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