Giving it a voice

I’m a big believer in speaking out for those who don’t have a voice. Every time I see an opportunity to put a face to young stroke, to advocate for stroke awareness, to speak out about how things were and how they can change: I take it.

Which is what led me to be involved in the PEEK Stroke Survey. It required participants to answer survey questions and a phone interview about their experiences with care after a stroke.

One question the researcher asked me was what I would say to the health minister if I had the opportunity.

And what I said was this:

To put money into developing facilities that care specifically for stroke survivors, particularly young stroke survivors. Our care needs are dramatically different to older stroke survivors. Yes, we need physio, OT, speech therapy. But we also need help working out how we are going to live our lives now we’ve had a stroke.

What I would like to have said, now that I have had time to process the question, would continue:

We need to connect with other survivors.

We need to think about how (or if) we’re going to work.

Play.

Relax.

Our relationship with our families.

Our relationship with our partners.

Future relationships.

The researcher specifically asked about relationships. I had to answer honestly that many people simply abandoned me. I was too hard. Too much work. You really know who your friends are after you’ve had a stroke.

One HUGE hole in my stroke care was the lack of attention to the emotional, social and psychological impact of stroke. For me it’s had an absolutely devastating effect. Every day I deal with the effects of my stroke. Time spent wondering why. Trying to do the best I can with what I have. I rely heavily on my family to help out. Fatigue is a battle fought on many fronts, and mental health is an essential weapon to being able to combat it.

I would tell the health minister that 6 sessions are not enough. I was treated at four different facilities for the physical care I required. Nothing was done for the emotional, social and psychological care I so desperately needed. I didn’t know anyone young who’d had a stroke. I thought my life was over.

It took years to find communities of young survivors.

It’s taken years of almost constant psychological care to find some equilibrium with this.

I now have a stutter, developed after a second stroke. The fear, the anxiety, the lack of care available, the lack of understanding from some sectors of the health care profession. My speech therapist stopped treating me because of my stutter.

I fight anxiety daily. I fight aphasia. I fight the doubt. I’m constantly fending off the Black Dog. Sometimes I feed him, just so he will lie quietly curled up on my feet. Sometimes I throw him a stick in the hopes that he will chase it and forget to come back. Sometimes I just let him follow me, and hope I will lose him in the crowd.

…Maybe I am stupid… maybe I can’t do that… maybe this is all I’ll ever be… maybe my husband will get sick of me… maybe my son won’t understand me…maybe… maybe… maybe…

Maybe I would tell the health minister that recovery and health are not just about whether I can hold a pen or walk the length of a hallway. Maybe I would tell them that everyone deserves to live a meaningful life. Maybe I would tell them that I speak out because others can’t.

And maybe I’m not eloquent, maybe I lose my words, maybe I stutter.

And maybe tomorrow I’ll be the voice that nurses hear when they are dealing with young stroke survivors on their ward. Telling them to be a little more understanding, that for us, we have our whole lives ahead, and we are frightened about living in a world where everything is a challenge. And maybe we can’t sleep worrying about what the dawn will bring. Because yesterday, dawn saw me unable to move. Dawn saw me lose my voice. Dawn saw me struggling to cope with a new reality. Dawn saw that my dreams and hopes for the future had been scattered like leaves in the wind.

A song always come to mind when I think about having no voice. Jewel: Hands.

…for where there’s a man (person) who has no voice… there ours shall go singing…