Hal Soloff was, at the time of his death at age 84, one of the oldest survivors of cystic fibrosis. He and I wrote back and forth at times on various subjects: parenting, politics, and life. Here is one of my writings from Hal in 2010, shared with his permission:
In response to a note from a mom of a little boy with CF who is sad and distressed about his diagnosis, Hal responds. Hal is an amazing man who is nearly 80 years old with cystic fibrosis. He is truly one of the smartest, wisest, and spunkiest people I know. He inspires me with his wisdom, wit, and grit.
Professionally, Hal was a lawyer and a constitutional law professor for nearly thirty years. He has two adopted children and recently lost his beautiful and beloved bride of 53+ years to pancreatic cancer. If anyone has been around the block in life, it's Hal.
These writings are two different posts and I hope you are as inspired and encouraged by them as I am. Lisa
Dear CF Parents,
It's a different world than the one I grew up in, but frankly, people have changed very little. At any rate, I've lived with CF a very long time for people with the disease, and have had to follow the same regimen that most people, young or old, have to follow when they have the disease.
So, if age and education don't mean much, how about experience? From sulfur tablets that made me break out in a rash (1945), through penicillin that was mixed with wax (1947) so it would slowly dissolve that was administered in my rump, to almost all the rest of the antibiotics, till now, when I have an antibiotic resistant bacteria in my lungs slowly chewing away. I've had IVs galore, sinus surgeries, and hospitalizations, so I've been there, done that.
That gets me to my point: different people react to a crisis in different ways. It would be wonderful if every parent, when told that their child had CF, could be stoic and handle it with determination and hope. Doing otherwise is counterproductive, both to the parent and child, but that's not an infrequent reaction.
Some of you take CF as a death sentence, forgetting, the child has been given a life sentence. Whether its many days, months and years, take them one at a time, and make the best of them. Teach a child to see things in the clouds, to be happy the sun is out, that above all, there are those who love them.
Give them something they can excel at or at least be good at. I started playing the drumswhen I was ten, and the exercise was wonderful. When I went off to Northwestern, I was in the marching band. Every day, after my classes and before band practice, I went to the infirmary and got my shot. Late at night, I flushed my sinuses, so no one would see me. My doctor had taught me how to live the best I could with CF. That's a parent's responsibility to their child, rather than telegraphing anxiety.
A child with the burden of CF has to overcome their fear by feeling good about them self, even if it's drawing stick people. I used to visit children with CF who were in the final stages of the disease, to try to keep them as upbeat as possible. Some parents would stand in my presence and smoke, others would continually cry. What kind of environment is that for a child?
You don't have to fool a child into thinking CF is just another problem, but please don't make it the focus of their life. Help them with their studies, and don't be afraid if they mingle with other kids... that's good for mental and physical health, especially to build up their immune system. If they are continually reminded that they are different, that will be a problem the rest of their life.
Expect good grades and chores around the house as they mature. I started off on the high school boxing team weighing 86 pounds. By the time I had finished fighting in the Golden Gloves, I weighed over 100. It was good to build my self-esteem, and eat only the most nourishing food. (I lost in the finals...oh well). This is long, per usual, but it's my way of saying, take it from me, there's a world out there for people with CF. Longevity is not the only thing... living life is. Hal
Dear CF Parents,
None of us, with or without CF, have an expiration date stamped somewhere on our body, as there is on food products. There are too many variables. Some people with CF have shorter lives than others who don't have CF; that glass is half empty. Some people with CF live longer than other people who don't have CF; and that glass is half full. Statistics are just a way of putting a number on people. And while it may be helpful for medical professionals, researchers, and fundraising, it can be frightening for people living with the disease.
I'm 79 3/4 years old, and I have CF. I have had many salt tests, two DNA studies, and volunteered for exploratory surgery. My sister died of complications from CF at age twenty. She was married, got pregnant a year later, and got terrible medical care and advice. As I was eight years older, you can imagine the grief I suffered, as there was nothing I could do for my kid sister.
One of the differences was I have always gotten excellent medical care, and have been an advocate for myself. I have fired more CF doctors than Donald Trump has fired contestants on his TV show. Take charge for your child now, until the time comes when he can do it for himself. Expect the best, and clear, uncomplicated information and instructions from your CF doctor.
My rule, whether it's a doctor, insurance salesman, car dealer, whatever...ask a question...if they answer, and you don't understand what they are saying, ask the same question again. If you still don't understand the answer, it's not your fault, it's theirs.
Though it's very difficult at times, try not to transfer your anxieties to your child. Children with CF have to be sure of themselves, and not feel so pampered they can never take care of themselves. Simply put, whatever it takes, it has to be done, and not worry about how long life may be.
When I was first diagnosed, my inhalation machine was the size of a credenza, and I had to go to the doctor's office every day (including Sundays) to use it. That meant, after school, and during vacations. Now, my Pari can fit in my coat pocket.
I've traveled much of the world with it. There are a lot of people on CF Parents who are there for you, and though we might be thousands of miles apart, we're all neighbors, and we will gladly throw you a life preserver. In my present state of health, and having lived a long, amazing life, I have come to terms with my mortality. When your son is my age, I hope he can say the same thing. Hal
Reprinted with permission from Hal Soloff. Compiled by Lisa C. Greene, mom of two kids with CF and author. www.TipsForCFParents.com
More about Hal: Harold A. Soloff April 9, 1931 - September 23, 2013 NORWICH - Harold (Hal) A. Soloff, died peacefully at his home on Monday after a life-long courageous battle with Cystic Fibrosis which he was diagnosed with at age 28. He was one of the oldest survivors of the disease. He was born on April 9, 1931 in Norwich to the late Simon and Bessie (Bruckner) Soloff. Hal left college to enlist in the US Air Force during the Korean War and served until his Honorable Discharge. He returned to attend law school and earned his doctorate degree from the University of Tennessee. Hal taught at Norwich Free Academy for 25 years, and at the graduate level at Connecticut College for 13 years. Hal was predeceased by his wife and best friend, of over 53 years, Phyllis (Bernstein) in 2009. Hal and Phyllis traveled extensively throughout the United States, Europe, Canada and the Caribbean. Hal is survived by his son David of New York, his daughter Jennifer and her husband Eric Hu of Hawaii and his goddaughter Stacy Gould of Norwich. He is also survived by his brother and sister in law Stephen and Barbara Berns, his niece Debra Berns, his nephew Mark Berns and his wife Sol, his niece Karen Whipple and her husband Richard and their daughters Ashley and Brittany. A Graveside Service with Military Honors will be held on Sunday at noon at IOBA Cemetery, Lois St., Norwich, CT. Shiva will be observed at his home, 20 Cherry Hill Road, Norwich on Sunday following the service and Monday evening from 6:30 to 9:00. Donations in Hal's memory may be made to the Cystic Fibrosis Research, Inc., 2672 Bayshore Parkway, Mountain View, CA 94043.