I could make this post a fairytale, one complete with unicorns and fairy princesses and personified animals singing about honesty and sharing, but to do that would be a lie because that's not disease and that certainly is not any disease of mine.
A couple days after my last post, I went to see my doctor for a regular follow-up. In the examination room, he asked to look at my legs. Just before sitting on the table, I looked at my right foot where I could see a small pool of orange fluid had collected. My doctor didn't know what it was. Neither did I. My instinct was to blame the doctor for being a slob. I find his fresh-from-med-school-know-it-all attitude to be extremely off-putting, so I relish in the moments I can prove him wrong or unprofessional. That was before I felt my leg was wet and saw that the fluid was coming from a pinhole in my right knee.
He poked it. Of course, it hurt. He pressed around it, kneading my flesh like pizza dough, that hurt too. Words like "infection" and "hospital" were thrown around. Two of my least favorite words. Yet, they seem to follow me everywhere. The ultimate decision was a trip back to the plastic surgeon, whom I had left not thirty minutes before. She took one look at my leg, offered an authoritative nod and said "Oh, it's not infected. I just have to cut away some of the skin". Fair enough, I assumed. Open it up a little, slap a band-aid on that bitch, and send me on my merry way, but that would have been too easy. She cut through my skin, peeled layer after layer away and deposited them in a piece of bloodied gauze as if they served no purpose.
"What are you doing?"
"Oh, this is just weak skin. You don't need this."
Weak or not, the skin is mine and because I am primarily composed of skin and bones, that tissue is essential to my makeup. When she finished, there was a gaping hole - one that, she explained, would have to be packed with gauze two times a day with different creams for morning and night. Like I said, I had been to see her earlier that day and she practically sung the praises of the progress my first wound (the wound on my thigh) was making. There was still a way to go, but the wound vac had done it's job and replaced my canyon with new tissue that was eager to heal. I felt like God finally threw me the bone I had been praying for. As with so many of these occasions, I was wrong. I was left with the hole in my thigh and the hole in my right knee. That makes two.
A week later I found another fluid bubble underneath the skin on my left leg. I had to undergo the same process again. Cut. Peel. Dump. I now have the hole in my thigh, the hole in my right knee, and the hole in my left knee. Three. Add to that, one on my right elbow, another near my wrist, and a fresh new one that could be mistaken for a lunar crater on my left arm. Six.
There should be a Sesame Street count-a-long for the amount of wounds I have on my body.
It's been seven years. The worst should be behind me, not around the corner. The most painful part is watching everyone else live my dreams; that hurts more than any physical pain could. They shamelessly whine about how their lives have been made unbearable by the boy that doesn't like them, or the date that went wrong, or because they had to change their Facebook password (true story).
I'm not ashamed to say that I would kill to have their problems.
What's worse is the state of arrested development I've been in since this all began. When it started I was 15 years-old and while all my friends were being fifteen and doing fifteen-like things, I was in the hospital, hooked up to an IV, watching the most basic form of cable available. The missed years kept piling on, as did missed opportunities and in some ways I feel like I'm still in my early teens, because I've yet to experience a youth.
I wish I could say that I always have a positive outlook on my situation, but that would defeat the purpose of this blog. I don't always have a smile on my face. My head isn't always held high. Sometimes, I have trouble standing tall. These last few months have been about learning to see past that, to continue in spite of the setbacks, which in all honesty, is a daily battle; a battle I intend to win one day.
I was thinking of getting something to commemorate my future triumph; something I could look to for encouragement. And so, I thought of the
Giles & Brother Railroad Spike Cuff.
They do custom engraving and I want a word stamped on the cuff that ignites that fighting spirit. I thought of words like "persevere" and "survivor", but they all seemed too clinical, too heartless. Then I came up with "Invictus". Not Invictus as in the movie where Morgan Freeman plays Nelson Mandela, but Invictus as in the English poem that speaks to the state of mind I'm working towards; one of unshakable faith and courage. A more cost-effective method would be to write "invictus" on a Post-it or recite it to myself as I'm brushing my teeth, but there's something different about wearing it. In wearing it, the word becomes a shield or a tattoo. It becomes a part of me. When you're so far down, it's all too easy to forget to look up and this brass beauty could help prepare me for the victory ahead.
