I grew up with a rare disease, pyogenic arthritis and pyoderma gangrenosum (PAPA syndrome). My disease acted like typical inflammatory arthritis for a long time, but it wasn’t. PAPA is an inherited immune disease and has some different effects, depending on the type of genetic mutation. Mine was close to a 100 percent mutation.
Before I was 10 years old, I just had joint flares. Once I was 10, I developed new symptoms. I developed an open wound from a bruise, and this was the beginning of ten years of intense pain, surgeries, and hospitalizations.
When I had a wound open up, it wouldn’t heal. It would stay open for months, but most of the time it stayed open for years and would become larger and deeper as time went on. I had open wounds all over my body, sometimes three or four at a time.
The worst wounds I ever had were two huge wounds on my legs, and they took up the entire calf; at times, they were bone-deep. They stayed open for five years. Staph and MRSA were normal occurrences; there were many times where I almost died from infection. Suffice to say, I had a very difficult 20 years of life.
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Luckily, after a bone marrow transplant in 2010, I no longer have the disease. But all the damage to my skin and joints are left behind. I have many scars, two knee replacements, and an ankle fusion – all at just 29 years of age.
Though I’m in the best shape of my life and building my body back up, sometimes I feel so much anger and sadness, it threatens to swallow me whole at times.
I hate my body for being so weak, and unable to do simple tasks other people have no problem with. Just because we are disabled, doesn’t mean we are supposed to feel broken or like we are less than other humans. But I feel it all the same, and I’m constantly trying change my mindset and embrace myself for the unique person I am.
I have been doing mixed martial arts for a year now. I’ve adapted the moves and mixed them with my cane, turning my perceived weakness into a strength. Through martial arts and writing, I make sure I am being honest about what I can do realistically, while encouraging myself to keep moving forward, using the willpower I cultivated through many years of pain and illness.
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I am constantly trying to change and become a better person. I make sure I am gentle with myself and my body. I remember how grateful I am for the small things, like being able to walk without agony, and being able to move again without sitting in a wheelchair.
We each have our own crosses to bear and we each have an inner light we can call upon anytime we are having trouble with ourselves.
I am disabled, but I am not broken.
I have scars, but I’m not ugly.
I may need help with many things, but I am not weak.
These are the ideas I’ve been cultivating and clinging onto while I keep moving forward. We are all strong when it comes to surviving, and we never know just how much we can take until we’ve survived those painful times and come out the other side.
Hopefully we come out wiser, knowing things about ourselves to help us keep moving forward and surviving another day. If you feel broken and useless at times, remember that you have survived difficult times before, and you will overcome your obstacles and see the light at the end of the tunnel. If you can just be patient and hold on till then, it will be worth it.
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It’s always darkest before the dawn, and once dawn comes, its beautiful light will shine down on you, reminding you that you are still alive and you were able to overcome all the challenges. All we can ask is to become better people once we have faced the pain and sacrificed so much of our lives.
Is it worth it? I like to think so.
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