The 'Stuckness' of Living as a Sick Person

Thursday, 4:30 p.m.

I was talking to a friend, describing my odd lack of enthusiasm for rejoining the human race,  with regards to school and work.  She listened quietly then said, “So you’re stuck.” 

I sat looking at her for a minute, then said, “Yeah, I’m stuck.” It made total sense and yet it took a completely separate person to declare the obvious. I am stuck. It would be silly not to acknowledge that all of us get stuck from time to time, caught up in the difficulties and chaos of these lives we live. And I’ve been living mine with little to no sleep for a very long time.  

I’ve never been much of a sleeper, at least not in my adult life. If I think hard enough, I have vague memories of long sleeps. Those glorious, unwaking hours of childhood and teenaged years. When did that change for me? Not a clue. I can honestly say that in the last five years, if I averaged two or three hours per night, I considered it a good night’s rest. But it’s not! 

All of this contributes big time to the stuckness. Stress does too. Since my surgery, I’ve contended with complications and new medical issues that I didn’t anticipate. And thus, here I am, physically moving forward while emotionally putting blockades in front of the door marked “my future.” 

In that same conversation, I mentioned returning to school tonight. So by the time this is posted, I’ll have been to my first class of the fall semester. When I finally registered, I chose dates that seemed far off. And now it’s here! The first night of the first class. That’s the funny thing about the future, it’s always coming at us.  

We’re always caught up between moving forward and the stuckness of living as “sick” people. Stuck waiting for doctor’s appointments; for our medications to work as they’re supposed to; for comfort when none can be had; for our pain to stop, or at least ebb. We are perpetually in the stuckness. All while being propelled toward tomorrow and the joys of the unknown. I think it’s the same for the generally healthy, too. That’s life.  

I found myself stalling this afternoon. Checking emails for the hundredth time. Looking in on my reflex sympathetic dystrophy syndrome families, making sure everyone is all right. All of this as I nervously watched the clock. My class starts at 6:30. What time did I have to leave to get there on time? Carefully plotting out the steps to the train, which direction I would take from my stop to the school. Yes, that’s where my mind was. It’s a subway trip I’ve done countless times over the course of my life.  But I wasn’t as acutely aware of the stuckness then. Now I am. Now I’m semi-frozen to the place that I stand. But I can’t be, not really. 

I mentioned to that same friend that during my 13 years of having RSD, and the five before that having lupus, I’d come to expect nothing. Complications happened. Surgery after procedure after surgery. It was a receiving line of bad news, more often than not. So I learned to just get up every day, very often with help from my husband. He’d have to come around to my side of the bed and practically lift me to sitting. It was awful! But I’d get up, one way or another, focus on getting my daughter to school, then rest. Later on, I’d pick her up. We’d come home and have a snack, work on homework. All that time, I had myself running on the schedule of “one more thing and then I can rest. One more thing and then I can rest.” During those years, I genuinely thought I was hiding my sickness from my daughter. There was no way to miss it, though! She was caught up in my illogical regimen. My stuckness became her stuckness.  

Although I’ve always maintained a positive attitude, to the point that most people had no idea I had any medical issues at all, internally I came to expect the worst when it came to my health. I made no plans beyond caring for my daughter each day, basically had no expectations, or so I thought. My friend pointed out, by expecting nothing good, I was truly always bracing for the bad. The years went on, my baby girl was growing up! I was holding steady at my medication doses, having procedures when needed, usually every four to six weeks. Those were painful years. I didn’t think I’d have a future any different from my present at that time. I was stuck, and very wrong. 

I talk every day to members of my two RSD families about what the day-to-day of this disease is like. It’s complete crap, to be honest. I’ve come to know some folks that were just diagnosed with it and I genuinely feel for them. There’s no rule book that RSD follows. It’s all up in the air. What meds will be prescribed? Will they work? Will I need procedures or scary-sounding devices? Will this pain stop? Will RSD spread to my healthy limbs?

If my today self met my 13 years ago self, I could honestly answer those questions:  You’ll work up to taking at least 12 pills a day at some point and briefly (six years) require an internal morphine pump. Some will work, some won’t. You’ll end up finding out you’re allergic to a bunch too. Yes, you’ll have somewhere between 80 to 90 small procedures to major surgeries. No, the pain won’t stop. That’s a tough one to accept. Some days will be better than others. Yes, it will spread. It’ll be in your left foot for a while. Then it will spread to your left arm. Then the right foot, leg and arm. In there somewhere, it’ll affect your face. Oh, and your back. Somewhere in that timeline, you’ll need spinal surgery to correct your lifelong back pain. That’s before they’ll let you get that pump. Also, along the way, you’ll develop spasms in your hands and feet.  There are other things, but that seems like an awful lot to digest. I know that my younger self would have launched straight into denial, hearing all of that. But what good would it do? Life happens whether we’re ready or not. Whether we are stuck or not.  

Fast forward to now. OK. Here I am, mired in the stuckness up to my eyes, and ultimately miserable. I allowed myself to hope, it didn’t work out exactly the way I planned. But, as my very wise friend pointed out to me, I’ve been a chameleon all these years, recreating myself based on my health at the time. I’m a survivor, someone who lives with the overall ethic that the “show must go on!” She’s right.

I had two options: I could un-enroll from the class and cut my losses, or I could get on that train, stuckness or not, and go to that class. I could worry about my physical ability to sew, or I could try to relearn a skill I’ve had all my life, slowly and with breaks.  To be continued…

Friday, 12:45 p.m. (I stopped on Thursday because I wanted to see how the class went before completing this post)

I left for the city. Read a magazine on the way. After arriving at my stop, I decided to venture up a different street since the rush hour crowds were thick with people trying to get home. After stopping in the main office to update my semester sticker (so far, so good), I went to the bookstore to buy the text that had just been added to the course description (no such luck!). The kind saleswoman said she didn’t even know about the out-of-print books being needed. (OK, that one’s out of my control). The classroom is in a new building for me. Making my way up to it, I hear voices. After rounding the corner, I see a familiar face. One of the women from my last summer class is in this one, too! That’s a lucky break! 

My professor is like that cool older friend we had as kids who knows a lot about a lot. She’s an encyclopedia of costume/fashion/film, and probably a hundred other things too. Laid back and funny as well. This will be OK.  

As I make my way back toward the subway, through still bustling streets, I find myself smiling. It’s involuntary. Stuckness or not, I made a plan that involves becoming a wardrobe technician. And, stuckness or not, I plan to follow through on it. 

How will you break through your stuckness? Make it good, fun, light. Make it count. Finish physical therapy even if it hurts; take your meds on time; try to break bad sleeping habits (that one’s for me). On the light side, watch a movie that helps distract you from the pain. Share a laugh with someone who brings you joy. Read a book or listen to your favorite music. Every time we do those things, the stuckness gets weaker. 

And after all, the show must go on.

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