an appointment with my past

Last week, I took a trip down memory lane and got another glimpse into my life that once was…I had an appointment to get a breathing test done to make sure my lungs are doing ok. I’ve had hundreds of these tests in my lifetime. This test provided the numbers that could change everything in the matter of seconds. So many times I waited with bated breath and a pounding heart to see if the numbers had budged and I’d begin to wonder what would happen to me if those crucial numbers had dropped. When I arrived at the pulmonary building, I mentally prepared myself for what I’d see and feel when I got inside. The test is done in the same area as Pulmonary rehab, the place I spent hours and hours in trying to get as strong as I could to be able to survive the transplant. In that room were all those memories of what my life used to be like before I was able to breathe. It’s not that I could ever forget those days when my life was based on getting enough oxygen out of my tank and finding enough energy to get through the day; but I try not to think about all those terrifying, unfulfilling days. Each day that I have lived since my transplant, I do my best to fill my time with positive and grateful moments but when I have to go back into that building, I have no choice but to have an appointment with my past. As I walked into the room, all the memories started rushing back. To my left were the exercise machines attached to heart monitors and oxygen tanks. I glanced at the man walking on it, toiling away with tremendous effort as his nasal canula tried to provide him with enough air to allow him to do his work, which is simply walking at a very slow pace but for someone with lungs that don’t work, it’s an exhausting mountain climb.I remebered when I was on that machine, I would wait and count down the minutes till the respiratory therapist gave me permission to get off …and move on to the next exercise. I couldn’t wait to finish so I could go home and sleep. I then looked to my right. A few women were sitting in a circle doing leg and neck stretches with their oxygen tanks on full blast, coughing away. I remember how tired I was doing all that, and looking at them do it now, I know how easy it is for a healthy person to do such simple moves like that and how difficult it was for me back then. I didn’t recognize any of those faces and I wondered what happened to all those men and women that sat with me those long and endless days when my impending future seemed hopeless. How many of them are still alive, were any of those people lucky enough to experience what it means to take a deep breath and not be in agony? Were any of them able to come back four years later and see how different life is once you don’t have to focus on breathing? I followed the technician to the back of room and took a seat in the box with the breathing equipment. It may have been the two hundredth time I was doing this test but I was in a completely different place this time. Yes, it’s annoying to keep having to do so many of these medical tests but I’m so lucky to be able to come back and see how my miraculous journey was even more miraculous when you are able to see it full circle. I breathed a sigh a relief when I was all done and glanced around the room one more time. When I had been a patient in that rehab room, I never knew if I’d get another chance to have a life that got any more exciting than those machines in the room. This was an incredible reminder of how lucky I am, how far I have come and how grateful I have to be for every breath I take.

greatness and gratitude

Last week, I was on such a high parading around Disney World with the nicest, kindest most caring people whose one mission is to make those four days impossible to forget. As I got back and tried to settle back into real life, I found that it wasn’t so easy. Less than 12 hours after getting home, I was on my way to a doctor’s appointment that would take all day. One day I was screaming on a roller coaster covered in face paint and the next, I was waiting for blood results-talk about getting back to reality… But thank G-d, I am on a high once again. On Tuesday, I went back to the elementary school I had been a student in to give over my lemons to lemonade speech. It was so strange to be back there and to be sharing my secret life story to all the girls. Those were the same hallways I had walked in so many years ago trying to hide my cough. The auditorium where I spoke was the room we used to gather in daily while I tried my best to disappear from everyone else so I didn’t make a mistake and reveal anything. So much had happened since I went through those doors and walked down those halls, it felt like a lifetime ago and I never would have believed where my life would take me. As the girls took their seats, a few of my friends from the neighborhood walked in too- they knew everything that had happened to me but they wanted to hear me tell it over. One of those friends had been there with me right before my transplant when it didn’t seem very likely that I’d survive for much longer. After I had received my new lungs, she told me that on the day when she came to visit me, she saw how bad my situation had become and when she said good-bye to me and turned to leave, she honestly thought that was the final good-bye. She didn’t think she would get to see me again, I was so close to death. Seeing her there on Tuesday, sitting right there in the front made the whole message even stronger. She had been there with me holding my hand in the face of death and here she was with me again-but this time, it was for a good thing- to spread the message of how incredibly wonderful it is to be alive. It’s amazing to be able to see when things come full circle. To think that I went from a girl who was afraid to open my mouth to someone who gives speeches is something I could never have imagined. To the little girl inside me, I’m so thankful I had to strength to continue when nothing seemed to make sense, for fighting when doctors said to give up, for staying so determined despite having all the odds stacked high against me. And then today, I went to a high school in Brooklyn and told them my story too. Whenever I’m finished, I let them ask questions. One girl asked me what made me keep on going all those weeks and months in the hospital that were filled with sickness and loneliness? I didn’t really have an exact answer but I said that I had a picture in my head of me one day standing in front of a crowd being able to tell over everything that I had endured in silence for so long and that I had such a desire to one day be able to look back and see that I had made it -that all my tears and trauma was what would make me stronger than I was ever was before. I really believed that G-d would give me the ability to make it through. As I handed out my Birchos Hashachar cards, I once again felt an overwhelming amount of gratitude for being able to have such a positive effect on so many people. So far, I’ve spoken in five schools and I have given my blue Brachos cards to over seven hundred people. The craziest part is that it all came from one little thought. I never believed I would be capable of doing something like this. Since life is all about the lessons you learn, I must say that I was shown that anyone can do anything if they set their mind to it. You don’t need to be someone powerful in order to create something powerful, we are all capable of greatness.

four days in dreamland

As I sit down to write this, it is a blustery thirty degrees and snowing outside. But it doesn’t matter because I am mentally, still in Orlando. One week ago, I was packing my suitcase to go with the Ohr Meir Foundation to Orlando. I was excited to go, I had heard great things about the trip. But nothing could have prepared me for how incredible and magical those four days would be. For the past three years, Ohr Meir had invited me to come. Each year, I had gotten my medical forms filled out and my approval from my doctors, only to have those plans cancelled. Every year, about a week before the trip, something happened to me medically that prevented me from going. For years, I had my dreams crushed and my excitement turned to disappointment. The whole time Ohr Meir was in Orlando, I was either having surgery or dealing with some immune system issue. I was so upset and I wished that one day, I would get my turn. So when I got a phone call in November asking if I wanted to join Ohr Meir this year, I didn’t want to get too excited for fear of being disappointed once again. I filled out all the paperwork and decided not to tell anyone and not to even think about it until right before. If it was meant to be, I’d get to go. As I zippered my suitcase up, I couldn’t believe it was really happening. I entered the airport bright and early- at 6:00 Sunday morning. As I saw the eager, energetic smiling Ohr Meir group, I burst into tears; I was finally here. I had always wanted to be part of something-especially something as awesome as Ohr Meir. Keeping all my CF secrets, I was never able to enjoy being in a big group because I felt the need to become invisible for fear of having too much to hide. This was going to be the first time I would be open and be myself. I was extremely emotional the whole time. I never believed any of this would be happening and I was so grateful that it was. I could talk about the trip for hours, I have so much to say. Every single second of this phenomenal trip was a fun-filled whirlwind of excitement. Every hour was stuffed with jam packed joy and smiles. There’s nothing like having rooms filled with happiness, sounds of laughter everywhere you turn. Whatever hardship and crisis anyone is dealing with at home is completely non-existent on this trip. There is simply no time to think about anything when there is so much magic and memory- making going on. So many times on this trip I had to just stop for a minute, look around and take it all in. All those hundreds of hours I spent attached to machinery and worrying whether I would make it through another week were erased and replaced with exhilarating, breathtaking moments. The people there only care about making everyone happy. There’s non stop giving. I couldn’t get rid of the smile on my face the entire time. When we were walking through Universal Studios, my group stopped at a roller coaster. I was debating whether I should go on it-I was never able to go on rides because I would break into a huge coughing fit, roller coasters were torture and too much handle with lungs that didn’t work. So I decided to give my new lungs a thrill and try something new. It was an amazing feeling to be able to breathe the whole time and even scream at the same time-and then I went on a again! I came off feeling so free and eager to see what else I was going to try. This trip had so many firsts-the first time I was able to find real friends without having to hide anything. It was the first time I was part of a unit, the first time I could do whatever I needed medically without going into a closet. I was shown happiness on a whole new level. I am at a loss for words when I try to find a way to thank Ohr Meir for all they have done for me and so many others. Even though I came home three nights ago, I am still in a bubble of happiness with my mind filled with the greatest memories and my heart full of joy. I’m overwhelmed with gratitude to H-shem for allowing me to be part of something so incredible. I may have had to wait 27 years, but it was well worth the wait. Ohr Meir,you have proven that dreams happen. Keep lighting up the world!!!

eight days later

Here we are, eight days later…the last day of Chanukah. All eight candles were lit and tonight, we are all going to put our Menorahs away until next year. The question is, besides for the great gifts we received, what did we get out of it? What message will we walk away with? Unfortunately, I know of a few tragedies that occurred during these past eight days. Anytime I hear about a tragedy, especially if it involves someone a know, it’s so difficult to understand. But the fact that it happened on Chanukah is even harder to comprehend (thank you Hadasa R for inspiring me…) Chanukah is supposed to be the time for miracles to happen and it’s about seeing the bright lights in the darkness. It doesn’t seem to make any sense for someone’s light to go out or for someone’s world to get dark at the time when the lights are shining and shimmering around us and we are full of a bright hope that G-d can do Miracles even when it seems impossible. It was really bothering me so I was trying to make sense of it. As each day of Chanukah passes, the Menorah gets brighter and brighter with each candle that gets added. One little light of hope keeps getting bigger and stronger. But then, when all eight slots are filled, we are finished and put it away with the dreidels for next year. But there was a whole point to the parties and the presents and the happy atmosphere. It was showing us that H-shem is the One who saved us- just like He did then He can do it now, which teaches us that G-d is controlling the world. I am in no way trying to explain why certain things happen because there is no answer to that question. But I think it shows us that we are supposed to try to find the light even in the most difficult, darkest situations and constantly seek H-shem especially when it seems to make absolutely zero sense why those things happened. For H-shem to make tragedies happens during such a happy time makes it so much harder for us to understand…but at the same time, we must believe and try even harder to find hope. We must pray that one day we will get to look back and those dark times will actually look bright.
On a brighter note, I got a great Chanukah present. These days, I have found myself more and more shocked at how far my new love of speaking and sharing my story has come. Yesterday I was given a copy of the Manhattan High School newsletter. One page is about the speakers they’ve had so far, one of them being me. ME!! It’s an incredible feeling to see it in print. Once again, I got to see how far I’ve come and now I’ve witnessed another huge mountain I was able to climb because of G-d’s help. I was engulfed in an ocean of darkness thinking I would never see the light again but I had a tiny spark that was dwindling inside me with the slightest hope that one day I will get to tell over my story and I won’t be silenced anymore. Thank you H-shem for that spark, that little fire in my soul that kept burning in order for me to get this far and for showing me that although I felt like a nothing in the great big world around me, I have come to the point where I can tell over my hardships and struggles, the good times and the miracles and be able to shine. I hope we get to see the lights shining all around us even when we no longer have our burning Menorahs out on display.