Words from my brother Jeff...

My brother Jeff posted this on the Cystic-L web board in December of 2006:

Just wondering what people think of this term... [Mild CF] Personally I hate it ! How can an affliction that causes death every time ever be considered Mild? I never hear anyone say, well you only had "Mild Cancer" to a cancer survivor.

My sister was always worse than me from the lung perspective but I have lived with the complications much longer than she ever did. Is my pain and suffering less because I did not go down hill as fast ? I still do the same treatments as everyone else. I have had the same types of exacerbations and have dealt with the same bugs and infections, I just
seem to have recovered better after each one, probably due to the advances in care.

However people (including some doctors at CF clinics) say well you just have a mild form. I can't work full time now mainly because I did not get the respect and support from my clinic and the Foundation I needed when dealing with my employer and Union. My clinic Dr. at the time said "I don't have time to write letters as I have patients with "REAL" problems that require my time and attention". I am now on gov’t assistance and put 100% of my time and effort into care and exercise to maintain my PFT's, however I never hear – “You must be doing so well because of your efforts or hard work” - no I hear "aren't you so lucky you have a mild case". This makes me feel that my efforts have no value and therefore with no job, like I have no value. Needless to say I moved from this prominent and respected Toronto clinic because I did not feel they were taking me or my care seriously until I was at a certain low # for my Pft's.

I gained some self respect back this year when my Part Time employer of 5 years promoted me for my professional conduct and abilities despite the obvious physical limitations that I have in a very physically demanding job. I keep thinking how different it could have been over the last 10 years if I had this kind of support and encouragement from that Doctor in T.O. Not to mention that I would be making much more money and would not have been marginalised to the fringes of society by others prejudice of what I  do or do not deserve, or could or could not do. So here I am at 45 wondering what it means ... Do I have "MiLD CF"... or am I a CF survivor of 45 years... and should I have to put along list of cf complications at the bottom of my posts as some sort of badge of honor to get the respect that I already know now is deserved.

This was Jeff’s response to the many emails he received in reply to his posting:

WOW I guess I touched a nerve or 20... Thank you for your posts and emails I wanted some perspective and I sure got many. As my mother was fond of saying to me growing up "Be careful what you ask for, you just might get it"!!!

"We see things not as they are, but as we are."

Everyone has there own perspective, we all look at life through our own lens. My sister reminded me of this the other day in regard to a personal slight that I perceived my brother made against me in the spring . I used the post to elicit a response here to give me a different view on the situation and the world around me. I purposely left out details to try and not cloud the issue, and only gave you a few details to try and frame the context.

Let me try and explain with a Metaphor :

Many people have cameras today. Some carry them everywhere and never take any pictures, they always miss the right shot because they were not ready. Others only take theirs out at a special time of year, so they will only have happy memories in their shots in the future. Many like to take landscape views so they can admire the wondrous view of nature in all its glory. Still others want a Macro view of a flower as it is pollinated by a bee... One thing for sure, If you want to take good pictures you need to clean your lens every now and then 'cause it's going to get dirty if you take it out of the camera bag. Occasionally you need to take apart the whole camera and spend a lot of time and effort on the small parts that make it work.

I used to go through life in a hurry trying to get everything done in the short time I was told I would have. Not looking up for a second and focusing only on the road ahead and not checking my blind spot... Sure enough I got blindsided. Then I went out and got a rose colored filter. It made me feel better looking at the world from this perspective, everything was great and I was doing good physically. Had a good job and thought I had it made, Life couldn’t get much better. Until someone broke my favorite Lens. This lenswas expensive and I had worked very hard and long to get it, I was devastated and got very depressed. I did not even want to go out because it was too sunny, or too cloudy, or too rainy, things just did not seem to look right anymore. All I had was the pictures of my perfect life that I did not have anymore. I got more depressed the
more I looked at all those perfect pictures of happy times.

Then someone said: You know you take wonderful pictures, Would you take some for me? I can't, I said I don't have my special lens. That’s OK he told me, I just want black and white photos. So out I went with my limited abilities and took the pictures. Only when I had them developed did I see the effect of the light and shadows on the subject and realized that there can still be wonderful pictures even without color. Now I wanted to go out and explore the shadows and learn how to use the light to my best advantage. Someone then asked me. How do you take such good photos with that old beat up camera? I wish I could do that! I could teach you I
said, but it will take time and you must give it everything you have in you. You will also have to go places that scare you to get just the right angle and it's very important to have a clean lens to get a good picture. As I coached and watched him grow I saw things that I could not see from
behind the camera and learned from watching him, I also had the time to clean my camera. With a clean camera and what I had learned, I realized that I could do things other people thought impossible but that did not make it any easier to do them.

To get a picture from the top of a mountain you still have to work hard to get there and sometimes when you get home the picture does not do justice to the effort to get it. However sometimes it is the experience of the Journey itself that we find the excitement and reward. Just think, if I still had that rose colored lens I would not have learned to use the shadows and would still have a colored view of life.

Perhaps it is now time to get a new lens, but I still can't throw away the old one that has served me so well and taught me so many good lessons. I guess sometimes when you change your perspective and clean your camera you need a new lens so that you can create an even better picture of the entire landscape.

Thank you to all who responded to my post - for the new lens with a wider angle. Do I think my CF is Mild ... Absolutely not, I would say it is Stable for now! and I'm preparing myself for my new Journey. Manager of a Whitewater rafting Co. on the Ottawa River next summer...Not bad for
45eh !!! I hope you all have a good holiday and get what you need for Christmas... I already have...perspective...again with your help.

P.S. Anyone else been called an Enigma ???

Jeff Summerhayes 45yoCF survivor