At this point, I was still optimistic (or in complete denial) in my thinking, the back pain and muscle weakness were associated with the Chikungunya virus and the dehydration with the vomiting. No big deal, I would be home in 5 days at the most. Continue reading →

THE BEGINNING: 05^th – 11^th FEBRUARY 2016

The sunrise of the 05^th of February 2016 was the catalyst for a series of events that threatened and failed to end my life but successfully altered its’ course forever….. Continue reading →