Melaney Niemiec doesn’t want you to feel sorry for her. She doesn’t want your awkward stares or avoidant glances either; what she wants is your attention. As we gather in late December (2017) for a photo shoot, Melaney is effortlessly beautiful, inside and out. The tubes connected from her stomach and chest, to a backpack she is forced to wear, are hardly noticeable. She has this gift, the innate ability to make everyone else feel at ease. At times she is so casual that you forget she is the one fighting a battle for her life.
It is hard to imagine, but just two years ago, Melaney was a vibrant 22-year-old. A newly minted college graduate, working her ‘dream job’ as a bedside pediatric neuro-trauma nurse at Phoenix Children’s Hospital. In college, she’d fallen in love with fitness, losing an astounding 40lbs. In fact, at one point, she was able to complete a 300lb deadlift successfully. Then suddenly, in February of 2016, she mysteriously fell sick. As doctors and specialists scrambled to figure out what was going on, Melaney was forced to spend 32-days-straight in the hospital. What occurred over the subsequent weeks would change everything.
She would lose over 60lbs. and went from lifting weights, to barely being able to lift her body to do basic everyday tasks like walking. A series of heartstopping diagnoses would soon follow and within a matter of months, her perfect life had been ripped away from her. A once-certain future was turning into a nightmare.
Many of us would have held the world’s largest pity party, and rightfully so. We would have questioned everything and perhaps even thrown in the towel, but Melaney is and has always been a survivor. She decided to do what all great fighters do, fight. She founded the non-profit Brave Soul Blankets, as a way to spread hope and love to others who were facing similar predicaments. In many ways, this is where her story truly began.
Melaney Niemiec is a brave soul, and she deserves your full attention.
Q: You have Dysautonomia – Postural Orthostatic Tachycardia Syndrome (POTS); Can you explain what that is and how it affects/has affected your day-to-day life?
Dysautonomia is an umbrella term for conditions in which the Autonomic Nervous System (ANS) does not work properly. Postural Orthostatic Tachycardia Syndrome (POTS) is one of many conditions that fall under that category. The ANS controls functions in the body that work automatically (e.g., heart rate, blood pressure, digestion, kidney function, temperature regulation, and more). However, in POTS we have difficulty regulating these systems. Some symptoms that are present in POTS include dizziness and fainting upon standing, low blood pressure, abnormal heart rates, severe chest pain, malnutrition, autonomic neuropathy, migraines, and in severe uncontrolled cases, even death.
This condition can affect the functioning of the heart, bladder, gastrointestinal system, sweat glands, pupils, and blood vessels. POTS has numerous causes, and many go unidentified. Identifying a cause offers greater treatment direction and clarification; and in my case, a specific cause has yet to be determined.
I’ve had several diagnoses that accompany my POTS; these include Mast Cell Activation Disorder, Chronic Migraines, Autoimmune Autonomic Neuropathy, Gastroparesis (paralysis of the stomach), Global Gut Dysmotility Disorder (near paralysis of the full GI tract), and a few other complex conditions. I have failed many treatments, and constantly try new innovative ideas to keep my body functioning at its best. I currently rely on approximately 25 medications, a feeding tube, IV nutrition, two central lines, my family, and the JOY of the Lord to get through each day! This disease can change from moment-to-moment and day-by-day. I typically experience a steady baseline of chronic pain and weakness along with other symptoms; however, everything can exacerbate without warning. Some days start out great but end with me in the emergency room (ER). In 2017 alone, I was hospitalized 5-times, had too many ER visits to count, with at least one doctor’s appointment, procedure, or treatment each week.
Q: When did you receive your diagnosis?
I have many diagnoses, so my answers have come over a period of time. I first got sick in February 2016, when I was 22-years-old. I was in the hospital for 32 consecutive days. It took 20 days to get my first real answer as to what was going on, which was Postural Orthostatic Tachycardia Syndrome, severe neuromuscular weakness, and some additional neurological disorders. Over the next few months, I saw specialists who diagnosed me with several other conditions. At one point it felt like I was getting a new diagnosis and medication per week. I’m still working with physicians of many specialties to find answers to my complex condition.
Q: What were you doing at that time in terms of work?
I had been a GCU (Grand Canyon University) alumni for 1-year at the time, just starting out my nursing career in the best field possible. I was working my dream job as a bedside pediatric neuro-trauma nurse at Phoenix Children’s Hospital. I adored the children I worked with, and it broke my heart when I realized I could no longer work. I miss that job every day and cannot wait to get back into the nursing field!
Q: We saw on IG that before all this happened, you were really into fitness and had lost over 40lbs. Can you give a brief description of how you got into fitness and what you love(d) about it?
Growing up I had always been active, but a bit overweight. I definitely struggled with weight in my teen years but had so much muscle which came from 5-years of recreational volleyball. After a bad head injury and a severe concussion, I was forced to stop volleyball before going into my senior year of high school. From then on through my sophomore year of college, I did a lot of running and hiking and really cleaned up my diet. I dropped about 20lbs. But it was not until I joined CrossFit Blur in 2013 that the weight just started falling off. I loved the competitiveness of the sport and the mix of cardio and strength! I lost an additional 20+ lbs and built an incredible amount of muscle. I also would run 3-5 miles several times per week and hike as much as possible. I loved the feeling of challenging myself and moving, reaching my goals and setting new ones. I was in the best shape of my life, I even did a 300lb deadlift at one point. Now I struggle just walking across the room or carrying my feeding tube backpack. I will forever be grateful to CrossFit Blur and my coaches who inspired my love for fitness. I miss being active very much and look forward to getting strength one day and going back into the fitness world. There is truly a community that becomes your fitness family and I miss seeing those faces every day.
Q: After your diagnoses, you decided to start Brave Soul Blankets, what is it and how did it all come together?
BSB was founded in January 2017, at which point I realized just how great a need there was for young adults with life-altering illnesses to be recognized, encouraged, and supported. BSB sends handmade blankets to young adults (18-35 years old) who are affected by life-altering illnesses. Our blankets bring our signature “comfort in a snuggle” with a burst of joy and a sense of community in each blanket received.
Q: Why the specific desire to support young adults?
A lot is done for young children and the elderly; however, the young adult population tends to fall between the cracks. Many of these ‘Brave Souls’ have been living with challenges for a very long time aging out of their childhood into young adulthood.
Q: Obviously, you’re a courageous, determined, and gracious person; as a young adult living with a chronic illness what, if anything, would you like the public to know?
That we are not contagious, fragile, or peculiar. We are human and long for a normal life. Instead of staring, ask us about our visible differences. Ask me about my wheelchair, masks, and tubes. I will gladly answer and spread awareness; it is so much easier when people ask why something looks different rather than stare. Even better is to ignore the differences and treat us like you would any other young adult! I would also encourage people to talk to us as they would any other friend. If you see someone left out of an activity, talk to them, invite them to join to the best of their ability. Those few moments of conversation may change someone’s life. For those who are friends with an individual who becomes sick, please know that we still want to be invited to that Friday night party, out to Happy Hour, or simply for a coffee date – even if we cannot attend. The simple invitation means more than words can express! To know we are not invisible, forgotten, and isolated is incredibly meaningful. The novelty of chronic illness can wear off; we often feel alone in our journeys. If you have a friend or know someone in the hospital try to visit them, send flowers, or just a simple text! Nobody chooses to be sick and having a good friend can make all the difference.
Q: Despite everything you’ve been through you’ve remained active – when you’re feeling good, what’s your favorite thing to do?
Because my activities are restricted, I often create things (baking, art, and sewing), read, and spend time with those I am close with. However, when I do have enough energy, I enjoy getting outside on my three-wheel beach cruiser because it gives me a sense of freedom! Being outside, being as active as possible, and doing things any normal 24-year-old would do help me to stay connected to the life I had before getting sick. I recently graduated with my Master’s Degree in Nursing Leadership, so now I have a lot more time to do the things I enjoy.
Q: We’re sure you’ve received a lot of encouragement on your journey, if possible, what’s the best piece of advice you’ve ever received?
I love receiving cards in the mail, especially ones from people who have poured their hearts out and the compassion overflows.
The best advice and encouragement I’ve received came from a friend I knew for 11-months. She battled a terminal illness and recently passed away at the age of 24, after living the most inspirational life. I think of her daily, especially when my battles are difficult. When my faith is tested, I think of the advice she gave me.
- How I need to turn to Jesus with my concerns
- Look for joy in each day – count every single blessing I can think of
- Pray and worship when I do not have the desire or energy because I will always find a heavenly strength and grace for that day
Q: Sort of a tough question, and we mean no offense, but living with a chronic and possibly terminal illness must make you think a lot more about life and death. That said, years from now when all is said and done, what would you like people to say/remember when they look back on your life?
When others think of me, I want them to immediately think of Jesus Christ. To say, “I want to strive for the joy she showed in trial, strength in pain, and compassion for others.” That she did not live for herself but gave her life for others. A young lady who lives for and serves Jesus Christ. Loved her family immensely, and had a passion for life. I want people to know it is all about relationships and serving each other.
Q: The perfect day would be_____________?
A day with all my family in Disney World, with no pain or fatigue and being able to eat everything with no gastrointestinal issues! And snuggling lots of cute puppies – and maybe some very attractive firemen! ?
In support of Brave Soul Blankets, we’ve collaborated on a limited run of one-of-a-kind bottles designed by Phoenix-based artist Sydney Cisco. EVERY DOLLAR from the bottles sold will go directly to help Brave Soul Blankets advance its mission!!! Remember this is a very limited run in collaboration with Melaney and BSB so get your bottle before they’re sold out! >>> SUPPORT BSB <<<
Brave Soul is a 501c(3) non-profit – all donations are tax-deductible
All black and white images of Melaney were taken by James Nwobu.
— TF TEAM