Broken, scattered pieces
Laying strewn across the floor
Something missing and lost forever
I cannot no longer see my future
Or the person I was becoming
Now, I’m undone and something else
I am this diagnosis
This label that owns me
Stealing everything I imagined I’d become
And rewriting me without my consent
As my body cracks and crumbles
My hope turns to dust
Leaving me here to stare at my mortality in the mirror
Hello my Zebras and Spoonies. Thank you for coming over and hanging out with me for a little while. I am really glad that you are here.
Something that we don’t tend to think of as a stressor in our lives is our life transitions. These are the times in our lives that we are having a role shift or a major change in the way that we are living. Some examples of these are marriage, the birth of a child, retiring, the death of a significant person in our life, a disabling accident, or having a chronic illness that develops to the point of disabling us, getting a new job, traveling to a new location, a new place of living, getting a new house or a new apartment, getting divorced, graduating from school (high school or college), empty nest syndrome, and many others. All of these are times in our lives where we change the roles that we’re playing. With that comes a shift in our identity and how we see ourselves.
Continue reading “Life Transitions”
A year ago, a dear friend of mine lost his long battle with depression and died by suicide.
I always imagined that someone I loved committing suicide would make me angry. But of all the complex feelings that I have had, anger has never been amongst them. While I mourn and suffer because of his choice to end his life, I also understand why he chose to do so. His death is a testimony of our failure as a society. He spent most of his life dedicated to helping others with mental illness because he understood how deep those struggles effect you. Despite all his training and years of experience as a psychiatric nurse, he was not immune any more than anyone else.
Continue reading “Shift the Focus”
Hello fellow zebras and spoonies. It’s time for another talk about grief. Yup, I talk about this topic a lot. Why is that? Well, because grief is a fundamental part of the human condition and it is something that we aren’t very good at dealing with. I believe that by having better conversations about our suffering and grief, we can become better at coping and gain resilience.
Continue reading “Grieving the Self”
I am floating out here.
I cannot hold on this for ever.
There is this place inside of me
that I cannot take you.
A place that I cannot take anyone.
If you came here,
you would never come back to me.
So, let me go.
Let me go.
I have to move onto the next place
that I have never been
and maybe when I get there
I will find that something
that I have always been looking for.
Right now I feel like I am adrift
and that there is nothing to hold onto.
Without work, I am nothing.
I have nothing to do with these hands.
There is no one that needs me,
but I need them.
So, what now?
There is nothing to hold onto,
but you hold onto me.
Let me go.
There might be that something
that I am looking for in that place over there;
in that place that I have never been.
Let me go so that I can keep looking.
Looking for that something that I have never been.
So, maybe; just maybe
I can become something more then I am.
When diagnosed with a chronic illness or disorder, many complex things happen in your life. There is the moment when you have to decide who you disclose the diagnosis to and who you keep it from. This is a very personal and often complex decision filled with emotional landmines. So, what do you do when faced with denial after the disclosure?
Continue reading “Navigating Denial”
In Memoriam A. H. H. OBIIT MDCCCXXXIII: 17
BY ALFRED, LORD TENNYSON
I envy not in any moods
Continue reading “To Have Loved and Lost”
The captive void of noble rage,
The linnet born within the cage,
That never knew the summer woods:
So, you just got your EDS diagnosis. Now what?
My advice is to first take to time to process what this diagnosis means for you. There is inevitably a bunch of feelings all tangled up with this, give them space. Let yourself grieve, it is a normal part of getting a chronic illness diagnosis.
Continue reading “EDS diagnosis”
Grief is a strange thing. It comes at you when you least expect it. You think that you’re ok until you’re suddenly not. As awkward and uncomfortable as these moments can be, they are completely normal and ok. It’s not a sign that you’re unraveling.
I had to remind myself of that today. I as grocery shopping and there was this little teapot flower pot with a small red flower planted in it. When I saw it I thought to myself that I should buy that for my Grandmother because she would love it. Then reality caught up with me and I was struck with the grief of her death. So, there I was in the grocery store, holding this little pot and crying.
Continue reading “Grief”
Most people who struggle with chronic illness have also had to face an existential crisis. Most don’t call it this or realize that there is a name for it, but most of us share this experience as we move through our journey of grief. We have to face the world as it is: brutal, raw and unfair. What meaning and purpose can there possibly be in a universe that slays children with leukemia and slowly crushes you beneath the EDS heel?
Continue reading “EXISTENTIALISM SAVES US”