Coping Techniques - AVM Style

My family is pretty open.  We talk, a lot, about everything.
There are no secrets on the hill; been there, done that and do not wish to repeat the experience. 
John and I have been living with my monster, aka AVM, for about 20 months; 14 post Gamma. Our children, extended family and friends about 18 months.  We still have a long ways to go.

I can't always hide how I'm feeling physically because sometimes it is obvious, despite my excellent acting ability.  We talk about my symptoms and side effects regularly.  We have plans in place in the event of an emergency.

What we haven't talked about much is how it's effecting them.

Obviously there has been an impact.  I know longer drive so I can't always be or get to where we need/want to be.  I know longer work so there is less income.  It also means that John is working more.  I am home all the time and that has pros and cons.  I can't always be mentally or physically available to them like I have been or would like to be.  When they are in school it is less noticeable.  We compensate and juggle the best we can but we are not always successful.  There is lots of planning and little spontaneity.

So this week I took an opportunity to find out whats going on with them.  How they are really feeling. What came out was they are afraid.  Afraid I will have a stroke, afraid I will die, afraid of more change, afraid we will have no money, afraid of the unknown.  I'm afraid too.

What also became evident was how they are coping with their fears. 

Humor was at the top of the list closely followed by sarcasm.  That makes sense considering that's exactly how John and I are coping.  I personally feel that this is a great coping skill.  When life doesn't make sense and there are no answers joke about it.  It can't hurt.

Avoidance - Admittedly our children missed a lot of school last year.  Some days it was just easier for them to be home.  I understand because I sometimes avoid social situations as well.  D chose not to participate in some of her favourite extra curricular activities.  At the time we accepted it but now I realize that she was avoiding people.  D and I are often alone together in public.  We often get stopped and people want to know the ins and outs of my medical status.  They often ask personal questions and I often respond.  She was tired of it and opted out. 

Physical Symptoms - It's hard to ignore the physical symptoms that keep popping up.  B and I both  have very rare serious disorders.  When my family complains about headaches, chest pains, stomach aches, etc etc we have to listen.  We also have so much more work to do when it comes to further medical testing.  My job is to put their mind at ease.  Headaches could be from lack of sleep or not drinking enough water.  Chest pains could be feeling worried or anxious about something. 

Emotional Responses - Fear often manifests it self by change in appetite, sleep disruption, frustration and anger. We are all, at times, a little angry. Let face it; this sucks. It's how we deal with the anger that's  important. Yelling, name calling, bull dozing, rudeness, poor attitude is all shut down pretty quickly. My experience is that a physical activity is required to get rid of some of the negative energy. Yes I have three Karate brown belts living with me. Case in point.

After thinking about it I compiled a list of techniques that we are using to help our children cope with their fears.  At no time do I under mind their fear or tell them not to be afraid.  This is scary.

- We still social story almost everything.  It's a useful techniques for all children not just the exceptional.  If they know what to expect it makes the situation easier.
- We encourage them to talk to us or each other about how they are feeling.
- We have regular medical check ups to reassure they are in good health.  We listen to their physical complaints and  concerns.  We will be following up with gentic testing.
- We eat well and encourage lots of physical activity.
- We try and maintain a routine.  Everyone has regular chores and responsibilities.
- We have down time to play and relax. 
- We spend more time enjoying our community and appreciating what's in our own neighbourhood.
- We talk about being brave and "full of awesome".
- We have asked for help from friends, family, doctors, teachers and social supports when we have needed it. 
- We offer reassurance when ever we can.
- Above all we love and accept each other, even when it's hard.

Stages of Grief - The AVM Edition

I spoke with my friend Angie on the phone last night.  I enjoy talking to her.  She always makes me feel like my opinion and thoughts matter.  That I am valued and important to her.

We chatted about family, her current work project (very exciting) and as always food, farming and sustainability.  When our conversation rolled around to my current state of health she asked me an important question.  "Are you angry?"  Nobody ever asks me how I "feel" emotionally.  Everyone wants information about my side effects.  Like they have something to compare them too??

I am sure most people are familiar with the stages of grief.  I think that is how I can best explain what I feel.  Keep in mind that its not a brief visit to each step.  I am constantly climbing up and down through the stages because that's my life.

Denial - What AVM? What brain surgery?

Denial is a useful coping technique especially in public but it is not terribly sustainable.  I am a terrific actress.  I can pretend all is well when I need to.  Most of the time my body and brain won't betray me.  I'm well medicated when the event calls for it. Denial is usually very short lived because I can't ignore reality more than an evening.

Anger - Why me? Why now? What if?

Am I angry?  Yes.  All the time? No.  It ebbs and flows.  It is often hormone driven.  I will always wonder what if I never knew?  What if I had never had surgery?  How life would be different if ....
I get angry with the medical community for playing down the severity and risks associated with my AVM and treatment. I get angry at myself for acting in fear.  I get angry at friends and family who either pretend nothing has changed or offer false hope. 

Bargaining - Dear God...

My relationship with God is private but I will say I speak to him much more often these days. 

Depression - Why bother?  I give up!

It would be very easy for me to slip into a very dark place.  I stand on the edge of it often.  My family has a long history of poor mental health.  It would be a very short step to disconnect from the world.  I am already isolated and have lost my freedom and independence. 
I am fortunate that I am very self aware.  I am able to pull myself back because I understand that it's completely normal to be sad, regretful and fear of the unknown.  Experiencing and really feeling these emotions are how you get to the final stage of grief.

Acceptance - It's going to be okay.  I will make the most of each day.

I can confidently say I am getting use to my new normal.  Do I wish it was different?  Absolutely, but there is more peace now.  I really do enjoy having a farm.  If I hadn't been diagnosed we wouldn't be here - yet.  I do not miss my previous job, but I do miss the people. I have a deeper appreciation for my community and my role in it than I did before.  I value my relationships with friends and family more.

Acceptance doesn't mean I have to love it.  It just means that I can accept the reality of the situation and have the courage to move forward.