moving forward

navigating through the life that was and moving into the life that is

A New Journey

on December 29, 2013

You may begin to hear things through the rumor mill, so I wanted to take a moment to let you all know what is going on in my life. I am starting the process of moving home to Michigan.

There are a million things I could say. A million reasons to stay and a million reasons to move, but ultimately it comes down to one thing, I need to be near my parents.

For the last two years, I have always had a caregiver. My dad lived with me until June of 2012 and has come here on a minute’s notice since. My brother took over full time when my dad went home. Many of you are aware that my brother lives with me to “help out” but what you may not be aware of is that there have been days that he has held this house together. Singlehandedly. Held me together. He has been my caregiver. Never in my life did I think I would need a caregiver at 30 and at that point in my life, I was not willing to accept that fact. I acted as though my brother was just “helping out” as well. Oh how wrong a thought that was. Here is the only way I can think of to describe this feeling. My brain was working with a 5 gallon tank. I was using those 5 gallons every day. Accomplishing so much, learning to walk again, drive again, care for my children again. So while I thought I was taking care of everything, my brother knew that my life really required a 20 gallon tank and he was supplementing with the other 15. Over time, he has shifted the volume, allowing me to move to 7 and him to 13, me 9 and him 11 and so on. I know it has been difficult for him. He wants to provide all 20. When someone loves you that much and sees how hard you are working, they want to just make it easier. Funny thing is that all along he was not only filling my tank, he was trying to fill and maintain his own. There will never be a way that I can truly explain to him how much I love him and how much my children love him. But being my caregiver was not something he really signed up for and although I know he would do it forever if I asked, it is time for him to move into the life that is waiting for him.

With his eventual move from my home in mind, I have to make decisions that are healthy for me and the kids. That is where the brain injury comes into place. Brain injury is tricky. So unknown. So intricately individualized. I read a lot about brain injury. I think a lot about brain injury; the things I have done wrong, the aspects I feel could be better explained, the checks that I feel should be in place as you continue to heal. I recently read an article that said, “Brain injury is indeed the last thing you ever think about until it’s the only thing you think about.” How true this is to my life. A brain injury doesn’t fit well into any box.
One of the most common side effects? Brain injured patients are often stubborn as all hell. Well, when regular stubborn Sandra met brain-injured Sandra, you can imagine the stubbornness that ensued. So what did I fight for? Normal. I was alive. I wanted my life back. Sure it would be new without Glen, however, I wanted everything else back. I wanted teaching back. Badly. All along that is what I fought for. Normal. Me teaching was what would make me feel normal again. The 2 attempts I made at returning were devastating to my mental health, devastating to my imagined normal. I have no regrets at all. Sometimes you have to attempt and fail at things to understand their place in your life. These failures are part of the reason I think about brain injury a lot. For reasons that I will not get into, my case was mishandled and fell in the cracks along the way. I NEVER should have been medically cleared to return to work 6 months after the accident. At the time, I did not know this though so enter stubborn Sandra. I told my doctors that I wanted to return and I was ready. It wasn’t a full return, just a gradual reentry. That is what I wanted and by the “looks” of things, I was ready to attempt it. Underneath the calm façade, was an erratic, impulsive, exhausted and did I mention grieving individual who was not ready to be making her own decisions.  Here is where brain injury doesn’t fit into a box, though. The doctor cannot see inside my brain, so to a certain extent they have to trust me. Here is why I think about brain injuries all the time. Here is where I want to teach family members and friends to be healthy advocates for individuals that are nowhere near ready to make their own decisions, despite their assurances that they are ready. I do not blame my family or friends at all for this, but they needed to be receiving information on what was in my best interest at the time versus what I was wanting to do.
Overtime, I have improved tremendously. Many of you who have watched me from the beginning are aware of this. However, I still have severe symptoms each and every day. The most problematic one is short-term memory problems. One of the best explanations I heard was that the center (middle) of your brain is where all information flows in and is then sent out to different areas of the brain. Almost like a mail room. However, from the force of my brain going back and forth, those pathways were torn or sheered. So while I may look like I am understanding, my brain is taking in all the information but not distributing it to where it needs to go. The mail room in my brain is overworked and understaffed.

TBIThis photo describes it perfectly. What was once easy to understand and remember, has become increasingly more difficult. I may need to hear it again. I may need to hear it slower. I may need to write it down, set a reminder, tell you to remind me. I no longer can trust that my brain will remember, the little or the big things. Let me tell you, this crushes my self-worth. My 8-year-old watches me struggle with this and will remind me of things sometimes and I hate that. Hate it. Over the past two years, I have come to new levels of recognition and I am coming to this one finally, I have a brain injury. Haha. I know. Seems fairly obvious, but seriously I had to teach myself that I have a brain injury and not a broken leg. There is no time line for my healing and in some ways I will never be the same. I just wanted to be Sandra from before the accident who was wife, mother, teacher, model math teacher, PTA president…but now, that frightens me just to think of it. So I am embracing me now, learning more about the new me, living with all the joy of life that I had before, and what I’m going to “be” or “do” is this; I’m going to stay home with my kids, I’m going to continue to strive at working out my brain every day, and on the days when it all is just too much, I’m going to go home to see my parents. I’m going to drive that half mile and fall into the couch and weep or sleep and allow my parents to be the caregivers that I never knew I would need again. I can not be caught up in the “could have beens”. I’m going to live in the now, with a safety net, knowing that mom’s meatloaf and dad’s silent strength are a 5 minute drive away.

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4 responses to “A New Journey

  1. Tonia says:

    My dear sweet Sandra…….I will truly miss you, I am sitting here crying but I know this is what is best for you. (and your parents) But most importantly you need to do what is best for you and your family. Things won’t be the same here…..I am not as articulate as you and don’t have the words needed. God will guide you and things will fall into place. Love you!! I know I am an OLD lady compared to you, but I love you, you are the sister I never got to have…..my sister in Christ!! Please stay in touch!

  2. Gillian says:

    Sandra,
    You don’t know me. We’ve never met. But you’ve touched my heart greatly over these past two years through your journal and I feel as though I know you or at least a part of you. Your ability to put your struggles, challenges, emotions and victories into words is truly a gift from God. I have been reading them since you started and your journey so far has been amazing and miraculous. I don’t have anyone in my life who is going through what you are, but I do work in a Neurotrauma ICU and see families who are about to set out on the similar, yet unknown, path of TBI. Your writings help me get a glimpse of what awaits them.
    I’m rooting for you! I’m happy that you have support here in Atlanta and in Michigan and I know this decision to move wasn’t an easy or rash one. I know you will be missed by the many friends you have, but they will never forget you or Glen.
    I look forward to reading about your “new journey”. Good luck and God bless you and your beautiful family.
    Gillian Todd

  3. Lisa says:

    Sandra,
    You are the strongest women I know. I cry every time I think of everything you have been through.
    Sending my love,
    xoxo
    Lisa W

    • Sandra says:

      Thank you Lisa!
      I would love to get the chance to see you this summer! I should be back in Michigan by then so I won’t be too far away from you.
      Love you!
      Sandra

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