Grace Gingrich: 35+ Cavernous Angiomas

"Too numerous to count" - Living with Familial Multiples 


There is a certain macabre humour in this:  On Remembrance Day (November 11, 2007) I was working feverishly to finish some psycho-educational reports.  I remember not feeling well all week.  That morning I decided I needed to break and head for a nearby provincial park to walk in the forest.  I remember hoping the fresh air would help me get rid of what I assumed was a impending migraine.  To this end I contacted my walking buddy and we set out for our walk.  I explained I wasn't feeling that great and had been ill for several days.  After walking almost a mile to the entry of the park, I became unstable on my feet and suddenly felt like we were chatting in a gym; a huge echo resounded in my head.  My friend (who later told me my eyes were rolling back in my head) asked if I was ok.  I insisted I was fine and so we walked a little farther.  As I stumbled into a tree, insisting I was fine :) she said "You are NOT fine!" and grabbed my legs yanking me down until I was seated on the ground.  She quickly flagged down a pickup truck and asked if the person would drive us back home (a mile away).  I remember being afraid when she got out of the vehicle first, that the man in the cab would "take me away".  At some level, I knew I was vulnerable despite protestations to the contrary.

Once home, my youngest daughter contacted my spouse, who fortunately recognized pre stroke symptoms and told me he was calling for an ambulance.  I remember being adamant that I would not travel in an ambulance and that the pain in my head was excruciating.  To make a long story shorter, my husband drove me to emergency.  In my minds eye, the journey was made late at night and it was very dark.  The reality was a bright sunny day.

As we entered the doors to the hospital I had a huge Itonic Clonic seizure caused by the intra cerebral haemorrhage in my temporal lobe - that then spread.  Subsequently, I spent the next 5 days in ICU.  When asked why I was there I told everyone that my spouse had accidentally run me down with a wheelchair.  :)    I see great humour in that now.  (Apparently I had lost all muscle tone going through the emergency doors and so my feet were drooping and the wheelchair had to be pulled backwards rather than pushed).  :)

It was three months before I could remember what we had eaten for dinner the night before, and almost a year until I was able to stop pulling myself up the stairs using the handrails.  (Try using the stairs walking flat footed without pushing off using calf muscles and you will soon discover the difficulty involved.)  I kept telling the doctor I was having difficulty but not articulating the problem because, like a toddler first learning to navigate stairs, I didn't identify what was needed at first.)

I have over 35 cavernous hemangiomas in my head "too numerous to count", some in my spinal cord and a few on my skin.  I have had a cavernoma removed from my kidney. Two of my three children have cavernomas.  I now recognize I had my first significant bleed at 19 (when I ended up in emergency and was placed in isolation and diagnosed with some type of flu).  The week before my last child was born I had projectile vomit that hit the bathroom ceiling, probably a seizure of some type.   Another bleed left me with aphasia where I lay on the bathroom floor after a "migraine" insisting that people "slop slutching shlee" (stop touching me).  We didn't have MRI's back then so I was not diagnosed until the mid 90's.  I felt like I was viewed with suspicion and wondered myself if I was just neurotic as I was shipped from doctor to doctor.  Getting diagnosed was in some ways a relief.

Lately (for the past 6 months) I notice this pattern:  I am good for two weeks, but week three is headache week.  I end up sick and vomiting and lose bowel and bladder control as is typical for me with my "migraines" and then I sleep for two to three days, literally around the clock.

Reading up it seems really harsh but the blessing of chronic illness is that you learn to really enjoy the "good days".  I am not advocating "put on a happy face" but there are some good things.  When you suffer, it is an opportunity to learn compassion.  You learn no one likes a complainer but a true friend will understand.  Chronic illness teaches you patience and the ability to pace yourself.  I have learned that in the area of cavernomas I am knowledgeable  and knowledge is power.  I no longer have the prestigious job I once did but I am learning that I still have the most important things in my life; family, friends, sunny days with fresh air and the ability to laugh.  I am learning to understand that not everyone will understand my journey but we deserve respect just because we are human beings.   I am learning that it is ok to say what I think and that sentimental or not, my words have value and my life is precious.  I am still learning to trust my own judgement about this wayward body that is mine.

Those who share, encourage me and have taught me to share too.  Today I read in a forum about someone whose body seems to hum with an electrical current at times.  I immediately thought, "thank God, I am not crazy! Someone else has this same experience too! I am not alone."