Identity and Lymphedema

The reality of my life with lymphedema has hit me particularly hard lately. I am on summer break – which always brings new challenges in the management of my lymphedema. This past month I have been working for a greenhouse selling their plants at a local Costco. I was so excited to start this job as I love working with plants and it was something new to be involved with. It was a temporary job, running only a month long, so while I knew there would be a lot of standing I shrugged it off and figured I’d be able to handle. Well, I handled, but it reminded me of my limitations that I so often try to forget. I never really considered the fact that I just CANNOT do certain jobs. I’ve generally powered through and worked despite the chronic swelling and pain that comes from having a standing job, but it’s always been something that has caused me excessive stress and carries with that a fog of depression that I’ve so often felt. In conclusion, I have worked hard to avoid standing jobs: until this last month. As you can imagine, after standing long days that I haven’t been used to doing in a while, I was feeling down.

 

My lymphedema never leaves my mind. If I work, I’m pretty much completely shot for the rest of the day/night. I must go home and elevate/rest my leg. If I go out one night with friends and have a few drinks, that’s usually my gathering for the week as it takes a toll my management. Being “young” when you have lymphedema is a whole other story.

 

This past month has also brought something else new to my life – the dating scene. I have been lucky to have had some incredibly understanding guys in my life who did everything they could to learn about my condition and accommodate me in anyway I needed. Going back into the dating world and realizing not every guy is going to be like that is just plain hard. There’s always so many questions in the back of my mind, when do I tell them? How much do they have to like me for them not to care? Moreover, what are they going to think when they realize just how much work and carefulness that goes into its everyday management? How do I be open about the way it makes me feel without bringing down the conversation? I know it shouldn’t matter but the fact of it is, is that it does.

 

I read an article recently in the New York Times, “Seeing Outside the Box of Disability” and it described to a tee what I’ve been conceptualizing in my mind for a while now but have had troubles expressing. Howard Axelrod has a visual impairment in one eye and describes his own struggles in identifying as a disabled person. He comes to the realization that it’s not important what you identify as but who do you identify with? He says, “Asking myself this question helped me recognize changes in my own identity, subtle shifts in my attention and empathy that occurred after my accident. Without quite realizing it, I had begun to identify with anyone whose life threw into question normative assumptions about how daily life works.”

 

This resonates. I do social justice work because of the empathy I’ve developed through my hardships that have been largely due to my lymphedema. It is a daily reminder for me of all that makes me different and is harder about my daily life than the average individual; and it is also a reminder of all the privilege and blessings I have as well. I can look into another person’s eyes and understand they may feel this way too sometimes.

 

Link to the article I discussed above:

 

 

My No Barriers Pledge

This past year I worked as an intern at No Barriers, a non-profit in the town I go to college, that’s motto is “what’s within us is stronger than what’s in our way. ” Erik Weihenmayer (often known for being the first blind man to climb Everest) started No Barriers to inspire others to harness adversity in order to create a life of purpose and impact.

I spent the year assisting with their youth specialty programs which include all the domestic and international expeditions for diverse populations such as deaf/heard of hearing, blind/visually impaired, children of fallen soldiers and low-income youth.

Although I learned many professional skills during my internship, the most impactful change has been the way that I look at myself.

I grew up with lymphedema during a time when their was little awareness about what the condition is and how to treat it. Unlike today, I wasn’t connected with any sort of lymphedema community.

When I was born the doctors told my parents I would be an amputee by the time I was five years old. Luckily, my parents didn’t take that as an answer and did research of their own. They flew me out to New Jersey to get treated by one of the only lymphedema specialists in the nation.

Once home, my parents did their best to keep my leg managed, but with no doctors in Colorado it wasn’t easy. At one point, my left leg was probably at least three times larger than my right leg. The only shoes I could fit in when I was a toddler were moccasins and as I grew older I had to have shoes specially made to fit.

As a little girl I always wore dresses and showed my leg openly but that changed quickly once I started to get comments from many peers around me. The most impactful being the girl with the “tree leg”.

My leg grew so large at one point I didn’t feel comfortable wearing regular jeans so I went to school in sweat pants. Everyone always wondered why.

Today, I no longer hide my leg in sweat pants or feel ashamed of the condition. And now looking back – it seems crazy that I let myself feel so much shame.

This past year has by far been the most transformational year of my life. A year ago, I was afraid to show who I really was. Now I embrace the questions that I get about my leg as another opportunity to teach someone about my story and about lymphedema.

A little over a month ago I attended No Barriers’s Summit – an event that brings together people of ALL abilities to do adaptive recreation and other activities together. I was surprised to find a considerable difference in the way people interacted with me when I was wearing a dress (showing my leg) compared to when I wore jeans. I had a plethora of people coming up to me asking about my leg and instead of pity, it came out of pure curiosity – a look of understanding and acceptance. At an event filled with people of differing abilities I no longer felt like the odd one out. I felt like someone who had something to offer.

DSCN3685

The creation of this blog is my testament to living a No Barriers life. It is my way of sharing my story in the hopes that other people will share theirs too 🙂

Pictured above is my friend Adrienne and I reppin’ our No Barriers Flag.

ALSO – if you want to check out No Barriers this is their website:

http://www.nobarriersusa.org

Does this condition make me beautiful or does it make me imperfect?

A short narrative I wrote a few weeks ago when I first started to think about making a blog:

I’m home for the weekend and my mom and I decide to go to the grocery store. What would usually be a normal experience feels anything but. In my new Tevas you can clearly see my larger left foot which is covered in a beige compression garment. It’s never been my favorite thing to look at but right now I feel content.

My mom and I are going to what is basically the only grocery store in my small hometown, which is often known as the place you will see everyone you know. This is my first time openly wearing my compression garment in such a familiar place. Typically, I’d avoid letting my swollen left leg be shown at any cost. I’d rather not get the questions about “What happened?” or “What is that you are wearing?” but this time, that all doesn’t matter. I’m thinking, “People can ask me questions, people can stare and wonder but it’s not going to change how I feel.”

At this same time a year ago, I was wrapped from toe to thigh in bulky, hot foams and bandages. This is a necessary component to treating what causes the swelling in my leg, lymphedema.

I had to take a month off work so I could drive an hour away daily to get manual lymph drainage treatments (a gentle massage that moves lymph fluid out). And in all honesty, it was just plain hard. The wraps were uncomfortable, making it hard for me to sleep at night and they were hot during the day when all I wanted to do was hang out in the summer sunshine.

Although the physical discomfort didn’t make things easy, the most painful part was the emotional discomfort I experienced. Never had I felt so alone. I’d often hear about my friends latest outdoor adventures together while I found it hard to walk from one side of my house to the next in all the bandages. Most of all, I didn’t feel worthy. I felt abnormal, not able to do normal things, I felt stuck.

There was so much shame, even a year ago, that I’ve struggled to overcome my whole life, and here I am sitting here in the car and it all doesn’t matter?

I think about what’s led me to this point of acceptance and there’s a powerful experience behind it with many supportive people along the way who have offered nothing but unconditional love, acceptance and empathy. And still, the most impactful change has been the way I look at myself – not the way others look at me.

Does this condition make me beautiful or does it make me imperfect?

The answer is both. I am beautiful because I am imperfect. I am beautiful because I’ve reached beyond what could have otherwise been devastating to find purpose through my flaws. And most importantly, I am beautiful because I am willing to be myself.

I’m here to share my journey to foster connections with others who might be feeling alone and to spread awareness about life with a chronic condition.