I'm all for this dissemination of information - giving a lecture to a college class is an awesome way to raise awareness of this disease and hopefully the 20, or 35, or 120 people who are in the classroom will take away even a <i>small</i> something about this disease....
That being said, here is my perspective as a wife of a CFer:
- having to avoid all chances of encountering secondhand smoke (we wait in the car until there is a break in smokers outside of a movie theatre; crossing the street and taking a longer route to avoid a sidewalk with a group of smokers; waiting forever inside a sporting event way past the end of the game so that the streets/parking lots outside are nearly empty of event attendees are who are lighting up after the game; not attending music concerts/bands that my husband would LOVE to go to because it is a smoking venue; missing certain events because they are outdoors and we can't control the smokers in attendance; etc)
I teach 7th grade and I tell all of my students at the end of the year that one day they will all be faced with the decision of whether to smoke or not, and even if they feel that it's their own body and screw everyone else, please remember my husband & the fact that just walking near a lit cigarette can cause him to cough up blood the next morning... not a fair choice in society in my opinion.
- time lost to hundreds of multi-week hospital stays over his 30-year lifetime... on average he is inpatient 3 - 4 times a year for 14-20 days each, that's 42- 80 days per year. Are those days helping him to stay alive longer? Yes, of course. Does it make them suck anyless while enduring them? Not really. Especially as a child, he remembers the intense feelings of missing out on birthday parties, school events, movies, feeling even more different than everyone else, etc.
- as an adult issue, causes you to approach parenting in a different light. Just choosing to parent at all is a huge, intense, soul-searching decision because of earlier end-of-life issues and the debate of fairness or unfairness to innocent children of losing their father, whether biological or adopted. If an adult CFer chooses with their significant other to parent, then they must face alternative, more expensive routes to achieving this... such as IVF or adoption.
- choosing a career path knowing your limitations from CF. It was a hard road to finish college, and grad school for my husband. Not because of his brain power, on the contrary, he scored at the top of his classes. Because of his body wearing out at the most inopportune times, such as during a clinical rotation (he is a Physical Therapist) or having an episode of hemoptysis the week before final exams.
- not going on vacations we would like to because either a) we have to save up his sick days/vacation days for hospital stays or unanticipated health emergencies or b) the vacation could put us in uncontrollable smoking environments
Just to remind myself, I looked up Webster's definition of <b>"restriction"= to confine within limits. </b> I believe that is what I have tried to list, not even in its entirety, above. Life situations that CF has caused us to confine within limits. It angers me sometimes, rarely to the point of bitterness. However, like all restrictions in this world, you adjust to them and they become 2nd nature.
One thing I hope your friend is very clear on though, in his/her college speech, is that CF <i>cannot and will not restrict certain things in our lives though</i> - the love which seeps from every pore of my husband's body is not diminished one iota by this disease. Our marriage is strong, honest, and faithful, perhaps even made more so because of this disease. The clarity with which we see our love is not made less by sleeping by his side in the hospital bed night after night.
I wish your friend the best of luck in their speech & I hope the awareness of CF will one day reach the status of AIDS or cancer.
