This time last year I had no idea what lessons 2016 would be bringing me. Ironically, I thought that the worse was over, having had an awful 2015, and I had a plan to get myself financially stable again and was working at the difficult issues and relationships in my life.
A year on and some of those difficult issues/relationships are very different than they were a year ago. Some of which is through my own actions, mostly though they are different due to the actions of others and my then choosing to react differently and establish and maintain boundaries. Regardless they are significantly different in shape to that which they were a year ago.
Unfortunately my health took a rapid nosedive in May and by June I was signed off work. I fought to get through it but within a couple of months I was given the strong advice to hope and work for improvement, but to anticipate my health problems being a long term issue. RADS being the most likely diagnosis with a 6-24 months prognosis of severe impact in the best cases.
Six months on and I still struggle with extreme hypersensitivity, acute allergic reactions and frequent anaphylaxis as well as ongoing breathing issues. Thankfully, with the help of a great speech language therapist I’ve mostly regained my voice. Unfortunately, I also lost so much hearing in 2016 (probably coincidentally) that regardless of my mostly having a voice now I still can’t use the telephone. So I still continue to advocate for my rights for communication by appropriate means.
The vulnerability of this hit home hard the other night. Most of the time I don’t really appreciate how deaf I became in 2016, living at home in isolation so much. My home is set up with flashing lights to alert me to some sounds and my service dog, Kai, alerts me to them as well as to many others. I don’t watch a program or movie on Netflix, or DVD, unless it has captions and I spend a lot of time reading.
However, the other night I had a complete power failure. Being deaf, and a former Girl Guide, I was prepared. I have high powered flashlights in key places within my home. I have candles and matches in places that I can find easily in the dark. I have an alternate form of heat and cooking if needed. My cell phone is kept fully charged so I that I could access the Internet. Unfortunately though, the power company never posted that they knew the power was out, why it was out or how long it was out. My amplified phones don’t work without power and I can’t hear well enough on my cell phone to understand a recorded message. Thankfully, I was able to text a friend and they called the power company for me and were able to text me the message that the company knew about the problem and were investigating. Within a few hours power was fully restored.
I think that I’ve mentioned the vulnerable persons registry before that we have here in Sault Ste Marie? So I knew that if the power was out for a few days that, because I’m registered with the service, emergency services would check on me. However, I’m a low risk as I’m not power dependent for oxygen or similar so it could be a few days before they’d check.
Given my allergies and extreme sensitivity I didn’t feel that it was safe for me to do what I’ve done in the past, which is to head to the local hospital cafeteria, or a friends house until power was restored. So I waited it out at home.
It was a very, very vulnerable feeling. Thankfully, I wasn’t totally alone, as my dogs love to snuggle up with me. I hate to think how much more isolating that experience would be for a deaf person, living truly alone.
That was my last lesson of 2016. To know, and really feel, just how truly isolating and vulnerable this combination of medical disabilities has been and remains for me.
On reflection there is nothing that I could have done differently. It wasn’t worse due to my determined independence (another lesson in 2016, that it’s OK to ask for help!).
It just was what it was.
Hopefully 2017 will bring either effective treatment, rehabilitation or remission from RADS for me. Ideally, it will bring a return to work even if that is entirely working from home.
The one thing that I do know is I have absolutely no idea what this next year will bring me, and I’m OK with that.
So perhaps the real lesson for me from 2016 was to learn to be OK with not knowing what the future will bring. That when I have spent most of the year fighting to simply breathe, maybe that’s the lesson that’s most important of all.
My job is simply to breathe….