home

Since October, we have been desperately scrambling to buy a house. The beginning of October I got a call that one of my children was in a bad place emotionally and mentally and needed help. She had recently been hospitalized. I braved the trip alone, and flew to NY. It was not easy, but I did it. I met her with her things packed, and we immediately started the 2 day trip back home. She, with all of her belongings packed in her car with us. For 2 days and one overnight stop, she drove us back home.

Once here, it was very clear that 5 people could not fit in a 1200 square foot apartment. I called one of the local realty companies to ask about any rentals. They talked us into looking at homes to purchse. Which lead to a two and ahalf month nightmare with finance companies, paperowrk, and paying to have work done on a home we didn’t even own. After all that, through the pre-approval process, saving the down payment, the earnest money, everything we went through, twice with two different companies. We were denied. Because Clint’s name is on the loan. Because I don’t work. Because his debt to income ratio is too high. Because my income can’t be counted. It was very painful. For all of us, including the sellers of the house. And elderly couple, one with Alzheimer’s disease, on our banks pre-approval bought another house and moved out on our initial closing date. That never came.

So many things happen as a result of a devastating injury. One of which is financial. Something that is very hard to bear. Our home is now full to the brim, We house and feed not only ourselves, our ten year old, but my elderly father, and my twenty two year old daughter who is struggling to get back on her feet. I have a ten year old and a twenty two year old sharing a tiny bedroom. Zero floor space. They are also here to help me do what I cannot, drive to appointments, take over when I can’t function, but it is hard to do when we are on top of each other. May will be three years since this injury and I am no closer to clossure. No home to call my own. The unfairness of it…

My Northern Star

Many years ago a family member had a much worse brain injury than I have had. She has recovered to the point where she can drive. She can hold a job, the same one for years and years in fact. She has had and raised children. She has made an amazing recovery. I don’t know if she still experiences any of the same things I do. I don’t know if she feels different than before. I don’t know if she still has any of the same polarizing symptoms I do, but she functions very well. She is my goal. I want to be like her some day. I look to her as my Northern star. My guiding light, my inspiration. If she can do it, so can I.

I remember when she first had her accident. It didn’t seem real. Everyone was crying and upset. I was just thankful she was still alive. It seems like everything the doctors said she may never do, she did, just to spite them. I never really thought much about it before this happened to me. She got hurt, then she got better. Now I realize what an absolute feat that was. I wonder if she knows, walking around every day, that she is miraculous? That she is an inspiration now to me and probably others as well.

I think to me that is why it is important that people share their experiences, their stories with brain injuries. So that the people who come after us know that there is hope. That there is life after this. So here’s to you, JJNS, my Northern Star. Thank you for giving me hope.

Tap Your Heels Together Three Times

I gotta type this out really fast before my thoughts slip away like sand. I have had an epiphany. For anyone who has read my recent rambling, (mostly me) you know ive been really, really down. It was a real low place for me. Today I am up up up. I recently went to the com dr. he told me I’m done. Nothing more can be done. I’m at mme.(that is worker’s comp talk for maximum medical improvement) Which for a week, had me in tears. All I could think was, what do I do? What kind of futere do I have? No one can help me now. This is it. This is as good as I get.

The I remembered two things today,( well actually over the last several days of thinking) one my Dad told me when I was probably 12 or so, “if you don’t love yourself, no one else ever will”. Second, anyone who knows me knows my favorite movie is the Wizard of Oz. At the end, Glinda tells Dorothy, “you have always had the power my dear”. And between those two things I realized, someone can help me. I can help me. ME. I have to do this. Me. I have to pick myself up, and find my way. No one can do it for me. And I CAN do it. It won’t be easy. I’m sure I’ll have plenty more shit days.

But the point is, if I want to figure out how to drive safely again, I can find a class for people like me and take it. I can give myself that confidence and ability back. I can’t sit and wait for some entity to do it for me. I may not be able to work again, not like a job I had before. I ubderstand that. But I can find a purpose. I have value. I don’t have to wait for someone else to tell me I do, or give it to me.

So today, I danced around the livingroom to Stevie Nicks with my Caitlyn. I acted silly. I chased her around the house. I found some joy I have been desperately missing. Maybe it doesn’t sound like much to you, but, it is like I found an oasis after walking in the desert for 2 and a hald years.

So, I gotta go now. I have more dancing to do. And I have some shit to build with tinker toys. It’s my turn.

A few good article links.

Adapted Yoga Practices Aid in Brain Injury Recovery

I have read good things about yoga really helping a lot of people in leaps and bounds with TBI.

 

http://www.cbc.ca/news/health/brain-injuries-treatment-bills-place-1.3607268

The gist of this article is, find what you love, and do what makes you happy after TBI. It will help heal you and bring you back to the land of the living. Also, accept yourself for who you are now.

 

“I Wanted My Brain Back”

This one, this last one, this lady I can really identify with. I can’t remember the whole article, but I remember the whole time, thinking, “that’s me!” Having an injury like this really is a long journey. It is something no one else in the world can understand unless they or a family member or friend has been through it. It is polarizing. Captivating. It puts a spotlight on all the wrongs and all the rights in your life. What really matters and what really doesn’t. Bills don’t matter. Money doesn’t matter. (easy for me to say since I’ve never had any 🙂 ) Cars, houses, clothes, I Phones, other material things don’t matter. Who loves you, really loves you, supports you, cares about you at your very worst, that is what matters. The rest is just, fluff.

These. I love all of these.

 

9 Things NOT to Say to Someone with a Brain Injury

Suffering.

I enjoyed watching this season of Alone and I was rooting for this contestant, David McIntyre to win. Here, as he was leaving Vancouver Island, he speaks about his time there, particularly about suffering. Those words he spoke held a lot of meaning to me. Because I do think he is right. Suffering does have meaning and value. It teaches us what we are made of. How strong we are. What we can make it though in life and still come out the victor of and learn things about ourselves and life in the process. I think my current situation, I am suffering. Some days, I refuse to try and learn anything. Other days, I find little nuggets of knowledge. But it’s a process. I always told my kids we all go through terrible things in life. It is up to you whether you become a victim or a victor.

My will is lost. My ass is dragging. I don’t think I can finish this race.

I have a combination living/dining room. It has one window in it. One. I keep thinking it is a metaphor for my situation. How dark it is in here all the time. It is like living in a cave. Over two years spent in this chair. In this one room. With its one window. Outside is loud, and bright, and hot, and noisy. I’m not going out there. Not anymore. I can’t. I try to think of the window as the light at the end of the tunnel. But I’m tired of lying to myself. There is no light, that is a train coming. I’m going to die in here. I’m suffocating. I cook. I clean. I watch WAY too much Netflix. I’m a zombie. This is hell. I hate myself. I’m angry all the time. I yell for no reason about stupid stuff to the few people that still speak to me. There is no way out of this. I’m trapped in here. I’m so alone.

Three other human beings live in the house with me, but I answer them in monosyllables and put on my headphones whenever I can to block them out. I can’t bear to start talking. I’m afraid of what might come out of my mouth. I am so tired. There is no joy in my life anymore. I remember when I used to laugh all the time. When I used to play with my kids and my husband. When I used to enjoy cooking and spending time with my family. Now I block out the world with my headphones. Next season, next show please. Please, please, please, find something else to watch. I live TV characters’ lives rather than my own. I disgust myself.

I used to be someone. I used to be a pretty good Mother. I used to be a fabulous cook. I used to be a terrific wife. I used to be a good friend. I used to be great at my job. I used to be independent. I used to enjoy living. You’d think I’d be mad at the patient who hurt me. I’m not. I’m angry that my employer and their insurer denied me proper care in time to prevent permanent damage. I’m angry that people in an office three states away looked at my papers and decided a 42 year old woman, a mother of five children, wasn’t worth treating. I’m angry that to them I was words on paper and not a human being. If I were their mother, sister, aunt, cousin, would they do the same thing? That makes me angry. It makes me angry that I am not who I used to be.

I’ve ran too long. No finish line in sight. I’m giving up.

A few informative videos

This one is very good, I really related to the words of the people in the support groups, and the man in the hat and sunglasses the most.

This is the one I most relate to. I liked this lady. Our injuries have very similar symptoms. And I too really don’t like not being SMART anymore. I use a lot of creative adaptive mechanisms. And I have a lot of 6 beer mornings. 🙂

Cry, baby.

For the last month plus, I can’t remember how long it has been actually, I have been doing Physical Therapy (PT). The object of this therapy is to help me re-orient my brain so that I don’t feel dizzy, off balance and nauseous. I think that was the point anyway. Vestibular Therapy it’s called. But, somehow, I failed. I failed at PT. Ok, it has been “put on hold”. But to me, if feels like a fail. As usual, I was hoping for some sort of miracle, or at least a little benefit from the therapy. My personal goal was to be able to walk alone with Caitlyn to a local park without stumbling over sidewalks, getting dizzy or disoriented.

So, I am feeling a bit, “woe is me”. Now this whole mess is going to take even longer to clear up. I just want to be done with it, wash my hands of the whole thing. I feel like I am just sitting around waiting for my life to re-start. At the same time, I try to ask myself what I think will happen when this case is over. I expect to be cured. That’s what I want. I somehow have this vision of my life going back to normal, (whatever that is), and walking off into the sunset without a care in the world. I don’t think it is going to happen.

I admitted to a friend the other day that I might actually be “disabled”. It made me cry. Still does. I want to be ABLE. I want to get my life back. I want to be able to throw a ball and catch it, run, drive, go where I please. Do everyday tasks on my own. When you have all of these things taken from your power, it is so damn frustrating. Take the dog to the vet tomorrow? No, my husband is at work, schedule it for his day off please. Out of milk for a recipie? Too bad. You’ll have to go without. Talking to people in public and knowing all the words you want to say, all just flowing out of your mouth, never saying tampon when you mean chopstick, liver spots when you mean naked. Making sure Caitlyn and I have enough medication for the week? I can’t remember that. Not forgetting whole bits of time and when someone says, “remember when we?” and being able to say, “Oh, yes, how much fun!” Not having your husband start a story about his day and say, “remember when I told you last week, oh you probably don’t remember that do you?” And he patiently tells you all of it again, even though your brain is like swiss cheese and it all just flows out like sand. Not having to cancel appointments because you are having a week long headache.

I try to be positive, I do, I try to find just one small thing to hold on to to keep me going, keep trying, keep fighting. But today I cannot. Today I am overwhelmed and tired. I just want my life back. Is that too much to ask?

Can you see me now?

I latched on to an idea a few weeks ago. I thought, “what if the blows to my head caused damage to my eyes that the regular eye exam I had right after my injury didn’t pick up? As some of you may know, as a teenager, I was diagnosed with a detached retina in my left eye which I had surgically repaired. Somehow I thought, all my vision problems could be coming from something like this again but in the other eye. I thought I’d go see the Retina specialist, he’d do the eye exams, take the eye pictures and tell me that he could, I don’t know, fix my vision somehow.

You see I can’t drive still and that really is a big thing for me. My vision to me sort of almost looks like things don’t line up to make two halves of a whole in the distance. I have what I can only describe as a cloudy gray spots in my vision. And when we are in the car, I’m pretty sure every vehicle is going to slam into us. So clearly my depth perception is off. So there, in that last sentence we get to my favorite word, perception. But I will come back to that in a bit.

Anyway, The Retina doctor was all business it was a people mill for eye patients, get ’em in, get ’em out. Basically he said, your actual vision is Kosher. You do have the option of going to a Neuro Ophthalmologist. And that guy might be able to help you out, or at least explain better what is going on.

But at this point, I think I understand pretty well. My eyes can see. My brain just tells me I can’t. When I got home last night after the appointment, I was pretty heartbroken. I let myself have that little bit of hope that something could be done. The let down was terrible. For a few hours. That’s all I can give myself. Otherwise shit would spiral out of control and I’d be a big blobby mess.

So back to my favorite word, perception. In some instances, it works. But when you tell someone they only perceive a ringing sound in their ears 24 hours a day…or they visual perception is the problem, not their actual sight…or the they are only perceiving that awful smell, because no one else smells it. Well, that starts to…you know make me want to punch something.

But I’m not giving up yet. Maybe with practice I can learn to drive, “slow on the driveway.” Who wants to let me borrow their car? 🙂