Recently a good friend asked me if we ever thought about moving. It's a good question.
We live rather rural. We have neighbours but most of them are seasonal. The closest, some what adequate, grocery store is at least 15 minutes away. The kids go to school and participate in dance and karate 30 minutes away. Shopping and a wider variety of recreational opportunities are an hours drive. My team of doctors just a three hour road trip.
Still, the answer was pretty simple. No.
Later on, as always, I reflected.
Why not move?
Would our life not be so much simpler if we lived closer to the village? a city?
I would no longer be so isolated.
I would regain some independence.
I could walk everywhere and not depend on others to drive me.
I would be closer to my family and have more access to my friends.
I could take a taxi to the grocery store and local medical appointments.
John would have far less responsibility and burden.
Same question. Same answer - no.
We would be miserable!
When John and I moved in together, 17 years ago, we began designing floor plans for the house we would someday build. A lot of thought, time, energy and dreams went into those tentative plans.
Nine years later the foundation was poured. Today its our reality, our home.
The land we built on is a mix of pasture and forest. It borders on a a quiet road, more pasture and a large beaver pond. Today we are still designing floor plans. This time for green houses, bunkies and barns. We dream about gardens, aquaponics and turkeys. We talk endlessly about sustainability and homesteading. Of leaving something behind for future generations. BLACKberry Fields.
Pretty picture isn't it?
Even prior to getting sick I claimed to be born in the wrong century. I love nothing more than hanging laundry on the clothes line, reading a great book, finding a great new recipe and digging in the garden. I lose time daily watching the chickens and talking to the pigs. The place is slower but there is still plenty to do. Lots to keep my brain active and body alive.
I don't deny that moving would make life more convenient sometimes.
However, I don't think we could ever trade quality of life for convenience.
I have probably said it here before but for the first time I feel like we are living very authentically.
I am only as isolated as I want or need to be.
I am still very independent but I have to be more creative in order to achieve it.
Even if I lived in town I wouldn't be able to walk everywhere unless I had a shadow. It's not safe for me to travel solo in the event I lose the use of my leg or my sight.
I have close friends that live near by. We also have a steady stream of people who visit our little farm to purchase eggs and visit the animals.
Family can find me.
John willingly gets us everywhere we need to go.
We have learned to ask for help when we need to.
This is what real looks like.
Showing posts with label Coping. Show all posts
Showing posts with label Coping. Show all posts
Thursday, 11 October 2012
Saturday, 11 August 2012
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.
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.
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