A letter...

Dear PVNS,
I don’t remember the exact day that we met. You became familiar to me before I knew your name. Your presence grew daily until you became all I knew. It’s hard for me to remember my life before you entered it. You changed me slowly, yet greatly. You made your presence known by limiting me. You gained your strength by taking mine. Once you inflicted unbearable physical pain, you attacked my mind. You made me doubt myself, my senses, and my abilities. You changed my outlook, from seeing possibilities to seeing everything as impossible. You stole from me; you took my time, energy, pride, dignity, modesty, and control… you stole my life. The longer you attached yourself to me the weaker I became…physically, mentally, emotionally… you weakened the person I was. You led me down a long road of pain, depression, and anxiety. You caused me to feel inept, undeserving, and burdensome. You made me isolate myself and keep people on the other side of my strong walls…

I knew you were toxic even though you remained nameless…Because of you, I was tested and pushed to low places. You were determined to survive, to outsmart doctors while I was still suffering. Normal became anything but…You made me endure painful procedures to find your identity. After a few years, after pain medication, after antidepressants and anxiety medication, after draining fluid from my knee with a colossal needle, after cortisone shots, and after an arthroscpic biopsy, I heard your name in passing. I was told your existence was so rare that I didn’t need to consider you as an option. Although you were unlikely I needed to know about you. Knowledge was a way for me to begin to reclaim myself. Your reputation was negative, but I needed to know as much as I could about you. The road to our official introduction took us to Boston.

Pigmented Villonodular Synoivitis… your ominous name… you were the reason for what I had been going through… your name was a gift to me. Giving you a name confirmed my sanity… proving that you were real, not something I was creating. You validated my pain and suffering and gave me permission to no longer beat myself up for not being able to do things… Your name provided direction and gave me the opportunity to start once again navigating my own life… though I needed a lot of help with that task. Meeting you…began a power shift…away from you, towards me. You came so close to breaking me – so completely. Identifying you eradicated some fears while instigating others. You were frightening because your impact had already been so huge and a future with you had some horrible possibilities…terms like malignant tumors, bone degeneration, and amputation were associated with you.

My only choice was to remove you, though there really was no choice. You had been extremely aggressive with me for years and I had no choice but to return the favor. I was fortunate to have the PVNS expert on my side. You were not a stranger to my superhero and he knew how to proceed. More new words…. An open anterior and posterior synovectomy was your kryptonite… an extreme procedure, very invasive. But it was my only hope… my ONLY hope… and I had not felt hopeful in a long time.

The day we were officially introduced was a day that offered me some freedom. I had reason to cry and had proof that something was really wrong. I was able to break down in front of my friends and family because I knew I had a valid reason for why I was in pain. I didn’t have to feel like I had simply been complaining about soreness. That day I committed to allow my superhero, someone I briefly met, to alter my body. Weeks later he did just that with two massive incisions. He removed you from my body, but you were not out of my life. Physically recovering from the surgery has not yet been completed, but it is close. Emotionally recovering will take longer…

It’s almost a year after you were removed, and I just learned that you have not returned. I am free of you. You are gradually exiting my life and because of the damage you have done to me, I am struggling to believe you are gone for good. I want to believe it, but do not want to trust in that only to be slapped with your return later on. You made it easy for me to expect the worst… you drained my glass so that it was always empty, never even half full…so I need time to slowly pour my faith back into the glass and believe there is no crack from which it may escape.

You will never be absent from my life… my scars will remind me of your existence…and I will think about the journey you caused… but I will not give you power to hurt me any more… I choose to see my scars as postcards from this trip. They say: I will not doubt myself again, I will fight even harder for what I know is true, I am even stronger, it’s ok to lean on people, people will not let you down, my relationships with people are even more meaningful, I know how much I am loved, and I know that I can make it through something even when there are times I wanted to quit. And they say, it’s part of my past…not part of my future.

PVNS you are powerful. You are no longer welcome, not that you ever were. You arrived uninvited and remained even after you have been kicked out of the party… But it is time for me to say good bye to you. It’s time for me to take away your power. I choose to use your power to make choices that will make and keep me strong. My life is once again mine and you no linger dictate what I can and cannot do. I fought you… with a strong army on my side.

I have shed so many tears because of you. Because you were painful… because I had to create tools to help me physically pull myself up… because you got stronger and I got worse… because I regained the weight I had worked so hard to get rid of…. Because walking was excruciating… because I doubted myself… because I thought people didn’t believe me… because I was unable to see things getting better… because you damaged my spirit… because you turned me into an angry resentful person… because you allowed me to isolate myself… because you altered the way I saw who I was… Tears were also shed because you existed which meant there was a way for me to get rid of you, there was hope…There will most likely be more tears shed, but not because you are defeating me…but because I have defeated you… and for that… I am grateful.