PERSONAL EXPERIENCE:
Living and Singing with CF:
A Personal System of Health
Indigoblue
"Because love
is such a force if we find ourselves in it".
Sting
My name is Indigoblue, a New York based singer-songwriter
and painter with CF diagnosed at two years old. I was born
in Puebla, Mexico in 1970. Since I was a child I felt a
strong attraction towards the arts, especially music and
painting, to which I am now fully devoted.
"…even
as a baby I liked to immitate birdsong!"
I had my first musical instrument at 7: a drum-set made
out of card-board cylindrical containers found in the repair-shop
of the textile mill my father worked at. I also remember
'singing' and dancing to music of such artists such as Donna
Summer and other latin singers that were among my family's
collection. I was also told that even as a baby I liked
to immitate birdsong! At this young age I had no idea of
the importance that singing was going to have in my life,
nor the tremendous challenges I was going to face as a singer
with CF.
Before moving to N.Y. back in 1999 I was involved in some
musical experiences and education, but it was not until
then that I discovered singing as my central way of expression:
the true manifestation of my very purpose in life.
This discovery had a profound effect on my life at all
levels. I felt anxious and worried at first. I worried that
CF could pose a threat to the possibility of becoming an
accomplished singer. I didn't really know to what extent
it could limit this realization, and also I hadn't yet discovered
a good technique that would allow me to make a better use
of air whilst singing.
At this time I met a wonderful person: a multi-talented
singer-songwriter and healer born in Portugal named Marie
Afonso. Through Marie's method I learned about the importance
of the physical and breathing aspects of voice training,
as well as the mental and spiritual dimensions of it. I
started a regular, systematic and profound training with
a strong emphasis on breathing techniques that since then
have also helped me tremendouly, particularly with reference
to CF.
"…my
"personal system" of health."
It was also around this time that I started to be and feel
really in control of my condition, thanks to the combination
of habits that integrate into what I now call: my "personal
system" of health.
Personal, concrete elements of this 'system' can work for
everyone dealing with CF. Some of the most relevant of these
practices are diet, schedule, CF care, Raja Yoga, aerobic
physical exercise, personal life, mental attitude, and what
I believe is at the center of all this: Doing what we truly
love.
I will now explain a little bit about each of these areas,
all of which I feel are relevant for us as people with CF:
Diet
I follow a vegetarian diet that includes eggs and dairy
products. It has helped me feel and perform better in everything
I do (even sleeping !). Proper diet is a very individual
issue that has to do with things such as sex, weather, type
and level of activity and of course...taste. What's really
important is the nutritional value of the food we take,
rather than which type. Advice from a nutritionist to suit
specific needs is a must, especially because with CF we
need knowledge on how to substitute certain foods for others
so at the end we have a good nutrition. Carbohydrates and
dairy products are very important. Carbohydrates seem to
produce the opposite of oxygen during the digestive process.
My doctor also explained to me that dairy products such
as yogurt tend to produce more mucus both in the digestive
and respiratory systems. I found this to be true for me
but may not be so for all of us.
Schedule
CF tends to wear me out. It steals so much energy from
me that sometimes I feel exhausted even before doing anything
else. That's why my habits are important. This way I can
gain the most out of them. Schedule is very important because
I feel that the energy of the rising Sun and morning as
well as the air quality at this time of the day is considerably
different. I used to be a 'night person' but not anymore.
Since I started training seriously I need better energy
and mood for each thing I do. This I have found by 'going
with the Sun'.
CF Care
At this point I'm pretty sure we have all probably become
'experts' on this subject. I try to be very aggressive towards
it both with my everyday treatments and the ones I need
when these are not enough (when infections appear, etc).
Prevention I find the most helpful tool by doing everything
I can to avoid more serious problems.
Raja Yoga
I have been practicing Hatha Yoga postures, breathing techniques
and meditation (the combination of which is called Raja
Yoga) for almost 3 years now. Because of its emphasis on
stretching and breathing (in Yoga there is a science of
breathing !) it is an excellent tool for me. I find it is
also great on a mental and spiritual level by helping me
to practice with a clearer and more concentrated mind as
well as promoting inner-peace.
"…people
in general do not know how to use and utilize all of their
lung capacity."
A very important aspect of what I've learned through Yogic
breathing techniques is that people in general do not know
how to use and utilize all of their lung capacity. So when
we learn to do so, even people with CF can use all they
have, as opposed to a small portion of it. We can maximize
beyond the limitations we have adapted to. For some people
with CF this could even result in moving more air than a
person without CF!
Physical Aerobic Exercise
Swimming is the one I strongly recommend. I have been doing
it for 7 years now and this has been helping me in many
ways, particularly in keeping good pft's (lung capacity
scores). As with any other exercise, I take it little by
little by listening to myself and never pushing beyond my
capacity. Swimming in combinations of both distance and
style series makes it effective and interesting at the same
time. I swim 3 times a week, usually for about an hour and
a half, taking breaks if I need to. My purpose is not to
break records but to get in an overall good shape, clean
and expand my lungs and...enjoy it! I hope you are able
to do the same.
Mental Attitute
I truly believe this to be one of the most important factors
when dealing with CF (and indeed any problem). The first
thing I find useful is not to take problems personally but
as something that is part of life and my life in particular.
There's a tremendous difference between identifying myself
with my problems and putting them in perspective. It is
not the same to say : "I am the problem" as "I
have this problem."
When I was I child a lot seemed to revolve around CF, more
than necessary. This made me confused. This made the difference
between me having CF and CF having me. When I started singing
for example, this mental issue was reversed because I no
longer was identified so much with CF but with my main activity.
Its like the Sun and the planets: The Sun brings unity,
harmony, life and direction to them. It gives them their
proper place in The System. Likewise, when we discover our
true purpose in life something very similar happens: Our
"Sun" puts things in order and perspective, it
becomes our source of unity, harmony, direction and the
very important motivation we need to move on and succesfully
cope with problems such as ours.
"…have
a reason and will to live in the first place."
Before I began singing I didn't have this 'extra' power.
If it wasn't for this motivation I couldn't do everything
I do to maintain my health. That's why I believe that even
though we may have good means to fight CF we need this 'extra'
motivation to work hard enough and make good use of them.
We need this 'Sun' in our lives so we have a reason and
will to live in the first place. A sense of self-realization
that will empower us so we can keep on top of CF. I have
found this source in singing.
Finally, I honestly wish that these words inspire you to
learn, experiment , discover and apply similar or different
habits and/or ideas as the ones shared above that lead to
your own 'system' or 'formula' of well-being with CF.
"Let us never
let CF become the 'Sun' of our planets…"
Let us never let CF become the 'Sun' of our planets but
only what it is: a planet within 'our system' which we can
(and be working towards) de-emphasize by means of discipline,
work and perseverance.
Be well. Peace.
Indigoblue
New York
indigoblue0070@hotmail.com.
Editor's Note: Thank you Indigoblue for sharing your lifestyle
and routine in such a clear and inspiring way. You have
described your 'system' as only a song-writer could and
I'm sure many of us will aspire to think about or continue
our own ongoing 'systems' within each of our individual
capabilities.
If anyone else would like to share their philosophy to
life with CF (letter or article) perhaps you could write
to us for a future issue, to editor@iacfa.org
