9 long years - a reflection

9 years ago today, I was headed out to pick up students arriving for a wilderness course. I remember standing on the deck of the main building before I drove to the airport and telling one of my then best friends and also my boss that something was wrong. I wasn't feeling well. Of course I hopped in the van and drove off anyways.

In the airport, greeting and organizing students I felt shaky - a kind of internal tremor pulsing through my body. The airport at times was spinning and off-kilter. I was sweating.

Five days later I had a diagnosis of Mono. My life has never been the same. Since that day I've never managed to work more than a few hours a week. I've usually been home-bound and sometimes bed bound. I've felt SICK at some level every single day. Enough time has passed that I have trouble remembering what a "well" body feels like.

In reflection of this anniversary, I thought I'd post my five biggest losses, five gifts of the illness, and five hopes.


LOSSES:

1. My career or the ability to have a job and support myself.

2. My social life. Most of my friends have moved on and/or live all across the continent. It's hard to make new friends when I'm home bound most the time. I'm rarely well enough to go out. I'd love to date but can't get passed the chatting online because I'm usually too sick for outings. Because I have no workplace (virtual), I don't have the daily social acquaintances of a work place. ON top of it all, I'm often feeling too sick to want to socialize anyways.

3. My hobbies. I used to climb, paddle, travel, run, dogsled etc. I lost most my hobbies.

4. My body. I miss being able to exercise. It was my main method of relieving stress. I'd love to spend a day not feeling sick like I have the flu or suffering extreme weakness after attempting a small task. I miss my "well" body.

5. Self-worth, self-esteem. I have a terrible time feeling like I have any worth. I was raised in a Christan household with the constant message that our role in life was to be "useful". That old Calvinian work ethic. And in part, I still believe it. Feeling like I have nothing to offer the world/others is tough...something I struggle with constantly.

GIFTS:

While I would have never chosen this illness and want it to go away today, there are things I have learned from it.

1. Empathy. I used to look at others who were struggling and sometimes assume they weren't tough, were just pessimistic, or not really trying. I was supportive outwardly, but my internal dialogue was often different. When I first got sick I thought I could will myself out of my situation and if nothing else "tough" my way through it. But time after time after time it didn't work. This has given me empathy for others. I'm less likely "blame the person" for things often beyond our control e.g. illness, poverty, etc. I no longer believe in "pulling up the boot straps". I know better.

2. Aloneness. I used to hate being alone. Mostly I was busy and active every minute. Now I can sit with long periods of silence and aloneness without being lonely.

3. New hobbies. Due to slowing down I found some other hobbies/interests including art and reading for pleasure.

4. The small things. I think I appreciate small things more. Things most people with busy lives don't have time to appreciate or notice. A flower/plant growing. People walking by the window. A rain storm. Watching a bird for 20 minutes.


HOPES

1. I hope I get well. If not, I hope I improve. If not, I hope I don't live a good long life because I can't do another 2 or 3 decades of this.

2. I hope they find the cause and some useful treatments soon so no one else has to suffer this illness.

3. I truly hope that most the medical community, a good portion of the media, and the general public stop treating this illness like a joke. It's a terrible, disabling, often life-long condition that gets little respect and almost no research funding. It's disgusting that this illness has been around as long as it has and this goes on. I want it to change.

4. I hope they change the name of this illness - and soon.

5. I hope that year 10 is better than this last one. I hope I find a way to both minimize my symptoms some this year and also improve my outlook/attitude because I'm feeling the strain of nine years sick.