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.
I was so excited that I could stand and balance! (until you are unable to coordinate these two activities without support you will probably not fully understand how significant this is) I intended to record the exercises and prepare a Facebook post to share with those who follow my GBS journey. I combined video clips from my PT session and included my song of the week – omitting the exhaustion, the heat pads and the transcutaneous electrical nerve stimulation (TENS) treatments that are mandatory after each session – the result was a 3+ minute video that was so surprisingly surreal it gave me goose bumps and caused unshed tears to burn my eyes and tighten my throat…watching myself brought absolute pleasure…“sweet.”
At about the 7th viewing, the flurry of gratifying emotions found in my moment of bliss faded and the unchanging truth hit me like a ton of bricks. I had allowed myself to forget that it has been 19 months since I started PT, that equates to over 200 PT sessions and in excess of 375 hours of therapy yet surgery is still the only option to restore function of my hip joints and give me a fighting chance to fully recover from Guillain-Barré Syndrome (GBS) and Neurogenic Heterotopic Ossification (NHO).
That is my “bitter” reality and the pain was equally surreal but for an entirely different set of reasons – I am not where I was yet I am not remotely close to where I need to be. What is worst, I actually questioned the celebration of my small victory and the impact it might have on the medical fund appeal.
Life with GBS & NHO ought to be included in the list of definitions for ” bittersweet” , the explanation in italics will read – pleasure from the progress of my recovery from GBS mixed with sadness from stagnation with the surgery to correct the NHO and all the triumphs and insecurities that define the two.
31st January, 2018: 727 days with GBS & NHO and I am equal parts devastated and overjoyed by the mockery of it all.
*** At their absolute best, GBS and my recovery are utterly bittersweet ***
Albeit to varying degrees, everyone values their face and appearance – I was shocked to tears in April 2016 when I saw myself for the first time post Guillain-Barré Syndrome (GBS). In the months following I avoided pictures like a plague; my eyes were gray and lifeless, the paralysis and weight loss made my face sag and my inability to smile all made me extremely self-conscious. When I finally found the courage to share an image of myself someone asked why my face was so “sour”, needless to say I was totally deflated!
It was not until I started the blog – 12 months after my diagnosis – that I allowed myself to move pass that particular set of insecurities and anxiety.
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
In May we wore blue for Guillain-Barré Syndrome, we are wearing pink for Cancer in October and in November we will be wearing purple for Alzheimer’s Disease. Regardless of the life changing illness or the colour of the ribbon, we need the love and support of others to endure it. 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
Kellie Cadogan and the production team at East Point Productions Inc. featured The Dawn Drayton Medical Fund Appeal at their annual Jazz & Vocal Showcase – Walkin’ In My Own Shoes.
Not only did the patrons generously contribute to my medical fund appeal but we raised much needed awareness for Guillain-Barré Syndrome (GBS).
The event was phenomenal, made even more special when Akeiba Inniss and my daughter Chania Coombs of Voices 101 beautifully performed one of my favourite songs – Rise Up.
My deepest gratitude to all!
*** I will rise up ***
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
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
In the last few weeks I have listened to country music more often. Songs like “Live Like You Were Dying” and “Humble & Kind” by Tim McGraw have made it into the top 20 of my playlist. 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 never made New Year resolutions and 2017 was not going to be the year that I started but I knew that I had to make changes if I was going to deal with Guillain-Barré Syndrome (GBS) & Neurogenic Heterotopic Ossification (NHO) and remain sane in the process. 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
I had read every article, book, research paper, information booklet and personal account of Guillain-Barré Syndrome (GBS) that I could find, Neurogenic Heterotopic Ossification (NHO) and Manipulation under Anesthesia (MUA) had suffered the same fate. (If my memory was better I could probably lecture on all three of them!) Continue reading
October was a mixed bag…the Manipulation Under Anesthesia (MUA) was postponed from the 05th to the 19th. There was already so much uncertainty surrounding the procedure that I was not sure if the delay was a positive or negative omen but I was so emotionally exhausted that “Que Sera, Sera” was the only reaction I had to give. 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
I have heard that lightning does not strike in the same place twice, apparently that does not apply to me and Guillain-Barré Syndrome (GBS). When I visited with the Physical Medicine and Rehabilitation Specialist I was diagnosed with bilateral Neurogenic Heterotopic Ossification (NHO) of the hips with complete joint ankylosis. 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
10th APRIL – 28th MAY 2016
Day 66 / 10th April: After 8 weeks I was still dazed, partially paralyzed, swollen and prone to erratic blood pressures but stable enough to be transferred from MICU. I was attempting to speak but unable to make a sound so to communicate I reverted to blinking once for yes and twice for no. Continue reading
12th FEBRUARY – 10th 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 11th 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: 05th – 11th FEBRUARY 2016
The sunrise of the 05th 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