Day 1. I’ve understood that what I’ve been asking my barber for years (but I’ve never been able to make him understand it, since every time the result is different) is a russian haircut. The way men bring longer hair behind toward the bottom, very short on the sides. That’s exactly how I like my hair to be.

Saint Petersburg seems a little gray and dull at a first sight. I’ve read someone calling it “the Venice of the north”. No way! Venice is on another level.

The administrator was very nice, but the hostel I picked is atrocious. I am already preparing mentally a punishing feedback for Booking.com when I return.

It’s true: some russian women (not all indiscriminately) belong to a superior human race. They seem emotionless and cold tough.

In general people in the streets are very silent: many seem sad, or worried.

Eating is a problem as usual. I grabbed a salad at Subway this evening but tomorrow I will have to invent something.

It’s weird: sunset at 22.30. Now it’s 23.30 and outside there is still a lot of light.

Day 2. Ok I was definitely precipitous with my judgement yesterday. With the sun, and going to the real city center (instead of the one that I tought was the city center yesterday…) Saint Petersburg appeared today as beautiful. I wasn’t planning to see the Hermitage museum so early, but I found my self in front of it this morning, so I dediced “well I’m here, let’s enter now!”. It is beautiful. I am not the greatest estimator of art and cultural stuff, but I really enjoyed this magnificent museum. And I got a beautiful idea for my next YouTube video (I almost burst into laughter in front of a specific painting).

Every time I leave Italy I am always pleased when people don’t recognize me as Italian. Yesterday the hostess on the flight was distributing the immigration cards. In the row in front of me, where some Italians seated, she asked “where are you from?” and gave them the card, but to me she just gave a quick look and passed over. Yes! I am credible as Russian!

Saint Petersburg seems a very romantic city. Plenty of couples, everywhere.

I had today the same thought that I had few months ago when I was in Beijing: there are no black people here. I may have seen 2 or 3 so far. Everybody is white, and mostly russian.

I ate at Subway today. It was decent: a pseudo-healthy sandwich, made of white bread (sigh) but stuffed with chicken and vegetables.

My room has a semi transparent curtain. At 5.00 am my lovely dump-room was already full of light. And yesterday evening some chatterbox Russians were going back and forth in the hall, creaking on the parquet till late hours. проклятье!

до свидания!

Day 3. Why do people that are taking pictures at someone in front of them need -> hours <- to focus the subject, while they block the walking people!? It takes me a moment to point the camera and click!

I am starting to dechiper Russian a little. It’s not that complicate, at least figuring the characters I mean. C is S, P is R, N reversed left-right is I, and so on… I was proud to understand the logo of a supermarket this afternoon: ‘универсальный’ which is (if I am right) ‘universal’.

I misjudged not only the city (which is more alive and bright than what I thought the first day) but people too. They are not that sad, especially today with this great sunny saturday.

Beer is very popular. A lot of young men and women walk in the streets with a bottle in their hand.

Men are very tall. I am so dwarf -_-

Day 4. Yesterday night I saw a part of the Eurovision Song Contest (something I didn’t even know existed since last year). As many others, I fell in love for the adorable Russian oldies!

I went to the Mariinsky Theater to see a ballet. The ticket was a gift of my friends for my birthday. I am grateful to them for their kind thought, but I found it atrociously boring. I had to leave after the first half.

Fantastic sunny day today. I didn’t do much real tourism, I mostly walked, went in and out the shops, and enjoyed the atmosphere. Tomorrow it will be time to leave already. It was nice to see you, Saint Petersburg!

I am a disabled man.

In this post I will describe my vertebral disease (hemivertebrae), and how it affects my life physically and emotionally. I will not be surprised if it will end up with me crying while writing 🙂

Why I create this article

There are 4 main reasons:

The disability makes me have uncommon behaviors that the people of my life (relatives, friends, colleagues) don’t understand. For me it’s hard to explain them everything by speaking: my condition is complex, articulated, and I have not accepted it to an extent that makes me comfortable to discuss it openly. I think that a written article is the best I can do: from now on, if I need to let someone know, I can say “go here and read”.
I want to share my story for someone who could be in a similar situation. I didn’t find much about hemivertebrae in internet, that was really depressing at the beginning. When I started searching I found information saying that this disease is typical of dogs…! I felt like a circus freak, and bad. Instead I know now that there are many people in the same situation: I am writing for you. I will give the article a sort of medical direction, other than personal.
The issue caused and causes me pain. A considerable part of this pain is emotional: I have cried many times, I have been nervous, frustrated. I think that writing on the subject could help me relieve the emotional discomfort.
My disease is not an evident one, so people that are not good observers usually ignore that I live with it. It’s my job to tell them, to let them know who I really am. And possibly give them a chance to love me even if I am so “out of standard”.

Hemivertebrae C6

Ok, let’s see what my condition is. Here is the image of a regular spine, composed of a pile of vertebrae. In normal conditions, vertebrae are cylinder-shaped. They start at the bottom of the spine, close to the sacrum, and go up along the back and the neck until they reach the cranium.

Unfortunately, some of my vertebrae decided that this configuration was too banal. In particular those in the region of the neck, which is my critical area. The lead actor of the story is C6.

For many C6 is a regular cylinder-shaped vertebrae at the base of the neck. But for me C6 is smaller than usual, and is triangle-shaped. As the name hemivertebrae suggests, it’s half of what a vertebrae should be. I researched for a while in the web, and the explanation I usually found is that this disease is congenital. Hemivertebrae developed when I was just a fetus, and the oxygenation of C6 wasn’t sufficient to allow it a full development.

This is an image of the front of my neck taken 2 years ago. I have others but this is very good. I must say it’s a shock for me to see it, every time. I usually do the exams, take a quick look at the results and archive them with a feeling of sadness and rejection.

As you can see the presence of C6 caused a severe curve. The other cylinders found a way, a characteristic way, to adapt to the presence of the freak. Diagnosis talk about cervical scoliosis, which is quite uncharacteristic. It’s very localized. My spine is straight from the middle down, but very curvy in the trapezes area. Usually the curves related to a scoliosis due to hemivertebrae are wider, because hemivertebrae happen much more frequently in the lumbo-dorsal area.

This is THE problem. That cause the following

Consequences

First of all, C6 caused anomalies in other vertebrae in the surroundings. Two that have been significantly impacted are C1 and C2, at the junction between the spine and the cranium. They arrive with an unnatural angle, so with time they have morphed to survive in this situation. C1 has fused partially with the occiput, C2 and C3 are fused together, all the others have various degrees of malformation. The craniospinal hinge is a total mess. I always feel frictions and noises there. An old doctor once said “I’ve never seen anything like that”. I let you imagine how I felt when I heard it.

I lost the physiological curve of the neck, it is too straight. That is not a rare condition though.

Acromio-clavicular joint separation. This is a problem in a distant place. The altered balance of the spine, due the center moved to the left, caused a stretch in the ligament between the acromion and the clavicle of my right shoulder.
This is quite recent. The most worrying problem started a couple of years ago: eyes blinking. It worries me because it’s a sign of neurological pain. Probably the frictions are starting to impact the nerves and the marrow. In some moments, especially when I am sit, I can’t avoid to continuously blink my eyes. That’s embarrassing, because it happens even when I am in front of someone or I am talking. Sometimes entire days pass without this problem at all, other days I spend big part of the day furiously blinking my eyes.

What appears outside

My neck is shorter than normal. This is obviously caused by that deviation at the base of the neck that shortens the length.
The muscular tone around my neck is inhomogeneous. In fact it is very solid on the left where the spine is closer to the surface, and much more tender on the other side. During my growth, before discovering that all my problems were caused by the bones, I always thought that it was just a muscular problem. I tried to train hard in the gym, and even to find a way to train the mastoid muscle, but of course I always failed.
The trapezes muscle is hypertrophic. This is probably a result of the muscle adaption to these vertebrae.
I miss a portion of the spinal curve. And I have sort of a soldier posture, with the chest slightly prominent.

The movements

Obviously all these things condition the way I move. To start with, I look rigid when I turn my neck. I don’t have the full range of motion others have. But as a physiatrist once said, and I agree with her, considered the problem the rest of my body has adapted extraordinarily well.

For example I turn more my entire spine when I need to turn, like when I need to look back while driving. And despite the curve in the top part of the spine, externally my muscles have developed almost normally. I don’t have an evident scoliosis, like many people with hemivertebrae have.

About the right shoulder, its range of motion and functionality are just fine. I don’t feel pain but it pops a lot. It’s like if it can go in place and out of place. Just like for the neck, I feel there a sensation of perennial discomfort. Like if I feel it is always in the wrong position.

Talking about movement, the most difficult thing to do for me is to stand still. Example, I have a very hard time at staying long hours sit in front of the computer, when I am in the office. This is actually the reason why I asked a working time reduction to my company (and I was lucky enough to obtain it).

I have a series of tics that I can’t avoid. They make me snap like if I had the Tourette syndrome, except that I don’t have the Tourette syndrome. I move repeatedly my head to the sides, my right shoulder goes back and forth dozens of times in a day (sometimes hundreds). Then there is the eye blinking.

I am aware I must be a funny show for my colleagues in the office, they see someone sit in front of the computer moving rhythmically like if he is dancing on his chair. I feel a little ashamed for this, but I can’t avoid it. I think after awhile they simply stop noticing and get used to hit.

My story

The first memory I have of this, when for the first time I realized that there was “something”, is when I was a child.

We were at lunch with friends of my parents, and while chatting one of them noticed that “Paolo doesn’t turn the neck very much, he is kind of rigid”. The argument was dropped shortly after, and my parents didn’t care much about it. Of course I was a kid, I didn’t have the presence to say “hey, what is he talking about? Should we care?”. But I registered the event, because I felt ashamed.

I don’t blame my parents for not having taken it seriously at the time. I know that even if the discovery was made in my youth, very little could have been done. My problem is mechanical, and the only way to fix it is to operate. It would be a risky operation, and until my conditions don’t get much worse, there is no reason to even think about it. Even now, that I am 31 and physically much more devastated than that young kid.

However if one day it will be necessary, it will probably be a issue of blocking the hemivertebrae and don’t let it slide out of the central axis. This is what a doctor once figured me as a possible in the future. I hope that future is very far.

A little jump forward and I am in the middle school (age ~13). Once a doctor visited my class and told me that I had scoliosis. In fact, at that age my scoliosis was more evident, and I actually had one shoulder notably higher than the other. My skeleton was growing, and I remember of carrying a bag of heavy books on my back each morning, on the way to school. But I didn’t have pain or other problems. My parents were informed and were suggested to make me start some physical activity.

Swimming was the first suggestion, but I was scared of water (actually I learned to swim at the late age of 28). So I did some athletics and basketball. I was good at running (especially at the 100m), but less than decent at basketball (I am a dwarf!).

Not much happened since high school.

I didn’t have particular problems due to my condition there, except for someone occasionally deriding my rigidity or posture. Aesthetic was the primary focus in those years, and I started training at a gym. I was 16. Since then, I never stopped going to a gym. It’s 15 years now.

Weight lifting, stretching and cardio activities have incredibly helped me. I have been very diligent for all these years. Thanks to all my efforts I arrived at the present ‘almost normal’. Which is a success considering the above.

I always tell myself, and occasionally to my friends, that if someone else had “received” my body probably he had turned into a total wreck in few days. I mean it, no joke. My body requires a super strong maintenance and thanks heaven I am a great worker. All my healthy fixations, included the attention to nutrition, are born not only because I wanted to have them, but also because I had to have them. I don’t have the luxury to make things easy.

Going back to the timeline: the university period. When I was 20 – 26.

Great period, great health. The impact of my disease was really minimal in this years, especially because I had a very good lifestyle. I was sit few hours per day (only few lessons at the university) and trained a lot in the gym. The only problem then was inside. While for everybody else the university period was the age of flirts and love, I had that deformity that lowered my security and self esteem. But that was a minor issue, since I’ve never suffered much for being single.

Then the real troubles started.

I got my degree at the university and became an Electronic Engineer. At age 27 I obtained what I wanted: a job in an important IT company with a great reputation. My life sit for many hours a day started. Eight hours on a chair, sometimes more, five days a week. Besides I was also travelling a lot to reach my company’s customers since I had, and still have, a consultancy job.

Now It’s not difficult to imagine what happened, but I didn’t know all this back then. With that many hours sit, pressure was pushing my bones away from the center. I started to feel a lot of pain. After 1 year the quality of my life got so much worse that I finally decided to take deep exams.

Age 28. Exams revealed the vertebral situation. I also discovered for the first time what was causing the pain in the center of my right shoulder, where I feared of having a cancer since when I was a teenager. I remember of thinking “one day I will discover something very bad about this shoulder, but I don’t have the courage to investigate what is inside now”.

After discovering my disability I searched on internet and I saw many physicians. For what I learned and for what I heard, I can’t do much better than what I am already doing. Gym for maintaining the muscular tone of my back, neck and shoulders, avoid long hours sit on a chair, avoid physical stress in general.

The present

At the time I am writing this article, I am 31 years old.

I started with the statement “I am disabled”, which is what I am.

I am sure my parents would be shaken and worried to read this definition I give to myself. Their usual reaction when there is something that scare them is not to talk about it. But I prefer to call this disease by its name, so I can behave accordingly. By the way I can understand their reaction, and the reaction of my sister and those who love me, to the discovery of this thing that I have. Their fear would come from knowing that I am not perfectly happy and healthy.

If it happens that they read this, I want to tell them: mum, dad (sister, friends, all) I am happy. Of course, I would have rather not had these dumb vertebrae, and I am aware that one day things will get inevitably worse. Maybe I will not turn 70 or 80, but I don’t care. I have a fantastic life, and even if it should end tomorrow I am completely satisfied for the wonder it has been. (not that it has to, eh! If I get some extra tens of years I can still do many funny things)

Someone said “it’s not the years in your life that count, but the life in your years”. And I had a beautiful, adventurous, happy and satisfying life in my years so far. And I am grateful for every moment of it.

Finally, as usual when I write articles, I find that I could have explained things deeper or better or more extensively. But I gave up perfectionism long time ago, understanding that if I’d try to publish only perfect articles I’d publish zero articles. Maybe I’ll find time in the future to add more staff here, or improve the way I said some things. But now, it is good the way it is.

PAOLO ds

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Hemivertebrae: my life with disability