The Finding Beautiful Project is something I want to use as my way to give back. To help people find the beautiful in themselves. I understand what it feels like to be different, to feel ugly, to feel like your world is crumbling. It's taken me years to build my confidence up and use my difference to my advantage, to be confident and to simply just be me. I wish to use this space for people and their stories of desperation and hope, of fitting in and to help them find beautiful.
Chelsea and her story of Scleroderma
Sometimes things in your life happen that you just can’t explain or understand. Some might make you happy - some might keep you up at night in tears. One thing though that I truly believe in is that the hardest things in life DO make you stronger. I found the quote pictured here a couple years ago, and while it took me a while to get to a place in my life where I could honestly say I believed it, I couldn’t have put it’s message in to words any better. So much of my truth is in that short sentence. In 2004 I was diagnosed with an autoimmune disease called scleroderma. Sitting in that doctor’s office with my mother, I didn’t know how much it would impact my life. I didn’t know how much it would make me feel different, alone, and unhealthy.
Over the years I struggled with these feelings, along with the symptoms caused by the disease.
By definition, scleroderma comes from two Greek words: “sclero” meaning hard, and “derma” meaning skin. Hardening of the skin is one of the most visible manifestations of the disease. There are two types of scleroderma – localized and systemic. Localized scleroderma typically only causes hardening (and sometimes discoloration) of the skin and muscles, whereas systemic scleroderma can harden the skin in addition to internal organs. What prompted my mother to take me to see a doctor was the sudden appearance of a small dark spot on my left thigh about the size of a quarter. It took countless blood tests and numerous doctor visits to come to the conclusion that I had localized scleroderma. That’s the thing about scleroderma – it is very hard to diagnose as it is with many other autoimmune diseases. Only about 300,000 people in the United States have the disease, and no one seems to know what causes it, or how to cure it. My mother did her best to bring me to the top doctors who specialized in this disease along with other autoimmune/rheumatic diseases, but with no known cure there was not much that could be done to stop it’s progression. There were treatments available to try and help some of the symptoms, but nothing was guaranteed and everything had terrible side effects. At the age of 15, my mom did not want to put me on immunosuppressants, steroids, or any other medication that could cause me more harm than good in the long run. I’m grateful I had her by my side and thankful she always kept my health as her top priority.
While I did try some of the less risky treatments, nothing seemed to be working. By 2006, which was my senior year in high school, that small spot on my left thigh spread and took up the whole left side of my left leg, and was starting to make an appearance on my left arm and left side of my stomach. People began to start to notice and some were asking questions, like if I had been burned or if they were bruises. By my sophomore year in college, those dark spots had become even darker and larger. My skin was starting to harden and in many areas I was loosing pigmentation. While I was lucky enough to not be experiencing any of the other health related symptoms at this point, the weight of this change on my skin was starting to wear on me. Everywhere I went people would stare and it was getting harder to bare it. That summer I stopped wearing anything that would allow the marks on my skin to be seen. In 85-degree humid summer weather, I was wearing long sleeves and jeans. I stopped doing things I enjoyed doing if it meant someone would be able to see the marks on my body. I was so incredibly self-conscious of what this disease was doing to me that I started feeling like I would never be able to find someone who would love me, or that if I let friends see it, they would think less of me or look at me differently – just like the strangers who stared as they would pass me by. I believed that the moment I’d let someone see the lesions on my skin, they would turn the other way. So much of my time was spent worrying about what others thought and what having this disease would mean for my future- more than I’d like to admit.
For most of the last 12 years, the phrase “being comfortable in your own skin” was probably the farthest thing from the truth for me, but at some point, something changed. I can’t say that there was one exact moment in my life where my thought process shifted, but what I can say is that being a self-conscious, withdrawn woman was never who I wanted to be. It’s clear to me now that I have grown so much. I have become stronger. I’ve started to learn to let go of the things I can’t control and focus on making a change in the ways that I can. Each day I try to let another wall down that I spent 12 years building. I surround myself with people who don’t LET me feel like I am different, alone, and unhealthy. I do my best to not let this disease get any worse and take over any more of my life than it already has. Small victories are happening for me as I’m regaining the confidence I had before I let scleroderma ruin my self-image. It sounds so ridiculous when I put it to paper, but wearing shorts and a tank top now in the middle of summer is a victory for me. 10 years ago – even 2 years ago – that would have NEVER happened.
A big victory for me was meeting Leah. Her whole concept of life that she demonstrates through her photography and her philosophy of “Finding Beautiful” was what I needed to see to push myself one extra step further. She inspired me to do something I thought I would never do, which was to tell my story and let me be seen as me, despite the scars I have on my body. I wanted to finally feel like I was free and that I don’t have to hide the disease I have anymore. Going to the beach with Leah and taking these pictures was totally out of my comfort zone (if you haven’t already gotten that from the rest of this story), but it was completely liberating for me. I’m thankful I met someone like Leah who inspired me, and pushed me out of that comfort zone. I’m thankful I’ve come a long way from the self-conscious, withdraw girl that I used to be.
I’m thankful for my struggle, because without it I wouldn’t have stumbled across my strength.
Elaina and her story of her scar.
My friend Kelley Swann of Keleidoscope Custom Florals out of Easton, Maryland, approached me about incorporating flowers into photographs of women with scars and stories about their scars. Her idea fits perfectly with my Finding Beautiful Project. She asked her sister Elaina if she wanted to be a part of this. Elaina agreed. This is her story:
I was always known by close friends and my family to be the "tough-one". I did not take crap from anyone and I was extremely strong-willed. This was me my whole life. I took people under my wing if I thought they were being bullied or abused by others. I wanted to save every hurt person I came into contact with. I wanted to fix others and be a shoulder for them to cry on. Crying in front of others was something I rarely did, I couldn't let people see me weak.
At 26 I became pregnant with my daughter. My pregnancy was awesome after the first three months. I gained 32 lbs all together and I was on a constant high. I would daydream about what she was going to look like and what type of mother id be. It was literally a fairy-tale story in my mind. My hopes and dreams were filled with nothing but rainbows and butterflies of this new upcoming chapter in my life. April 10 2010 Keira Faith arrived. She was absolutely beautiful and my heart was overflowing with love for her. I had never in my life been this madly in love with another soul. She was at that very moment my purpose for life, my first baby. My whole world.
Coming home 2 days later from the hospital I am sitting in the back seat. Keira was in the car seat, so tiny. Her cute little hat on to keep her bald head warm and her little mittens on her dainty hands to keep her from scratching her face. Keira was healthy, Keira was beautiful, Keira was what I wanted since I was a little girl, my baby. So why was I in the back seat crying and hyperventilating?
Everyone would look at me with sad eyes and say, 'oh its just the baby blues. Every mother goes through it." Well they were wrong on every aspect. It wasn't the "baby-blues" and not every mother goes through it. So I ignored it, well, I tried. I kept beating myself up, "whats your problem??' "why are you feeling this??" I pushed it away. I dealt with it, I lashed out at people I loved and I was just a mess some days. Looking back I can't believe I made it through that. Sometimes my memory is foggy when I try to think about about Keira as an infant. Forgetting most of your child's life for the first year doesn't exactly make you mother of the year. I never received professional help for postpartum. I thoroughly regret that.
I believe when you do not fix a problem you create a bigger problem. My postpartum manifested into more which I was not prepared for. Depression, anxiety, weight gain to the max. I was largest I had ever been in my life. After years of just going through the motions and being completely numb, I decided to finally get some help. The reason I finally got the help I needed was not because I got on the phone and made calls or even got in my car and drove around to find a doctor to help me. It was because on December 5 2016 I broke. I broke in front of my children and husband. Once again,,,mother of the year moment. So there I am in the hospital bed just crying my eyes out. Crying so badly that my eyes were swollen shut just about. I came clean to my family and the doctor in the room. I did not want to be here anymore. I was exhausted. Life just hurt too much and I was over it.
That woke everyone up around me, and I woke up too. I finally cried, I let it all out. No more hiding or putting on a brave mask. I was weak at that moment! And it was okay. Everything was going to be okay. I started seeing a therapist once a week, I was taking medication, and the best part of it all, I was working out. I was getting up every morning at 5am and meeting my sister and mom at the gym. I absolutely loved it and I was seeing results. My head was coming out of that fog and I could see light at the end of the tunnel. I was happy and free. No more pain that I couldn't bare, no more self doubt, no more beating myself up. This was how I was meant to be,,,,happy!
Easter day 2017 I am rushed by ambulance to the Easton Memorial Hospital. Before that though let me say this, I felt some pains in my right side for about 3 months. I kept pushing it off and ignoring it (I have a problem with doing that). I seriously thought it was from working out, pulled muscle maybe? Negative! A big negative!
Three hours later in the ER, finally the doctors realized what was going on in my body. My stomach was in my chest and my intestines were twisted. Up in the air I went! First time in a helicopter and I remember most of it. I was in Baltimore at The Maryland University in 22 minutes. I remember being wheeled into a cold room and people were hovering over me. I remember bright lights and being moved onto a table. And that was it! I woke up 4 hours later to my husband and a nurse smiling at me. I was in shock trauma. I had 15 staples going down my stomach and G tube inserted into my stomach and sticking out of me. I spent seven days at the hospital.
My hernia is one of the rarest. Morgagni hernia is what it is called. I read somewhere there are only 12 cases of it in the United States. Life changed for me when I got home. After recovery I really had an awakening. Life was too short and I almost left this earth. I almost left my kids behind. How would they have remembered me if I left that day?
Staples were taken out 4 weeks later and the G tube was removed 2 weeks after that. I see my scars everyday. When I get out the shower and look into the mirror they stare back at me. People ask me sometimes if they can see them. I show them. I am not embarrassed or a shamed. I see them as a sign of strength. I survived, I am not weak, I am right where I am supposed to be in life. My journey in this life has a few more chapters. My mind, body, and soul went to war and my scars remind me daily that I won.
I do not doubt myself any longer. I say thank you to people when they give me a compliment. I get in the pool with my kids (instead of being wrapped up in a towel sitting on a chair), I am venturing out, spreading my wings. I picked up my camera and started showing people my talent. I have always loved photography and now Its time for me to show others what I can do. I love myself and I smile more. I take the time to be in the moment. Most of all I have forgiven myself. I am Fully Alive.
Tasmin and her story of CVID
About 2.5 years ago I was diagnosed with CVID— common variable immune deficiency— which is a form of primary immunodeficiency disease, found in approximately 1 in 25,000 people. Essentially, my body doesn't produce certain immunoglobulins which puts me at a higher risk of infection/illnesses. In most cases, CVID is not diagnosed until the patient is in their 30's or 40's, but my levels were so low that I was lucky and they found it earlier. Unfortunately, I was unable to get any treatment for about a year and a half, so I continued to get sicker and sicker for that amount of time. Eventually, my doctor told me in one breath that if I got a cold I would possibly die, and in the next breath that he didn't have a "plan B" if my treatment got denied again, and I decided it was time to find a new doctor. I wasn't ready to sit around and wait to die. I switched doctors, and was on treatment the next month.
It is a subcutaneous immunoglobulin replacement therapy, meaning the medication is administered beneath the skin, and takes a couple of hours to complete, but essentially it pumps immunities into my body that it doesn't produce on its own. I undergo said treatment every two weeks. I also have endometriosis, which was diagnosed when I was a teenager. I have repeatedly asked multiple doctors for a hysterectomy, but have always been denied due to the fact that I don't have children, and am not yet 35 years old. Instead, as a way to try to control it, I have taken birth control continuously (in one form or another) since I was 17.
I am fortunate in that I don't show many outward physical signs of a disorder of any kind— aside from hives on my skin, and often greasy looking hair, etc. On the other hand, I am almost always exhausted, and have to remember to pace myself when I do have energy, because when I overdo it takes me awhile to recover. I also have pretty frequent stomach issues, body pain, and get frequent headaches. I am so blessed to have my family (namely my parents) and friends, who have always been so supportive and understanding. I honestly don't know where I would be without them.
I am hesitant in writing this, because it sounds so whiny and woe-is-me, when I know that God is using it to do something AMAZING, even if I don't know what that is. I'm reminded of a song by Hawk Nelson, in which they say that when we are being held under the pressure of something and don't know what will be left of us, God is making diamonds out of the dust— out of us. Sometimes I find myself missing the person I used to be, the one who was energetic and always had the quick comeback or funny quip, loved her gym workouts and felt strong (and sometimes even beautiful). I catch a glimpse of her every now and then, on a good day, but I somehow know that I'm not fully that person anymore. I wonder what/who He is trying to make me into through this process, and I can't wait to see who I come out on the other side of it as.