I want to introduce you to a young lady who I met through my Instagram. Her story is one of courage and perseverance. Every time life knocks her down, she comes back up fighting. Her name is Sabrina, a 19 year old young lady. A young lady who has inspired me and I hope that as you read her story, that you will also be inspired.
Q: What is your story? How were you diagnosed and what was the diagnosis?
A: I was born with a very rare heart disease, which is also categorized as one of the most dangerous congenital heart defects, whose main diagnosis is called hypoplastic leftheart syndrome, which means that the left ventricle of my heart didn’t grew big enough to work properly. Moreover, I had a few different small heart defects as well.
In a way, my dad found out, that I am sick. When I was 5 days old, he took me to my podiatrist because my dad was worried about a weird breathing rhythm. So I got sent to the biggest hospital in my hometown, where they diagnosed 5 heart defects. The surgeons told my parents, I needed a very complicated surgery which means that during three big surgeries, my whole heart-body-lung circulation would be changed up, so I could live with half a working heart. If I wouldn’t undergo this procedure, I would have died.
Three years, four surgeries, many complication, a certain time of coma and one heart arrest later, I was stable.
So I started to have a more or less normal life. I went to a normal kindergarden and a normal school. Even though, I often had a lot of limitations and a lot of doctor appointments, I was quite a happy child, until I got bullied because of my heart defect. At the age of 8 years old, I developed a lot of mental issues, so I joined almost 10 years of ambulant and stationary therapy at more than a dozen of therapists. From middle School to High school (in Germany you usually stay at the same school) I changed the school. This helped me so much for building up self-confidence and building friendships. Here I met my best friend. Since October 2015, I am fighting several breathing issues. My settled local cardiologist tried different medication, but nothing worked out properly. In 2016, I was patronized in my hospital. Often, I entered the emergency room every three weeks. I collapsed many times in school and especially on school trips, for example in Rome, or woke up in the night, not being able to breathe and there was not even one day without extreme pain. In the ER it was the first time since I was three years old, I received fluid oxygen. Then I fainted in school in November 2016 so bad, that I got admitted to hospital for two weeks. After asking for more than a year for some necessary research investigations they finally agreed to it. Even while lying in this hospital bed, I struggled with catching breath and fading. So I received oxygen as well. They figured out that my valves are insufficient and my body started building up vessels which connected the oxygen rich and oxygen poor vessels and arteries to put away pressure from the heart. The doctors said that I am in a very little stage of this common complication for people which such a circulation, called Fontan circulation. However, they also said that those problems weren’t worse enough to undergo treatment or surgery and also not worse enough for having those symptoms. They decided to pull away the oxygen, because I didn’t need oxygen, I just thought so. Moreover, they said “You are not that sick. Heart patient can’t have sick lungs. I am the doctor and you are not” Why does any doctor tell me anything about my body, which is totally wrong, just because he studied medicine? I know my body the best and I was so willing to prove that I was right. After being discharged, I realized how much weight I actually lost. So I went to my settled cardiologist, who knows me since I was 6 years old. He is my doctor of trust, so I told him what I went through. I said, I needed one certain test and so we did it. My lung function was at that point 38%. He was so shocked about this rapid decrease and also shocked that nobody believed in me. At least, I knew I wasn’t faking and I was true to myself all the time. However, he didn’t know what to do and why it went so bad. For half a year, I searched for a hospital who was willing to help me. In this time I tried not to go to hospital anymore, because I knew how it would end: no help, just to be told, that there is nothing to do. And this was such a mental pressure and struggle for me, I wanted not to undergo. Almost half a year later, I had an appointment in a new hospital, three hours away from my hometown. More tests, new tests and more loopings in my emotional roller-coaster. Many hours later, I finally knew what was going on. Beside my complications and insufficient valves, I was in a devil circle, because every time, I overacted, my lungs weren’t able to build up enough oxygen, which was needed in my muscles. So my heart rate raised and my whole body felt in a state of lack of oxygen. When I slept a lot to recover my lungs, my muscles demounted. So every day, I had less and less muscles and my lung overacted way faster. The doctor told me I should join a stationary rehab to gain muscle strength and increase my lung function. Until this rehab started, I had an oxygen filter at home, who supported me in the night, in emergency cases, when I was walking a bit longer and also during my prom. In this 28 days rehab, I learned a lot about my body, tried out many different kinds of sports, got a personal trainer to make up my own fitness plan, feel in love with yoga and realized that I needed a physiotherapist who treats people with cystic fibrosis. Because a lot of treatment, which helps CF patients, it can help me as well. Today, I am planning to meet a new physiotherapist soon, I am searching for a gym where I can do my personal training program and also join yoga classes.
Q: How long have you been on oxygen?
A: I am not on permanent oxygen. When I was a baby, I used to stay a lot in a hospital, where I also have been on oxygen until I was three years old. For almost two years now, I am back at a point where I often struggle to breathe and for one year, I am on oxygen when I am in a hospital and not that often when I am at home. But in an impatient rehab in August 2017, the doctors figured out, that it would help a lot, if I could receive an oxygen filter to take it with me at home, in an emergency case and for sport in a gym.
Q: How do you stay positive?
A: I guess during the last few years, I had to learn many things and from every lesson, I just try to take something positive out of it. Whatever we do and whoever we meet, it’s a lesson or a blessing. We can’t really lose. Then, I have some kind of mantras which I remember in bad situations. Sometimes, I am writing Instagram posts about the situations which are bothering me. During the process of writing, I try to find a solution or something positive out of this. And when I read the comments, I often realize that I am not alone. Seeing, that I can inspire or help others and that those people all around the world can take a valuable lesson from it, keeps me going in a way, because so I know, my struggle has a reason. I am a strong believer that we don’t go through tough situations without a reason. We have to learn from it for ourselves or we have to go through it that other people learn from this. Finally, I also think that a positive mindset is the most important thing to get through whatever we need to. If we mentally give up, than our body will easily do so as well. Giving up isn’t any option for me.
Q: You are such an inspiration to me. What or who inspires you?
A: You. Or more specific, people like you. People, who stand up for somethings which means a lot to them. People who stand up, by their selves for themselves and sometimes for so many other people as well. I never had a role model and I never said to myself “I want to be like that person.” We all have a destiny and I look up to people, whatever gender, religion or culture who try to give a purpose to their life. We live for a reason, and some human beings make awesome work out of it. And thank you so much that I am your inspiration. This means really a lot to me, because I never expected to be one.
Q: You were featured in a magazine as yourself, scars and all. How do you hope it inspired other chronic ill fighters?
A: I guess, we can inspire in different ways. First of all, so many people could be in an inspiring position so it makes me even more grateful, that I had the chance to be in this magazine. Maybe, one of the most important things for chronic ill fighters is that they need to know, that they are not alone. We all have our own story and sometimes it’s really hard to compare their own story and disease to someone else. And even if we can’t identify with each other 100 %, than we still can draw comparisons and can relate to each other’s struggles. Moreover, I know how frightening a chronic disease can be, and I guess it’s a very good thing for younger warriors, or the warriors who just got diagnosed, that they can see and read my story which might help them to find new ideas how to handle a daily routine or how to make the best out of a situation.
I also guess that this could be a huge benefit for healthy people as well. Sometimes, I receive messages from people who tell me, that I would live at the edge between life and death and that my story inspires them to appreciate being healthy.
Q: What is a fear or insecurity you have about being on oxygen?
A: My fear is about the reaction of society. I mostly look healthy and it’s hard to explain that a person with heart disease could have lung issues. And that’s why people might tell me, that I use oxygen for attention or something like this.
Q: What is something you hope to accomplish one day?
A: I hope, that one day I can graduate university in medicine and that I can spread awareness as a chronic ill doctor and that I can work as a public motivation speaker in this position. But it’s a very far road to this point. Moreover, I have some dreams which I hope to accomplish, which are projects to spread awareness, but I guess that it’s way too early to talk about them now.
Q: You travel quite a bit. What is your favorite place and why?
A: It’s amazing that I have the privilege to travel so often. Until now I “just” traveled through Germany for charity events, but with my family, I already traveled to a lot of countries. Even though, sometimes, it’s really exhausting and more than stressful to go on a trip, but I am still very thankful, that I can do this things with my body. Also, I am very thankful and grateful that my parents enjoy traveling the world, and without their support a lot of places would still be in of my dreams. I don’t really have that one favorite place or country. I personally love to get to know many different countries and especially their cultures. Sometimes, I prefer walking at the beach side because I need time to calm down, to distance myself from my daily routine. I love mother nature and this is why I really love Scotland and England, and I will never forget the American Indian summer, which I saw in a huge national park in New England. And then there are those times, when I think about the fact, that my disease is progressing and I am more than willing to experience huge cities and historical culture, inside tips in foreign cities and “places to be.” To sum up, I would say, a lot of countries are still on my list, I would like to see and experience. I prefer getting to know the food and people and culture in a country and prefer the “inside” of it, then just seeing places to put a tick on my list. The places I choose, where to go or go there again, are depending on my mood, my physical conditions, my experiences, also what I see and hear from people, who already visited the places and who I travel with.
Q: What advice would you give someone who is battling through health issues?
A: There is something inside of you. A purpose. You didn’t choose to have this disease, but this doesn’t mean, that you have to fight on your own. But you have to fight, and you can choose if you can make something out of it or not. Times will be rough and the road will be stuffed with a lot of rocks. Don’t compare yourself to other sick people by having a competition whose disease is more rare or dangerous. Your illness is the most horrible thing for you right at that time and that’s okay. You just need to find a way how you can accept it and to turn your pain into power. I know, it hurts and mentally it’s a huge effort to still keep going. Being mentally ill is a thing, which is very common while fighting health issues. You don’t need to hide it. You got this. And you should have the will not to give up. There is a reason why you have to fight it and not anyone else. Also, you re beautiful, just the way you are. Society shouldn’t bring you down, because you don’t look the same or can’t do everything they can. They can’t even imagine how hard it could be to get out of bed for you. Be creative and if someone tells you that there is a thing, you can’t achieve, prove them wrong. In many cases you can do it as well, but the road might be a little longer and harder. There are also things you can’t do, doesn’t matter how hard you try or how much you are willing it. Make peace with those things. Of course you can try anyways, but choose quality before quantity. So decide to do something else, which brings joy. You are loved, even if you are different – or especially you are different. Anyone else already exists. So I am so sure that there is also someone waiting for you to love you. You deserve so many things, and being in love or traveling isn’t just a privilege for healthy people. Accept your past and fight for the future. Your disease is a reason, why you became the person you are today. But this doesn’t mean that you should define yourself through your illness or that you can allow anyone else to define you through your illness. But it’s still more than important, that you accept your illness, because as a chronic ill person, it’s the hardest thing to fight against their illness, because then you fight against yourself. Take your body as a temple, listen to it and fight for a better life quality. Stay true to yourself and remember that you are beautiful, just the way you are, with your scars, with your oxygen tank or with your peacemaker. Times can pass by and some illnesses are terminal and some are not. Some are progressing and so maybe you will never know how your mental health will develop in the next few days, weeks or years. Remember, that often bad times can get over, because it’s just a bad day and not a bad life. Appreciate the small things, the accomplishments and especially the good days. Keep hope and faith. Don’t give up. Fight.
Sabrina is amazing young lady. She is the definition of courageous. She never stops fighting, even when things look dim. I love that when she travels, she takes in the culture and food and sights around her. Sometimes in life, we are so focused on the bigger picture that we forget to see the small things that surround us. We forget about what the mountains smelled like, the food tasted like, and what the wind felt like blowing through our hair. It’s these moments that make us, us. Our surgeries, our scars, our oxygen, and anything else you have been through. We should lose the bigger picture, of what we look like, and focus on what made us, us. Sabrina says it well. “you are beautiful, just the way you are.’ Never forget that. And if you want to follow Sabrina on Instagram, you can @fragments_of_living.