On a Very Personal Note

Every once in a while there are voices who criticize social media and online presence for glamorizing life. Some people react negatively to those who showcase how happy they are. Those who dare seem lead a "perfect" life. All the smiles, the happy moments and positivity seem to rub some people the wrong way. An outcry, demanding that these culprits should also share the “truth”, meaning the not-so-positive-sides of their life.

Personally, I try to cultivate the brighter sides of life. I count my blessings. Not because there aren’t enough losses to add up as well. For me, it’s a matter of focus. And if I’m to be completely honest: a matter of survival. Not because I’m concerned about the online community’s opinion about me. Embracing life at its fullest has become my beacon of light. It’s my Northern Star. What I navigate toward when all else disappears in the dark.

I am not dishonest if I share my happy moments with the world at large. I simply don’t feel comfortable about sharing the low points on a larger scale. Also, I take the challenges life presents to heart, and then regroup. I try to figure out how I can move on from there. If I can choose, I’ll take the mountain tops in sunshine any day, rather than cold rain pouring down in the dark, while I crawl in a gutter.

It’s not that I am ashamed of the dark corners. Life forces us all into those spaces at times. Some are lucky to just visit in passing; others spend the majority of their lives in lonely shadows. And I truly believe we deal with life as best we can. Most of us do what we need to, simply to survive.

Should we be allowed to scream out when life seems unfair? Or whisper a cry for help, when we can’t reach for anything else? I think so. Just as I feel it is absolutely a legitimate choice whether we do this in public – via social media and online presence – or if we keep it within our closest circles.

When you feel “shitty” and it annoys you that everyone is parading their “perfect” lives on Instagram or Facebook, maybe it might help if you stop viewing their bliss as a critique of your experiences or feelings? Be genuine. Be honest. Be whatever you want. And maybe also realize that the “version” the annoying person is sharing is simply that: one version of a broader picture. It might be that the person has a good day and needs to soak in every delicious moment. It might be a break from a much harsher reality. Don’t mistake that break to be a lie or not genuine. It is a slice of life. For a fleeting moment it is true and may even be profound. A rare breath that keeps a person going on the darkest of paths you might be spared for wandering upon.

“But you look great,” is a compliment -or a way of consoling me- that I hear nowadays that pieces of my life’s puzzle finally have fallen in place and I’ve shared these with my inner circle. I appreciate hearing this, because I know they care. They see me at my better moments. They never see me when I don’t make it beyond my sofa for weeks on end. And no one but my sons ever sees the bedridden version of me. Or pay the price they pay for my illness, as they have paid since they were very, very young.

I’ve been pondering how to share this version of who I am. Not even my closest friends realize how edited the version they know to be me actually is. At least, not those I’ve met after 2003. My close family and friends who knew the “before 2003 me”, have either seen up close the change or can’t understand what happened to the Linda May they once knew. In the process, many people have walked away. I don’t blame them. I haven't had the strength to explain what became of me. There are some very dire losses I have never regained, which still break my heart. When I have an “awake” moment, I don’t even know where to begin to reconnect.

Those who I’ve met since 2003 have either accepted me the way I am: an on-and-off kind of person. Very present when I am present. Happy, energetic, genuinely interested. And then I go quiet. Disappear. Sometimes for days. Sometimes for weeks, months or longer. Right before I evaporate, I might act irrational. And then at the bat of eye, I am back again. Smiling. Hungry for life. And some friends are happy to see me again. Others have walked away in my absent time. Provoked. Hurt. Or perhaps even indifferent. I rarely get to pick up the pieces of those relationships.

So what happened in 2003? And why am I sharing this now?

Just before the summer of 2003 I contracted a virus. I never recovered. By the early autumn that year, I was bedridden 18 to 20 hours a day. I don’t want to go in details, but the sum of it is that my life as I knew it, ceased. I went from living vibrantly (with my highs and lows like everyone else), to barely existing. The doctors had no clue to what was wrong with me. My blood work was fine. “Burn out” was one theory. “Deeply depressed” was another. I was too exhausted to protest. None of these labels were the me I knew.

About a year after Year Zero, I little by little returned to land of the living. At first, minutes at a time. Then I had a few good hours. And then a few whole days that felt pretty good. I embraced life at its fullest every time I had a good day. Always overdoing it – chaining me to bed again for days and weeks at a time.

Days came and went, turning into months. Then years. There were many silent sacrifices, just to put food on the table and keep a roof over my tiny family’s head. Doctors and Norway’s social system gave up on me along the way. My closest family, however, stepped up to the plate. Never understanding what was wrong with me but silently keeping my back. No words can express how grateful I am for this.

Ever so slowly, I regained about 50% of who I was before my Year Zero. Which felt amazing. I still overdid it time and time again, each time paying a huge price. Losing bits of my life again. But at least I had those high moments.

And during these moments, I’ve been active on social media. On my blog. Living, where and when I could.

Occasionally, I’ve even been social. Been out there. Traveled. Looked around to see who was still left standing around me. Some friends haven’t given up on me. Thankfully.

In December 2014, life intervened. A very natural, yet devastating experience: my mother fell seriously ill. My sisters and I jumped on planes and crossed half the planet, not knowing what would meet us on the other side. Weeks later, we could breathe again, in gratitude that we dodged a bullet for now. Life returned back to a new kind of normal for our entire family.

My body, however, never did.

Not for lack of me trying, mind you. I counted my blessings during endless nights, months on end, when I couldn’t find rest. No remedy went untried. No helpful piece of good advice not taken to heart. I was on a slipping slope and could not hang on any longer. So I fell back down again into the depths I had hoped were an unexplained, yet passing freak part of my story, not my reality.

This past week I finally was told what is wrong with me. I was wrongly diagnosed 13 years ago. I have a chronic condition called ME/CFS that the World Health Organization characterizes as debilitating as MS and HIV. There are promising, experimental treatments which might help in future. For now, there is only acceptance and understanding of the nuts and bolts of how I can slowly move towards a more functioning life again. In finally understanding, I find hope. Even if I never will be who I once was.

I miss me. I miss my life. I miss who I should be now. And yet: I am still here. I am a version of me. And maybe I can finally find a way to embrace this version of me.

Not to say, that I am not mad as hell. Because I am. Seriously, I am. At being let down by doctors and a system I have defended to my teeth, but have seen how has let my family down during my mother’s illness -and mine. I also grieve for my losses. If only I knew then what I know now, if only I had received the help I needed and am entitled to, I might be somewhere else now. I’ve lost so much. Economically. Career wise. But first and foremost: people who I loved. And still love.

Deep breath. I dry my tears.

I still insist on counting my blessings, because my losses are not the entire story. I do what I can to survive. And part of that is focusing on my moments of appreciation. The happy moments I celebrate. They are my strength and my light, even in the darkest of the valleys I wander alone. I ask no one for forgiveness for holding them in front of me.

Those who still are a part of my life have chosen to stay, even when they haven’t understood what is wrong with me. I will probably never be able to express my deep felt appreciation for their patience and love. I hope some of you read this. You have kept me going and your friendship and love means more than you probably ever will comprehend. I hope to express it directly in some way, so you will feel how much you mean to mean.

This is the most personal blog I have ever written. As a writer, I should have a clever way of ending this, but I don’t. In writing, I have had a very good day. A day I now know I have overstayed my “welcome” in the land of the living. I’ve met several great people. Bubbled over with visions of future endeavors. Shared meals. Discovered new secrets I’ve searched for, for stories in the making. Had a few glasses of wine. Worked more than I should. Loved every second of it.

I might pay tomorrow for today. At least then, I’ll know why. And when I share a moment from one of these “todays”, please don’t accuse me of being shallow and unreal – of putting on display a fake version of happiness. I live. I am. And so do and are you. Live and let live. I choose to embrace the moments I can and disappear when I cannot face anyone who cannot see me when I am imprisoned by the pain of my body.

This is my life. Please live yours to the fullest of your abilities. I wish you all the life you can handle.

(Thank you, Monique Zahavi, for the painting you gave me as a gift, after you realized how deeply I saw myself in it. It will always hang on my wall. The illustration on this blog is an excerpt of that painting.)

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