Cursing My Disease (or, not the way to start a day)

meg.jpgThis morning I cursed my disease.  The genetic disease Neurofibromatosis (NF) is always with me, as are the 30+ tumors on my body.  I am a strong woman, but there are days when it defeats me.

I don’t sleep as heavily as in years past.  Regular bouts of insomnia have interrupted my sleep over the last six months.  Stabilization is slowly coming, and I’m grateful for that.  This week was a good week, so I am surprised at this unsettling feeling.  Sometimes that quick moment of stability is disrupted and I cannot contain my sadness and frustration.

This morning I awoke too early and anxiety attacked.  Thoughts raced through my head that I didn’t want to think about (friends, family, health, past, future, present…).  But the worst of it was the bleeding coming from one of the small tumors on my face, just to the left of my chin.  “Fuck it!” I said as I popped out of my bed.  Who wants to deal with that at 6:30 am on a Sunday morning?  It’s a little thing and was not profusely bleeding, but this is a tumor that is normally soft.  Yesterday it became hard, is sensitive to pressure and is an open sore.  This has happened before, as I am sure it will happen again.  Usually the swelling dies down and the tumor returns to normal.  Though the bleeding was not great, it is certainly concerning…and in my anxious state bitter thoughts rang toward my lack of health insurance.  Bitter thoughts spewed against this disease.

I’m growing weary of this disease that changes and progresses.  I must deal with it the rest of my life as I continue to live a public life in the world.  In spite of my embarrassment for a suddenly larger irritated tumor on my face, I must wake up and go about the day, talk to the people who saw me the day before, visit the grocery store to buy food… My strong faith keeps me going, most of the time.

When I woke up this morning I wanted nothing to do with the world or anyone I know in it.  Instead, I wanted to hide all day and obliterate the tumor from my body.  I didn’t care enough to pray, either.   It wasn’t just this morning—it bled last night before bed, too.  I watched the sunrise, with a tissue clutched over the tumor, but met anyone’s presence with me as an intrusion.  Obliterating the tumor and hiding are not healthy options.  But it isn’t easy to go on.  Oh, I love life and those who share it with me and all those I have yet to meet in this life.  I don’t know what to do, except continue to wake every morning and call myself beautiful, even when my tumors ache, change, grow, or cause discomfort.

God give me the strength to arise graciously even when I curse what is happening to my body!

Yet as I write these words, I know of a suffering even greater.  I am mourning the loss of someone I only know through acquantance from my hometown.  A young man and his family grieving the loss of his father—suddenly, due to a brain aneurysm.  sigh.

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Spiritual Struggles with Disease

“You are beautiful” they chorused.  “You are sexy.”  My lip was quivering, and I could scarcely respond.  The group looked at me intently and lovingly while tears rolled down my face.  I wanted to repeat those words for myself, but my body wouldn’t let the words pass my lips.

I closed my eyes and took a deep breath.  A smile formed.  I had just been told I’m beautiful and sexy by the three males in my group—a married man in his 40’s, a Dominican brother wearing a habit, and a 20-something young man.  And it was safe and comfortable for all to do so. This moment, one of the last times my chaplaincy group met, was one of the most intimate I experienced during the 11 week unit.

The issue I had brought before the group provides some context for this intimate moment:  As many young women do, I have struggled with my appearance.  In my situation, my physical appearance and body have been painful–physically and emotionally.  I was born with a genetic disease called Neurofibromatosis, which among other manifestations, causes tumors and birthmarks.  The tumors are presetly unpredictable, unstoppable , and can grow anywhere on the body where there are nerves.  The gene is dominant, thus each carrier has a 50% chance of passing it on to his/her children.

I have 30+ tumors on my body, mostly small and underneath the skin.  The problem area has been the right side of my face and neck and my right ear.  The tumor and brithmark that define my face cause me the most grief, yet I despise all of them.  How can I call this body beautiful?

Having this disease has forced me to reflect deeply on a regular basis about myself, my faith in God, and perceptions of others.  I’ve had three surgeries and I know the pain of being in intensive care after 9 hours in the operating room.  This disease gives my mind a reason to destroy my self-confidence and self-love.  This is why it is so hard for me to say, “I am beautiful,” and mean it.

Long ago I rejected the God of the Purpose Driven life, who as author Rick Warren states, makes us right down to our DNA.  That’s bullshit, I say.  I don’t want to believe in a God that would create a genetic mutation and intentionally give it to me…so what, if it’s a gift so others can admire and receive strength?  Well, they do.  But courage, strength, and hope are often all I have when facing something without a cure, that probably won’t kill me but has potential to cause more discomfort…maybe even a brain or spinal tumor.  I’d give the extra courage and admiration away if it meant I could live without the presence of these tumors.

So today I visited a genetics clinic in Seattle and will begin the process with doctors and surgeons about what is going on with my tumors and if surgery can be done.  This has been on my mind for months now (and added to my emotional swing this week), and today the process has officially begun.  May I find a job soon with good benefits!

When my chaplaincy group supported me, my heart was touched.  I need that kind of love and support.  Three years later, I still struggle…and it’s so hard when there aren’t many honest moments for another to say to me, “you are beautiful, you are sexy.”   The strength and courage I posses are qualities that many people admire about me.  This disease, while constantly challenging my faith, has also strengthened it.  I have experienced a deep love of God through the faith, doubt, surgeries, and recurrence of tumors.

However, God’s love cannot completely satisfy the longings of my heart.  Some of the loneliness I express in these posts have surfaced when I see good friends dating.  So lovely together.  And I go to bed at night alone and weep, while my hands rub over my tumors.   Is anyone ever going to stare at me with love to say, “you are beautiful!”  The only stares I get are people curious about what’s on my face.  Will anyone actually want to touch my face, my arms, and all the other places where there are tumors?  I don’t know, but I can hope…

This is long and deeply personal.  But one reason for others’ admiration of me is that I am able to share such struggles with candor.  I’ll end by professing this disease has given me courage to boldly proclaim the Resurrection.  By believing in the resurrection, I know there is more than this, and that I don’t suffer alone.

Christ is risen.  He is risen indeed.  Alleluia!