Accessing 911

For a few years after the onset of this fucking condition, all my posts were about seizures and my speech. Mostly, it was about seizures as I was having up to twenty a day. Over the ensuing ten years, my speech has slightly worsened twice; both times, the change was sudden but mild. Several years ago, my posts were more about my life experience—my dull life—that about my symptoms.

Perhaps four years after the onset of my condition, Dr. S. called me a neglected child and that word, ‘neglected,’ caused an emotional crisis and my posts became focused on the process of accepting and understanding the implications of my diagnoses. Then posts settled back into the recounting of my non-adventures.

It seems like a year ago, but it was merely five days ago that my speech stopped altogether, and now I’m back to discourse on symptoms. In five more days, I will have my first session with Dr. S. since this latest step down in my speech capacity; it was a big, big step. One day, I will get used to being mute. I arrived at this point in my mental health journey prepared. I have my Summer uniform ready.

I walked Sheba early so that I could leave her home when I went to the clinic for blood tests. We were on the trails, shortly after 7:00. The lab opens at 8:00, and I wanted to be there early to be sure to get in. It’s a very busy place. Happily, I was finished in time to join my friends to walk our dogs.

I can key-speak with them. Not very well, but even what little I can say to them is better than being mute. Key-speaking makes me present. I don’t feel invisible when I can key-speak. And during part of our walk, I felt very calm and content. It was wonderful to be at peace. Being mute enables me to opt out of discussions and just focus on nature. And being with my friends who now, know, about my muteness, that makes me feel comfortable.

I have adopted wearing a whistle that I can blow to get attention, or in an emergency. Adaption comes in little steps.

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And check this out!

I wrote to BC Emergency Health Services because they run the 911 service, and as I single and dysfluent person, I wrote asking to talk to someone about how dysfluent people can communicate with the 911 service. I told them about the grant that Aidan and I got to work on improving access to medical services for non-verbals. I had few expectations due to past experiences but read his reply below! This response made both Aidan and I extremely happy and excited. I’m really chuffed by the advocacy initiatives that I am taking.

Hello Chris,

Thank you very much for reaching out and for sharing your experiences so openly. I appreciate the time and care you took to explain both your personal perspective and the work you and your colleagues are doing to improve access to medical care for dysfluent people.

This sounds like a meaningful and important opportunity, and I would welcome the chance to connect with you to hear more about your work and the ideas you are exploring. I also want to be mindful of what works best for you, please let me know your preferred way of communicating or connecting (for example, video, chat, email, or any specific accommodations that are helpful), and I will do my best to accommodate that. Following our conversation, I would be happy to loop in the appropriate departments and colleagues within our organization to continue the discussion and explore possible next steps.

Thank you again for reaching out. I look forward to connecting in a way that feels comfortable and effective for you.

Warm regards,

Darren Metta Manager, Clinical Governance | Risk Management

I mean, seriously, could he have written a more generous, open, sincere and co-operative response? I’m in love with Darren already. We may be able to develop a protocol for serving my fellow dysfluent people!

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I had a long nap after lunch. I was drained of all my energy by the stress of the past few days. I welcomed the gentle rain that fell all day. The yard and gardens needed it, and it made it easy for me to rest for much of the day. Late in the afternoon, we went into the village and then for our third walk of the day.

And soon it was dinner time, chaise time, and then bedtime. I welcomed sleep, and I loved falling asleep to the sound of rain—real rain—on the roof. It was a good day, thanks to my letter from Darren at BC Emergency Services.

And more interesting news. When I got home, I brought a copy of our local newspaper with me, and guess what was inside! An article by me! I wrote it months ago when Derek, the editor, asked me to when I told him about challenges I was facing.

This morning, I got back to the lab for the tests for which I must fast. The rest of the day is mine to enjoy by myself. It’s going to be a nice day, weather wise, but I shall focus on having a slow day. I’m holding my breath until I see Dr. S.