Many people have asked me: Who are you? How do I answer this question and encompass all that I love and fear? I struggle to know the answer myself in every day that I am alive. I look. I listen. I taste. I touch. I feel. These things bring me into the world and keep me from sliding away, but they do not define me. I speak and only vaguely capture the things I think. How can I know myself well enough to give that to anyone else? That being said, I’m going to make a few notes about myself anyway.
I hope for the endless soul and imagine an eternal life. I believe that all life is sacred and deserving of love. I believe that love is a choice we make; both a gift we offer the world and a life style that we choose to follow. I believe that all the world is shaded in grey. Within each of us is the Divine light; we can choose to allow it to shine through us.
I am a Maker.
I believe that I share in the divine through the power of creation; that the Goddess is in all those who are compelled to Make. Every day that I am alive I strive to create things. These things are my mark, the things that will be left behind for a while after I have died. These are the things that my loved ones will hold when they cannot hold me.
Into all the things I make, I pour all that I am and all that I love so that when others come to know these things they will also know me. I believe Making is love. When you weave yourself into a thing you give yourself to those you hold dearest. And if they love you, they will be able to call you back and up out of the things that you have created. In that way, we live through our creations and our love. It is why I Make.
I am Myself
I am a Wife
Blessed with love
I am a Mother
Endowed with divinity
Through the power of creation
I am a Daughter
Brought into this world
With unending hope
And the promise of the future
I am a Sister
Made fierce and strong
While forged with kindness
Protector and protected
Spiraling together forever
I am a Nurse
Holding out the hands of healing
And offering the sick comfort
And the dying love
Knowing that through this
All things are healed and made whole
I am a Writer
Creating myself and world
Sharing the inner depths of humanity
Bringing together the divine
And the humble mortal
I tell the story of the Goddess
And am remembered forever
A common Japanese proverb:
花より団子 (Hana yori dango)
Which translates as “dumplings rather than flowers” and refers to a preference for practical things rather than aesthetics. I think this sums me up well.
Men spend their lives in anticipations,—in determining to be vastly happy at some period when they have time. But the present time has one advantage over every other—it is our own. Past opportunities are gone, future have not come. We may lay in a stock of pleasures, as we would lay in a stock of wine; but if we defer the tasting of them too long, we shall find that both are soured by age. -Charles Caleb Colton-
Why the Name?
Why zebra? Zebra is the American medical slang for arriving at a surprising, often exotic, medical diagnosis when a more commonplace explanation is more likely. It is shorthand for the aphorism coined in the late 1940s by Theodore Woodward, professor at the University of Maryland School of Medicine, who instructed his medical interns: “When you hear hoofbeats behind you, don’t expect to see a zebra.” But the thing is, there are people out there who have these rare medical diseases. Because we are often misdiagnosed as having common illnesses or as not having anything at all, the EDS community has taken the zebra as it’s mascot.
And why the pig? It’s my totem animal. It’s a creature that is largely misunderstood. They are wonderful creatures. Get out there and get to know a pig! You’d be surprised what you’d find! And heck, this is true about people too.
Whether we like it or not, when you have a chronic illness it becomes a part of who you are and a part of your life. That isn’t to say that you become your chronic illness. But it definitely defines parts of you. I have both mental and physical illnesses, all of which fall under the category of invisible illnesses. I am autistic, have Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD). My primary physical diagnosis is Ehlers-Danlos Syndrome Hypermobile type (hEDS). All my other physical diagnoses can be argued are caused by the hEDS. After all, when your connective tissue is not made properly, it is fair to assume other things will not be built and/or function properly. My physical diagnosis list includes: Gastroparesis (GP), Mast Cell Activation Syndrome (MCAS), Osteoarthritis (OA), Dystonia, Postural Orthostatic Tachycardia Syndrome (POTS), Interstitial Cystitis (IC), Abdominal Migraines, Ocular Migraines, Auditory Processing Disorder, Atopic Dermatitis (eczema) and Endometriosis. Believe me, that’s plenty. But if you’re also a Zebra or a Spoonie, you know what it’s like having this kind of list.
If you are new here, you might not know who I am referring to when I am greeting the Dazzle. This is the group of people that make up my followers on various social media platforms. They are the Zebras (those with rare illnesses), the Spoonies (those with chronic illnesses), the Neurodivergents (those who have a different type of brain), the LBGTQ community and the Allies (those who are supportive to other people). Why a call it the Dazzle? Well, that’s because a group of zebras is a dazzle. Not to mention that I believe that all of you sparkle in an amazing and rare way that is worth celebrating.
Any medical information presented here is either my personal experience or being presented for general knowledge. Nothing on this site is intended to replace you visiting your doctor and getting medical advice from someone who has assessed your clinical situation. If you are having medical problems it is essential that you see a provider who you trust and who can assess you to give you medical advice tailored to the particulars of your case.