Category: travel

Staying busy

Dear Sophia—

It is rather heartwarming to see your anger and passion about what happens in the US. I left Washington DC a few months ago, and I felt relieved when the plane took off so I could stop worrying about it. 🙂

I have been wandering around. The wandering included a wonderful trip with my son. We motorbikes through the Indian Himalayas—Kinnaur, Spiti, Lahaul, Ladakh, and Kashmir. My version of Zen and the Art of Motorcycle Maintenance, I guess. 🙂 I read a few good books along the way. Herman Hesse, of course. Re-reading Siddharta or Narcissus and Goldmund is always refreshing. I also bought some more recent books along the way, such as Hariri’s Homo Deus. Yes. A bestseller, and deservedly so.

I loved it. It wasn’t so much the broader picture he paints, but the little factoids (and the way he arranges them to produce a remarkably smooth story) that got me hooked. Most notably, what he writes on consciousness and awareness is very fascinating. He basically analyzes it as a epiphenomenon of our… Well… Unconsciousness. 🙂 Recent brain research (such as the research done by Dr. Morsella and his team) shows that, we think we make a decision, we are actually only becoming aware of it: our unconscious mind has already made it. The neurons light up before we think we made the decision. Before. Not during, or after. No. Before. He concludes freedom of choice is just a myth we need to ground our morals and values so we can justify why we put someone in prison (i.e. take his or her freedom away), for example.

I am not so sure the findings destroy the idea of personal freedom: I still like to think we can still change bad habits, for instance—because we can think about them in a process that is far more elaborate than just choosing this or that color, or opting for a croissant rather than a pain au chocolat today—but… Well… It made me think I should try harder, because I still have a lot of bad habits. 🙂

It also makes me think we probably need a new framework for thinking about morals and values in society—and how we can contribute by making the right choices. In that regard, all he writes about us being so ‘social media-obsessive’ nowadays surely rings a bell. In fact, I felt like switching off Facebook for a while, but then I am too addicted, I guess. 

It also made me think about what understanding really means, and I am going to think about that in the coming days. I’ll keep you posted on any insights I may or may not gain. In the meanwhile, please keep writing !

Yours—Albert

Lessons Learned

Dear Albert,

I’m am so glad your son is safe. Thankfully, most wounds, both mental and physical, heal with time. Since kids don’t always think of the consequences scars can be important reminders, often of one’s youthful imperviousness to peril. They also make us unique and serve as conversation pieces that offer subtle lessons for others to hopefully learn from. It seems like pandering but it has always held true for me that experience is the best teacher, and similar to a college education, these lessons definitely do not come cheap.  Don’t beat yourself up. As parents, I am a firm believer that no matter what approach you take in raising your kids, you fuck up and consequentially, fuck up your kids. Mine have now lived enough to call me on my shit. Yet another example of the circle of life.

After reading your posts I always reflect on the similarities of issues that drive our thoughts, reactions and even our wallets. It is easy to attribute this to age, education or other privileges we are certainly lucky to benefit from, but I hope that we are striking a deeper chord and raising topics or concerns that will resonate with others. I suppose time and where this “blogventure” takes us will tell.

I also have good news to share, I have a part-time job as assistant to a terrifically talented and kind author. I have spent the last few weeks learning some of the publishing world and working on organizing myself in order to help organize him. I am fortunate to witness the vivid emotion and deep introspection that is derived from the arts, something we are sorely in need of today. I am also painfully cognizant that writing is a skill that takes dedication and practice to excel at. Another thing I am thankful to you and this blog for.

I think about how central having a purpose is to our lives. Being responsible, to someone or something keeps our minds occupied, gives us meaning and hopefully gives us pleasure. These past discussions have focused a lot on our kids and defining ourselves as they transition to adults. While I have never been one of those mothers with a laser focus on their kids’ activities the blog posts have been a testament to the void they leave as they strike out on their own. It’s time once again to define myself as an individual, forced to measure success by my own merits and my own scale. That is a bit daunting.

Do opportunities present themselves at right time, or are we just more open to the possibilities? I’m not sure why or how things happen when you seem to need it most but I am grateful when the stars align. For me this job is more than a list of activities or set of tasks to accomplish, it is fundamental to my well being in the following ways:

It is an important distraction from the pain. All too often I can find a myriad of reasons (not excuses) to avoid doing something. The pain and the fatigue are very real and often take precedence but having something to focus your mind on is a blessing. I feel a huge sense of satisfaction and resolve when I look up at the clock and I have spent 4 hours working and not thinking about stiff legs or a sore back, plus I’m exercising my brain!

It provides an important sense of financial independence. I am not implying that I have suddenly changed our tax bracket by working but it allows me to have some WAM, Walking Around Money.

The interaction with people and knowledge acquired hopefully makes me a more interesting person. At the very least I find myself more interesting.

I  chose to feed my ego with my first paycheck!

Fondly,  Sophia

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Standing Out

Dear Albert,

Thank you for sharing such a personal account of your adventures with your son. These memories allow me to travel vicariously to unattainable locations, filling my mind with harrowing images of clinging to a mountainside buffeted by the winds and visions of azure skies, jagged peaks of violet and brilliant white. Your lessons of perseverance and strength are of value to us both.

My passion has always been the lure of travel. I love everything about it, investigating countries and the treasures they hold within their borders, the often tedious and unforeseen transportation challenges en route and eventually the destination itself. The one advantage to knowing that you have MS for as long as I have is that the disease slowly creeps into your life, forcing you to accommodate to its demands over time. By knowing that it would eventually catch up to me I made a concerted effort to do as much as I could, not waiting for the right time or if and when there was enough money. A definite highlight was a 7-month trip around the world with my husband and two kids. We meandered with a general direction but no real agenda, lingering where we felt a compulsion to stay and discover our temporary home. While I love to travel without a fixed schedule, I must admit, most people would decline a repeat invitation to travel with me. My reputation was garnered as a result of the fluid and unstructured nature of my travel style which has led to less than comfortable nights in cars, bus stations and questionable hotel rooms. This unencumbered means of travel has also led to the discovery of amazing places and unexpected adventures.

For me, this trip marked the last time I would travel without serious limitations to my mobility. I miss the freedom of being able to pack up and go, not worrying about stairs or worse, inaccessible toilets. It is easy to opt out. It’s easy to make excuses that it will be too hard (mostly for those that travel with me). It’s easy to convince yourself to stay home. To become invisible.

I refuse to be invisible! I already tried this and was frightened by just how easy it was to allow yourself to feel obsolete. Quit your job, refuse invitations from your friends and make excuses for not participating and after a short time people will assume you aren’t coming. I was embarrassed for being in a wheelchair, as if somehow it made me weaker. Somehow, I had made a choice to give up and lost my ability to walk because I didn’t work hard enough. It took a long time to forgive myself for this self-imposed sentence. If I am truthful, there are still days when I give in to these fears and sulk around my house making myself and everyone else miserable.

This weekend was not one of those times. We had glorious t-shirt weather in January. Outside patio, beer drinking weather, and I for one was delighted to be out and about enjoying it. With a cold beer in my hand and the sun on my face I looked around, no one was gawking, no one really noticed me. If I was invisible it was not because I stood out, but because I blended in. If I am not wanting to be imperceptible I now realize it is up to me to do something to stand out. I am like any other mid-life adult who needs to work harder to continue to define their life and redefine their goals. The traumas I have saddled myself with are excuses and have allowed me to opt out. Not because anyone expected me to. Not because I couldn’t do the work but because I have allowed myself to buy into the excuses and the trite role that we associate with disability.

My next trip will be to Guatemala. I will research hotels with accessible toilets but not much else. I will probably not find a whole lot of people interested in going with me. I will be free, adventurous and utterly visible!

Sophia