Reality

It’s been over a year since my last post and I have done a lot of living. It does not feel like I am simply going through the motions anymore. I still have an overwhelming amount of appointments, pills, treatments, infusions, tests, etc. But it’s not all I do. I have a fragment of a quality of life. My life is this crazy weird mix of adventures, experiences, challenges, and doctors appointments. In the past year:

I have been in the hospital and I have gone on vacation.

I have had a blood clot in my heart and I bought my first car.

I have had surgery and I have indulged in a spa treatment.

I have been to every specialist you can imagine-neurology, radiology, oncology, hematology, gastroenterology, optometry, endocrinology, cardiology, dermatology, psychology, etc and I have attended several special music concerts!

I’ve gotten shots and taken shots.

I have worn a bone marrow transplant mask, and I have worn a masquerade mask while attending a gala.

I have planned birthday parties for thirty and attended pity parties for one.

I work hard at physical therapy and I relax while getting a massage.

I have eaten nuclear eggs and I have had a glass of wine at dinner.

I have days where my mom brings me dinner in bed, and I’ve been out on a dinner date.

My cheeks have grown to giant proportions from steroids and I went to a Giants playoff game.

I have had many fun girls nights out and I’ve had countless not so fun infections.
I have been helped by volunteers at the hospital and I spent a few weekends volunteering for one of my favorite charities; The Boot Campaign.
I have had a brain MRI and I was a bridesmaid in my brother's wedding.
I have been lectured about taking my medication on time and I have given speeches about cancer awareness.

I am doing my best enjoying the good and dealing with the bad-just like everyone else. I work hard to find a balance so that I am able to experience the enjoyable things I want to do while taking care of my body and doing the things I have to do.

Someone asked me why I hadn’t gone back to school, and they did so in a judgmental and condescending way. Usually, I clam up and I explain that I take chemotherapy, I go into my spiel about not being able to give it 100% of my energy. Sometimes I share the anecdote of throwing up in front of my entire college class on the first day of school (true story). This time, I looked them in the eye and I said, “I am enjoying my life right now. I am travelling and volunteering. I am doing things that make me happy and healing. I love school, and I will get back to it when it’s my time.” It was an empowering moment for me. I wasn’t ashamed or regretful of my reality like I have been for so long. I wasn’t looking for approval or validation to qualm my insecurities. I was comfortable in my own bruised, scarred, pale, and steroid fat skin.

My reality is swallowing over thirty pills a day, I take naps, I occasionally wear makeup, I have nausea, stomach pain, headaches, and body aches on a daily basis. The truth is that five years later- I still have more sick days than I do healthy. I do more hard things than I participate in fun events. Phoenix Children’s is on my speed dial, I am on three forms of immune suppression, I nap daily, and I have bald spots. But I have improved. No matter how small and slow the improvement has been- it feels remarkable to know I am moving in the right direction. I never would have been able to do all of the things I listed above had I not gotten better. Sometimes I look back at where I have been and I drop to my knees overcome with gratitude acknowleding how far I have come.

Like any human being, I am guilty of hiding my scars, my weaknesses, my insecurities, and my flaws. Whether it's a coping mechanism or an attempt to be positive-I post more pictures of the good things than I do the bad. I say “I am fine.” when I am not. I hide my actuality because I don’t want to be seen as just the sick girl. It has been five long years and if I posted every picture or told you what my days are really like- I am afraid you would look at me like I was foreign, treat me differently, or pity me. But I did what I felt was right at the time. And now, I am delighted to share that I am in the process of writing a book about my unconventional “climb”. It is remarkably therapeutic to be so boldly honest.  I am vulnerable and unfiltered pouring my heart on the page. Writing it is both scary and liberating. For what feels like the first time since I became ill, I have come to terms with what has happened. I am learning to accept the reality of my life while maintaining hope that it will continue to improve. I have never felt so alive.