2016, updates and all

As I sit here, staring at a blank page, I realize I haven’t been around as often as I would like to and also that there were a number of issues I talked about here that I didn’t update. So here’s a summary: Continue reading

Advertisements

Then the fog came

As I’m nearing the end of my holidays, I can’t help but to think about how they went compared to my expectations.

I drove here with a heavy heart. Filled with loneliness, sorrow, completely lost. Feeling invisible to the world, immaterial. I couldn’t think because there was so much background noise back home. So much to deal with, to go through. My head was foggy, groggy, couldn’t focus. I hoped to be able to think a little more clearly. But I’m not sure I accomplished that goal. Continue reading

Still such a long way

So yesterday I went to my first yoga class, which didn’t go that bad considering I’m so out of shape. The last thing we did were some relaxation exercises, and at some point we were asked to visualize in detail something we wished happened and became a reality in our lives.

Well, I didn’t exactly visualize anything as in to form an elaborate mental image of something. On hearing that, my mind just simply flashed me an image.

To which I instantly broke out sobbing.

So long relaxation, so long breathing technique, so long concentration, so long dignity.

There’s still so much work to do before I’m emotionally ok. I’ll just have to go on trying.

Late to the party

For me, 2015 is just getting started. I finally wrapped up college (it’s out of my hands now) and my year as administrator of the building I live in is over (good luck to the neighbor appointed for 2015). While I’m still waiting to change medication (I had a relapse in September, will only be starting Tysabri in March, thank you system for the wait, the suspense is killing me) I don’t think it makes sense to keep my life on hold. Continue reading

Reconnection

I am one very skeptical young lady, and maybe that’s why I try everything I can – I hope I will find something I can finally stop being skeptical about. On the other hand, when people ask me “Have you tried…” I can say yes and not let them bother me anymore. I find most of the things I try can only produce momentary relief, and they mostly relieve symptoms, while letting causes pretty much untouched.

That doesn’t mean that I cease to practice them or use them – most of the days I’ll just be glad if I can successfully manage my symptoms, so it’s great. And it doesn’t mean that I will stop trying new things. So that’s what I did last month.

The first time I heard about reconnective healing my therapist had just gone through some sessions. She was exhilarated with the results. She said she’d felt one of her vertebrae move during one of the sessions. She said that afterward some things in her life started flowing like they were supposed to. Continue reading

Work vs Chronic illness

There’s something wrong with this title. There shouldn’t be a “vs” there. It shouldn’t be a war. But most of the times it is.

Unlike many people I know who suffer from chronic illnesses, I still work full time. And I don’t complain about that. I wish I will be able to work full time for many many years. I wish to have a life that feels as normal as possible. Then why do I feel like quitting so often? Continue reading

Happy birthday, Joan Didion – and me

Joan Didion is one of the most beloved American writers, and she also happens to have MS. Recently I found out her birthday is on the day I was diagnosed three years ago. So I guess today it’s happy birthday to her – and to me. In a way, it’s like a different person was born on the day I heard the words “multiple sclerosis”. It’s a cliché, but it’s true: life was never again the same. Even though I continued to go to work everyday and tried as hard as I could to lead a normal life, changes were gradually happening inside me. I became more relaxed about some things, and yet even more worried and anxious about others. I began to listen to myself more, especially my needs, and not caring so much about what other people think. I try to take better care of myself. Weird as it may sound, my self-esteem actually got better in many ways. I’ve been gathering my strengths and working on strategies in order not to let anyone treat me disrespectfully anymore. It’s like I’m proud of everything I’ve accomplished even with limitations most people don’t dream of, so there’s no way they’re going to bring me down. I go after the things I need more easily instead of being shy and insecure about them and doubting myself. I’m working on not depleting all my energies when I go after something. And of course this all sounds very inspiring and pretty, but let’s not kid ourselves – it didn’t happen overnight and it isn’t like this every day. It’s a work in progress, a process. There are setbacks. Things I need to work on more. Things that I don’t get right on a first try. Or a second. But as much as I hate having MS and as much as it scares me, it was a much needed wake up call and a chance to make some changes along my self-development path.

Joan Didion on being diagnosed: “I had … a sharp apprehension of what it was like to open the door to the stranger and find that the stranger did indeed have the knife.” It’s so true and it brilliantly sums up what I felt three years ago. But let’s not forget that we all with no exception possess self-defense tools and techniques to face up to that stranger with the knife. We need to find them, develop them and use them. We will be fine.

Taking risks

I have a lot of drafts written here but I never finished them because lately I’ve been busy, tired and worried about many things. One of the drafts was about my daydreaming and how disappointed, sad and – yes – tired I feel when reality doesn’t comply with the preferable versions of my life I have in my head. Both my therapists say that it’s ok, and even healthy, that my mind can take a few breaks every once in a while, but me – I just know that every disappointment is like I’ve been hit by a bomb and I’d rather avoid them.

One of those things I was daydreaming about was a new job. I applied to a couple of them and I was pretty confident I would at least be called for an interview. In my mind I made the whole film: me driving every day to a new location, meeting new people, working on exciting projects. But they never even called for an interview and there I was, feeling there is nowhere to run.

And then my boss called me at work and asked if I would like to run my department. The department I work for is run by another department and there never has been a head or coordinator. I’d be the first one. For years I’ve been asking the gods for a more dynamic and communicative job, one in which I can get up more and talk to more people. My days are pretty much spent just reading and writing, and that’s put a lot of strain on my eyes, which as we know are not exactly in good shape. This would be the chance.

However, I’m also pretty aware of those things I’m not so good at, and one of them is dealing with difficult people. My colleagues in the department have worked for the company for many decades and they won’t take lightly the fact that a 32-year-old kid, the youngest there, is going to tell them what they are going to do and when. And sometimes I lose my temper pretty fast, especially when I’m really really really tired.

I gave it some thought but ultimately I realized that the benefits taken from developing new skills and having them on my resume greatly surpass the risks of me failing. Just like maybe I need to take risks regarding my medication for MS, despite not encouraging news of patients dying, maybe I need to start taking more risks in other of areas of my life. Shed the insecurities MS has given me and remind myself that things can go pretty rough very quickly so I might just grab what’s there for me. My healthy and oh-so-safe lifestyle hasn’t really shielded me from disease progression anyway – and it gets boring too. So at least for a while my life will be filled with new experiences.

The Open Focus Brain

wpid-the_open_focus_brain.jpegThe first time I heard about Open Focus I was told it was a little different from meditation. As I started reading though I realized it isn’t all that different, as I already tried some of the concepts during some meditation exercises.

Open Focus is basically a series of self-management exercises designed to train the way we pay attention. According to the author, much of our problems arise or are made worse by our style of attention, which is permanently in narrow-objective focus. Narrow-objective focus is the brain’s emergency mode and produces a lot of tension. Opening our focus and learning how to flexibly switch from one style of attention to the other according to the context will help dissolve physical and emotional pain, anxiety, depression as well as improve athletic and artistic performances.

Even though the premises (the author throws in research on brain waves and bio and neurofeedback) and exercises are interesting and compelling, I found the book itself repetitive. It could easily be cut by half its length without losing essential content. The exercises are a lot easier to follow with the audio provided on the website. However, I found the price of the mp3 way too high for the audio quality. Anyway, if you wish to learn more about it, you will find lots of resources on the website http://www.openfocus.com.

Alone vs Lonely

Yesterday a friend of mine and I were talking on Facebook Messenger. We chatted a little and he said, “You seem fine.” I told him, “I’m not so sure,” and went on explaining my hermit mode, that’s been going on since early this year. 

And then, I read this article online and not only did it struck a huge chord but it also changed my mind. I felt myself nodding from beginning to end. I already have a book on loneliness in my shopping basket, but I thought I should add this one too. 

I told my friend that this time on my own has enabled me to listen to myself, gather my strengths (and I need them so very much), and figure out what’s been going on with me in terms of mental and physical health. I’ve been reading and writing a lot, making sense of things. I’ve also been more creative and I’m also invested in my education, with my post-grad course. How else would I be able to do this in the middle of the crowd? In the middle of the very very noisy, opinionated and vampire-like crowd? My hermit mode hasn’t been one of self-pity but of self-discovery, self-development and empowerment. I’m convinced I will be able, with the help of my therapists and the support of those closest to me, to change certain attitudes and behaviors. 

When I say I’m like a hermit, it doesn’t mean I’m going to grow a beard (that would be fun) and move many miles away from civilization (I would have to come back to go to dance performances, the movies and eat Thai food or sushi). But I know what it’s like to face the stigma. Like the friend mentioned in the article, I know what it’s like to be eyed with a mix of suspicion, curiosity and pity when I spend a few days away by myself and eat out at restaurants. Some men see a young woman by herself and think they’re easy prey (they’re not, and they most likely wish to remain lost in their own thoughts).

But I’m not going to spend my free time stuck at home just because I don’t have a boyfriend or my holidays didn’t overlap with any of my friends’. Hell no. There’s too much I want to see and visit and learn before disease eats me away. Stigma is in the eye of the beholder. My alone time is productive, rich and peaceful, and I won’t doubt myself and apologize for it. Not anymore.