The day that I was diagnosed with pulmonary hypertension, a doctor waltzed into the room and announced that I had five, maybe 10 years left to live. He had spoken to my parents first about the news. I looked over at my parents to gauge their reaction. Was this really happening? My mama said very strongly, “It will be OK, because we have hope, and we will get through this.” The doctor seemed almost angry by what my mama said. He nearly cut her off to say, “This isn’t cancer. Hope won’t help you.” That was pretty much the end of the conversation. Well… actually, it wasn’t.

I was going to leave this part out, but it didn’t feel authentic. After what the doctor said I threatened to end my life. If hope couldn’t help me… if there was no hope for me, how could I possibly face each day? I was instructed to go have more blood work and go home after my parents convinced the doctor I would be safer at home with them than at their ward. It was a few days before Christmas. None of this felt like the movies.

On the car ride home I tried to process what was happening. Nothing made sense. The disease and the symptoms came on so uncharacteristically quickly for the disease. I knew something was wrong. I went to the emergency room multiple times, but my symptoms were often overlooked because of my age and appearance. If it was caught sooner, I more than likely would have had a better chance at all of this. Instead, I was diagnosed between a stage three and four. I was put on supplementary oxygen that I needed 24/7. I was 25 years old.

As soon as I got home, my wonderful boyfriend Spencer raced over to my house with a bag full of my favorite teas. I had to tell him the devastating news. We of course cried and hugged. I asked him how could I be “dying” if I felt so good? This was something I said a few times to him and my family, which was often recieved with concerned looks. I didn’t know how sick I was. Maybe I was in denial, or maybe I hadn’t completely given up all hope yet, either. I am sure it was a combination of both.

Spring came and it was such a wonderful reminder of what can happen. Plants play dead for an entire winter only to remind us of rebirth in the spring. I told myself that I would get off the oxygen by the time the snow melted. It didn’t happen. There were so many times I felt so pushed down that I couldn’t imagine getting back up. But I did. Life was different, but I made changes to adapt to my new abilities — or lack thereof. I cut my hair short and got a stool for the shower. I bought sweat pants and asked for help when I needed to change clothes. I went to places where there were motorized scooters I could use. I still had hope I would get better. Even when I told myself I had given up, a tiny flame of hope still stayed ignited inside of me.

I slowly started to improve, but not in the way I was told I would. When I was able to walk a little easier (with oxygen, of course), I started to do light actives in hopes of regaining strength. I realize now that if I truly did not have hope, I would have never left my bed to try and work out. I had to turn my oxygen flow up even higher to do Wii Fit yoga. I tried not to feel discouraged, and instead focused on my success. I was able to go from doing yoga for five minutes, to 10 minutes and eventually an hour. I improved on my poses, and was able to do more advanced movements. Eventually I was able to do strength training. Then I was able to turn my oxygen flow lower and lower until I was eventually able to do yoga without feeling short of breath or like my heart was racing. If I lost all hope, I never would have tried or been able to see what I could do.

Today, I mostly use my oxygen for sleeping and heavy exertion. I am no longer in heart failure. My life is still very different, and my future feels like a giant question mark. I had to retire from work because stress made my conditions worse, but was so worth it because I feel as if I improved a little more. I’ve seen countless doctors and specialists to get other opinions. Each one has treated me like a pig at the fair and tried to guess how long I will live for. I have heard five years but I have also heard more than 20 years. Some younger doctors have also told me not to worry about the disease. I believe there is power in living in the present, but I don’t want to lie and say that it is easy living with so much uncertainty.

Two years have passed, but I still try to remain hopeful. I still feel that tiny flame inside of me that motivates me everyday. The tiny flame motivates me to be as healthy as I can despite everything. I eat healthy and still excise every day. I usually walk at least a mile each day. I also like to do yoga, pilates and strength training. I also meditate at least twice a day and try to write articles and draw because being creative makes me feel like I am still accomplishing things, despite no longer being able to work.

A few months ago I stayed overnight in Niagara Falls with my boyfriend. I laid awake the entire night with my oxygen on, hoping to finally fall asleep. We slept with the curtains open and I could see both of the falls, the casino and the cityscape. I cried because there was a point that I thought I may never see Niagara Falls ever again. I also couldn’t believe I had someone asleep beside me who has supported me through all of this. I cried because our trip was different than it would have been if I didn’t have pulmonary hypertension. My life isn’t how I imagined it would be, but I still try to remain hopeful and open. I am going away on another trip this weekend, and hope to do more small trips this summer (I think only one overnight stay is all I could do for now because of the oxygen).

To anyone who is newly diagnosed with something and told not to be hopeful — please don’t give up. Take the time you need to pick yourself up, and find that small flame inside of you. Hope can be a powerful tool. Although hope may not make things perfect, it can help motivate you in ways you never imagined. There were many times I felt like giving up. In fact, I still have days where I feel like my situation is hopeless.

However, hope has powered me to continue to keep trying. Although my future remains a question mark, it is also unwritten. Yes, things are very different but hope tells me to keep trying. I have learned to embrace every opportunity that I can. Celebrate every milestone. Hope has taught to me to laugh as hard as I can. Hope has made me love as deeply as I can. Hope has showed me how to enjoy small moments like the first snowfall of the year. These are the things that can not be extinguished. At first I thought I would never laugh again — but hope teaches you how to laugh harder.

If you or someone you know needs help, please visit the National Suicide Prevention Lifeline. You can also reach the Crisis Text Line by texting “START” to 741-741. Head here for a list of crisis centers around the world.

The Crisis Text Line is looking for volunteers! If you’re interesting in becoming a Crisis Counselor, you can learn more information here.

Follow this journey on The PHight or Flight Project.

The Mighty is asking the following: Describe a moment when you were at a hospital and a medical staffer, fellow patient or a stranger made a negative or surprising comment that caught you off guard. How did you respond to it? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.


Women with pulmonary hypertension (PH) are advised against pregnancy because of the associated risks. It’s difficult to articulate the loss one feels over something they never had. I never had a child (nor did I lose one), but losing the ability to get pregnant is painful in a way where you grieve and mourn. Although no one has physically died, it feels as if a death has happened.

Suddenly the dreams of painting with my son or daughter, opening gifts on Christmas morning and reading them a story before bed (like my parents had done for me) are all gone. Throughout this experience, my friends and family have assured me that although I am sick, I am still the same person. The truth is, you cannot go through something like this and stay the same person. It changes you.

Being a product of Generation Y, I have witnessed the birth and growth of social media. I have witnessed an age with oversharing — yet there is still a stigma around sharing anything unpleasant like loss. I shared on my blog that I haven’t been ready to meet any of my friends’ and families’ babies yet. Other young women with PH reached out to me to say they knew how I felt and thanked me for sharing something they could relate to. I saw other people share my post with their friends and family to help explain what they have gone through.

Pregnancy for women with PH increases the risk of death for both the mother and child. Almost every organ is affected by pregnancy. For example, the most notable change is the increase in blood volume within the cardiovascular system, which is something that could be potentially fatal for someone with PH.

Not being able to get pregnant because of a disease is weird and complex. It is frustrating because many of us with PH can be fertile. This means if I were to get pregnant, it would not be a happy miracle (like most circumstances where someone cannot get pregnant due to fertility issues.) It could turn into a life or death situation. As a feminist, I also realize how heavily society places being a mother on women. Part of me fears that I will never be a good enough partner because I cannot provide a biological family along with all the other worries associated with PH.

At age 25, I was advised that I had PH, and that pregnancy would carry a 30 to 56 percent fatality rate for someone like me. It was a few days before Christmas. I had also just found out that I had stage 3-4 PH, and that I had maybe five to 10 years to live. At this point, I was given too many losses all at once. While I knew I wanted children, I also knew I could not deal with that emotional blow at that time. My main priority had to be getting better, so I tried my best to focus my attention on that. I stored the emotional loss somewhere buried in my mind to deal with once I was better equipped to do so.

Several months had passed after diagnosis. The first winter after diagnosis felt long and the days melted together. When the snow had melted, I was sent to see a gynecologist at the recommendation of my specialist. It seemed like every doctor was worried about me getting pregnant — as if I could get pregnant as easily as one catches a cold. At this point I was so sick I was using motorized scooters in the mall, relied on the help of my mother to change out of my sweatpants into my pajamas, and I couldn’t shower. Getting pregnant was just about as likely as me passing grade 10 math. (Spoiler alert: I didn’t pass grade 10 math.) I called the gynecologist’s office in advance to warn them that it was simply too soon to talk about my situation. However, I believed that I was showing signs of a hormone problem and would like to discuss that with then. I was told this was fine, and I went for my appointment.

I went to the appointment with my father. The building did not have any accessible parking, so we had to park half a block away from the building. It was at this point that I knew the appointment was not going to go as planned. The office was painted in soft colors — colors that had faded over time in the dated office. To the right was a Fisher-Price child-sized plastic house covered in sticky finger prints. Behind the activity center was a collage of all the babies delivered by the doctor’s from the office I was in. The collage expanded across the wall, engulfing the entire office. I watched pregnant women come in and out of the office. I realized this was an office most women went to for something happy and joyous. It was not set up or designed for someone in my position. Instead it was a painful reminder of all the things I cannot have. I slumped into a chair, trying to hold back tears. I grabbed a pamphlet to distract myself. The pamphlet was about saving the stem cells from umbilical cords to help with various diseases like cancer. At this point I couldn’t hold back my tears. I couldn’t have a baby or stem cell therapy (which I feel could possibly help some forms of PH, but what do I know? I only went to school for Fine Arts.).

Eventually I was called back to see a nurse for preliminary testing before I saw the doctor. The nurse asked how I was dealing with my diagnosis. That was a question I had been asked a lot in the months prior. It was a question I wished people didn’t ask because there was no good way to answer. It turned out the doctor I was supposed to see had a brain aneurysm and was off to recover. In her place was a doctor not much older than myself. My previous phone call advising that it was too soon to discuss my current situation was out the window. She showed me different diagrams and pamphlets to ensure pregnancy never happened. I broke down and really started crying. I was ugly crying. She handed me a box of tissues and called me “sweetie.” It was the first time it felt like a doctor a could slightly understand what I was going through. Nearly every woman could imagine what it would be like to find out they could not get pregnant.

However, she still had a job to do. I turned down all contraception methods that contained hormones. I didn’t feel comfortable taking any more medication, especially something that contained hormones. I asked about having tubal ligation done, but she recommended that I stay awake for the surgery because anesthesia is usually avoided for people with PH. I left doctor’s office that day without anything but a bigger emotional wound. Again, I told myself to focus on getting better and worry about this later. I had to prioritize my loses and gain back whatever pieces I could.

Serena holding a mug and wearing a pink sweater with little black hearts
Serena holding a mug and wearing a pink sweater with little black hearts

Now at 27, I imagined myself married and working towards having children in the next year or two. In reality, I live at home with my parents (if I call them my roommates, it doesn’t sound as bad, right?), left my job and alternate between sweatpants (a.k.a. daytime pajamas) and actual pajamas to sleep in. My years at university did not prepare me for this, but nothing really could have.

Since diagnosis I have heard conflicting information on whether I (and other women with PH) could safely get pregnant or not. I asked one doctor if I could take a certain medication, and he said no because it causes infertility. Did you take that all in? What he said was both cruel and ironic. I asked him why he would even try to use that as a reason for me not to take the medication. His answer was that it is possible that women with PH could get pregnant in the future. I was furious. When I went to not one, but two consultations about tubal ligation (which is permanent), I was never talked out of the procedure. I called in sick to work that day.

I realize getting pregnant isn’t the only way to have children. There is adoption and surrogacy. I am totally OK with adoption. In fact, I have always wanted to adopt and worked with adoptive kids at a childcare center I worked at. As someone who is still fairly newly diagnosed, I still have a lot of fears and concerns about having children. It pains me to think I would not get to be the mother I want to be or that I may not get to be here for all of the milestones. I wouldn’t want anyone to resent me if I could not be the mother I dream of or couldn’t be there to see their first day of school or their wedding. Thinking about it now puts a pit in my stomach. For me, the greatest loss isn’t that I can’t have biological children. The greatest loss is that I feel like I can’t or shouldn’t have a family. As if I can’t invest in my future. Maybe these (reasonable) fears are something that will fade overtime, but for now I feel like there is still a lot of uncertainty surrounding my health and future.

This post isn’t to say if you have PH that you cannot have a family. There have been several women who have shared their stories about adopting, and they have wonderful families. I have also spoken to a few ladies with PH who have gotten pregnant and have given birth after diagnosis. There are more and more successful stories for women with PH who have given birth. I just felt it was important to share my voice and experience about this difficult topic because it is fairly taboo to talk about this publicly.

Follow this journey on The Phight or Flight Project.

Being a friend to someone with an illness like pulmonary hypertension (PH) doesn’t come with a set of instructions. I recognize that as a young adult, it can be challenging to try and support someone through an illness like PH, cancer, multiple sclerosis or even depression. It can be hard to know what to say, what to do or how to handle it emotionally.

I know firsthand how difficult it can be for some people to maintain a relationship with someone post-diagnosis. Some friends and family members stopped talking to me after I was diagnosed. Some admitted it was too difficult for them to support me and that they had no idea what to say to me. At first I found their honesty frustrating. They assumed it was too hard without even trying to talk to me once post-diagnosis. As a young adult, I understand that other people my age may not have the experience or wisdom yet to know how best to support a friend with an illness. Even elders can lack this wisdom. The special kind of compassion and patience it can take to support a friend through a journey like this is not universally taught.

I want to share what I have observed through my own challenges so it can hopefully provide insight to anyone else in a similar situation. It’s OK not to know what to do or say sometimes. Illness can be a difficult thing to face.

1. It is OK just to listen.

I recently learned I’ve been guilty of making this mistake. I have a friend who struggles with mental illness, and we often discuss what we are both going through. Because I want to help, I have tried to offer advice in the past. It took some time, but I have finally learned that sometimes it is OK to stay silent and just listen. Listening is often the best way to support someone. Your friend may not be looking for advice but just someone to share their ups and downs with. If you find yourself stuck in a situation where you have no idea what to say, it might be best just to listen and offer your support.

I’ve had “healthy” people try and give me advice in an effort to help. Even with the best of intentions, their advice is often impractical for my situation. As you can imagine, it can be a little silly to get advice about being disabled from someone who is healthy, works full-time and can go up a flight of stairs without getting short of breath. I remember a lot of friends and family trying to comfort me during my lowest of lows after I was diagnosed and was on oxygen nearly 24/7 for over a year. To say I was depressed feels like an understatement. In an effort to comfort me, many friends told me how they would backpack across the world if they found out they had a life-threatening condition and how I should see the world while I could. That is an absolutely lovely idea, but it is also unrealistic for a lot of people facing life-threatening illness. If you can’t climb a set of stairs, how would you backpack across the world?

2. “That sucks!”

I think having a positive attitude can help alleviate some of the suffering we are in control of. However, I don’t think it would be human to try and ignore other feelings like sadness and disappointment when setbacks happen. I also think it is important for the person who is facing an illness (like pulmonary hypertension) to try and find the bright side in situations for themselves. When another person tries to point out the bright side, it can sometimes feel like their struggles are being undermined.

I think it is human nature to want to help, and trying to find the positive can feel like the right thing to do. It can be a good way to stay positive, but it’s important to know when it’s OK to be positive and when it’s OK to be realistic. A friend or family member certainly goes through these struggles and setbacks with their loved one who has an illness, but their struggles are different than the person with the illness. It can seem easier for a “healthy” person to try and point out the positives in a negative situation because they usually cannot relate to what is physically going on. When things suck, it is OK to admit that things suck! I believe it is totally OK to agree with your friend about their day or situation sucking.

Being positive and looking for the bright side isn’t a bad thing, but be sure to be mindful of the situation. For example, pregnancy for women with PH is strongly advised against. It is unlikely I will have children of my own because pregnancy for women with PH has a high mortality risk. Sometimes, in an effort to be supportive, my family will say, “You never know — maybe someday.” I would rather have them agree that the situation sucks. Having them say that it is still possible when it isn’t feels like they aren’t on the same page as me, which I need in order to have their support. If they still think something is possible when it isn’t, they cannot understand my loss.

My boyfriend, Spencer, and I doing the Lethal Weapon pose. He is also my best friend and has been really supportive through the new adaptions we have both had to make.
My boyfriend, Spencer, and I doing the Lethal Weapon pose. He is also my best friend and has been really supportive through the new adaptions we have both had to make.

3. Visit the Neutral Ground Hotel.

If you got this reference, we should be best friends. If you didn’t, let’s just pretend number three is just called “Neutral Ground.” This may seem obvious to some, but you can still talk to your friend the way you did before their diagnosis.

What did you used to talk about? “The Bachelor”? “Making a Murderer”? You can certainly still talk about those things. Those are the interests you probably bonded over together in the first place. I don’t always talk about being sick, nor do I want to. I have only certain people I talk about it with or share so much with. Talking about things too much can also make it more difficult to get over what is happening and can make me relive a bad event too many times.

Sometimes I want a nice distraction! I want to go out with my friends and have a good time. For me, this means I enjoy their company and we talk about the things we used to and have a good laugh. (A good cry is OK, too!)

A lot of things can change after diagnosis. I know I have changed, but I still really appreciate and value catching up with a good friend over a cup of tea. It is something I did before that I can still do, and I really enjoy it! You can still enjoy parts of your friendship that you used to have and still have.

4. Put oxygen on yourself first.

I have only been on an airplane twice in my life. Once to go to Montreal, once more to fly back home. (I watched “Lost” too many times and cried during takeoff, but I felt like a badass flying home by myself.) I learned that in the event of a crash, you must put an oxygen mask on yourself before you can help anyone else. If you run out of oxygen, you won’t be able to help other people. This might feel like the most challenging step for a lot of people, but at the end of the day, everyone needs to practice self-love and care for themselves.

Supporting someone through a difficult situation like illness can be challenging. It takes selfless, caring and special people to hold our hands through these hard times. Sometimes people feel selfish for having their own needs and try avoid tending to them. However, you need to take care of yourself in order to take care of others and keep yourself well. Don’t be afraid to take a time-out and have a bubble bath or whatever else you may do that makes you feel good. It might be a lot on you emotionally to support a friend with an illness, and that is understandable. Be sure to acknowledge and tend to your own feelings as well.

As a friend of someone with an illness, you may have your own set of challenges. Do not be afraid to talk about about your own challenges with your friends. Friendship goes both ways, and often times we want to be there to be support you as well. I like being able to support my friends because I like helping others and feeling as if they can still rely on me. Your challenges may be different than ours, and that is OK, too. Life happens differently to everyone.

Thanks for reading, and thank you for all my good friends and family members who support me.

Follow this journey on The Phight or Flight Project.

The Mighty is asking the following: What’s one thing people might not know about your experience with disability, disease or mental illness, and what would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

I am a laid-back and easygoing person, so the number of things that make me truly mad
is small. Nevertheless, there are certain things I believe should never be said to me or any individual dealing with a chronic illness.

“But there are people who have it worse than you.”

“At least it’s not disease X, Y or Z.”

“You should be more thankful.”

“At least it is not immediately life-threatening.”

“Have you tried this treatment?”

Every time I hear comments such as the ones above, every muscle in my body clenches in pure anger. Some are well-intentioned, but others are seriously misguided. Illness is not a contest, and comparing illnesses isn’t fair or right, especially because everyone is different. Everyone has different symptoms. Everyone presents differently, and everyone has a different pain tolerance. Many things in life are subjective, and some parts of illness are no different.

Meghan wearing a gold and silver headband and a brown jacket
Meghan wearing a gold and silver headband and a brown jacket

Illness, no matter how serious, is a challenging part of living life for anyone. Take it from me, a veteran of 24 hospital admissions in less than three years and countless trips to the operating room, and a daily micromanager of my illnesses.

Each day is carefully planned starting when I open my eyes. Before I even move, I have to do a full-body “systems check” to see how I am doing and how much I’ll be able to do that day. If I overdo it, I will be paying for it for days, and if I don’t do enough, I end up being stressed from feeling behind.

How I feel today is not going to determine how I feel tomorrow or next week. I know this can be a difficult concept for the average person to understand.

Just because someone else’s symptoms may not be as severe as my own, doesn’t mean I’m going to treat them any less. In fact, I would prefer to capitalize on the similarities between our illnesses, create a new friendship and find unique ways to support one another. One simple text, letter or Facebook message can go a long way when someone is having a rough day. Hear about a condition you have never heard of before? Educate yourself! Google is easily accessed for many people, and I know I really appreciate it when someone has taken five minutes to educate themselves on my conditions.

Sitting around exchanging petty comments isn’t creating the change we want to see in the world. It is time to stop comparing illnesses, the severity of illnesses, whether or not a disease is life-threatening, etc., and join together to find efficient treatments or even cures for these diseases so that one day, no one has to suffer, and extended hospitalizations are a thing of the past.

The Mighty is asking the following: Tell us one thing your loved ones might not know about your experience with disability, disease or mental illness. What would you say to teach them? If you’d like to participate, please send a blog post to [email protected] Please include a photo for the piece, a photo of yourself and 1-2 sentence bio. Check out our Submit a Story page for more about our submission guidelines.

We are coming close to the two-year anniversary of the loss of our 6-year-old daughter, Jennifer Lynn Kranz. Her name matters.

I keep expecting it to get easier, like at nearly two years I should be adjusted to this new life I was handed. But deep down I know I am still in the very early stages… and I realized…

On Feb 12, 2013, as she took her last breath, I birthed another presence in our family: the grief baby. Grief is another child I must take care of.

Child loss is like birthing a baby. It is something you must nourish and care for the rest of your life. Something that, as it ages and changes, never stops mattering.

At first, you experience the newborn stage, up every two hours with a crying and needy baby so you don’t even realize you are tired. You are on autopilot. It’s part of you, like another limb. You can never put this baby down or it screams for you to pick it up… to rock it, gently, constantly.

At night you want to sleep, but it seems this newborn hasn’t gotten that memo yet. It seems to need you the most at night. People and meals are at the ready. The days can seem to drag on forever, but the time between now and when this new presence arrived seems so fast. As author Gretchen Rubin said, “The days are long, but the years are short.”

Time passes. This grief baby grows.

At six months out, you can put the baby down and walk away to cook dinner or go to work. You might look at your partner and want them to do more in helping you care for this still young and needy babe. But the truth is you each have very different ways of soothing this baby.

You think you have a routine, a good bereaved parent schedule. But then the grief baby changes it all up. Now it is cutting new teeth, and it’s like you have a newborn again. But you arent used to it anymore and the exhaustion is deeper and more cutting.

Time passes. This grief baby grows.

Now it’s a year old. This first birthday is a big deal. A lot of people remember. You aren’t sure what to expect since you have never had a birthday for this little one. The next day it seems suddenly older to you. So much more grown up.

A year. A whole year. Days were long, but the year was short. Yup.

You think now you should have this whole grief-baby-parenting thing down. You might put pressure on yourself. Other people might start looking at you like you shouldn’t be so tired. A 1-year-old should be sleeping through the night by now.

You might try to dress up your grief baby… put a bow in its hair or pick out the perfect outfit. But it won’t stay like that for long. It will notice the hair bow and pull it out.. it will play in the dirt and muddy up the clothes. You try to keep it looking put-together, but it never lasts long.

And grief baby grows and changes.

Sometimes you get so mad at this baby of yours. It never fails: every moment you try to take for yourself, grief baby seeks you out and climbs right on top of you. More independent now at nearly two years old… but also much heavier… and louder.

You think you have a good handle on it and know what triggers it. But you don’t. Grief baby needs you right in the middle of lunch, because another little girl with long brown hair walks in the restaurant wearing a sparkly dress. Your grief baby wails unexpectedly and you are embarrassed.

Be gentle on yourself; your baby is still a baby. It’s OK if you can’t control it. It’s OK to cancel plans because the baby just needs a nap.

This grief baby that was born as I kissed my first baby goodbye will continue to grow. One day it will even be 6 years, 4 months old. And after that this grief baby will have outlived the one that gave it life: Jennifer.

It will live beyond that. It will be a teenager… I wonder what it’s like to have a grief baby learning to drive?

And then it will get older. Twenties and 30s. By then we will be past the days of tantrums in the grocery store, but it will still be my baby. We won’t talk daily, but when grief baby calls I will answer the phone. Because no matter how much time passes it will still be my baby…

It will have a presence in my daily thoughts and take a prominent seat of attention on its birthday and holidays.

Time passes. This grief baby grows…

Mom with toddler daughter in pink dress
Libby and her daughter Jennifer

It happens; difficulty, struggle, challenge and pain.

On this particular day, Whole Foods won the lottery as the place I happened to be when my candle, burning at both ends, nearly went out. It was one of those moments when my dwarfism became a source of indifference rather than a source of compassion.

Usually I can make do obtaining things that are out of my reach or conquering other extraneous obstacles that stand in my way. It started early, as a kid. Scaling the counter tops in the kitchen, climbing my bookshelf, reaching the pantry shelves — whatever it was, I was able to devise a plan and conquer it. Sometimes I was successful on my first try and other times, not so much. As a child, though, my innocence shielded my struggle. Society hadn’t jaded me yet. Challenges made my confidence wobble, but I never gave in to feelings of complete defeat.

One of my favorite memories goes back to elementary school. My best friend’s mom was a teacher and would give me rides to and from school in her giant Izuzu Trooper. To a little girl topping off around 3 feet 6 inches, getting into such a large vehicle was a bit of a challenge, but nothing I couldn’t handle. To get into the car I would open the door, put one foot on the running board of the car and then hoist myself up holding onto inside of the door. Then, using my washboard abs (what I would give to have those again), I swung my other foot into the car and pulled the door closed. Most of the time my plan was flawless. One day, I wasn’t quite in the car yet, and my friend’s mom began to drive away with me hanging onto the door. From the backseat, my friend and I both began to scream and laugh, and it wasn’t until her mom actually turned around to glance and notice that I was flailing in the breeze, hanging on for dear life. She eventually stopped, and I was able to get back into the car. I really did think it was funny. My little girl ego wasn’t scarred or embarrassed.

One of the most terrible things anyone can experience is the indifference of others. As I got older, it became harder to habitually brush off society’s ignorance towards my stature. I began to lose the confidence and ability to laugh at any situation I once possessed. I was no longer that brave, confident little girl. The continual disregard for me as a person began to drown my positivity.

As a grown woman standing at 4 feet 11 inches, reaching items on the top shelf in the grocery store continues to be a bit problematic. Usually I can climb the shelf or ask someone for help. Usually.

It was just like any other typical shopping trip to Whole Foods. Go in for just a few items and waltz out having bought more than was necessary. As far as dinner was concerned that evening, I knew exactly what I wanted, and the hard taco shells were the last item I had to cross off my list.

There I stood in the international food aisle, staring at the box of blue corn taco shells on the very top shelf… or maybe they were staring at me. Bottom line: in that moment, I wanted that box of taco shells, but getting them was going to be a challenge.

My nonchalant attempt at climbing the shelves to reach them proved unsuccessful. I tried jumping, quickly, to avoid creating a scene. But I barely grazed the taco shell box with my fingertips. My next attempt was even worse. Pushing my shopping cart to the side, I opted for a more gradual ascent up the grocery store shelving. After securing one foot a spot on the bottom shelf, I thought I’d bought myself more leverage and hang time. Nope. I actually ended up pushing every box of taco shells further back on the shelf, completely out of my reach.

My frustration was building. Looking to my left and right, there wasn’t a soul in sight. I’m was in the middle of Whole Foods on a weekday evening during dinner time, and there is no one else in the Charleston area who is having tacos for dinner! Am I the only one who celebrates Taco Tuesday around here?! Ugh.

I didn’t want to give up, so I tried once more to get that box of organic blue corn taco shells off the top shelf. With one hand hanging onto the top shelf for dear life and a packet of taco seasoning in the other, I tried to swing the edge of the box closer to me using the seasoning packet. Fail. The harder I tried to reach those f*cking taco shells, the closer I got to my breaking point. My heart sank. I was angry and resentful. Why couldn’t this be an easy trip to the grocery store?

My overgrowing frustration led me to consider another attempt. Right as I was about to put my foot on the third shelf from the bottom to boost myself up, I envisioned everything coming crashing down on top of me. There I stood, once again, my eyes now beginning to well with tears (I was so frustrated), and there was still not a person in sight to ask for help. Somewhere between the enchilada sauce and chipotle peppers, tacos no longer seemed appetizing.

Whole Foods: 1, Kristen: 0.

A box of blue corn taco shells caused me to fall victim to feelings of complete defeat. In the moment, my heart hurt. The thoughts of “Why me?” were whirling around in my head. Wallowing in self-pity, I wiped away the tears and turned to check out, forgetting about Taco Tuesday altogether. Before I had gotten a full step toward the register, a little old lady rounded the corner at a snail’s pace, talking on her Bluetooth.

There I was, one hot mess, lingering in front of the refried beans, pickled jalapenos and taco paraphernalia. Slightly hesitant, I decided it was worth a shot to interrupt the woman’s conversation to seek her assistance in getting my top shelf prize. Trying my best not to be too socially awkward, I raised my hand (Who does that? This wasn’t a first grade classroom!) to get her attention.

“Excuse me, ma’am.” She looked at me like I was about to ask her to write me a check for $1,000. “Could you reach one box of those taco shells for me, please?” She looked relieved. Without saying a word, continuing her conversation, she got the box of taco shells down, handed them to me with a smile and moseyed on down the rest of the aisle. Quiet enough not to disturb her conversation, I said, “Thank you,” because I was, indeed, grateful for her help.

Blue corn taco shells safely in my cart, I couldn’t quite figure out how I felt. Asking for help can be hard. In that moment, I had two choices: allow my asking the woman for help to take make me feel powerless, or see it as proof of my strength and determination, and step into my power. With my mind continuing to create limitations, boundaries of separation I hated so much, even after I left Whole Foods, owning my strengths was difficult. Sometimes you just can’t help having the tiniest bit of resentment for being you. I found myself saying that I can’t, that I’m not good enough and life is just hard.

Sigh. It happens. It’s normal. The more I resist those feelings, the more intense they become. I have learned to let them in and let them pass. My reality is that I don’t have limitations — I create them.

Having this mindset of “no limitations, no boundaries and no separation” is a powerful one. It allows us to become unstoppable. The truth is that if we let them, our weaknesses can become our strengths. Our disabilities reveal abilities, our fears indicate our potential, failures are lessons learned and our challenges are mere roadblocks, not dead-end streets — if we allow them to be. Certain circumstances may be unavoidable, but our mindset, potential and success are created by us alone.

Living with a “disability” (that is how some people may view dwarfism) isn’t always glitter and rainbows. Asking for help can sometimes feel shameful. The staring, laughing, pointing and rude comments hurt. Sometimes it isn’t as simple as “just brushing it off” and moving on. The pain and disappointment seep under my skin. It can be overwhelming at times. But I am allowed to feel sad, scared and angry. I’m human. I have feelings. And those emotions – they are valid. So are yours.

In reminding myself that I am enough, I know it has nothing to do with me. I am a strong woman aware of society’s ignorance. But how long your legs are, who you love, how much money is in your bank account and who you worship should never be the basis for ridicule or judgment of any kind. It’s the size of your heart, your compassion and your determination that matter.

I am not a sympathy seeker. In owning who I am and opening my heart, I am able to embrace my own vulnerability. This gives rise to courage and strength that sometimes I forget I possess. Sharing my vulnerability with others has brought me empathy, joy, love, the knowledge that I am enough and the hope that you realize that the same — you are enough. No sympathy necessary. Only gratitude.

When we strip away the physical, we experience ourselves and each other for who we are. Each of us has known difficulty, struggle, challenge and pain; they happen. In being sensitive and accepting of this truth, we unite in love. We all have a choice, and those choices matter; whether it’s picking yourself up and starting over, moving on or asking for help. One of the most important choices we can make is to choose love and compassion, for ourselves and others. Indifference should never be an option.

woman sitting in middle of street
Kristen shows off socks that say “Perfectly me”

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