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!

Sophia

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 !

Albert

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

Finding Our Resolve

Dear Sophia—

As I am going through a bit of a rough patch myself currently, your latest post was a good read for me. It lifted my spirits, and reminded me of what I’ve been telling my son: failing is OK, but you need to try. And trying—really trying—means giving it everything you have. Nothing more. Nothing less.

I sometimes need to remind myself of that, so it’s good I’ve got kids. 🙂 Just like you. 🙂 What we’re telling our kids, we’re telling ourselves, right? 🙂

Let me tell you two real out-of-my-life stories—if only because our blog was pretty theoretical so far, right? 🙂

When I took my son up the mountain—his first climb on Mont Blanc, almost two years ago now—he was 17 years old. His power-to-weight ratio is, of course, much better than mine. And so this old man had trouble following his pace. We had started our push to the summit a few hours past midnight, as one should. But then—at the crack of dawn, when we had crossed the Dôme du Goûter—we arrived at the final ridge to the summit. Not very difficult technically—but… Well… Psychologically daunting for anyone who hasn’t climbed before. You see the summit, and that very narrow ridge line that leads to it—two or three feet wide only. And then you see the drop on both sides. Is it over 3,000 feet? It doesn’t matter. It’s just a sheer drop. Two or three feet may seem like a lot—like a sidewalk. But there is no road next to the sidewalk here. If you fall, you’re gone. That’s when you realize that climbing is not like a high-altitude trek. It’s… Well… It’s bad. We shouldn’t do it—too much risk—but then that’s why we do it, right? :-/

He had difficulty keeping his balance because of the terrible wind gusts at that altitude. He had the power, but he didn’t have my belly. 🙂 So he hesitated as the snow ridge narrowed down. And he stopped when it got really narrow. He cried he couldn’t do this, and that we should turn back. So we turned back, to a spot where there was plenty of space, but where we could still feel those maddening wind gusts. I made him push his ice axe deep into the snow, and told him to kneel, stabilize and breathe. So we sat there in the snow—just close to each other, not saying anything. After a minute or so, I said something like: “We can go back. But you’re going to be back. There is the summit. A few hours more. You want to reach it. No pressure. If you wanna go back, we go back. You can come back.”

We just looked at each other, and I could see him calming down as he was breathing somewhat more normally—as we had stopped the physical exertion. And then he got up—and we got started on the ridge again. We went up slowly. Step by step. I made sure that, whenever he moved his ice axe, mine was anchored deep into the snow—and I only moved mine when his was anchored. I stayed behind him, so I could see him, and I only gave him a few feet of rope, so I could stabilize him immediately if he’d loose balance. We had to get across a deep crevasse while going up. At that point, I told him to get behind me, and he climbed across it right behind me. With my ice axe as the anchor for both of us. I thought he’d freak out again, but he didn’t. We reached the summit many hours later—but well before noon, so the snow was good throughout the climb. I hadn’t told him, but I had set my cutoff time at noon. I’ve been in bad snow. I didn’t want to be in bad snow with my son. So we got back down safely. [It is very telling that most people who die in the mountains make the summit but can’t make it down. Think about it, Sophia. What does it mean?]

Was this meaningful? I think it is. Just two weeks ago—as he was struggling with the stress of his first university exams—he wrote me to thank me for making him do something that he could be really proud of. So that mountain—his first and only one, so far—has given him the confidence he needs to climb a much more difficult one: getting through university. I also repeated what I had told him a couple of times already: failure is an option. You don’t need parents when winning: you need your parents to support you when you fail.

The other story is about my one of my brothers. He struggled with alcohol addiction. I thought he’d never be able to abstain, but he did. I asked him how he finally got himself to quitting. He said: “I failed many times, but every day is a day. And you keep trying, and then one day becomes a week, and a week becomes a month, and then longer. I failed many times. I was angry at myself, for not keeping a promise—worse, not keeping a promise to myself. But I was also able to forgive myself, and start a new day, with new resolve.”

Coping with addiction is like climbing a mountain: if you can’t make the summit the first time, you just have to keep going back at it. I admire my brother for his strength and will power. Healthy people who think they are strong and have conquered it all, should probably think again: did you ever cope with disease, or with addiction? If you’re think you’re strong, think again.

So… Well… Sophia—Please be kind to yourself. Think about the promises you want to make to yourself before you make them because… Not keeping a promise to yourself may feel worse than not keeping a promise to a friend—especially when you’re coping with addiction, like my brother, or, in your case, when your health condition is such that you should or should not be doing certain things. Hence, think about your promises before you make them—so you have a better chance of keeping them. But, please, also forgive yourself when you’d happen to make a mistake.

Let me conclude with a song and a poem. The song is one you surely know: Shakira’s song for the 2010 World Cup. It’s really one of my favorites for almost any situation. Just sing along with it. You know the first verses, right?

You’re a good soldier
Choosing your battles
Pick yourself up
And dust yourself off
Get back in the saddle

Music is powerful. Let it engulf you.

The poem is even more powerful, I think. It was written by another blogger, who calls herself Oriah Mountain Dreamer. It usually makes me cry—a healthy release of tears (and pain).

The Invitation

It doesn’t interest me
what you do for a living.
I want to know
what you ache for
and if you dare to dream
of meeting your heart’s longing.

It doesn’t interest me
how old you are.
I want to know
if you will risk
looking like a fool
for love
for your dream
for the adventure of being alive.

It doesn’t interest me
what planets are
squaring your moon…
I want to know
if you have touched
the centre of your own sorrow
if you have been opened
by life’s betrayals
or have become shrivelled and closed
from fear of further pain.

I want to know
if you can sit with pain
mine or your own
without moving to hide it
or fade it
or fix it.

I want to know
if you can be with joy
mine or your own
if you can dance with wildness
and let the ecstasy fill you
to the tips of your fingers and toes
without cautioning us
to be careful
to be realistic
to remember the limitations
of being human.

It doesn’t interest me
if the story you are telling me
is true.
I want to know if you can
disappoint another
to be true to yourself.
If you can bear
the accusation of betrayal
and not betray your own soul.
If you can be faithless
and therefore trustworthy.

I want to know if you can see Beauty
even when it is not pretty
every day.
And if you can source your own life
from its presence.

I want to know
if you can live with failure
yours and mine
and still stand at the edge of the lake
and shout to the silver of the full moon,
“Yes.”

It doesn’t interest me
to know where you live
or how much money you have.
I want to know if you can get up
after the night of grief and despair
weary and bruised to the bone
and do what needs to be done
to feed the children.

It doesn’t interest me
who you know
or how you came to be here.
I want to know if you will stand
in the centre of the fire
with me
and not shrink back.

It doesn’t interest me
where or what or with whom
you have studied.
I want to know
what sustains you
from the inside
when all else falls away.

I want to know
if you can be alone
with yourself
and if you truly like
the company you keep
in the empty moments.

[…]

I have shared this before— with close friends, and with my life partner… But… Well… I still keep reading it as an invitation to myself. I like the last line in particular: I want to know if you can be alone with yourself and if you truly like the company you keep in the empty moments.

When you’re alone, your only company is yourself, right? Despite all of my adventures and forays in exciting places, I sometimes think I still have trouble liking myself. Mountains have a well-defined summit, but the road of life does not have a clear end. That’s why it takes courage to keep following it.

Yours—Albert

Finding My Resolve

Dear Albert,

Thank you so much for your letter, your thoughts brighten my day and remind me of all that is good in my life, especially because it is fleeting. I have taken to heart your pledge to better oneself through practice.

I hurried home to write to you after finishing my physical therapy session. I have been going to therapy twice a week for a couple of months and it is truly one of the highlights of my week. At first, I enjoyed it for the relief that comes from the stretching and manipulation of my stiff muscles, but it has developed into much more. It is my hour to be completely selfish. To give into the relief, to force my mind to listen to my body and to celebrate the progress, as frustratingly measured as it is.

I have given a lot of thought to manifesting wisdom through action and perfecting it through practice. Like you, I find this one of my greatest challenges. There is so much written about MS and the myriad of ways in which you can manage your symptoms or curb the progression of the disease. Eat the right foods (by following countless diets) exercise, meditate, acupuncture, the list is long, and I have tried many of them. Admittedly, these all have some benefit to varying degrees. Why then, if I know these things will help me, do I purposely choose to ignore my better judgement and eat greasy burgers, sleep in late and forgo yoga for a movie with a friend? Not enough practice! More importantly not enough mental fortitude.

By encouraging me to begin this blog you have forced me to write down those truths I have purposely ignored or denied. Despite everyone around me that willingly offers help, how I manage my disease and the choices I make are my responsibility, and in the end, mine alone. 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.

Warm regards,
Sophia

About giving and receiving

Dear Sophia—

Many thanks for your letter, which brought this blog back alive.

I originally started this blog to become stronger. I thought that a better articulation of what I truly believe in and what inspires me, would help me to become a better person. I often feel I do not give enough, and I seldom feel gracious. So I thought writing a blog would help. However, the gap between my writings and what I actually do (and how I feel about it) speaks for itself: wisdom is good, but practice is better. I do lack practice. You are more of a practitioner than me—and with plenty of grace, for sure.

We are all going to die. The perspective of death is, in fact, what forces us to try to make sense of life. If we’d live forever, we wouldn’t be asking all those philosophical questions. That’s a sentiment that’s widely shared. Philosophy, and even science, will never give us a final answer to those questions. Literature helps us better in this regard. Have you read The Plague? Philosophers labelled this extraordinary novel—which explores the subject of death like no other work I know—as existentialist. As a youngster, while trying to read Sartre and other French intellectuals, I was very much intrigued by this philosophy, which basically states that philosophical thinking begins with the human subject—not merely as a thinking subject, but as an acting, living and, therefore, limited and vulnerable human being.

My life experiences have led me to appreciate such more engaged thinking even more. As you rightly point out in your letter, much of our sense-making of life lies in giving, in reaching out, in being there for others. My mom, who died of a very aggressive cancer last year, struggled with that too. As I took care of her during her final weeks—every night, because the nights were the most difficult—she talked about that too. She suffered a lot—physically—but the idea of not being able to be a gracious host for her children and her grandchildren bothered her most. She had opted for a euthanasia procedure and, looking back, I realize she called the doctor for the final appointment on a day she was too weak to make coffee.

mom

She was not able to make coffee for us anymore in the end, but she continued to give other, more important, gifts till the very last moment—when she chose to die. It was a moment of grace, combining moral strength and courage, which I feel very privileged to have witnessed. As for giving… Well… I feel her greatest gift to me was that she allowed me to take care of her.

You too, Sophia, are giving your nearest ones a lot as you accept to be taken care of. Giving is not a one-directional thing. In fact, the person who receives may actually give more, because it takes quite a lot to accept to receive for strong people like you. That’s something you should appreciate, I think.

Also know that your offer to do a blog together means a lot to me too. It will, hopefully, bring more practice. 🙂

Yours—Albert