Andy Lipman's Blog, page 2

Celebrating Life; Not Its Limits: A World without Median Life Expectancy

I am one of the very few CF warriors/dinosaurs to be born in the early 1970’s who is still alive to tell my story – a story back then filled with flyers, TV commercials and posters that predicted how many years that I would live. . . and what’s worse is these same materials were witnessed by my classmates, my parents and other parents with CF children. One such example was an article from the 1970’s featuring a little girl in the picture with her face just outside of a pool of water trying to catch her breath with the caption: “Cystic Fibrosis is like drowning on the inside.”

These CF promotional tools were used to fundraise and therefore the bleakness of living with the disease was on full display for everyone because organizations needed potential donors to understand the urgency required to find a cure for CF. Still, the impact these materials had on people like me was that we quickly realized that we were not like anybody else. Worse, we weren’t going to live as long as anybody else.

For me, the elephant in the room growing up was always how long was I going to live. My peers asked when I was going to die. Books about those with CF were often written by the parent because the child did not live long enough to write the book in its entirety. A CF parent was never someone with CF who had children but rather a parent who had CF children. It has always been common for adults to ask children what they wanted to do when they grew up. I heard “cowboy, doctor, soldier, etc. . . ., but for me and many others like me, it was simply “I just want to grow up” because the prospect of living beyond my teens seemed implausible. It is difficult to celebrate life when the life you inherit has limits.

I am now 49 years old and a board member, a fundraiser and an absolute admirer of organizations who fight for those of us with cystic fibrosis in order to bring about positive change. In the past few decades, organizations have worked hard to bring scientific breakthroughs, to allow financial flexibility for patients and their families and have become outlets for emotional wellbeing. During that same time, various organizations have measured their success by one number in particular. . . the median life expectancy of cystic fibrosis patients.

While that statistic has been a critical measuring stick for those working at organizations helping to fight cystic fibrosis, it has also become a traumatizing statistic for anyone whose family is affected by the disease. When I was about ten years old, I unintentionally found the term cystic fibrosis in the encyclopedia and learned my life expectancy then was 25 years. Later, I would learn that it was only 16 years when I was born. While some would say a nine-year increase in 10 years is miraculous, all I could see was a shortened life with a limited number of dreams and that led me to dealing with a lifetime of severe anxiety and clinical depression. Again, how can one celebrate a life with limits?

As a CF adult, I have learned to use life expectancies and bleak prognoses as motivation to keep fighting but as a child those statistics absolutely haunted me. I believe it is time to stop publishing and harping on life expectancies for those of us with this disease.

The year is now 2023 and times have changed. People are living longer thanks to medical breakthroughs, CF parents can now actually be a parent with cystic fibrosis and when someone with this disease is asked what they want to do when they grow up, they can actually pick whatever profession they want without the concern that they won’t live that long.

There is still plenty of work to do in the cystic fibrosis community as many patients and their families have difficulty affording insurance to cover their meds and hospital stays, a small portion of the population is still without a CFTR modulator that can help them and the entire community still awaits a cure for cystic fibrosis.

While we continue to focus on fighting these physical symptoms of the disease, it’s very important that we transform the mental outlook to ease the pressure of battling CF.

It’s time we stop concerning ourselves with how long we are supposed to live and rather grade ourselves on how we live with however much time we are blessed to receive.

It’s time to celebrate life; not its limits.

Live your dreams and love your life,
Andy

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Dylan Mortimer’s Cover Art for CF Warrior Project Vol 2 Book

I am proud to announce that volume 2 of The CF Warrior Project is releasing in February, with preorders starting in the coming week. This second book in the series celebrates not only the lives of people who live with the life-changing diagnosis of cystic fibrosis but also those who have made a difference in the CF community by advocating for those of us who fight the disease.

Today, I wanted to reveal the book cover that features compelling original art by distinguished artist Dylan Mortimer, who is a CF Warrior and is featured in my book. I am so honored that Dylan chose to lend his beautiful, riveting work to help tell the stories of the cystic fibrosis community as we battle for a cure found. Thank you, Dylan. You can learn about Dylan’s art at www.dylanmortimer.com or by following him on Instagram at @dylan.mortimer.

You’ll see more from me about the new book in the coming weeks!

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Missing My Mom… But Not Her Message

“Am I going to die?”

Those were the words I asked my mother on several occasions either when I read something negative about cystic fibrosis, when I was battling a lung infection or when kids ridiculed me in grammar school because of my disease. Mom always said, “You just have to keep fighting.” I never imagined that our roles would eventually reverse.

I lived a pretty ordinary life outside of using a nebulizer every morning, having my parents do postural drainage (cupping their hands and hitting my chest, sides and back to loosen the mucus in my lungs) and taking enzymes with meals. When I was sick, we often doubled up and did treatments at night. It was up to me to remember to bring my enzymes but Mom often had an extra stash in her purse to help her forgetful son.

Eva Lipman was an amazing mother. She comforted me when I was scared and pumped me up when I needed to fight. She told doctors that I didn’t need to hear so much about the limitations of cystic fibrosis because it wasn’t something that should define me nor inhibit me from living my life.

As we celebrate Mother’s Day this Sunday, I think of two women primarily. My wife Andrea who is an amazing mother to our two children and my best friend and my mother Eva who often fought for me like very few mothers could. There is something special about a CF Mom. My mom (and my dad) raised me with such strength. They lost their daughter Wendy to cystic fibrosis three years before having me. Wendy had only one photo taken of her, never left the hospital and lived only 16 days. It was a lot to bear for my parents especially my mom who carried her for nine months. Mom visited Wendy’s grave every year on her birthday where she left flowers and a stuffed animal.

As I grew up, Mom was often the caretaker and I was the patient. That is until August 28, 2020.

“Andy, just calling to say I love you. Still not in the room but I’m about to get there eventually. So go to sleep. Watching the Braves game so I can feel like I’m at home. Tell the kids I said hello and Andrea everything. Bye.”

This voicemail from my mom still sits in my current voicemails and I listen to it very often. This Sunday will be no different.

Mom’s first night in the hospital was August 28th. She was in and out until we got the diagnosis on September 11, 2020 (the worst September 11th that our family would endure). Mom was diagnosed with stage 4 T-Cell lymphoma, an extremely aggressive form of cancer per the physician.

We weren’t able to get in to see Mom until we got the diagnosis. COVID was just in the early stages so hospitals were very restrictive as far as letting anyone in besides physicians and staff. We were finally able to get into see Mom the following day as she received her diagnosis. Mom looked at us after getting the news and at the doctor and asked, “Am I going to die?” Those same five words I’d often asked my mother with regards to my disease. Mom never blinked then and so I didn’t blink this time. “Mom, you’ve got this,” I told her, though I myself knew that this cancer was probably going to take her life the same way cystic fibrosis might eventually take mine. I thought we had more time though. I did. Mom’s doctor didn’t though; however, she was kind enough to wait to tell us until after Mom’s journey ended. “I didn’t think she’d make it a week.” Mom made it TEN.

My biggest regret is that I didn’t have many personal conversations with Mom at the end. I wasn’t in the hospital until she was essentially unresponsive due to the fact that I was a high-risk patient and we were still in the midst of a pandemic. When I drove her home from the hospital less than a week before she died, I tried not to talk about the future. I didn’t ask questions that I wanted answers to because I knew that signaled finality. I don’t know if I did that more for Mom or for me. We just talked mostly about her grandchildren and how they were doing. Mom always loved to bring them little gifts when she visited though oftentimes they were my belongings from when I was younger. I got the feeling she used visits to deplete her basement inventory. What I wouldn’t do for another visit though.

Mom got progressively worse after I brought her home. She eventually returned to the hospital and soon became unresponsive. Mom was able to come home literally hours before she passed away. She passed away a little after midnight on November 18, 2020. The same little girl who was born in a displaced person’s camp in Germany to her Holocaust-surviving parents. The same woman who lost her first child to cystic fibrosis and would soon have her second child, me, born with the same disease. The same woman who passed away during a global pandemic. But throughout it all, my mom lived a great life and I give credit to my dad who for 51 years of marriage made her so incredibly happy.

Cancer stole my mom from us but as the years go by I realize that it can never steal the memories or the people she so positively affected which includes me, my dad, my sister Emily, Andrea and her beloved grandchildren. The hardest part of losing her I think was that we could not see anyone except during a Zoom visit. Cancer may have stolen my mom but it was COVID that stole our opportunity to heal for those next several months.

A few days after she died, I saw Mom again but this time in my dreams. She was packing and told me she had to go. A few days after that, I had another dream that I got a call from Mom. “I’m here,” she said. I went home to see where she was. She wasn’t there. I looked everywhere. She was nowhere to be seen. That’s when I realized what she was saying. She’d always be there for me. That “there” though was not the same as it used to be. I haven’t dreamt of mom since. I think that was her final message to me. It still gives me chills.

I miss Mom very much. I don’t have to look far for reminders. Her dog Daisy is 17 and is still with us as Andrea and I have adopted her though our veterinarian is completely shocked that she is still alive. She still cuddles right next to me as if she can sense Mom is there. I often look at old pictures of Mom and remember how she was often the team mom for nearly every sports team I played on, the chaperone for trips so she could do my physiotherapy and how she accompanied me to doctor’s appointments. And I will never forget those words “You just have to keep fighting.” I am, Mom. I am.

The year after Mom died the same team she was watching on TV that first night in the hospital, the Atlanta Braves, our favorite team, won the World Series for the first time in 26 years. I like to think Mom was watching.

A lot has happened over the last 18 months since Mom passed. Emily got married. Ethan had his Bar Mitzvah. Avery got her driver’s license. Some things still haven’t. I still have that same August 28th voicemail on my phone, there is a hole in my heart that will never close and I “just have to keep fighting.”

I love you, Mom.

Live your dreams and love your life,
Andy

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Life Up in the Air

This past week I was a bit nervous about flying on a commercial airline for the first time since the COVID-19 pandemic. I flew with my son Ethan to San Diego and then back home from Los Angeles with some of our friends as we followed our World Champion (had to get that in) Atlanta Braves cross-country. He and I went to Petco Park in San Diego for a game and then to Dodger Stadium in Los Angeles for 3 more games. We had a blast but on the return flight, I was made aware that masks were now optional on commercial airlines.

I believe the COVID numbers are such that it’s the right time to start doing things I was totally against during the pandemic. Public transportation is one of those things. I have been okay with masks being optional everywhere at this point and have even myself been willing to take off my mask recently and eat dinner indoors in the right setting (not a ton of people in the restaurant). To me, airlines being optional on mask-wearing is slightly worrisome. How clean is the air on planes? (nationalgeographic.com); however, I feel like if I wear my N95 mask then I’m as safe as I can be and I’m also putting other people at less risk should I unknowingly have the virus. My biggest concern is when someone on the plane is coughing frequently.

That was the case flying Delta on the way home. Ethan and I, who wore our masks the entire flight, kept looking at each other with a nervous smile as the gentleman one seat back kept coughing. I found the irony that I have cystic fibrosis and have often been the center of attention on flights where I’m coughing up a storm. Thanks to the CFTR modulator Trikafta which I started in November 2019, that rarely happens now. Of course when I was coughing back then, I wore a mask and we were not in the midst of a pandemic. While I don’t think mask-wearing should be mandated on an airline, shouldn’t people who are coughing the entire flight have to wear a mask to prevent germ-spreading? That’s a sticky one I suppose.

For the most part though, I felt comfortable. The guy who was sitting next to me did not wear a mask which I was a bit nervous about the first five minutes or so but then I just convinced myself that it was like times prior to the pandemic where I felt like the only one on the flight sporting a facial covering. I would say about 60% of the passengers on the plane had masks on.

I sat down, ate the snacks I was offered and watched a few movies. I told Ethan on this trip that I want him to be able to feel comfortable making decisions in situations whether to wear a mask or not and that me wearing a mask doesn’t mean he has to. The only times I asked that he wear a mask were in the airport, on the shuttle heading to the airport and on the flight and he understood. He has been extremely comfortable wearing a mask for someone his age. He doesn’t care how he is viewed by his peers which I find a bit remarkable since he is a teenager.

My nervousness on the flights did not have any effect on the amazing time I had with my son. We certainly bonded again watching our favorite sport and I loved watching him laugh and hang out with his friends. I know there is a lot of concern from those with chronic illness about traveling on public transportation with mask-optional guidelines. I certainly understand the predicament. Don’t go and you are putting yourself at less risk but you are also letting a virus limit you from living your life. Go and you’re able to live your life again but you’re putting yourself at obviously more risk.

My best advice is that if you don’t want to travel, that’s totally understandable. If it works for you then it shouldn’t matter what other people think. My thinking is just that I want to provide some sense of normalcy to my family and perhaps for me too. I don’t want this virus to limit me completely. I just have to make certain adjustments that will lessen the risk of catching germs while traveling. While I may be the center of attention at times when I’m the only one in the room wearing a mask, I can live with that bit of awkwardness knowing that I’m doing what feels right for me. Again, going out and living my life with added safeguards is not 100% foolproof that I won’t get COVID, but it’s a compromise I’ve made to live my life on my terms.

Looking forward to flying again with my family.
Stay safe out there.

Live your dreams and love your life,
Andy

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The Strange World of Cystic Fibrosis

Living with CF is a strange world. I have been advised for most of my life not to be within 6 feet of someone who can empathize with me most because of the risk of bacterial cross-contamination. I have seen social media accounts of friends taken over by their families because they passed from this disease. I have to be checked on quarterly. My life has been consumed with daily treatments and meds since the day I was born.

Yet I’m still here and it hasn’t escaped me that a lot of people aren’t. I feel the survivor’s guilt quite often and not just with how I live but with what I say. I’ll never say that hard work and treatment adherence are solely why I’m here. There are other CF Warriors who could say the same thing but they were not as fortunate as me. I will never say that people who died from cystic fibrosis lost the battle. They didn’t. Their bodies just finally gave out.

I tell myself quite often that those who preceded me would say to push away the guilt and take advantage of the moments. I’m trying and for the most part I’ve been successful.

When you see me posting a picture when I’m feeling strong or hopeful, please know that my intent is not to brag or to incite compliments. The purpose is to help others who may be having some hopeless days too and show them whether it’s running a few miles or just walking to the mailbox that their dreams are still there for the taking.

For any of you experiencing survivor’s guilt whether you have CF or not, I hope you can do the same. Please stay positive and let’s find a cure for this disease someday soon so the guilt stops with us.

Live your dreams and love your life.

Andy

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The CF Warrior Project Volume Two

I am excited to announce that we have reached an agreement with our publisher on the latest version of The CF Warrior Project. I have been working on the manuscript for nearly 3 years and I’m excited to tell you that we will begin promoting it in May (CF Awareness Month) 2022 while introducing you to our 65 warriors. We hope to have the book available some time in Autumn 2022.

I realized that being a CF Warrior does not necessarily mean that someone has cystic fibrosis so the twist with this book is not only will we be highlighting those with cystic fibrosis but also those who do not have cystic fibrosis but have spent much of their time advocating for those who do.

This book is not-for-profit and will be a way for the Wish for Wendy Foundation to continue to give back to a community who has so often had my back. This version will be dedicated to my mom Eva Lipman, who we lost in November 2020 and who was a tireless advocate for those with cystic fibrosis. Thank you as always for your support and I hope that you will purchase the book when it becomes available, tell other people about it and provide reviews once you have read it. My hope is that it will continue to inspire others regardless of whether they have cystic fibrosis, some other chronic disease or anything that has made them feel like an underdog in life.

Live your dreams and love your life.

Best Wishes,
Andy

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My Normalcy is not Your Normalcy

What is normalcy really?

It varies depending on who you talk to. For me, normalcy is being careful with who I’m around and where I go. This routine has been a part of my life long before the pandemic and has caused me angst whenever I’m around anyone who is not feeling well. My parents instilled this strategy in me to stay healthy because of my cystic fibrosis. The pandemic has only validated this approach.

I understand that some would consider this to be “living in fear” but it’s an approach I believe to this point has saved my life so I have to be okay with it.

What choice do I have?

It has been difficult the last two years to go places not only because of the concern of the spread of COVID-19 and being at greater risk if I were to catch it but also because I often stand out because I wear an N95 mask to better protect myself. I know masks have for whatever reason become a controversial topic so I ask that those of you who are against them will continue to read this blog because I believe that my story does not center around this polarizing cloth.

My whole life I’ve felt fear that catching something as mild as the common cold could turn major because of my compromised lungs. For years, when I worked a 9 to 5 job with my dad, he would beg me to go home when anyone in the office was sick. While I know his heart was in the right place, it contributed to my anxiety and the fear of being looked at as different.

For many of you, you’ve had a glimpse over the last two years as to what it’s like to have a fear of catching germs that could kill you or at least put you in a compromising situation. It’s frightening. I’ve lost several friends who had the same disease as me (mostly lung transplant recipients which to this point I am not) to this awful virus. It only makes the fear of getting infected greater.

Many of you got vaccinated and later found out it doesn’t mean you won’t get sick or be able to spread the virus. For me, it’s like the daily routine of administering physiotherapy for a couple of hours and taking loads of pills to increase our odds of successfully fighting cystic fibrosis.

Both methods help. Neither is an assurance that we won’t get sick.

As COVID numbers slowly decrease and the mandates in certain areas are rolled back, your lives will slowly return to normal and I’m truly happy for you. But for people like me, normalcy is about as likely to happen as finding the fountain of youth. Well, actually I may find “my normalcy,” but I will never find yours.

And that’s my point.

While I’ll finally go to places like grocery stores and restaurants with confidence that I will be okay, it will take me a lot longer to do so without an N95 mask. I will still have to wear it in certain places – airplanes, doctor’s offices, hospitals – because the spread of germs is more likely.

As people around me continue to say, “I can’t wait to get back to normal,” all I continue to think in my head is, “Will people like me ever feel some semblance of normalcy again?” Am I looking forward to my kids and wife being able to go places and be able to worry less about my health? Yes, I cannot tell you how much I’m looking forward to that day. My lungs have always been difficult on me. I hate that the fear of them getting worse has put so much stress on my close family and friends especially over the last two years.

I look forward to this pandemic finally ending. I look forward to things returning to normal.

I just want other people to understand that my normal will never be theirs… and that people like me have learned to be okay with this.

What choice do we have?

Live your dreams and love your life.
Andy

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Mrs. Powell – More Than A Teacher

I remember the summer before my fourth grade year at Mt. Vernon Presbyterian School. I was really nervous. My teacher was going to be Marsha Powell who I heard was very strict and I was always a pleaser and was afraid of getting in trouble. I couldn’t have been more wrong about the woman who would end up being the most important teacher of my scholastic career.

Mrs. Powell, who had a deep love for her alma mater Auburn University, used to share the scores of every game the following Monday of school. She especially loves to make fun of the fact when Auburn would beat Georgia though let me say that was rare. Mrs. Powell was such a great teacher but I don’t remember as much how she taught but rather how she treated me. She was always so nice to me and would help me when I was asking questions. She also let me see a different side to her so let me explain.

The prior year my mom went on our school trip to Orlando as a chaperone because I needed someone to do my chest therapy. That next year while a student in Mrs. Powell’s class, we had another trip and Mrs. Powell was one of the teachers that was going. She had my mother teach her how to do the therapy so my mother didn’t have to go on a trip and I still remember Mrs. Powell doing my treatments and I never thought anyone but my parents would ever do them. It was somewhat of a relief. It was a brief glimpse of what it would look like to have some sense of normalcy.

And while we still laughed about the Auburn-Georgia rivalry, it wasn’t until a few decades later when I began my speaking career that Mrs. Powell asked me to speak at Mt. Vernon to the graduating class. It was an absolute honor and to have a little fun with it, I brought my Georgia hat and made her put it on since Georgia had beaten Auburn the previous year. She was a good sport about it. She ended up retiring in 2014 but not before making such a big difference in the school as the Mount Vernon School as it is known today has become one of the better private institutions in Atlanta.

I found out many months ago that she was battling metastatic breast cancer. I reached out to her and we emailed back-and-forth a few times but soon I never heard back and I knew that probably wasn’t a good thing.

I reached out to friends or their parents who knew her or attended church with her and they revealed to me that things were not good. Eventually I heard that she was in palliative care and last week Marsha Powell, the greatest teacher I ever had, passed away. She was only 69 years old.

The last few years we’ve talked about what a gift teachers are especially after everything they’ve had to deal with regarding the pandemic. I’ve known how great teachers are for a few reasons. My mom was a teacher and while I was never in her class, I got to see it first hand as her son. I miss her terribly. I will miss Marsha Powell terribly as well. She was an incredible teacher inside the classroom but especially out. I have kept in touch with many of my peers who at one point had Mrs. Powell as their teacher. She was truly unforgettable. My condolences to the family.

Mrs. Powell, thank you for revealing what normalcy looks like for someone like me and for loving your students like your own flesh and blood. Your legacy lives on through us.

Live your dreams and love your life.

Andy Lipman
#cfwarriorproject

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Wearing a Mask is not for the Weak

For all of you wearing masks in places where few people are doing so and getting those uncomfortable looks from those around you for doing so, just know this:

You are not weak for wearing a mask and doing your best to protect yourself and your family. That stigma needs to be crumpled up and thrown away.

Hear me now and hear me loud. You are brave for living your life with certain compromises. You are brave for ignoring the looks of others and standing by your principles. You are brave for not being afraid to stand out in order to do what you feel is right.

One day you won’t feel the need to wear the mask anymore but many people like myself with an underlying condition or who lives with those with underlying conditions will still feel the need to wear them in certain places. Just know when you see someone like me on an airplane, in a doctor’s office or in a hospital and your kid asks you “Why is he wearing a mask?”, you have an opportunity – an opportunity to change the stereotype that masks are for weak people.

With your brief glimpse into what it’s like to be in our world of protecting ourselves from germs, you can address your child’s question by responding with five simple words:

“Because that person is brave.”

#chronicillness
#wearingamask
#beingbrave
#cfwarriorproject

Andy Lipman
#cfwarriorproject

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My Favorite Teacher: To Mom on Our First Mother’s Day Apart

I saw a post the other day from someone whose mother had died a few years back and the post said that she doesn’t have a mother anymore so she cannot celebrate Mother’s Day. I could not disagree more. I lost my mother in November, but I still have a mother… it’s just a different situation. My mom is in my heart. Always has been. Always will be.

My mom was an amazing teacher and then I was born, and she had to give it up to take care of me. The ironic thing is I think I may have learned more from her when she wasn’t a teacher than any of her students during her tenure.

My mom taught me to be the dad to my children that she was as a mom to me and Emily. I advocate for my children the same way she did for us. Mom had this ability to be compassionate while also being tough.

People don’t understand how special a CF mom is unless they have CF. Mom did my postural drainage nearly every day and sometimes twice a day and taught me how to eventually take on that responsibility for myself once I got the physio vest. She opened up my pills, put the granules in apple sauce and made sure I took each one. She would later teach me how to swallow pills which I do 40 to 50 times a day now. She carried my pills around, so I didn’t feel overwhelmed by my disease but taught me to remember them so I was ready for the moment when she wasn’t there 24/7. She went to all my clinic appointments with me when I was a little boy and always tried to console me when the doctor scared me with any sort of information. Mom spent nearly every trip with me so she could do my physiotherapy and when she couldn’t because I needed “me” time, she taught others to do it including my aunt, my fourth grade teacher and eventually my wife. She fought for me and taught me how to have the strength to fight for myself. Mom taught me by her example how to love my spouse and children unconditionally. The thing is I learned that’s not necessarily an “every mom” thing. That’s just something my mom did and did so well. Eva Lipman was special. I wish I’d told her more. That’s one of my biggest regrets.

Mom, the last few weeks of your life, you fought so hard. You taught me what being a warrior was all about, and that’s why I’m dedicating my next book to you and recognizing parents of CF children in the book who play such a big role in their children’s outlook on life.

Mom, today is Mother’s Day. My first without you. I am seeing posts of people celebrating their moms and I so badly want to celebrate you but it’s too difficult right now. I avoid the Hallmark section at the supermarket. I change the channel when the theme is Mother’s Day. I cry when I think of our last days together.

On this first Mother’s Day that I will be unable to call you, take you to brunch or laugh at how we are still using my Bar Mitzvah napkins for special events because you bought far too many, I wanted to tell you that while I may not be celebrating “Mother’s Day,” I’m aware that I had a mother, I still have her and I still love her. I am always celebrating you, Mom, and your impact on me and your family.

Mom, I love you. I am proud to be your son and even prouder to be your best “student.”

Love,
Your 10 pound, 10 ounce baby boy Andy

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