It's Not 2020. Life Is Just Hard

 The Corona Virus came and greatly overstayed its welcome.  Then the Murder Hornets flew in.  Beloved celebrities passed, and there's new injustice, corruption, and violence everywhere.  Hurricanes destroyed cities, and wildfires nearly destroyed California.  I didn't even know there was such a thing as a fire tornado.  

Memes about how uniquely bad 2020 has been--how it feels like we are constantly under attack--are all over the Internet.  They aren't wrong.  

But I'm not sure they are right either.

Maybe I'm just used to it by now.  

My latest news is that I think I'm having an MS attack.  If so, it would be the first since the one four years ago that led to my diagnosis.

That's the unique struggle of 2020, right?  

Well, not really.  I've had at least one ongoing overarching life struggle pretty much ever since my 2016 diagnosis, except for maybe one Tuesday last November.  That was a lovely day.  I got even coffee. But otherwise, 2020 just seems like life, with a side helping of Netflix.   

Not to brag, but consider:  In November 2016 I went blind in one eye, and started getting shooting pains in all parts of my body at random intervals.  (And when I say "all," well, use your imagination.)  Among other things, MS gave me pain and soreness in my left hip that I didn't kick for about six months, which was about the same time I also accidentally kicked the wrong side of a dark street curb.  I broke my knee.

After a speedy 18-month recovery, I thought I was finally clear.  But right as I finished my 34 physical therapy sessions, my dentist (who, for the record, was not the same person as my physical therapist) told me the roots of my upper front tooth were broken. I would have to get it extracted and new bone inserted in; the process of getting a new one implanted took 11 months.  In the meantime I had to wear an ill-fitting contraption that attached to the roof of my mouth and had a flimsy fake tooth on it to fill the space.  It fell out commonly, and sometimes on public streets.  I couldn't eat with it in either, but in its defense, taking it out was a cool trick at parties.

It wasn't all bad.  Between my eye patch for the blindness, and the missing tooth, I didn't need to buy a costume to be a pirate for Halloween.  Had I thought ahead, I might have just gotten my broken leg amputated too, and a pegleg inserted! That was a missed opportunity, there.  

When my tooth implant was finally done, I developed some monster stomach issue that felt like a 4-week bout of food poisoning.  My doctors were concerned enough about it to move up my colonoscopy and give me every other test on earth, some of which involved things way grosser than a colonoscopy.  (It's best if I don't mention it here. Or ever again.)   All my tests came back negative over the next few weeks, and the doctor diagnosed it as a lingering virus.  Maybe I just wasn't used to eating with all my teeth.  Or maybe something from one of those city sidewalks stayed on my removeable tooth a little too long.  I did work in San Francisco, after all.         

I finally got the all-clear diagnosis on my stomach the day before I moved to Georgia last November.  I liked my new job.  I got coffee one Tuesday, and relaxed a little during the holidays.  I'm pretty sure I even got coffee on a Thursday as well.  It was lovely.   

A few weeks into the new year I tore a ligament in my ankle and a tendon in my finger.  After weeks of rehab, I was finally able to walk again and explore a new city and make new friends...right as the Corona Virus hit and everything shut down.  

And here we are.  

But my point isn't to complain.   Far from it.  As far as I know, I haven't caught the 'Rona, and I haven't lost a loved on to it.  I get to work from home now most of the time, which is nice when you have MS.  I can go back to a house in California and see old friends on our relaxing patio.  My wife and I can entertain, along with our cat, when I'm in town.  The cat often screws up the recipes, but she does her best.  She blames the lack of opposable thumbs.  (We let her do the cooking because she has terrible taste in choosing wines. Her picks tend to taste like sour milk, with a hint of kibble on the finish).  But I appreciate whatever she can provide.  Sometimes we have to learn to take joy whatever we can find. 

I think that approach what has been keeping me going. (Not letting the cat cook. I mean taking whatever comes and trying to make the best.)  I remember that some things are better in this version of life.  I've gotten to buzz through a few really good things on Netflix I probably would have missed otherwise.  Weekends are most restful.  I can listen to a few different church services on Sunday morning; try more new restaurants (via takeout); read more books. I don't have kids to entertain, so I got to make progress on a book I'd been procrastinating for too long. Sometimes the introvert in me summons the energy to call someone, and they probably have time to talk.  

Life can still be annoying, and I don't mean to gloss over that.  Back when I left the house, I used to hate to come home with precious little energy to face bills from incorrect bills, broken appliances, upsetting social media posts, and websites that can't remember my passwords.  Now I have to face those things I don't even get to leave the house.  

It's exhausting, and I'm exhausted frequently.  I just want to live in a world where no one is being too pushy and things work as they should. 

But that isn't life.  

Maybe its imperfections are why, along with the summer, heat, that my right hip has locked up, the random nerve shocks have increased, and my energy seems gone.  (At least the bizarre nightmares I remember from my last episode seem to have come in there place!)  I hope they leave soon, and I hope they take the virus with it.  

But whatever happens, things will be ok.  I haven't gone blind again yet, so I'm hoping whatever symptoms I'm going through now won't progress much more.  I can get more sleep to fight this off, since there is nowhere else I need to be.  I feel better today than I did yesterday.   

Whatever happens, with me, or with you for the rest of this year, here's what I know.  There's an internal reservoir of strength inside you that you don't realize you have until you find it.  There's a joy in something that you hadn't appreciated.  There's something along the way to make you smile.  You just gotta discover it.  You will if you look.         

Maybe it's as simple as a fresh pot of coffee that just brewed. I didn't use to appreciate that quite as much as I do now.    

     

I Could Really Use a Wish Right Now

Can we pretend that airplanes in the night sky are like shooting stars?  I could really use a wish right now.

I didn't come up with those lines, as you are probably well aware.  Those are song lyrics sung by someone on the radio by named Hayley, who probably has some mental health issues.

I can relate to her music, because I have some too, and I was looking forward to seeing her in concert next month.

But that's probably not actually going to happen, because the show is probably going to be cancelled.  Just like everything else lately.

I've seen Paramore a few times before, so I can handle missing Hayley's latest show.  But the endless routine of quarantine is starting to wear thin.   

I could really use a wish right now.  And if I had one, I'd wish life would just go back to normal.

I miss having things to look forward to.  I miss live sports on tv, and I miss seeing other people.  I even miss when people argued about stuff like tax policy, rather than stuff like whether the virus that's killed almost 100,000 people was all part of a secret government plot.  (By the way, as someone with a government security clearance, I can assure that it's way more likely that Netflix was a secret government plot to inject our brains with 8 episodes of the Tiger King.)

It's only been about two months, but in some ways I barely even remember what it was like before.  I have a vague memory that back then I used to not go out that often because I had a sprained ankle, or because I was new in town and it felt exhausting.  If only I had known what was coming, I would have lived more and gotten it out of my system while I could. 

Instead, I used to come home on a Tuesday and think of all the reasons I should  stay home and watch tv all night instead of getting off my couch.  Oh wait, no, I worked from home on Tuesdays, so I would come up with reasons why it didn't make sense to leave the house on Tuesday nights when I hadn't done so all day.

On Wednesdays, I would come home from work and remind myself that it didn't make much sense to go back out and exhaust myself, considering what a busy night Tuesday had been.

I'm kind of an introvert, but if (safely) going almost anywhere were an option this Wednesday, I would probably do it.  And I know I'm not the only one. 

I don't mean to sound to sound selfish or ungrateful.  Shutting down for a while was the only choice, and I don't want wishful thinking to be the substitute for healthy decision-making.  I am lucky to still have a job, and to have avoided the virus thus far.  I occasionally have to go into my office, which at least breaks up the routine and provides a sense of normalcy. 

I have it so much better than other people I know.

But quarantine life is getting old and I hope life works out that it (safely) ends soon. 

I don't pretend that's an insightful or original idea, just like I wasn't the first to have imagined that passing airplane was a shooting star.

And if I see one from my balcony tonight, I'm still going to wish upon it.

Because I could really use a wish right now. 

Why Is It So Exhausting to Sit on My Butt and Do Nothing?

I should be more productive than this.  Really. What else do I have to do?

When the quarantine first started, I had such big dreams for how much I would get done. 

Do 100 push-ups a day.
Finish my book.
Find an empty hoop and get my basketball game back in gear.
Read all those books on my reading list that have piled up.
Refresh my Spanish.

They all sounded nice.  And what else did I have to do?

Not much, it seems.  But that hasn't really mattered.

My plans to get stuff done haven't quite worked out just yet. (And tomorrow isn't looking great either.)  I haven't developed a new, productive routine, unless you count my daily binging on my favorite sitcoms. 

It turns out doing nothing is more exhausting than I had imagined.

Life isn't a total waste, but it isn't the panacea of productivity I had hoped for. 

I've read a couple of books in the last month, and I get some exercise every now and then.  But if the quarantine ended tomorrow, I wouldn't leave the experience feeling like I in any way made myself better through the experience. 

I haven't used this time to think of any major life insights, and I'm no closer to crossing off any particular goal.  Instead, my biggest life accomplishment is something more like signing up for Nexflix and discovering the brilliance of Schitt's Creek.

Part of me wants to be annoyed at myself about this, but I also don't have the energy for that.  Besides,  I mostly sit at home and type on my computer during business hours.  The last thing I should want to do at night is to sit at home and type on my computer. 

Maybe you can relate?

When all sports, concerts, and theaters are closed for the indefinite future, there are no trips to plan, and no dinners out, why wouldn't we be unduly excited about the next episode of some new show?  What else am we supposed to look forward to?  The Rapture? 

It's just hard to be productive, beyond life's mere essentials, when most everything already feels like a chore. 

I'm an introvert, so I rarely get bored in my own company.  But even so, when the social aspect of life falls out of balance, I never want to make up for that lack of fun by doing stuff that's more productive.

I keep seeing Facebook memes on my friend's pages pushing back against others who were judging them for learning new skills during the quarantine.  I had always wondered what kind of jerky friends these people knew who would ever think of doing that.

Then I realized I had been doing that to myself. 

Maybe none of us should.

And bravo to those who have entertained and educated children during this.  You've possibly accomplished something harder than I have during this time, although I'd argue that making it through all nine seasons of The Office in two weeks counts for something.

But I will concede that accomplishment has marginally less value than raising other life forms to be productive citizens.  So, if you've managed to keep your kids afloat while keeping it all together, be proud of yourself for that.  And if don't have kids, you can still be proud of yourself for keeping it all together.  And if you haven't kept it all together, be proud of yourself for reading this blog. 

It's probably more than I would have accomplished.

Random Thoughts: Social Distancing Edition

You are probably just reading this because you aren't allowed to leave your house and have exhausted every other entertainment option you can think of.  That's ok.

A captive audience is still an audience, and neither of us have anything better to do.  

It's the perfect time for a new batch of random thoughts.  Satisfaction guaranteed or your money back.

Why is it that I start to get restless after a day at home, but my cat hasn't left the house in like 16 years and she is doing just fine?

So is it the Corona Virus, the coronavirus, Covid-19, SARS-CoV-2, or something with the word "China" in the name?  If just naming the virus is this hard, no wonder we don't have a vaccine yet.

Instead of getting a stimulus check from the government, can I request that they send me an equivalent amount worth of toilet paper?

Lots of people are watching a new documentary about a guy with a mullet haircut and his own pet tigers.  In 5 years, he will probably be our president.

Why didn't I think to buy a gigantic, tricked-out house that I couldn't afford right before the banks were ordered not to foreclose on people?

At what point does flying actually become safer than staying home, because there are fewer people on the plane than living in your house?  Plus, you can swipe some toilet paper from the lavoratory. 

Do police officers now have to sanitize their hands before putting people in handcuffs?

If you don't have the virus, is it insensitive to play R.EM.'s song with the lyrics "It's the end of the world as we know but I feel fine"?

Why did toilet paper become the thing people decided to lose their minds stocking up on?  Why not, say, oranges?

Why are police, medics, and firefighters all referred to as first responders when one of them got to the scene third?

One thing I know: when we all emerge from this thing, there are going to be a whole lot of people who need haircuts. 

Another thing: tickets for whatever the first live sporting event is on the other side of this are going to go for like a thousand dollars.  Or maybe that amount worth of toilet paper.

I feel really bad for people who live alone and have birthdays while under quarantine.  If you know anyone to whom that applies, drop them off some toilet paper.

Here's to all those who are, or have a loved one, fighting against this thing. Stay safe, keep fighting, and don't give up hope for a day when you have something better to do than read this blog.

It Wasn't Supposed to Be This Way

Today was supposed to be my day.

My triumph. My victory.  My proclamation of overcoming MS, my social anxiety, and a long-fought intractable battle over a personal goal.

It certainly wasn't supposed to be like this.

I was going to run the Atlanta Half Marathon.  After ten races over 7 years, I was finally going to hit the 1:45 mark I've been working towards since I started running.  I was going to feel triumphant, having scored a victory over both multiple sclerosis and Father Time.  Locally, this is the biggest race of the year, and I imagined running through the streets of my new city, absorbing the support of the crowd and feeling the affirmation that I belonged here.  Moving is hard, and this was to my first heartfelt connection I was to forge with my new home.

I was looking forward to basking in a lazy afternoon satisfied in my accomplishment, reflecting on what it took to get here.

I broke my knee three years ago, and it was inexplicably slow to recover.  My orthopedist gave up on me, and my physical therapist told me that I'd never walk again without a limp. He thought my knee was mostly healed but my nerve connections just didn't work anymore, what with the MS trying to destroy them.  I refused to believe him, because I just couldn't.  And eventually, he turned out to be wrong. 

Today, I was going to not only prove that, I was going to be faster than ever.

And the thing is, I was actually going to do it.  I had run up to 11 miles and was already hitting the times I needed a month before the race.  By race day, today, I was going to be trained and ready to own the course. I was going to blow my goal away, having overcome MS and a debilitating injury to do it.

But that today didn't happen.  I got this today instead.

A month ago my ankle turned in a bad direction and I fell to the ground.  I completely tore my ligament off the bone, and I've been in a walking boot ever since.  I was able to ditch my crutches fairly quickly, but the doctor told me I would take three months to heal.

I'm going to miss a whole lot of races until then, but none bigger than today.  The race is all over the papers, and the local streets are mostly shut down.  I was supposed to be out there as part of Atlanta's annual weekend running festival, not inside on a computer.

Life while injured is hard.  I've been mostly stuck inside, unable to do much except get overly worked up about the latest political news.  It's been rainy and gloomy all winter.  February is the worst month of the calendar, with little excitement and lots of cold, and this year it even had an extra day.

I went to church this morning, because I had some free time that opened from the race I couldn't run.  In an act of defiance, I left my house without my walking boot, a day before I was scheduled to be done with it.  I drove to church and then hobbled from the parking lot to the auditorium.  If I couldn't run the race I wanted, I could at least limp toward God.

It was a good service--one that spoke of counting our blessings even in seasons of loss, and making sacrifices to help others, rather than the empty gestures that come more easily.  As we took communion near the end, I remembered that Jesus was once physically broken just like me, and modeled how to do it.  Eventually, he got back up again, and he overcame.

I will too.

I fell, but I will get back up.  My ankle, my knee, and my fiberglass body will all hold up for another shot somewhere down the line.  MS will let me will run another race, and if I got to my desired pace once, I can get there again.  It will feel ever better having overcome one more thing to do it.   I will feel settled and at home someday, somewhere.

My day will come. I just have to believe that it will.

I wish it were today.  Instead, I settled for a slow but successful walk back my car after church had ended, one day ahead of my recovery schedule.  I smiled a little smile at the small victory.  It was all that was in store for me today, but a victory nonetheless.

And I noticed the sun had finally come out.

Life With MS

"I don't have kids," my co-worker said.  "My boyfriend told me I should just go on disability.  I probably could.  I just don't think I'm ready to do it."  

"I totally get it," I said.  "You gotta do something to feel like you're making a difference.  That doesn't mean you can't do that while on disability, but a job can be a big part of that."

I don't have the exact symptoms my co-worker, who also has MS, was describing, but I admired her resolve.

Even on days when I'd rather not get out of bed, part of me fears life sitting around watching daytime tv and eating cereal would get old.  Especially since I can't have milk.

She went on to tell me about not being able to run, or even feel her legs for days at a time.  I suddenly felt guilty that my numbness was limited to my left foot. We soon became like two old war veterans complaining about the weird things multiple sclerosis was doing to us. It was oddly fascinating to hear what she was going through, and not just because she had it worse than me.

Although that probably helped.

It started when I had to explain to my co-workers that I couldn't have birthday cake, or anything else with high sugar, because it would make my legs twitch, a rare feature I lucked out with.  Then she asked what medication I was taking, and we shared the universal MS-bonding ritual of talking about how much we hate our respective medication prescriptions.

There are about 15 different MS drugs approved to treat MS, and from what I can tell everyone hates whichever one they happen to take.  People with MS tend to seek out some secret less dreadful medication like the Spanish explorers sought out the Lost City of Gold, with about the same success (but minus all the homicides).

One of the newer ones is effective, but it takes half a day, and a trip to the hospital to administer.  And it leads to brain tumors in a disturbing number of folks.  A slightly older one causes stomach issues, and may cause cancer, and still others cause vital organs to shut down.  Older ones have fewer side effects, but--forgive me for nitpicking--don't actually work.

I consider myself lucky in that my medication really hurts to administer but otherwise seems to work, and has not yet killed me. On balance, that's a win.

My coworker has had a rougher run.  She had the disease for years and no one could figure out her issue.  Even after a diagnosis, she hasn't found an effective treatment routine.  One of the worst things about having multiple sclerosis is that no one else really knows what it is.

I don't blame them. I still don't know either.

When my doctor told me I might have it, one of the first things I did was look up the difference between MS, cerebral palsy, and cystic fibrosis, because I had them all conflated into one disease in my mind--one where the patient can't walk without assistance and looks really thin.

But now that I'm three years in, and mostly just look thin, people tend to assume that I'm not really affected.

"Do you have any symptoms?" people ask me sometimes.  I get annoyed with that question, when it is phrased as though I can answer it in a sentence or two.  You might as well ask me if there are any ways in which I feel different from a zebra.

I spent a couple hours yesterday wondering if I couldn't see clearly out of my left eye because I was having another MS attack that would leave me half blind for the foreseeable future again, or if I just needed to change my contact lens.  

It turned out to be the latter this time, thankfully.   

That kind of thing used to freak me out, but now I've gotten used to it. I don't know what my disease is going to look like from day to day. 

One day I wake up, have breakfast and then need to go back to bed.  The next I might run nine miles at 8-minute pace. The next day I might have stabbing nerve pain throughout the day and be unable to concentrate. The day after, I might feel totally fine, and feel so thankful that life still seems so normal.  Then at night, when I can't sleep, I'll get aggravated about something and can't calm myself down. When I finally get some rest, maybe I'll crank out a brief that gets rave reviews and think that this whole yo-yo routine is all in my head.  

And literally, I suppose it is. I have 16 scar ("sclerosis" in Latin) tissues in my brain to prove it. 

On the bright side, life is never boring.  On the downside, it's so hard to explain what MS feels like unless you have your own handy blog.  

I posted an article to Facebook this week about what MS feels like, and I immediately worried that it would look like I was whining.  I'm thankful for the life I get to have.  Sometimes I just want some explain MS once, and not have you ask me why I'm not eating chocolate the next time I see you, why I can't eat outside on a hot day, walk a straight line down the hallway, or might be slow to return a message.

Or maybe why this wasn't my best blog post.  In case you're wondering, I blame my medication.