Being silent…

Dear Sophia –

The title of this post is just in response to the title of your post – being afraid.

Yes, my new gig has been so good so far. Thanks for inquiring ! 🙂 Because… Yes, I am still good at selling dreams. In fact, I seem to get better at it as I grow older: the Millennials I deal with appreciate my sour mixture of experience and idealism – or so they say. But… Well… Frankly, I’ve been struggling – with myself, and with the world around me. Fortunately, my kids always smile and tell me this is the best world they ever lived in – but then I know that’s because it’s the only world they ever lived in.

This, then, is our destiny, right? We’re happy because our kids are happy – and they always are, of course, because they are young and energetic.

I loved your latest posts – especially the one where you talked about finding some jewels in the “everyday trash heap”. I can see the jewels – but I don’t do much with them. 😦

You know I love math and physics – but I am usually too lazy to get too much into the nitty-gritty of any theory. I have this bright idea. In Einstein’s general theory of relativity, the force of gravity sort of vanishes. All matter just bends space so a straight line is… Well… A curvilinear trajectory in Euclidean space but then… Well… Einstein wondered why we should prefer Euclidean over non-Euclidean spaces, and so he showed we can look at matter bending space so everything continues to move in a ‘straight’ line in a non-Euclidean space. 🙂

My bright idea is the following: what if an electron moving around a nucleus – or moving around in space in general – is also just following a straight line in its own space? What if it, too, is just moving in its own space – without any real forces acting on it? It would explain – for starters – why it is not emitting any radiation while moving around. More importantly, it would… Well… I won’t bother you with technical stuff.

Unfortunately, understanding Einstein’s general relativity theory requires a very deep knowledge of pretty advanced mathematical stuff (tensor algebra, basically), and it’s dealing with matter of one color – so to speak – only. Electromagnetic forces deal with matter coming in two colors – positive and negative. And… So… Well… The math of a general relativity theory for electrodynamics (and – of course – we should integrate quantum theory as well) would be… Well… Totally off-limits for someone like me. 😦

I can see the jewel. It sparkles. It’s just… Well… Will I ever understand it? Probably not. My horizon is shrinking as well. 😦

Warmest – Albert


Being Afraid

Dear Albert,

I hope your latest employment venture is going well and you are finding joy and purpose in your work. Employment is a double-edged sword. The money we earn allows us to dream about all the fabulous things we can do with it, the job often wittingly interrupts those dreams.

I am feeling terribly guilty that I haven’t written in a while, I was ready to excuse my derelict ways with a cheeky message about my husband hijacking the computer to finish this year’s taxes, but that would have been a lie. Deep down I think I was waiting for that instagramable event to write about, or that morsel of profound wisdom I could share. Alas, my life these past few weeks has been very vanilla.

So where to get the inspiration to blog amidst a hum drum life? I suspect that the key to finding the jewels among the everyday trash heap is to be observant. I have recently been making a concerted effort to be more present and aware of my surroundings. This is a challenge for me. It’s a lot easier to succumb to my tendencies to skim over conversations or tasks that I find tedious or uncomfortable. By paying closer attention I might be forced to grapple with underlying themes and feelings that are sometimes frightening. This inattentiveness is a filter. For example, if I really paid attention to tv commercials and took the advertiser’s message at face value I would live in a constant state of fear or at the very least severe anxiety. I am already nervous enough as it is just from watching the news. Granted, commercials seem like a pretty trite thing to ponder since most insult even my dog Lola’s intelligence, however, the same message repeated over and over eventually sinks in to our national and cultural psyche. The pharma commercials alone are doing a good job making one contemplate; do I have thinning eyelashes? If it’s good enough for Brooke Shields then its good enough for me. But then what if I get permanent dark patches on my iris from the medicine? Whether it’s certain disease, the plaintiff lawyers protecting you from imminent danger or the horror of living with large pores, our minds are permeated by fear and fear is a powerful manipulator.

My mother is an excellent example how fear can cause unnecessary stress and limit one’s actions and conceptions. She’s a naturally nervous person. If you call past 8:00 at night she answers with “What happened? What’s wrong?” Geez, I was just calling to see about buying some Tide pods for me at Costco tomorrow. Last week she called worried that I had not fixed the lock on my daughter’s car door. I needed to do so urgently because the number of rapes on campus had skyrocketed. First, rape is a serious concern and warnings regarding safety should never be disregarded, however, as with all information, it’s important to keep some perspective. There were 3 rapes on campus in the last two years. In the scheme of things this is not something I worry about too much and thankfully this news doesn’t automatically bring to mind how my procrastination is putting my daughter in danger. At least on this matter.

Having lived through her share of emotional crisis and physical trauma my mother has been consumed with intangible fears and expectations of the worst possible outcomes since I can remember. Memories of her ominous predictions that I would choke on my lollypop if I ran with it or face some kind of peril if I stayed out because “nothing good happens after 2 a.m.” ring loudly in my head. It has had such a significant impact on me that I routinely find myself making a conscious choice to shut off her voice in my mind. I fight back the urge to imagine the terrible scenario I am already racing to conjure up.

I don’t think I would resent these tendencies as much if I really had conquered my fears. I have known since I was 18 that I have MS. For years, I barely acknowledged to myself that fact that I had MS and did everything I could to suppress my fears related to this disease. I suppose I felt that if I wasn’t scared of it, somehow, I could overcome it. It worked for a while. I was able to ignore it for many years, but like everything else that you ignore, it eventually catches up to you. In the back of my mind I have always been terrified that one day I would be in a wheelchair. Now that today is that day, I am more annoyed than scared. I am certain that my fear did not either delay or precipitate my dependence on the chair or the progression of my disease. What I do think, is that time being afraid, is time wasted. Bad shit will happen, to me and to those I love. I know that. Being afraid or worrying about it won’t stop it from happening. Fear is the background noise that stops me from dealing with the present-day problems. Fear is my excuse to be weak. Fear is my self-doubt. Fear is also a reality that will always lurk, hopefully in the background, creating uncertainty and anxiety.

I mentioned the importance of perspective in maintaining focus. These conversations have provided me with a prism for introspection. I am looking closer at my reflection in the mirror. The person looking back at me is not scared!

Warmest regards,


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


Stages in life

Dear Sophia—

Thanks for your letter. Your writing on how our relation with our children morphs into something new as time goes by resonates with me too. I always felt terribly guilty about being an absent father but, as mentioned, I felt I finally could forgive myself for that—when they left, just two weeks ago, for Belgium once again. We were all smiling, laughing, hugging and, weirdly enough, also crying a bit—as happy as we could be.

Unfortunately, my son got an accident just a few days later. He had been drinking heavily with fellow students, celebrating his amazing scores on his first-semester exams, and didn’t manage to protect his face when a car hit him in the early morning. He is going to be alright—it’s only his face, and dentists can do a lot nowadays. However, the scars on his face will, hopefully, remind him he shouldn’t be getting into those drinking binges.

They always happen when he’s euphoric. Never when he’s down. Or… Well… I’ve been thinking he may be down when he’s euphoric, although that’s the weirdest thing to say, right? Fortunately, he reached out, and we had some very good chats up and down over the past weeks (thank you, God, for the Internet!). My dad was an alcoholic, and I’ve had issues with drinking too, so it was good to be able to talk about those openly. Hence, in a way, it was yet another example of how I can still be a responsible father, despite the distance. In fact, I appreciated him calling out and talking openly, as it blurs, once again, the lines between giving and receiving: he wanted me to not think badly of him and, in the process, being in that position to forgive him for being so stupid enables me to forgive myself for… Well… Having been very stupid myself at times. 🙂

I once tried to define the stages of life in terms of giving and receiving:

1. As a child or youngster, and as a young man or woman, we are (mostly) in a receiving  position, as we learn and try to understand. We have and use a lot of energy during that time – and Freud was probably right in noting that a lot of it comes from sublimating sexual energy. Some of us have excessive energy, and it can kill us. In fact, looking back myself, I am not sure I’d want to be young again—and that’s probably why my son is not ashamed to talk to me the way he does: he knows I was worse. So… Yes… I find that growing older and wiser is a blessing really – in disguise or not.

2. As an adult, we both receive and give, in a very intense exchange with our families, our friends, and society in general. We are very productive then, but have little freedom to make any real choices in life, because of practical constraints and all kinds of obligations towards the people who surround us. That stage also consumes us, in a way. Often to such extent that most people don’t manage to prepare properly for the third stage in life, which is the stage in which we let go, in which we accept all and, hence, in which we focus more and more on trying to give back, instead of taking.

3. Indeed, when we get older, we prepare for death. Not in a morbid, conscious way—as you rightly noted. It’s just… Well… We are just so much more aware that the horizon we see might, effectively, be the end of our flat world. We should prepare for death by reducing our dependence on others, rather than increasing it.

That’s not easy, because we usually need more care physically—as you know so well. But you also know that it’s not the wheelchair that bothers people. It’s not our body. It’s our mood. It’s what we say, how we feel, how we approach the situation. It’s all in our mind. Our emotions. The lack of a purpose that also pops up when you have no real job (as I know all too well now). We can only do one thing then: we should focus on giving only, without any expectation of getting a return.

Wisdom is but one of the many things we can give. In fact, that’s why we started this blog, right? We feel we’re—finally!—in a position of sharing some words of wisdom. 🙂

Of course, what you’re writing, and what I’ve been experiencing over the past year, makes me think it’s not that simple. As we get older, we are still very much in need to receive. Perhaps we just receive more and more for what we give. I’d sure would like to think that way !

I look forward to your thoughts on this. Does this make sense?

Yours, Albert

New Friends

Dear Albert,

I was planning on writing to you with a recap of my morning, I was fitted for a new wheelchair (more on that later), however, after reading your letter my train of thought has shifted. Your words always resonate strongly with me. Your interaction with your children and the changing nature of relationships between us as parents has been on my mind as well. More so today after the horrific news of yet another school shooting. The images of those parents’ anguish as they desperately seek out their kids face in the crowd. I can’t even begin to imagine the terror they had to endure. My heart aches for them. The first thing I did was call my two kids, I am so grateful they answered.

I am 6 months into my life as a semi-empty nester. My 22-year-old still lives at home, at least I am pretty certain she does, and my son is away at college. This past January, I was also fortunate to be able to spend a week on holiday with them. It was our first adult family trip and it was fantastic! I got to spent time interacting with 2 grown people had great conversation, were adventurous and who I liked spending time with. I had made two new friends on that trip and our child/parent relationship had morphed. I don’t know about you but I like this stage much more.

At home this absence of kids has left a vacuum. Yes, there’s less noise, less laundry, less nagging but when it’s too silent I really miss having my kids at home. This lack of distraction leaves only you and your partner to seek out different means to fill that void. I have found we do have more time in the evenings for dinner with friends or a movie but the travel to exotic places is still on hold for now. I envision that this stage is a time to reinvent yourself. More “me” time. I’m not sure what this new, reinvented me will be like but I hope this blog will serve as a canvas to explore my possibilities.

I don’t want to sign off before telling you of my new chair because in many ways it is the tool that will allow me to seek out these new opportunities, whatever they may be. I have ordered a cherry red frame which I am still vacillating about. It’s like a tattoo, your stuck with it for a log time. Will I grow bored of the color? Will the red clash with my outfit? These are things you have to think about. More importantly, it will be made specifically for me. For anyone who has not spent time in a chair, all wheelchairs are not created equal. I am looking forward to a perfect fit!


Forgiving myself

Dear Sophia,

Many thanks for your last letter. I didn’t write this week because my daughter and son were here. They study (medicine and engineering, respectively) in my home country, where free access to education still means something. As I see them once or twice a year only – I separated when they  were only 7 and 9 years old – our holiday was intense.

Our times together always are. I used to take them to exotic places – preferably adventures far out in the wild, like a trek, or on the cycle or motorbike, or even a climb – but, now that they are grown up and studying, holidays together are one or two weeks only, and so we went for a city trip: we visited New York and Washington. What great cities ! It is surely not our last holiday together, but the frequency, and the time we’ll spend together, are likely to further decrease. In fact, my daughter told me she wants to go on a trek alone (or, preferably, with a friend) this summer.

It made me happy and sad at the same time. Happy because that’s what you want your kids to do: travel, explore. But sad too because it rubs it in: I was largely absent as they grew up.

We don’t always talk about that but, from time to time, we do. Today is the last day. They’re showering right now, and will then pack to leave for the airport. I woke them up this morning, and we spent some time chatting in bed cozying up altogether. They’ve been urging to forgive myself for all I did wrong, and today I did – I think. It felt liberating.

I won’t write too much about it here – it’s a bit too intimate right now, I feel – but… Well… I thought about your words this morning:

“I pledge to honor this gift by working to perfect my practice. Documenting this journey, the good, the bad and the ugly. I ask in advance to continue your insight, inspiration and of course, to call me on my bullshit when you see it.”

You should call me on my bullshit too ! Stay strong !


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!