My daughter will marry her boyfriend in June, in part thanks to this miraculous leap. It's hard to take it in, it's so far beyond any expectation. The fact that they can see a life, a family, ahead, and that there are days when I just take that for granted … tears. — Heidi, Massachusetts I understand the tone of this article. My daughter is 27. She has CF. I won't speak for her. But as her mother, I know that I am having to rethink how I relate to someone I care about whose expectations of the future have been dramatically altered in a short time. I know what it's like to navigate what others now expect of her now that a so-called miracle drug is giving her a shot at a longer life. Trikafta is not a cure. It helps a lot but doesn't fix every problem that CF causes. The disease is very complicated and damages more than one's lungs. If you or a loved one has it, you know that I'm referring to even more than the patient's physical health. Our society places far too much on the psyche of patients who deal with terrible diseases like CF. They not only have to suffer but they also have to be brave, noble warriors. What then when the war is over and you've won? I appreciate the author for bringing this subject to New York Times readers. — Amy, Dallas In 1993, my partner was diagnosed with AIDS and I learned I was H.I.V. positive. I was told I had three years to live. We spent a lot of money that I had saved from my career as a lawyer. He died in 1995. I assumed that I was soon to follow. However, in 1996, a new class of drugs (protease inhibitors) was released, and people with H.I.V. stopped dying. My doctor told me, after a year on the new medication, "Well, looks like you're going to be around for a while." Talk about being bewildered! I went back to school and changed careers. It's been 30 years now … and I refer to that time as my "first life." As I approach age 70, I'm in good health and so are my finances. Thankfully. I learned many things from my first life, and one of them was to live fully, in the moment, because life is a crapshoot. Some win, and some (like my partner, who wasn't able to hold on for those new drugs) lose. — J.C., Rancho Mirage, Calif. |
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