Friday, January 25, 2013

Jan 25: Speak Up {Writing Prompt}

This is not an easy topic for me.

There are so many things I would LOVE to speak up about but feel like I can't at the moment.

I would love to speak up about what it is really like to live with someone with a brain injury.

I would love to speak up about how stressful it is to bear the weight of responsibility for EVERYONE and EVERYTHING in our family.

I would love to speak up about the many (half crazy) ideas I have brewing in my head for how I am going to manage in the long term.


Is it fair on Murray for me to talk about him on the blog?  Even if he consents (which he does) - is he really understanding what he is consenting to?  In a few days he will have forgotten that he that really consenting?

Even though there is a part of me that wants people to know how stressful it is to be the sole carer for my family - there is also a part of me that doesn't want to speak up about that.  I like to just get on with the job rather than talk about how I feel about it.  What I do want though is for people to 'get' what is really going on.  To get that I am effectively a single parent.  To get that I am Murray's carer rather than his wife.  To get that my life is not like theirs - the same rules don't (and can't) apply. To get that this is a BIG deal.

I would love to tell you about the long term plans I have brewing but I worry that people will judge me.  Murray does not function as a husband, father or even really as an adult in our house - yes we are married - but this is not a marriage marriage.  So what am I to do?

What would you do?

I can almost feel all the Christians reading this getting ready to reach for the comment button to tell me that I can't leave.  Don't panic.  I'm not leaving.

But please know that those of us who are in marriages where we are carers for our spouses - rather than partners with them - are not in 'typical' marriages like other people.  We are essentially on our own.  It is hard work.  By choosing to stay with our husbands and honour our marriage vows we are choosing a life of loneliness and frustration.  The marriage vows say until death us do part - that is a LONG time - day in and day out - to be alone but have no one actually realise that you are on your own.

I think I probably should stop speaking up now.

Maybe it's better to keep quiet?

{Ellen Stumbo Writing Prompt}


The Trousdell Five said...

I hope you are closely surrounded by people who do get it and that at some point you will be able to speak up about all of it, to them at least. I can vouch that there are people from afar who send you many positive thoughts and strength. xo

Melissa said...

Unless you speak openly people won't get it. None of us can really understand what you are going through but we probably all realise that it would be incredibly trying (massive understatement I know). In all honesty I really don't know how you are managing and often wish I knew what to do to help. You are an amazingly strong woman who continues to maintain a sense of humour throughout your hardships. Not everyone will judge you for being honest- just pick the right people to talk to :) Sometimes saying the 'crazy' stuff out loud puts things in perspective. Much love and respect for you and all that you do Alison xxx

Anna said...

I wish I could offer you more than just words. I can feel your heartache coming through in this post. Sending you love.

BLOOM - Parenting Kids With Disabilities said...

Hi -- I work in a children's rehab hospital and we treat children with acquired brain injury and their families and I know how critical support from other families is. Do you have strong connections with other adults whose partner has a brain injury?

Do you have respite for yourself, where you are able to get away by yourself, even for a few hours?

I read a book recently about families caring for loved ones with dementia (The Memory Clinic) and they talked about how critical it was for the caregivers to extend lovingkindness to themselves -- to take care of themselves in terms of social connections, eating, interests, getting breaks.

It sounds like you need help from an organization that works with families of people with brain injury and really understands. We have brain injury support groups for every member of the family. Is there something like that in your area? Also, perhaps that is where you could get help in problem-solving how to get respite for yourself.

It is good that you are writing about this because that's the first step in coming up with coping strategies. I hope you have good supports there because you deserve them!

Big brother, Little sister. said...

Alison, thankyou for writing this and expressing your heartache that I had thought about but never wanted or knew how to ask xx I am so sorry everything is so massive right now and overwhelming that I hope you find some peace in your brewing ideas xxx much love bron xxxx

Deb said...

Hey, I hope you've got some people in your corner who would be really happy to listen when you feel ready to let it all out. A public blog, probably not. But hopefully some local people who love you and want to hang in there with you. I know I've said this before, but I want you to know I pray for you every single day. You are not forgotten.

Missy said...

I can only imagine how hard this is for you to own up and speak out about the severe impact that Murrays brain injury has had not only on your family but your relationship as husband and wife. It is not normal anymore, it is not like everyone else's and disability impacts your life on so many levels day in and day out.
Thank you for your honesty, a beautifully written post.
Always here for you in any way xxx

Dottie said...

Don't worry about "saying what you feel". That is part of the purpose of having a blog. Life can be very overwhelming but know that others are standing with you if only thru the cyber world. You are strong and will always be victorious over adversity. Just keep on keeping on! I believe in you!!!!!

Sara Duggan said...

I feel as though I have entered where I do not belong. When I found Ellen's linky I thought it was just about writing. I see now it is writing based in deep hurt - as a way for you to cope with some very real problems which I do not have to face.

I face things but different things.

I don't have a husband who has a brain injury but I do know the loneliness in a marriage. It's not that we don't love each other because we do. It's the situation we are in - it is not 'marriage' friendly so it's been nearly 5 years since we were really living as though we are married. We are super close friends, the end.

As the ladies mentioned, I hope you find some folks locally that you can talk to - to yell out loud that this sucks - to cry - to be silent - to hug - to forgive - and heal.

Anonymous said...

Hi Alison,
This is Jill from USA. I got the App Crayon and a Talking Tom!! I just need your postal code, your last name and your phone number and then I can mail it!! The post office said it should take 2 weeks to get there. Thanks!
Jill Wasserman.

Linda said...

Alison: I think you have been amazing about not talking too much about Murray's injury. So much so that I think people don't realize how significant it is- at least I did not. I can't even imagine how angry and frustrated you must be. He did such a wonderful thing and to have such an uncommon and devestating result is so unfair.
I'm glad you are able to vent a little bit. I know you briefly mentioned legal action, I hope that you get something to help you cope financially. Emotionally is obviously a different story but to take one issue off your plate would help.
I work in healthcare and think about you story more often than you would think, given that I don't really know you. I used to work with transplant patients, kids, and had several kids whose parents donated organs to them and never saw a complication like Murray had. It is really not fair.
I appreciate your concern for Murray's privacy, but am glad you gave us glimpse into your life right now. How are the girls coping with his disability?


Helen said...

Hi Alison, you don't know me (I'm a friend of Frances Schramko.) I just wanted to share that a friend of mine, after being the carer for her husband for some years after his acquired brain injury, has recently decided that he needs more care than she can give and he's now in residential care, and it's working well for the family. You are not alone in this situation, speak to others who have been through similar experiences.

Whatever you decide to do, don't take any criticism from anyone. You need to do what will work best for your family, and if it's a bit too radical for others to deal with, that's their problem. Get lots of good, reliable advice from people you really trust, and take everything else as an opinion that may or may not be helpful.

I've read a few of your posts, and I'm gobsmacked by how graciously you deal with a family life full of multi-faceted complications and stresses. You're a truly wonderful woman.

Regards and blessings from Helen.

FirePhoto23 said...

My husband has brain damage from 12 strokes and TIA's. He has good days and bad days. It is so hard and NO ONE understands what we are going through unless you live with it.. I have been living with it since 2005 when he had his first stroke.. He has been through a lot and has gained a lot of his strength back after each episode. But the last one he had on Halloween in 2011, did the most damage. His left side took the brunt of it. It is always the left side. And he is a lefty. He can barely write. His left foot drags most of the time. His arm isn't so bad. He loses his speech when he has a stroke or TIA. It takes weeks to months to recover. He has severe anger management issues. He is depressed and I can't leave our 3 year old son alone with him because he can't take care of him.. We have NO marriage. We basically live together. I take care of him when he needs it, but he is in denial most of the time. My friend don't understand and they think I am mean and nasty when I am having a bad day. It is the hardest thing I have had to deal with in many years... You are not alone.. I do understand... I am here if you need to talk or vent..Hugs from the states...

Heda said...

Hats off to you for looking after your family so well - with love and humour and always with insight into their individual needs and personalities. I can't imagine how hard it is for you but I can see the amazing outcomes. I pray that things get easier for you. said...

Never stop speaking up! You are a voice for many, not just one. This is the first post of yours I have read, and I can already tell you are not the type of person to knowingly do something that would harm Murray, or anyone else. So keep speaking up and speaking out, and get your message heard! It's the only way we can change things! Hugs!

Julie and Jayden's Adventures said...

Thank you for your honesty and boldness in sharing this. It is a privilege to be able to come alongside you and share life with you in this season of your life. I know that in ALL things God is working for the good of those who love him. Others won't be able to see this and will doubt God's goodness. It is encouraging to me to see how He is using my struggles to allow me to identify and support you through yours.
Keep on fighting the good fight of faith until you can stand before you Father and hear Him say, " Well done good and faithful servant!"

Ellen Stumbo said...

I wish I could take you out for coffee (right in my living room) we would talk, cry, and pray together. No, what you are going through is not easy, and I don;t think many people can possibly understand all that is on your plate. From the bottom of my heart, I am sending you big hugs.
And for what it is worth, as we connected through this blogging world, I will be a friend to you.

the redhead said...

It is never better to keep quiet. To keep quiet is to withhold from those who love you the chance to support and care for you (and Murray, Audrey, Ashlea and Emmma) as you deal with this. As for others judging you, to quote Dr Seuss, "Those who matter don't mind, and those who mind don't matter."