You know that saying “The light at the end of the tunnel is an oncoming train”? If that blinding thing is an oncoming train perhaps, the best thing to do is to quit staring at it. In fact, let’s leave off staring down the tunnel entirely.
Recently, my psychiatrist said to me, “Julianna, you are time traveling. You cannot live in the future, you are looking through binoculars.” That was her way of telling me to stop staring into the light. No, not “that light“. The tunnel I am talking about is the one that leads to the future.
The funny thing is that I had just gotten used to not looking in the rearview mirror. Who thought it would be so hard living in the NOW? Apparently it is a big problem for me because mental health professionals are telling me at every turn, with varying metaphors, that I need to get into the here and now.
Dr. Suaya had pulled a fast one on me. She is the psychiatrist, not the therapist. Still, she is remarkably good at poking into the same dark and dusty places of my head around which Hollye, my therapist pokes. So why was I surprised? And Hollye, she betrayed me. She said, “Oh I like her.” She is supposed to be on my side!
“So, how have you been feeling about your illness?” Poke poke. OUCH!
A pause of the very pregnant variety.
The icky, sticky business of my illness as a whole? That was a new one. My authentic self? She is tricky, this one.
While I am the one that is busy telling everyone to speak their truth, I have taken to just saying, “I am well, thank you. How are you?” Speaking my truth has gotten me zero, nada, bupkis. My reality is a different story than the one I present to the people in my real life. Why? Because as many of us have learned, people do not want reality.
I have had to make a choice between lies and loneliness. “Needing” to know what my life was going to look like down the line is where the binoculars come in. This problem is not unlike my issue with the time travel. If I could get out to the future, see the lay of the land, I thought I could prepare now.
When you have a degenerative disorder that impacts your connective tissue like Ehler’s-Danlos Syndrome you have certain symptoms, and the disease causes other degenerative side-effects like osteoarthritis, and an expanding case of degenerative disc disease, your day-to-day is comprised of pain. Pain is, however, transient, and to an extent, treatable. On the whole, the pain never really goes away, not for forever, it is just about levels and degrees. There are periods of time, for me that there is no overwhelming pain. I can go days, or even weeks with no “freak me out” pain. When there is no stress in my life (like losses, moving, surgery), I can feel pretty good. But, those of us with chronic pain live with pain, plain and simple. When we are not in pain, it is a respite. A gap. It’s what we all seek, widening that gap of time where there is no pain. How long can we go feeling “normal”(ish)? How long can we forget about the pain and do the things we want to do?
And I haven’t even addressed fatigue. Oy vey.
With pain comes fatigue. Pain is exhausting. Illnesses that cause pain also cause fatigue. Simple. Period.
Until very recently, my pain gap was much wider. Time, it seems is getting a bit shorter between hurt and not hurt.
More frequent returns of that ache. That dull thing, those whining joints. My fingers are dislocating when I open jars. More often am I waking up with a shoulder subluxated, or worse. Still, for the most part, it is just there, like a cloud. Giving me time between flares when I am in the land of the monsters. I live for that gap.
“I had an epidural last week. It didn’t work.”
“How do you know it didn’t work?”
“Because the last time I had this particular epidural I felt better the next day*, this time I do not feel better after a week. I know that EDS is degenerative, so it is clear that things are getting worse.”
“Julianna, you are time traveling. You are looking too far into the future, living life with binoculars. So many things are happening, you have no idea what new medicines may help you, new therapies that may make you feel better!”
I mumbled something under my breath, barely audible, about rare diseases, orphan drugs, the lack of research. I started to cry. In what was there to have hope? I was squinting into that light. Nearly blind.
“There will be a time when I have to consider who will take care of me. I cannot open jars or even some of my cosmetics. It is humiliating to take my shampoos and lotions into someone else’s bathroom in the morning, etc.”
We went back and forth about what I needed when I would need it. Who I had in my life, who signed up for what and what happened the last time I trusted anyone. A tearful and argumentative me versus a calm and never wavering doctor who, of course, made perfectly annoying sense.
“You need to live one day at a time. Today is what you know you have. You are wasting it by worrying about five years from now, or even next year. You are trying to predict the outcome of your health by looking through binoculars, or time traveling to see into a future that is impossible to predict. You can’t live there.”
I am not looking down the tunnel to my death, but a time when I can no longer care for myself. The time when no one will care for me. When it will be strangers caring for me. The lenses of my binoculars are powerful enough to look to my greatest fear, the day I cannot walk. I am flickering images on the tunnel wall in 8mm bullshit that I am choosing to accept as truth.
The truth is far more simple than the supposition. At the end of the tunnel, there is no light and no monster. All there is is the mystery. I don’t know how long this tunnel is just like I don’t know how long each gap between pain will be. I can’t know. I have no magic powers. Those mystical binoculars do not exist. The tunnel is a mystery. It is the mystery of “what will become of me when this reaches its inevitable stage of…?” The simplicity is that it is time to stop thinking of “this” as illness and to start thinking of “this” as life.
The facts are: I am not dying. I look fantastic. (Because we know THAT is important!) I just had a life altering surgery that has improved so many things I don’t have time to list. At my worst I am tired, or my pain gap changes.
Shitty right? No, not so much. Many others have it much worse.
Life is not a tunnel. Life is open and full of many paths to travel on, and many ways to go to create your unique path. If you think too much about what is at the end of the road, you will miss what is happening right now.
It’s time to have hope. Hope in today. Hope in hope. Get out of the tunnel, throw out those binoculars, have a seat in right now. Go as far as you can and as wide as you can today. Do it today, while you can. None of us knows what is going to happen tomorrow, no matter how sick or healthy we are. No one is here to judge the distance, so don’t judge yourself either. And if someone does judge how far you can go in a day or an hour, those are not the people you need in your life.
Do as I say, and not as I do: live your truth.
And, unless you have a TARDIS, leave off the time travel. That timey wimey stuff can be very dangerous.
*Since I saw Dr. Suaya I visited my pain doctor and learned that my usual one day bounce back from an epidural was uncommon. An eight-day recovery is more common, and that is what I eventually experienced from my recent epidural. We are also getting a new MRI explore the spread of my arthritis. I feel better and worse at the same time. Blessings and curses. Call it even.
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