What happens when we can’t prevent the procedures and experiences that we know might be potentially traumatic? When individuals and caregivers deal with lifelong disabilities or chronic illnesses, some portion of our lives is spent doing really hard things. Sometimes we get so ‘used’ to these things that we start to think of them as ‘normal’. But no matter who you are, we each have a threshold over which we start to feel like it’s all too much. Today I want to look at protection during potentially traumatic procedures and experiences that can’t be avoided, and I want to look at protection through the avenue of support.
Advocacy is a bit of a ‘buzz-word’ in many circles, and that is definitely true when it comes to disabilities. But anytime you have buzz-words, you also end up with a lot of confusion about what advocacy looks like and how it works – especially when you are dealing with people who are vulnerable either because of their disabilities or because of the precise circumstances they find themselves in.
Today I want to tell some stories of my own medical trauma, to help those of you who haven’t experienced this to start to wrap your head around what medical trauma might look and feel like and how that might impact someone, and to help break the silence for those who have experienced medical trauma as a patient or caregiver.
Today is the International Day of Persons with Disabilities. So this week seems like a good week to get back to writing and to think about some of the issues that go hand-in-hand with disabilities.
Today I want to touch on a difficult topic for a lot of people, and that is the issue of medical trauma.
I was sitting with a friend the other day and she asked me, “Heather, what exactly is a life coach? What do you do?” And I figured maybe she wasn’t the only one who was uncertain…
Sitting with requires that we allow ourselves to feel the feelings of loss and grief, fear, rejection, being silenced or abandoned. It’s difficult, but difficult isn’t the same as impossible.
Essentially, a liminal space is the space that we occupy in the midst of transitions. And there is something about a liminal space that puts us humans on edge.
Disability is a tricky thing.
No one would say that there was a hierarchy – we would say that everyone was equally valuable.
But the truth of the matter is that some conditions are sexy – they get money and press and attention and extra resources and walks and big, multi-million-dollar foundations.
And other conditions are rare.
Other conditions are quiet.
Other conditions get passed over and missed out.
Today is Infant Loss and Awareness Day – and the 15th one I’ve observed as a mother who lost her child.
The little boy at the top of this screen is my son.
He was born the day before my 23rd birthday – the second of my three children – fifteen years ago this past August.
He was beautiful and a fighter and had these intense ‘old eyes’ that felt like they could see into the depths of your soul.
But he also had Trisomy 18 – a chromosomal abnormality similar to Down’s Syndrome that causes each and every cell to end up with too much genetic information. In Jeremiah’s case – and in the case of the 1:3000 live births with Trisomy 18 – this meant that Jeremiah’s chances of reaching his first birthday alive were less than 10%.
So I slurped up every ounce of my baby, knowing that his time was limited, but with no knowledge of exactly how long we had.
Until one day I knew.
I’ve been told by great runners that pacing is the key to a great race. But pacing is also really hard to do! I presume that this is why so many races offer ‘pace-bunnies’ – people who commit to doing the discipline of running at exactly a 6:00 km, for example, so that all that you asContinue reading “Pacing”