AVM Laughs

I apologize in advance if this account...my account of my experience today, and what seems to happen in different ways on many days, comes off as insensitive. I feel the need to share, because today, I laughed, I laughed until I cried, and I was able to, for the first time, make light of something, that has been affecting me emotionally for quite some time.

I have an AVM in my right occipital lobe. Two days after my 27th birth day it was found in a CT, after seeing a doctor for severe migraine type episodes and what appeared to be vision loss. A few weeks after it was found on CT I was rushed to the hospital with server pain, vision loss and vomiting, was admitted, a series of tests where conducted including an angiogram (all of which made me loose my hair weeks later) and I was assigned some new doctors at the University of Pennsylvania Hospital.

Inoperative is what they deemed my AVM, untreatable was another term given, because of its size, deep location and many microscopic feeders that made it difficult to treat.

Today, I'm left with vision that continues to deteriorate and the possibility of treatment with a combination of both embolization and gamma knife.

Now, as I continue to adjust to visual changes which have left me with most of my left side of both eyes blind, I have had to adjust to the many mistakes I make that many may see as clumsy and I see as down right embarrassing and annoying.

Today, was a typical Sunday in that I went to church with my mother and went to the market to prepare for dinner. We picked up a cake for my brother's birthday. Once we arrived home, I realized it needed to go in the fridge in our basement. With 2 cakes in hand I opened the freezer door to see there was no room, I placed the cakes on the floor, as I came up, with no left vision I didn't see the freezer door coming in my direction and I slammed my head right into it so hard, that it knocked my entire vision black, shook the fridge and knocked this homemade wasp net made of sugar, vinegar, water and salt on top of my head and all over me.

I was so angry, my head hurt so bad and all I could do is laugh. I came up the steps and told my mother why I was soaked in a sticky goo and we both laughed until we cried. Both of us, doubled over on the couch having this cleansing type of laugh, the kind that ended in us gasping for air and wiping our eyes. (my mother's both my caretaker and a HUGE help with my toddler)

Honestly, it really may have not been that funny, but this past year has been so hard on me and my mother, while being a single mother, loosing my vision an my independence. The feeling of being isolated and alone is something very familiar to me and this laugh was just so cleansing, it reminded me that sometimes, it's good to laugh. Its good to just live in the moment and be free within our own laughs. Anger and frustration is ok, but having the emotional freedom to allow yourself to see light and laugh is kind of what gets us all through our unique journey as AVM fighters and survivors....and today it helped me <3

Hi Musemica. Thank you for posting this experience. I am a believer that laughter is the best medicine so yay for your mother and you! You may be interested in joining and posting this experience in the laughter and humor sub-group. Thanks for the laughs.

I love that you laughed. I know this sucks. I’m having a craniotomy next Tuesday. But I’ve laughed more than I’ve cried.

:) Hey Chonne! Thanks for reading the blog post! I am happy you have been laughing. It can be so therapeutic and cleansing. Just the entire act of it requires deep cleansing breathes. lol Please, remain in great spirits as you enter into this phase of your journey. I kind of feel like the journey with an AVM is never over, and this, may be one of the biggest phases for you yet! Your spirit and laughter, I'm sure will be aids in your recovery. You will be in my thoughts and prayers next Tuesday and days following.

I find that all of our AVM's are unique and so are our stories, but what I have noticed is that we all have this love for life that allows us to carry the weight of all of this with grace :)

Good luck! Best wishes!

~Mica

this is so crazy because mine is in the same place! they are saying that i could loose my sight if they were to remove it. Sounds to me that you are trying to make the best out of your situation, lol maybe you could help me with mine?

Hi Rachel! :)

Really, I'm so sorry to know that. I have to admit when I was first diagnosed, (almost six year ago) it was tough. Every single doctor I met. (3 to be exact) stated that it was inoperable. That going in would cause irreversible damage to my sight, and more importantly that the damage would be devastating compared to the deficit I was already experiencing. I couldn't understand why. It was disheartening not only because of the whole "ticking time bomb" notion that most of us AVM survivors hold on to, but also because I was suffering and still am suffering pretty bad with what feels like migraines with visual aura's and vomiting and poor depth perception 4-6 times a week, some episodes lasting all day. So, I'm so sorry to know that you too have an AVM in the occipital lobe because I could only imagine what you've been experiencing, but I am more than happy to support you in your journey as I have a feeling that you would be a wonderful support to me as well. I'm still surviving, some days good, others harder to get through, but I'm an upbeat girl and I never stay down for too long...so, I'll shoot you a friend request Rachel, and maybe we can keep in touch!! Feel free to ask me any and everything. I don't know much, but I'll share whatever I do know.

Hope you enjoyed your day! <3