Be well, be safe, and always maintain a healthy amount of crazy….
Be well, be safe, and always maintain a healthy amount of crazy….
“How are you?” my friend asked me the other morning – an innocuous enough question, if the recipient is not suffering from chronic illness.
Apart from the odd text here and there, I hadn’t talked to this friend for months, so I answered a pat:
I had really called her because I knew she was scheduled for surgery and I wanted to let her know I was thinking of her. I hadn’t intended for this call to be about me.
“Well, that’s great. So are you going back to work, or are just going to take it easy for a bit?”
Her question threw me. Go back to work? Take it easy? WTF?
“You don’t need toxic people like that in your life,” my home care worker tutted. “She has no idea of what you are going through.”
I think she might have been more incensed than me.
When are you going back to work? is a question that I have to answer every three months for my long-term disability provider. It’s a problem that plagues me constantly.
I would love to go back to work – have worked since I was fourteen-years-old and always prided myself on my independence. Losing my ability to be gainfully employed has been one of the great losses of ME/CFS.
“Well, I have a way to go before I can think about work,” I responded after a long pause, and wrapped up the conversation. This is the same friend that once told me I wasn’t doing enough to get better – that laying in bed all day was giving in too easy.
I laid in bed because I couldn’t physically get up; it’s the unholy truth about this disease.
I am better in that I spend less time in bed now. I still have to lie down several times a day, and am generally in bed for the night around 6:00 pm, but the improvement is noticeable. It hardly constitutes a full recovery.
“There are many things I have to accomplish before I can think about working,” I told my disability representative in our last conversation. “I need to be able to manage the basics of living, such as laundry, shopping or driving. And I need to be able to rely on my brain.”
“I see,” he said, obviously making notes in the background.
I doubt it, I thought. No one really understands the extent to which chronic illness invades and permeates the life of the person affected. No one except those who have been afflicted.
Some mornings I just don’t want to wake up, I’m having such a good dream. It happened this morning: there I was wrapped in the arms of an unrequited love, discovering what we had missed all these years.
G.W., the subject of these dreams, was a high school classmate. He was tall, blond with blue eyes, athletic, and a musician. He had a wicked sense of humour, and from the moment we met we were instant friends. It was the promise of seeing him each day that kept me going in what were very tough times. And I know he really liked me too.
Until the fateful day he asked me out and I said ‘no’, telling him I just wanted to be friends.
It was lie, but at the time I felt it was the only choice I had: I was hiding too much: bullying at a former school, rape, and my dad’s secret life. I was certain that a guy like G.W. would not like me if he knew. It was better to keep him at arm’s length.
G.W. tried again over the next couple of years, but I never waivered. Not outwardly. Inside I died a little each time, knowing I would never be good enough for him.
Except in my dreams. It’s been more than forty years and I still dream of him, and every time he is the same old friend, loving me unconditionally. And I don’t want to wake up.
I know people who have chased down former crushes and picked up where they left off. Some successful, some not.
I prefer to think it is the feeling that G.W. gave me that I crave: a sense of being accepted, appreciated, and acknowledged. With G.W. I feel safe. I begin to believe in my own worth.
Maybe one day, I’ll gain the self-respect I’m looking for and won’t need him anymore. In the meantime, I look forward to more dreams.
At one time in my life, Saturday nights were reserved for Trading Spaces and a glass of white wine.
I owned a bookstore at the time, and looked forward to unwinding at the end of a long work week. Two out of four Saturdays per month, I would be alone, while the children visited their father.
Burned by a string of bad relationships, I had sworn off men, and thought my life was quite satisfying, until my then teenagers filed in one Saturday night and confronted my routine:
“Mom! You can’t just lie on the couch every Saturday night and watch renovation shows! It’s depressing!”
“But I like this show….”
“Seriously, Mom – if you don’t make a change, we’re not coming home anymore!”
Had my life really digressed so pathetically? My children’s reaction made me take a closer look. As a retailer, I worked long hours, which consumed much of my life. When I wasn’t watching TV, I tended to have my nose in a book – mostly self-help oriented. Perhaps my life did lack colour, but change is so difficult – where was I to start?
I decided that for real change to occur, I needed to take a risk. For eight years I had been carrying around a business card in my wallet with the name and number of an improv company who did Murder Mysteries. Not even certain if they were still in business, I dialed the number and found out that they were holding auditions the following Wednesday. Scared as I was, I decided to go through with it. The audition was two hours long and within a week I found out I was in.
In the meantime, I had always wanted to take dance lessons, and I learned from a friend that a local bar was offering free salsa lessons once a week, so I put that in my calendar.
Being in a relationship was not an option for me at the time – it was a commitment I had made to myself – however; I did miss some of the things that came with being a couple, so I decided to start up a friendship club with the single men and women that I knew were not into dating at the time. Amazingly, all it took was a few phone calls and my weekends were filled up with potlucks, movie nights, and bowling.
My kids had been right: my life had become depressing; I just couldn’t see it. Thanks to them, and the willingness on my part to take risks, life turned around.
Sometimes, when life starts to stagnate, we need to make changes. What things have you done to break out of complacency?
“A rolling stone,” my father used to tell me, “gathers no moss.”
Is that a good thing, or a bad thing, I often wondered. It certainly defined his life, and seems to have become a fair portrait of my own.
“Never look back!” was another favoured expression. This is harder to do; especially when the past comes calling.
Over the last couple of weeks, I have encountered several people from my past. Ashamed to say, I find this unsettling for a number or reasons, the least of which is the fact that my life is currently at a total standstill: surely, they expected, as I did, that I would amount to more.
I also worry about whether or not I am the same person they once knew – and if my former self had any redeeming qualities, or am I going to have defend previous (continuing) idiosyncrasies; and justify abandonment (perceived or otherwise)?
“It’s not like you weren’t easy to find, had they wanted to,” my husband points out.
It’s true. I am on Facebook, Twitter, and have a blog! So, why now? What possible value can revisiting the past have? Okay, admittedly, I do it every day – in my own mind – but that’s different – it is introspective and highly subjective – and it’s okay if I tear me down.
Do I want to subject myself to objective input? Am I strong enough for that? Don’t people fall out of our lives for a reason? Could there be a purpose for re-uniting? Is it even possible?
If I sound paranoid or a little defensive, it is only a reflection of insecurity. I learned a lot about people when I fell ill. The same happened when I got divorced: relationships disappeared. I have spent a lot of time, in isolation, pondering the meaning of all that.
I do have friendships that have endured through it all, and I treasure those deeply. Maybe this sudden insurgence of past connections isn’t as threatening as my vulnerability suggests. There is a certain synchronicity to it, after all. Could I have left something behind worth reclaiming? Are these renewed acquaintances helping me rediscover what was lost?
I guess only time will tell.