Short Story from Daniel Howe – Life with FSHDAugust 14, 2016
Donate to the FSHD Global Christmas Appeal to help find a Cure!FSHD Global Research Foundation
Shane’s Christmas wish is to find a cure for FSHD so that his grandchildren never have to live with this insidious diseaseFSHD Global Research Foundation
Tania is our proud NSW State Branch President, FSHD Global Ambassador & Community Liaison and Administration Assistant. She is full of warmth, positivity and laughter despite going through a tough 12 months.FSHD Global Research Foundation
Facio Therapies AnnouncementFSHD Global Research Foundation
2019 Sydney Chocolate Ball:
Save the date!FSHD Global Research Foundation
Wyndham Destinations Corporate Surf Challenge 2018:
Wyndham Destinations Corporate Surf ChallengeFSHD Global Research Foundation
“Bill Moss the single-minded biotech and a search for a cure” – The Australian:
By Sarah-Jane Tasker - 26th of May 2018FSHD Global Research Foundation
Grant Applications – Now Open:
3D Muscle Printing Biotech TenderResearch, Grant Applications, Science
Start the New Year with a splash with our new CEO Kate:
Join us in the Cole Classic 1km Swim this February!Cole Classic, Fundraise, FSHD, Muscles for Muscles
A blog by Tracey Jackson:
International Day of People with a Disability 3 December 2017International Day of People with a Disability, FSHD, Community,
FACIOSCAPULOHUMERAL DYSTROPHY LIFESTYLE EDUCATION & EXERCISE PROGRAM (FSHD-LEEP)FSHD, Exercise, Canberra
Show your support for FSHD Global Research Foundation:
2017 Charity of the Year in the Australian Charity awardsCharity of the year, Workplace giving, Supporters
Bill Moss AO on the Alan Jones Breakfast Show:
Chairman Bill Moss AO talks with Alan Jones as the Foundation is announced as the Charity of the Year in the Australian Charity Awards 2017FSHD Media, Bill Moss AO, Alan Jones
2017 Charity of the Year!:
CHARITY OF THE YEAR ANNOUNCED AT THE AUSTRALIAN CHARITY AWARDS 2017FSHD Global, Awards, Charity of the Year
I’m 10 years old and I want to tell you what living with FSHD is like for me.FSHD, Community Story, Inspiring
Join our team and start fundraising!Fundraising, How you can help, how to register
The power of workplace giving:
Start making a difference todayFundraising, Workplace Giving, How you can help!
World FSHD Day:
Get planning for this June 20World FSHD day, Fundraise
Bone Health in FSHD:
FSHD Global Research Grant 23 UpdateBone health, FSHD, Grant 23
Our Newest Partnership: Australian Opal Cutters & Pearl Divers:
We are a proud charity partner of Australian Opal Cutters & Peal Divers.Corporate partner, pearls
Get Positive - A piece by FSHD Patron Justin ReidLiving with FSHD
Open Gardens – Mount Wilson:
FSHD Global is proud to be hosting an open garden this April 29 & 30.open gardens, Mount Wilson, FSHD Global
FSHD Global proud to be involved in unique ethical partnership:
Cape York Native Title Holders Partner with Corporate Australia to Establish Economic Empowermentcharity, donations, business, ethical, indigenous
FSHD Educational Toolkits:
Getting the support you and your health professionals needFSHD, consensus, medical guide
Rare Disease Day:
Awareness is key.FSHD, RareDiseaseDay, fundraising, awareness
A major issue for FSHDfatigue, fshd, exercise, physiotherapy
Reading the science:
How to tell the good from the not so good.FSHD, facioscapulohumeral muscular dystrophy, publications, science
Facio-therapies announce breakthrough:
Facio-therapies recently announced a breakthrough development in FSHD drug discovery.research, science, fshd, facioscapulohumeral dystrophy, biotech
Exercise & FSHD:
The Latest Studyconsensus, FSHD, exercise
We are proud to be recognised by The Australian Charity Awards:
FSHD Global has been recognised as a Winner for Outstanding Achievement in the Australian Charity Awards 2016.charity, awards, FSHD
Short Story from Daniel Howe – Life with FSHD:
Lavender BluesFSHD, lavender,
Folo – Shopping for Love:
A new way of givingfolo, philanthropy, giving, charity, shopping
A new mechanism for FSHD:
New drug targetsFSHD, D4Z4, Dux 4, science
Seeking a Volunteer Graphic Designer:
Build your portfolio and make a difference at the same time!volunteer, graphic designer
FSHD Global publishes clinical practice considerations for FSHD:
FSHD Global publishes clinical practice considerations for FSHDscience
FSHD : It’s not all just about muscles.:
FSHD: It's not just about muscles.science, muscles, FSHD
FSHD stem cells: revolutionising research:
FSHD stem cells: revolutionising researchFSHD Global Research Foundation
CRISPR & FSHD:
Harnessing a New TechnologyScience, DNA
Altering Gene Expression:
New tools with big potentialScience DNA
Treatments for FSHD:
Small Molecules: Offering hope for people with FSHDNature chemical biology
Harsh reflections and hindsight plainly revealed now how my recent twilight nightmare of an accident was such a scary but avoidable experience and one I could very well have done with-out. This dicey state of affairs occurred when I endeavored to lean over and retrieve a pair of socks left behind on my sun-deck earlier that day by a visiting grandchild. However, inadvertently I tripped right over my dog’s crumpled slumber mat and fell around one meter head-first straight into my blossoming lavender flower garden.
Just before this freaky occurrence I had showered and with only a light Japanese Kimono house gown on and no underwear, I rashly embarked past my bedroom’s french-doors to retrieve these socks. Carelessly, I had not taken my usual accompanying straight handled ‘Tokotoko’ walking stick, or even a cell phone, pointlessly leaving both behind just inside the open bedroom’s french-doors. Sometimes when busy minded and feeling fine, I still at-times over-confidently forget I’m mobility slowed these days and, making a flawed choice in motion can bring at-least one quick learning lesson, or ever increasing painful gambles with odds that favour ‘repeat performances’.
As I crashed down into the garden, I badly grazed and bruised myself all-over including whacking my head hard into a concrete border and then discovered that I could not move more than a fraction without further harsh grazing. This made me grasp even more, how nowadays … I’m like a fish out of water horizontal in this kind of situation and also realizing I would need at least a strong hand from some-one to get up from such a precarious predicament in what was predominantly a spring time flower bed.
At first I felt panicky realizing my dire situation being home on my own, then felt some relief as I remembered travelling Wwoofers from overseas had phoned that morning over accommodation for one or two of them and I’d confirmed they could arrive here in the afternoon to stay adjacent to my home in the guest cabin, which overseas travellers have been staying in when helping in the regeneration of native bush and up-keep maintenance of walking tracks over many years on this scenic semi-rural property called … ‘Point of View’.
My eldest son Danny Wayne lived on another part of the rural property, but was in Auckland until late that evening at a dinner night out, and would probably not be of any help as he most likely would go straight to his own home, too far away from me to be heard. Mark, a friend and abit of a party animal, was staying in the guest accommodation over the weekend but he was not due back from a sociable Saturday night out until maybe the next morning at the earliest. It seemed my best hope of getting up from this flowering garden before dark and endless coldness set in, was the travellers. My main concern then was, would they arrive! Being a frequent lover of travel once myself, I knew at times travellers easily can get sidetracked and then, never show up at all. Fortunately the sun stayed out the first couple of hours keeping me fairly warm … then clouds came over and with it gusty showers, the clouds lingered thicker and thicker, helped along by a cold south westerly wind blowing right up my exposed legs and all areas beyond!
As the warmth drained away from me, I cursed myself for going outside with only a house gown on and no stick, watch or cellphone. Time dragged and I realized it must be well past the time the travellers said they could arrive. Overcast and gloomy it became prematurely darker and darker, I became uncomfortably numb with the cold with increasing shivers right into the core of my bones, I often yelled for help at first, but soon gave up hollowing to save any energy I still may have had. As I got more despondent and colder I grasped the fact that neighbours don’t seem to hear from this spaced out rural distance. I then tried to get Kim (my dog) to lie across my legs to warm them, but she would only lick me or sit by my face, far too close for these sensitive nostrils. She’s a typical outside country dog in many ways, though I often feel, she’d prefer to be an inside strutting poodle, but without those regular doggie shampoo’s and trimmings.
Having mainly fallen into the Lavender bed, at-least I had aromatic surrounding and they’d cushioned me some, like a bush pillow too when bunched under my head. I also placed Lavender leaves and stems over my bare legs which helped a little with the fast cooling breeze, though I felt deep down this covering was not going to be anywhere near enough to survive the cold night ahead if no help arrived. To assist keeping calm I meditated some and carried on doing regular deep breathing exercises, which seemed to help. Spiders, ants and other things (insect wise) kept walking all over me, with increasing numbers trying a nibble or two. Probably to them, I was like a giant foreign invader, as in Gulliver’s travels, or maybe, a new generous source of fast food supply, soon to be available to all in some mighty on-going edible feast.
Dying of hypothermia in my flower garden was not something I’d ever imagined. Dying of quiet content in a warm waterbed shared well with the right company, would be a good first choice. 2nd, sharing softly some good music, quality red wine and a colourful sunset, or a glowing warm fire would do. I reflected on a few narrow escapes I’d survived so far through my life, like, when three years old falling out of a family car while it was still in motion or cracking my head open while deep diving into Bayswater primary school’s brand new swimming pool, or the time I nearly drowned in a surf beach undertow, being electrocuted, or as a teen ending up an injured passenger in a rolled car accident, being run over by a tractor twenty years later, or falling off a horse in full flight as it suddenly shied one way ‘round a tree while I, went flying around the other. Then, there was the time I lay ill with a high fever in the heat of Indonesia, wondering if I would ever see my homeland again. This time, it was a damp flower garden threatening me more and more as the day slipped into evening and chilling winds breached further into my flesh and bones.
I recalled wishing a good friend or partner would be due home, life’s been somewhat less predicable these days, since losing my best friend and lover, then another best friend my only brother Terrence, all with-in the same week too, very sad and sudden. Susan’s passing was a senseless auto accident, caused when an approaching driver fell asleep apparently after a long weekend wedding bash and smashed right through her drivers door. It’s a ‘sad and beautiful World‘. At least, I was lying in her lavender bed and hopefully would be found with fresh fragrances surrounding me dead or alive … as long as I was not left unnoticed for too long.
At-last, Kim barked quite loudly and stirred me some as a car with its lights on slowly came around the corner of my driveway. Late guests it seemed had finally arrived, I tried to wave a chilled hand some and yelled out help, help me please, lest they thought I was some sort of partly clad idiot praying, or making love to his lavender flowers or something. A cautious woman finally slowly approached just close enough to hear me as I tried to explain my miserable accident many hours earlier; thankfully she began to understand what had happened, went inside my open house and brought out a thick woolen blanket, a phone and a well appreciated cup of hot green tea with brandy.
The newly arrived guest said that when she first saw me through the misty evening light, she thought I was a giant garden gnome, then when I moved, maybe a weirdo of sorts lying down weeding his garden or maybe somehow meditating, dressed only in some sort of kaftan or Asian house gown! Her first instinct was to quickly drive away from this bizarre eerie scene; thankfully she did not.
I quickly phoned two local friends as time was now well past 9pm and there speedy arrival to help me slowly up was needed, followed by there assistance back inside besides a warm heater with yet another one of those hot green teas followed on by a very refreshing much needed very hot long shower. Once thawed out enough to again manage my newly revitalized worthwhile existence, I cheerfully consumed a couple of glasses of a full bodied Hawkes Bay Mission Reserve cab/merlot red wines and very large slices of locally ordered and well shared tasty hot pizza.
More very deserved thanks, were again freely expressed from me to those who helped my revival, then to bed, my cozy warm waterbed to again … dream on. No more lingering hardly lucid bone cold misery that night, just timely liberated moments to be nurtured and appreciated, another learning lesson to quickly absorb, or risk repeating with far worse outlooks possible than this over eventful one.
The bodies scrapes and bruises soon improved with the help of a couple of days of warm rest, tea-tree oil and a few good friendly massages. Once-more able to breath and experience life’s living moments; that sure still beat the alternative … I still say, and freezing to death is certainly not a very acceptable way to depart for anywhere, in my ever humbling opinion. A good friend phoned a couple of days after this sobering event happened and asked me, how my usually well-lived weekend had been? I said … well, unintentionally I did spend about eight hours on Saturday in my front flower garden. You, she enquired? yes me, I replied, but I never ever intend to do that ever again, no way ever … never-ever ever!
It would be unnatural
to pigeon-hole me,
as a herd animal.
Life, has never put me there
and now, existence never will.
Naturally … at-least in-part
for life has shown me
choices based on reason,
real love, happiness,
lessons and grief.
None-the-less, I am
an evolving life-form
with still more!
experiences to experience.
A circle, not yet complete.