Hey, everyone.
To address the very immediate question I’ve gotten a surprising number of times from the various myositis communities, no I am not dead. It really does mean a lot that people cared that much to notice I had stopped writing, but really I just had a turbulent couple of years with no real anchor.

In the meantime, I kept this domain and always meant to come back to it. My goal is to post at least every couple of weeks. Some in the myositis community have kept in touch privately and it’s been awesome to see everyone trying to stay strong and move forward, each in their own way.

The last year was a challenging one and really put into perspective for us all what it means to be here on this planet. What do we do with our time? How do we take care of each other?
What many were experiencing as new restrictions have been a way of life for others for a long time.

Whether it’s a pandemic or a life-altering, and threatening, diagnosis in the middle of your 20s …these things can rapidly call into question the typical day to day existence.
And I don’t mean careers or school…I mean how we treat people next to us.

For the most part, myositis is an invisible illness, which immediately summons the more judgmental among us whether we’re struggling with making an event or have a handicap parking placard.

But the obvious truth is that we never know what the person next to us is feeling or going through. Sometimes instead of explaining it, I wish I could tap someone and give them an instant of what this feels like so that it makes sense Or someone else who is going through emotional turmoil. But we can’t.

So the next best thing we can do is treat each other with the assumption that they need our best. You never know when you can make an impact for things that are seemingly insignificant. If someone needs help, that need is as important to them as our needs are when we need them. The world is a better place when we pull each other up. My Facebook has always had the same header..’the true measure of a person is how they treat someone who does them absolutely no good’.

The uncertainty of this disease has amplified the feeling that I am not promised the time on this planet to make a continuing difference…so I try to take every opportunity I can. Everyone needs a moment of realizing that someone else is thinking of them for no other reason than they matter.

Consider that many people we don’t talk to on a regular basis may assume that we are saying hello because it’ll be followed by needing something. What if it really was just outreach for the sake of it?

I’ll admit, the environment of law school makes that a bit challenging because it is inherently competitive. People are more closed off and more on guard. They are also simply more stressed which can lead to a feeling that there is no time for anytthing else. If infusing anyone’s day with positive energy in that type of environment helps even an iota, it’s worth it….because I’m blessed to even be here to do it.
Oh yeah, law school.

So, a very quick recap of where I’ve been.
2018 – I had a very silly dustup with a rental place and ended up having to bounce around places for a while. Living out of boxes is beyond frustrating and knowing that mental stressors are important to keep in track, that period was probably the worst I had been physically and mentally since 2014. 5

2019 – Split with my ex-fiance. Truthfully it should have ended years before. I still care for her very much but our life drives…what moves us…were never really aligned. It’s a situation where I wish we could have stepped back and helped each other as friends before it got too bad, and I still hope she stays safe.

2020 – In January I had a meeting with an old History professor about restarting school. For those that don’t recall, I was originally going to go into a PhD track for History following my undergrad. However, during the lunch we decided that it made more sense to switch to another long-time option, law school. This was because I wouldnt be able to join the History program until Fall 2021 and my original target was Summer 2020.

But then…the pandemic happened and everything got really hard. On top of that, my immunosuppresion meant that I had to do what I, and so many of you in the myositis community have had to do for years…hide. The uncertainty meant that I was wearing a mask even if someone came by for a moment and washing my hands consistently even if I hadn’t gone anywhere.

The LSAT got moved around and I couldn’t take it until late summer, which means the soonest I could get in was now Fall 2021. However by the time it was all said and done, I just missed the class filling up and would have to wait for summer.

2021 – In May I was able to finally go back to school, starting at University of Kansas School of Law. I would be lying if I said it hasn’t been a challenge. A major one..from a medical standpoint. But that is for another post.

The full circle point is, I was never guaranteed to be in the position to sit in a classroom and advance my life at all. I doubted it for a very long time and wondered if ordering groceries and barely seeing sunlight was the new permanent normal. Were the last five years a preview?
So far, no. As of now I’m past a wall that seemed unclimbable a lot of days. But the world isn’t just about me…it’s about what I do in it. For us with this diagnosis, we can perhaps remember moments where there were glimmers of hope and relaxation.
It’s important we try to share those moments with others, whether we know they need it or not. We might just be the turning point for someone else in need.