Hello everyone!
This is most likely my last article here, and I apologize for the
length and not so much of a fun reading, it is not going to be
about my usual technical subjects. I am also going to tag Planet Mozilla for reasons that
will become obvious here.
This is hard to write, but here we go: I have recessive
dystrophic epidermolysis bullosa (RDEB) which means I have had
a fragile skin since birth. This had an important impact that I
will not detail here, you can read everything about it on dedicated websites.
As I mentioned in my previous
article the cancer metastasis is going to most likely end my
journey here - unless I am going to live through yet another
miracle in my life.
I have never written publicly about my situation, which is also
shared by Marius, because we
are both proud of what we do, we do not want people to feel pity or
anything like that. We want you and others to know us by our work,
our achievements, and such. People easily get emotional and too
supportive once they know the situation. Their actions never made
us feel comfortable.
What changed? Having reached a life prognosis of
several weeks or months I feel that trying to keep this proudness
is not going to help me achieve one of the goals I still have.
One of my current goals is to raise awareness of
EB and in particular the ongoing EB research, which is very promising.
I am fully convinced that children born with EB will no longer have
to go through the same hardships as Marius and I did.
The running theme of this article is how I was touched by the
people I met. How you have all made my life much better, and
ultimately how you can also make a positive difference for others.
I will dedicate the rest of this article to making a case for
donations, why they are important for you and others. I am going to
put things in my context, otherwise I feel like leaving matters
unexplained will not make a strong enough case for my goal, my wish
for others.
This is where you, the Mozilla
community, and anyone who listens come in. You can help others
get treatments sooner than later by supporting EB research.
In the 27 years of my life, I have met a few people who made a huge
impact on my life, in different ways. I will start with the
charities that have donated a lot of dressings to us. With EB
patients wound care is an integral part of daily life, and the
special dressings we received were essential to making wound care
much easier and safer. From these charities I have to name Debra UK
and an amazing person, Agnes Beveridge. Thank you Agnes. Since its
beginnings Mini Debra from
Romania has also been very helpful.
The people I made friends with and their impact on me are very
important. A chemist, engineer, who has the spark of a geek. As an
older man figure, he was influential. We played lots of chess games
and we had fun. Thank you Dan for supporting our geeky nature in
the early days and staying a friend forever.
Around 1999 when Marius and I first went online, one of the goals
we had was e-learning. In the tech age of those days e-learning was
a lofty concept. Little did we care or know, so we contacted a
professor from a Romanian University, as easy as writing an email
to a friend, even more mundane. :-) We started from that silly
email to what it became today: we made a friend and found a mentor
of online conduct and education. Thank you Prof. Mihai
Jalobeanu.
The third person who I want to mention here is a cousin who grew up
to become a Catholic priest. As a student, he spent many summer
vacations with us, returning from Rome, Italy every year. We
learned so many things from him, about culture, philosophy,
history, religions, faith and many more. We played a lot of chess
as well. His influence cannot be quantified. Thank you Simon.
Much respect and appreciation to Professor loan Dzițac who
coordinated my bachelor's degree and master's thesis. He is one of
the professors who make the Romanian academia better every day,
together with a few others like Prof. Jalobeanu.
Before I became a Mozillian I was an Opera browser user, and as an aspiring
Web developer I became involved with beta testing pre-releases of
their browser. This was during the highschool years and slightly
after, starting with 2006. Those years and the influence of the
Opera team I met online and the other enthusiasts have shaped my
skills and interests. I became more interested in the open Web and
standards. Thanks to everyone at Opera who were really great
people. Your support for the open Web was important for me.
Proud to be a Mozillian
No, not because of the company, but the people who make
Mozilla. It is an honor to
have such colleagues.
My latest experiences are those with the Mozilla team. I was lucky
to join the Firefox
developer tools team in 2010 when the team just formed. I was
quite proud, hehe. :-)
In 2012, after working with the team remotely, I finally got the
courage to be part of the regular team meetings in various Mozilla
offices around the world. The first meeting for me was in London.
When I arrived in London, March 2012, I felt like dreams can and do
come true. It was seemingly impossible for me to do that. To work
for a great company like Mozilla, to meet some of the makers of the
Web, to travel to fancy places, not hospitals, not tourism, but a
work meeting, and no pity. I felt proud, but I also felt the burden
of the amount of work and help others have put into making this
happen. Mozilla on one side and my family with their tireless
support. I did things to get to this "achievement", but they could
not have happened without the endless help from others, their love.
With all that greatness, there was also the disappointment with the
amount of work I was giving others, just to "get my way".
It feels weird and uncomfortable that my fight for life, for living
through the experiences I wanted, to work and travel, really means
that others get more work to do for me. My push forward gives
others work and I need a lot of help. The concept of burden quickly
comes to mind, but then should I give up? I almost always chose to
not give up. For me saying no to things I wanted meant giving up on
life bit by bit. Whenever I had to decide whether I go to a
developer tools team meeting I had this dilemma. Go and get what I
want or let it all be?
I remember how nice it was to meet everyone, the first dinner, with
my colleagues and Johnathan
Nightingale. People who you remember forever. I was impressed
with how accepting people were. I recall meeting Chris Lord (gecko graphics layer work
for Android at that time, iirc) - we had a natural conversation
without any awkwardness. Back home I was used to people asking what
is wrong with me. I appreciated the respect and professionalism. My
disabilities did not matter in these contexts.
I remember with pleasure how mom learned word by word things to ask
for in English, in these meetings, at dinners or various places
where she was with me and my colleagues. Mom was asking for butter,
spoons and other things in Mountain View offices, and so on. :-)
One evening in the first week with the team: we went to a nice
restaurant with the team, for dinner. Once done, I went with mom
and Rob (my manager at the time)
in a cab. Once I went up the ramp, the wheelchair tipped off the
back; in a second I could've been seriously injured. Rob and mom
grabbed the chair, but the driver grabbed my hand down the elbow.
That caused, obviously, a big wound underneath the clothing. Nobody
saw that, mom estimated it, I did not scream or anything like that.
Still, everyone saw, including other colleagues who were around,
how fragile these simple moments are for me. It gave everyone a
"good scare". I felt relieved nothing worse had occurred. That
silly wound did not matter to me. I was more than happy to be
there, things like that happen at home as well. It is all about
enjoying life, irrespective of such nuisance.
Another story is again with Rob as my manager at the time, second
meeting in London, autumn 2012. Having dinner I failed in epic ways
to eat due to dysphagia. After half an hour of nonstop coughing at
the table I gave up and left with mom back to the hotel room. My
face was all red, I was sweating, etc. This was quite embarrassing
but "normal" back home, yet it was disturbing to others seeing it.
Rob was touched by the situation and he also went back to his room.
Mom was in tears, obviously. I arrived back in my room and had an
online chat with Rob.
In London again, I do not forget eating milk with some kind of
dough mixed by a colleague, Heather. I am sure it was not
much of a big deal for her to help me with that. Yet, I appreciated
her help and kindness.
Another big decision was for me to go to a Mozilla team meeting in
Sunnyvale, California, in spring 2013. That was quite a task. As
usual, Mozilla was very helpful and supportive. At the destination,
Alex, my older brother, was
also ready with his support.
Once I was in Sunnyvale I felt again that dreams do come true. Me
in Silicon Valley, in California, seeing all the tech companies
there. Felt epic. Mom was happy as well. I felt that from my room
back home where I went through so much hard time, work and study, I
was able to go beyond that - there was a really good outcome,
finally.
In Sunnyvale my current manager, Joe, helped me get inside a
restaurant by carrying my chair, together with Anton - another colleague. I
grabbed tightly to one of their arms, not because of the fear of
wounds, but the potential embarrassment that a small wound would
cause. As previous experiences tell me, in a split second, any
simple thing can turn out quite bad. And... when I am with others,
I can see they are not so much aware of the situation they are in
control of. I just did my part, hold strong! :-)
Another story of Mozillians being awesome: we went to a dinner and
I returned only to see some silly parts of the power wheelchair
fell off. This was still in Sunnyvale, and this time Dave (one of my previous
managers) together with Anton have helped me again. They spent half
an hour or so mounting back that silly wheelchair part. Lots of
sweat went into it. They did not give up and I appreciated it. I
was speechless.
I will never forget how pleasant it was to have the technical
discussions, to watch the talks and demos of my colleagues, and
have the informal chats during dinners and such. Talking to Jim,
Paul, Mik, Eddy and more of them.
Much respect and appreciation for the whole Firefox developer tools
team in Paris, August 2013, where they all applauded Cecilia during
a dinner in a fancy restaurant. As a nurse and cousin she was there
to be my assistant at that time (she went with me instead of mom).
Thank you Mozilla for your beautiful recognition of her efforts and
help. That was a very touching moment for me. Of course, thank you
Cecilia as well.
And I did not forget the birthday cake I got in Paris, end of
August 2013. :-) Mozilla ftw!
In 2013 Marius had his cancer tumor and foot amputated. Several
months of problems and distress for the whole family. Around that
time one of our German friends, from Marius's circle of friends,
fought cancer as well. Philipp
Althoff passed away that year and it felt quite sad to see how
one can live another day and someone else does not. Why? I mention
Philipp here to remember him, his work and spirit. Thank you
Philipp for being a great friend.
Lots of thanks to the German friends that Marius met online many
years ago, Michael
Auerbach, Dennis Schubert,
Nina
Markiewicz, Jan
Frischmuth, Boris Eissrich
and the rest of the bunch. Their support is not forgotten.
Around the same time I was reading the blog articles written by
Eric Meyer known in the Web
technology community, about his daughter's fight with cancer,
Rebecca.
Very touching and made me teaful. I just want to publicly thank
Eric for his strength and courage to write about such a hard topic.
Inspiring. This article I am writing here would not have happened
without his touching words. (I do not know Eric personally.)
I would also like to mention fellows from the Web technology
community who are fighting very hard for their lives and they do it
in their best possible ways: Molly
E. Holzschlag and Gervase
Markham. Their stories and strength are inspiring as well. Best
of luck to you both and lots of courage. Thanks for your great
work. Please support
Molly with a donation.
Last year (2014) I went to the St Thomas’ hospital in
London. I did not know what to expect from the team of doctors.
I did not expect miracles or perfection. On the contrary, the main
doctor I was in contact with has specifically been honest with me
about my prognosis, ever since August. There was no cure from the
start, but I went there to try the best possible ways to fight the
cancer and dysphagia.
Overall, the months I spent there do not feel like a hospital stay.
It was months of experiences with people. I met people who are
different, special and loving. The team of doctors and nurses was
so much better than my previous experiences. There I met new people
from Mozilla as well, and made really good friends. Catherine and
Jess, you are angels, in a lack of better words. Many of my
colleagues visited me in the hospital, and my manager visited
regularly. Thank you all very much.
Mozilla was amazing in the given situation. There is no way for me
to thank them for their support. I had hoped to do so with more
work, to get back into the devtools projects and help as much as I
could.
All these stories are about people who make a difference, with a
small or big gesture. Every meeting with my colleagues felt
humbling in a good way. The time where others help you out of their
way, and you do not know how to thank them and you cannot give
back. Makes you think.
All the medical procedures that I went through in London are
insignificant compared to the experience of getting to know those
people.
I mentioned people who I thank for various reasons, but there are
more. Friends and relatives back home who are helpful, supportive
and kind. People who have hosted my early websites and others who I
worked with. I do not know if trying to list their names has any
point here, and I will most likely forget someone important. Over
the past weeks I have been working on sending them my gratitude,
individually, face to face when possible, or online.
Some conclusions
All of the experiences I had bring me to some conclusions:
What matters is not my work, skills, money or education. I do
not feel too much about these. It is nice what I did but... Meh.
Work is great and having a great job is awesome. I was lucky enough
to get to work with Mozilla and to have managers that I cannot
complain a single word about. It is not often people have such good
jobs. Nonetheless, work is just an activity that is part of keeping
your mind sane, to enjoy life. Your team makes work more enjoyable
or less so, it is not only about the projects.
It is the experiences and the people who touched my life and
helped me; it is the events and the accumulated life that made
these 27 years "better", worth it.
It is you who makes life better for others around
you. Yes, people are annoying and frustrating many times, but in
the end they also give life meaning and worth, a purpose.
In the end I feel like I did not do much for others. I received
a lot of love and help from others, gave little back. I lived a
life of fighting for myself. I always hoped that someday I will be
able to do more. I wanted to have a family, like anyone else, to do
things for my family, not just for myself. Love.
Writing this blog post is a minimal effort in this short time.
I hope others who read this silly lengthy article will ponder about
what they do, and maybe some time they will be better
prepared to make a more positive impact on others than
myself. That would be a huge win for everyone involved.
I still cannot point to the purpose of my life, which is kind
of sad. What was the sense of it all, but maybe having the answer
does not really matter as much as you would expect. I am sure that
the impact and importance of anyone's life cannot be estimated. Not
much point in being stressed about things you cannot ever know.
Nonetheless, I wish I knew what was the point of all the hardship…
Thank others for their help and support. Do not
take it for granted and never forget you cannot truly thank those
who have helped you most. Think about the person who helped you
most and what can you do for him? I cannot match what Mozilla did
for me, my family, the doctors and others. I cannot even match what
nurses did for me.
It is ironic for me to make such recommendations because if you
would have known me all of my life, you would think it's not truly
me. I did fail to do these things I am suggesting here. I was not
this "nice", as explained already, having a lot of health problems
I did not get enough peace to pay attention to such details. I was
focused on living, like an animal. It is only in the past years I
started learning the importance of such aspects. I am not a "new
person" or anything like that, but it is good to be aware of these
matters. They slowly change you.
All of these things I am writing about here lead me to suggest
ways you can make a change in the lives of others outside
your circles. Do not wait for anything. You can help
friends, your family and relatives, but I see a lot of value in
changing things far away from you. Do not focus only on "egoistic"
ways of helping.
There is some kind of egoism in helping others. It makes you feel
better, but it is a good kind, where everyone involved wins.
Choosing to help people you know is really difficult sometimes. You
know that the money you give may not be used as you believe they
should. You worry that the help you offer does not always reach the
intended outcome. You worry about what others think of your
gesture, others who probably feel they would need similar help. You
get into the politics of family, relatives and friends. At the end
it is easy to give up on making a meaningful and consistent
difference for others. These are the kind of things that I have
been thinking about lately. This is why I choose targeted donations
to medical research. You do not need the recognition or fame. Just
help with making the lives of others better. If you give all your
energy to someone, you cannot ever expect them to be able to thank
you properly. It is impossible. Do this only if you truly never
expect or care what happens after you help that person.
Think about making a donation for medical
research.
I would be very happy if you would donate money for EB research, but I
would be equally happy if you pick any other medical research center to
donate to. It is more important that you will be happier to have
made a positive impact, do not mind me.
Why EB research? Because EB research is going
quite well and there are clinical trials that will help future
patients with EB to avoid a lot of the hardships associated with
the condition. This condition is sufficiently understood nowadays
and researchers are at a point where they work on several
approaches for treating it, or to greatly reduce its impact. There
are cell therapy, protein therapy, genetic patching and other
approaches, each under testing in various stages and levels of
success. It will still take years before patients get such
treatments and they will not be magical. They will not fix
everything, but getting these available to them is essential to
improve the quality of their lives. For us a reduction of skin
fragility by any percentage would mean the difference between life
or death.
I recommend you read a paper that summarizes the current state of
EB research and where it is headed: Advances in
understanding and treating dystrophic epidermolysis bullosa by
Michael J Vanden Oever and Jakub Tolar, published in May 2014. EB
is a rare condition with a lucky situation: much easier to study
and understand compared to other conditions.
You should donate to help others get the treatments sooner.
This is the list of funds I trust for supporting EB
research:
The Sohana Research
Fund.
Debra UK and international.
The EB research partnership.
The Sohana Research Fund is in UK and I really appreciate how much
Sohana does for raising awareness about EB. Her impact on the world
is already quite important, having raised a lot of funds for
research. Thank you Sohana, keep it up!
I would suggest you think of making a donation once per year,
instead of buying a new phone or a new laptop, depending on how
often you change things. See if you regret the choice. Can you skip
an upgrade cycle every couple of updates? Pick any other device
that is similarly acceptable to continue using. This is the amount
you should donate. Think of the luxury you have. If you buy cars
like others buy smartphones, then skip buying a new car, donate
that money.
Medical research campaigns do not really go viral. We do not get a
ton of people donating $5. You should consider donating as
much as you are comfortable with.
Thank you very much for your time to read this article until here,
and even more so if you will go ahead with making a difference.
The above concludes the first part of the article. I wrote more
about the topics I touched upon in the previous sections, and I
feel they belong in a single page, even if the whole document is
quite lengthy. I have been suggested to split this part away,
however I believe everything here flows together and it is related
to how others have touched my life, for the better.
Please feel free to stop here, or go ahead if you want to know more
about my perspectives on the topics below.
This whole article is not trying to give you some brilliant advice
or ideas that were never heard before. It is mainly intended to
send some of my thoughts to the circle of people who I can reach
online. Thoughts that I hope will be positive.
Thank you.
On trust and choices
I did not trust much in the idea of making donations to anyone, to
any charity or organization. Here in Romania, at least, there is a
generalized mistrust in giving your money to anyone, unfortunately.
You do not know what the money is used for.
My answer to the problem of trust is that you should, indeed, never
give your money to anything you do not trust or care about. No
problem. However, you are the one responsible for finding
the organizations or causes you support and trust, if you
ever want to do something like this. I did this last year. My
experience in London taught me to appreciate the importance of
medical research and donating to support it. The St Thomas’
hospital in London relies on funds from various charities for a lot
of their EB research. They even had a dermatologist from Sydney
working with the team for the purpose of learning more about EB,
for one year, paid from the budget of a charity, from donations.
That's epic for me. I'm glad to have met doctor Susan Robertson and
to be her patient. She went back to Sydney and I am hoping her
additional experience will be of benefit for more EB patients.
I saw how much more support other charities get in London, like
Macmillan, compared to
what I was used to. It is a different culture of giving back,
unlike what I see back home. Not saying everyone in the UK is so
giving, but I think it is a result of a better quality of life
spanning more years than in Eastern Europe.
Mistrust blocks any chance to do or experience something good,
beautiful. You get stuck in a lack of action. If we do not trust
anyone how do we ever get any research done? How do we find love?
Make great friends?
A lot of medical research only happens through donations because
states and universities do not allocate too much funding for rare
conditions. Cancer surely gets a lot of funds, but we can prevent
EB patients from getting cancer by working on the main problem,
which is more tractable.
I am not saying you should not make a donation for cancer, far from
that. Actually please make your choice. Do not let your current
lack of trust and indecision prevent you from making donations.
Find a charity or organization you trust donating to - there are
trustworthy ones.
I would like to point out that, at least, Europeans and Americans
live in very good conditions that we take for granted too easily.
The majority of us afford basic health care, a modest job, more
than enough food (even if we complain about the quality), access to
information, transportation, travels, technology and entertainment
of many kinds. When was the human race so capable to provide such
high standards of living for so many people? We have so many
gadgets and we keep buying new ones as they come out.
On charities I would like to say one thing that
bothers me: far too common you see their websites and presentations
with too much pity and emotional content. Sad photos of EB patients
and wounds, dressings, etc. You are given the impression that EB
patients only know suffering and a life of hell, with no hope of
ever doing anything in their lives, except you should give them
money to help them live some more. Ironic and harsh. Why should
someone donate money for that? This kind of messaging drives people
away, and it even makes it too intense for any interested person to
learn more. Even myself I sometimes disable images in the browser
just to be able to focus on the content. If anyone wants photos and
videos of EB patients they should have a dedicated section. I am
not saying that showing others’ details of the condition is wrong.
We need photos and videos, but not straight in your face. This is
one reason why I do not show myself in public photos. Some feel too
much when they see me.
My previous comment applies to other conditions and it does not
apply to all EB charities either. Actually some EB related websites
are very well done.
Some families personally present their cases. In such situations
that is a lot more acceptable, because it is a personal choice. It
also takes great courage to go public and campaign for what you
want. I am weaker than that. :-)
My only gripe is with some charities that should encourage us to
donate to research and show us the potential of patients. We are
not limited to a world of pains.
I do not want this article to be a sad one, it may very well be,
but for different reasons. Making a donation is about
supporting a better life for future generations. It is
about helping today's children to reach a better potential sooner
and healthier. They all have a great potential to their lives.
It is also about giving purpose and more meaning to your
life, to touch others further away from yourself.
On love
This is probably the hardest part to write down, because it feels
like every girl I loved would deserve a whole section. :-) silly
me. I also do not want any of them to feel like X was "better" than
Y for some silly reasons. Each love is unique and it never truly
disappears. Each person is unique and special.
Like almost anyone I wanted a family, starting with a girlfriend
and all the normal things in life. Given the situation I am in,
this is obviously quite a task. Marius wrote an eBook on
being a person with disabilities which includes ample sections
about the problems we face in this kind of situations, in
relationships.
Over the years I met some special girls, both offline and online.
Each relationship failed for various reasons which I usually blame
on my condition, the typical scapegoat. Special thanks go to
Cristiana (lily), Corina, Livia, Alina and Claire.
These relationships failed before they even turned into anything
like a proper girlfriend and boyfriend thing. With Cristiana it was
just my first online-only thing, wanted more but nothing happened.
With Corina things were offline, neighbors, the thing ended when I
wanted more than a friend, but obviously the situation was more
complicated. With Livia, again we had a good friendship which ended
with a lot of suffering when I wanted more. Things were even more
complicated, with too many mistakes. With Alina I kept an online
friendship for almost 8 years before I had the courage to tell her
my feelings, lol. We only met face to face a couple of years ago,
when she came to Arad with her job for a short while.
Even with these unsuccessful relationships I feel it is much better
than nothing at all. There was something, with each person. I know
I will always be in their hearts. I know this sounds silly and
optimistic, but there is more than that. Surely their feelings do
not match mine, they cannot, because everyone feels things
differently. Having even this (small?) amount of love and these
experiences is really valuable.
I am going to focus a bit just on the latest special girl I met,
and there is a good reason for that: Claire. I met Claire
in November 2014, less than a week before I left the St
Thomas’ hospital. She was there in the same ward as myself, as a
patient, for several weeks. When I saw her a couple of times
walking downstairs I was pleasantly surprised to see another
patient there able to smile, to be gracious. She was obviously
going through hard times, but nothing mattered. It is rare to see
something like that. Someone else who is that strong. I was telling
a friend she was like an angel. It is silly, but so many patients
are disgruntled and sad in hospitals. She was different. I know
myself, I am smiling going into surgeries, I come out smiling,
except once when I was not feeling well enough. Seeing Claire she
reminded of my way of being.
Like in silly movies I asked one of the nurses for Claire's phone
number, so we met online and in the ward, and started to talk
almost daily. Met her again in January this year, at the same
hospital. Unfortunately, she continues to have her health issues.
Claire is a smart girl, she is pursuing a PhD in law and you can
have a very lively discussion on politics, economy, faith and other
topics with her. Did I mention she is kind? :-)
I do not want anyone to feel any kind of pity here. The point I am
trying to make here is that there are special people out there with
different medical conditions that need your support, and they make
the best out of their life. Claire does as well. She has Lupus and if
you want, please go ahead and make a donation to the
St Thomas' Lupus
trust from the St Thomas’ hospital in London, as per
her wish. She fully appreciates and supports the team working there
on Lupus.
Now I know you might wonder why I am suggesting people to donate
both to EB and Lupus research. I could avoid mentioning Claire and
Lupus, and just make a call to action here for EB research. I am
not trying to convince you here to pick a charity. Just go ahead
with making donations and supporting other causes.
I write here about Claire because it is the least I can do in her
honor. In these past weeks I have been thinking a lot about how I
can give back or show my love to the people I care about. This is
one way, for Claire. It is difficult when you want to help or do
something important, meaningful, for a special person and you
cannot find anything to do. I see this with others who would do
almost anything for me to get over this cancer. They feel
powerless. I feel powerless as well. I cannot help Claire and
others.
I feel that it would be egoistic to ask everyone here to simply
donate to the cause I care about. I did that too much in 27 years.
Now you choose if and how you touch others.
I also like the idea of having an impact in a completely unexpected
direction in this world. I never knew about Lupus until I met
Claire.
On faith
A topic closely related to love is faith and God. I want to mention
that we, Marius and myself, were typically the target of various
religious fanatics as we called them. Since early times they wanted
to show us the light and love of God and even, recently, that of
Allah (which is the same but not quite). What they initially
achieved was causing rejection from both of us.
My cousin Simon helped with explaining things on demand, not like a
spammer. To me belief in God starts with experiences, I cannot
believe what I hear or read.
From my experience I would say that there might be something out
there beyond human grasps that we cannot define, like afterlife and
deities. Religions are only attempts to explain these matters. To
claim there is only one truth is a big mistake. Humanity should not
take that much pride in what it does. I am only closest to God and
Catholic views because of social contexts, but this is not
necessarily the "best" or "worst" deity out there, whatever that
would mean.
On miracles I want to point out that too often
that we want things to just happen, like in movies. We do not
notice true miracles. The things me and Marius achieved were not
something one would rationally bet on happening. Small achievements
compared to what others have done, yet better than just a life of
EB. Less than 10 years ago you could have asked any doctor or
someone else to make an educated guess about us, and he would have
not picked anything like how things really turned out. Seemingly
impossible things can happen, even if there are very small chances.
You only need to try and to have courage, to persevere.
I have an amazing family, got to have a great job, met great
people, travelled to cool places, etc. Others do not get these,
even if they have similar or the same condition. Is it all a
coincidence or "little miracles"? I do not know, but I could have
had it much worse, and throughout the years I "dodged" death
perhaps more times than I can remember.
Even now, facing the prognosis I have, I cannot be
sure about it. Until the very end there is always a way. I am
entirely convinced that this cancer can be cured by today's
medicine, that is if we include the alternative medicine as well.
The only problem I face is finding the needle in the haystack. Very
few other patients in late stages of cancer seem to have
successfully overcome their illness, but none that I know of had
EB. Were those miracles or not? It is all within the realm of
humanity, but the actual finding is what makes it a miracle,
nailing that very small chance. The question is how many of these
"miracles" can one have in his lifetime? I cannot expect as many as
I wish.
When you hear that man is made in the image of God
you probably do not understand why. I see this with others, like my
mom. She did and continues to give her life for her children,
slowly, every day. Her sacrifices are like the symbolic sacrifice
of Jesus for the sins of humanity. We have that desire to sacrifice
ourselves for the ones we love. I would be so happy if my life
would be so meaningful to at least one person out there, if I could
have made a sacrifice for a higher purpose.
True love is about being there for the people you love, going
through joy or unhappiness, sacrifices. When I hear some lover
committed suicide because his partner decided to leave him it does
not really point to how much he loved her. Unfortunately, having
serious lifelong health problems such thoughts did cross my mind in
different circumstances. Ultimately, I believe we have only one
life to live, and we must make the best of it. If you abandon the
project, then you deny any chances of improvements. Once you stop
you cannot go back. I always hoped things will not be as bad as I
am told, or as I expected them. I was generally right. :-)
I mentioned in this article all the love and support I got from the
many people, which I really appreciate. I believe that the
cumulated love is actually God's love. Ultimately, I feel like
thanking him for all of this simply because it is all so much.
I could be very bitter about my untimely demise, but I am not. I
wonder why? My answer to that is probably all the love and
God have given me this peace. What more can I ask for when
the end comes? Peace is the most important thing at the end. You
could say it's my smartness and education, or whatever, that have
have brought me to this peace, but I do not believe that. You can
have smart and educated people going ballistic as well. It is
something more than education. Maybe Christian brainwashing almost
got me, lol. :-)
I want to recommended a movie on the topic of body and spiritual
healing that is very well made, seemingly boring, but full of
meaning: Lourdes
(2009). Enjoy it.
A common question is why do we suffer so much if there is
God and he loves us so much? It is the wrong question to
ask, I would say. If there is a God, he is not going to do things
how we imagine them in this reality. It is silly and limited. If
God is love then he must also be freedom. You cannot love someone
without giving them the freedom of choice. Freedom means anything
can happen, good or bad. Even if you know something bad can happen
you must allow your loved one the freedom to pick. You want freedom
from your parents to choose what is right or not. If you do not do
this, then it becomes a different kind of relationship. There is no
love in a dictatorship, even in a "good" dictatorship - where you
pick whatever happens with your loved ones and they do not get any
choice. This is the same with God's love: his love does not prevent
us from suffering, sickness, or from making bad choices for
ourselves. We have that freedom.
It is good to pray or to meditate, to take your mind off the
problems you have. You do not have to fully trust the deity you
pray to. That comes in time. Also do not expect answers to your
prayers as you want them. Things happen differently. I wanted the
end of the suffering we go through. I am getting to that end now,
but not exactly how I wanted.
As I wrote on Facebook in Romanian, in autumn 2014: you do not live
until you get to "die". If you do not get to miss life for a while,
you cannot really appreciate it.
I find the fear of death almost illogical. If you
like your life, or life in general, death is part of the process of
life. You must be prepared for it, and it will never be when you
expect it.
I do not fear death at all. I expected it will be an early one. I
am not happy to leave the things I like here, people, events, work,
etc. I am also enthusiastic about technical progress. There is so
much going on. I would like to see where we end up in 30 or more
years. Silly, I know. :-)
Afterlife is another concept many are bothered by.
There is no point to be worried about something that human
language, psychology, intellect, etc cannot even begin to grasp. As
such, I am waiting to see the afterlife peacefully, if there is
anything like that. The various religions and cultures try to
define this concept, deities and more, each with their own
qualities, but I feel they are just exercises of imagination and
human limitations.
I believe that faith starts with the courage to keep going
in spite of all the disappointments, fears and failures
you had or still have. How can you trust God if you fear death or
you worry about tomorrow's big exam? You must face hard times with
all the courage you can muster. That is faith.
It is silly how much time and energy people waste on anger
and other problems, including myself. We cheat, lie, play
games with each other, etc. We are mainly driven by
fear. We think about what is next and we choose to avoid
admitting feelings about the problems bothering us. We say half
truths, we hide. We just do not fully admit what bothers us to the
people around. Friendships, romantic relationships and families
break up because of poor communication.
Being too honest also makes it easier for people to dislike and
hurt you. It is a hard balance to keep between being yourself or
being nice. I know I was mostly too direct, easily annoyed people.
:-)
At the end I believe you do not really regret being
honest. Mainly you get disappointed by the things you do
wrong, the inexplicable complications that stem from
miscommunication.
We fear too much and we trust too little. When someone tells you
their own feelings the "best" option is to doubt him and make up
your own version. That is really the recipe for disaster.
There is a song that captures this idea really nicely: Jem -
Down to earth.
I am OK with all the people who did wrong by me, which is far fewer
than those who did good. Those who do wrong only do it as a
reflection or result of their fears, lack of trust and own
problems.
I think having serious problems of any kind makes us more
like animals. I have seen this with myself. It is much
harder to be nice, educated, and considerate under the stress of
pains, failures and frustrations. Survival mode kicks in quite
subtly actually.
We compete and hurt others for little gains so often that we do not
notice. We hear people say things and make
assumptions. It is ridiculous how many times people assume
I always like what Marius does, or often people think "you can't do
that, right?" I see this in the technical world as well: just send
an email to a technical mailing list and you will see replies from
people who do not entirely read your message, or misinterpret what
you write. Too many assumptions.
On technology
I will be abrupt here:
no, the Internet did not fail. I read this article a long time
ago and I still remember it. While I agree with the main points of
the article, I consider my life an example of the amazingly
positive impact of technology and the Internet. All of the
miserable problems with the tech industry are minor compared to the
improvements technology brings to the human quality of life.
Without the Internet I could not have done what I did.
The latest example I have is with smart phones. I was a naysayer. I
always used a PC, never a phone more than 5 minutes. I also was not
much of a mobile person, staying at home most of the time anyway.
Last year in March the bank I used started requiring a token device
for authentication, or a phone. I could not use the token, but they
were kind enough to offer me a pretty good smart phone (thank you
very much Anda Dărăban). That was my first phone that I actually
used. I used it in the hospital in Hungary, then in London and so
on. My left arm was not usable for many months, it is not usable
now either due to the tumors and surgeries. I never expected that
technology on these otherwise addictive gadgets was so accessible
to me. I can type this article easily on my phone, I do not mind
not being able to use a keyboard anymore. How is this not a great
achievement of all the work that the tech industry has put in? It
is all for commercial interests, I know, but we easily forget about
what these things enable us to do. Countless patients in hospitals
and other people in difficult times come to rely on technology that
was not available a few years ago, making all the difference in the
world for them. I would have suffered a lot more in hospitals and
back home now, and last year after the surgery, without being able
to stay in touch with the people I know from home, work and others.
This is also an example of how a simple gesture of help makes a
huge impact. I did not expect, neither Anda did, that this phone
would be so useful for me in such hard times.
Proud to be a Șucan
I cannot end this article without saying a few words about the
people who did everything they could for me, my family.
Mom's sacrifices are endless and tireless. Me and Marius, in silly
attempts at being funny, we call mom RoboCop, for her tireless
energy, she is unstoppable. We call her many things including
things she has to forgive, during stressful and angry times. She
forgives, loves and moves on. She was and she will always be our
guardian angel.
I specifically want to recognize mom's ability to overcome her
limitations. Born in a remote village that not very long ago got
electricity, she learned to accept new things, to travel to places
she never expected, to do things that she believed are nearly
impossible. She did and continues to do everything for us, for
love.
Almost everybody loves their mom, but if there would be a kind of
contest I am certain my mom would be among the winners, simply
because not everyone would be able to do what she did, objectively.
Not every mom is equal to other moms.
If there are saints and angels mom would be one of them, or she is
closest to being one. She always does things for the benefit of the
other, never for herself. She takes the lesser half of a plate, for
example, even when splitting with strangers. She even gives it all.
I wish I could be a quarter as kind as her. Today I would not feel
like I did not help others much.
Dad, similarly, is a strong character who never ever gives up and
fights for us, with his own qualities and personality.
My twin, Marius, has always
made images representing his feelings, which is much more valuable
than trying to be nice and fit in some contemporary art and style
that people like right now. His work and its impact have a value
that will outlive mine, and that makes me happy.
Alex, my older brother, did
everything he was able to with helping us as well, more than he
notices. His education and level of technical expertise is epic and
his impact in robotics is going to be larger than he expects. I
wish I could get to see where robotics will get to, and that will
include a Șucan. :-) His success was always a model for me and
Marius.
Proud of my parents and brothers. Thank you all.
I will end this with thanks everyone for their love and support.
Thank you God.
PS. Now go touch the world a bit by making a
donation to medical research,
EB and / or Lupus research.
Cheer yourself up! :-)