The hardest work ever

05 Feb

English: A subarachnoid hemorrhage.

Just a brief over view what happened during the years of recovery.  I struggled daily with only energy for 3 to 4 hours every day.  All my life before this injury I use to sleep not more than 3 or 4 hours a night.  I did not have time to sleep.  I was simply too busy.  I worked, and I worked hard!

I never stopped trying to help others along my journey.  Maybe this was my purpose in life! I helped even when others were complaining about how hard it was to work.  I’ve worked extremely hard at everything I’ve done in life, but nothing could prepare or compare to the work of rehabilitation from traumatic brain injury.

I don’t say this lightly, because I loved working and never complained.  I’ve done things that were definitely hard work but nothing could have prepared me for TBI.  I discovered what really was “work” … struggling for survival from traumatic brain injury!

In my mind, I never worked so hard in my life … until I struggled with my last injury.  Now that is truly work … recovering from TBI!  TBI recovery is WORK!  It’s a constant struggle, minute-to-minute, hour-to-hour, day-to-day, week-to-week, month-to-month, years-to-year, decade-to-decade, until a change happened!

Where does it end? Unfortunately, it will take those closest to you through the journey of he**!  I keep in mind every injury is different and I’ve had many before this final injury and I’ve recovered entirely … so I thought!  Maybe or maybe not?

I’ve never had a massive subarachnoid hemorrhage of brain and spine before so there really are no comparisons. No treatment and no comparisons.

It’s an injury that will never let you take one thing for granted, especially your health and well-being.  It’s an injury that others leave you or you push them away.  It’s an injury that your entire being is altered and your identity changed as you once knew it.  It’s an injury that cuts to the core of your existence.

That former self still lives within … struggles and conflicts of the “new you” and “former self” help through motivation, determination, perseverance, confidence, and anything you were … helped get me through this difficult injury.  My entire self was not destroyed!  My soul was not cracked and I refused to let that happen!

A100319_MAMC_TBI 1

A100319_MAMC_TBI 1 (Photo credit: Joint Base Lewis McChord)

The change that happened that every individual deserves.  I’m not a unique individual, I’m just a common soul.  Millions never receive what they should! What changed my life and my family was simple … proper treatment restoring my physiological functioning that could have easily been diagnosed and treated years earlier.

I thank God for this medical genius, who finally listened, poured through nearly two decades of insurmountable medical documentation.  Much documentation that was falsified to protect healthcare professionals.  I hold out HOPE for all those now traveling this same journey that they have compassionate and caring people surrounding them to lighten this journey and pave the path for an easier road to travel.

I pray for research and other data to help all those with brain dysfunctions, TBI, ADD, Dementia, Alzheimer’s,  and chronic illness of all sorts that there will be an easier journey while others do their jobs and make things less confusing, less errors to correct, less struggles that can be handled by others.  Life should be less about financial gain, and more about genuine concern, love, caring, compassion and simply … people!

Eyes could provide windows to TBI

No one deserves additional struggles when dealing with their health issues.  We need a proficient, knowledgable, caring, work force to diminish these struggles and assist these individuals in any means so they can improve their health and life when things seems so dull.

How would you change things to make this an easier journey for others?  What works for you and what doesn’t?


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17 responses to “The hardest work ever

  1. Tanveer Rauf

    February 5, 2013 at 9:28 am

    a great human being you are my friend:) how have you been. its so long now we communicated. i wish you health happiness and long life

    • brain injury self rehabilitation (BISR)

      February 6, 2013 at 8:47 am

      I have thought of you often. I’ve been behind on readings and still trying to catch up. I’m not sure I’m getting all the recent posts for everyone, but it might just be me! Sometimes I just need the simplest reminders. How’s your grandson doing? Take care and stay safe, Edie

      • Tanveer Rauf

        February 6, 2013 at 9:18 am

        Eddie thank you for prompt respond:) I know you are so busy. my grandson was very busy with his studies and exams. he’s fine 🙂 thank you. thanks for being there:) stay blessed

      • brain injury self rehabilitation (BISR)

        February 6, 2013 at 9:43 am

        How are you doing? Take care and stay safe, Edie

  2. heidirmoore

    February 5, 2013 at 10:56 am

    This is such an important part of yor story, Edie! Thanks so much for telling about it. I feel like we’ve been in suspense, waiting for this part.

    I found that I really wanted to know more about the how, what, and why of the great doc’s diagnosis. I would be thrilled to read an entry about how that worked and some of the details of what you learned about your disease. I like your writing all the time, but my favorite parts of your posts deal with you, perhaps because you’re the expert. 😊 🙂
    Best, Heidi

    Ps I promise I am preparing to get my new blog up & running.

    • brain injury self rehabilitation (BISR)

      February 6, 2013 at 9:48 am

      Hi Heidi, Thanks for letting me know what I haven’t covered yet. I don’t go back and read my posts, and of course I don’t remember what I’ve written (and most of us don’t!) … I will write the next post on Monday addressing what you are asking How? What? Why? How have you been doing? Does the weather change your symptoms. It’s a bright, cheerful and sunny day today and I’m loving it! Take care and stay safe, Edie

  3. Cauldrons and Cupcakes

    February 5, 2013 at 3:43 pm

    Read this post and wept with you over the frustration and pain of it all, and for the suffering many endure silently every day.

    I have found that for me, letting go of the need to ‘return to who I was before’ has taken enormous pressure off me and allowed me to develop in new and fulfilling ways. Comparison is never a healthy or useful exercise.

    Having someone to talk to helps. And so does making use of good days well, so that on the days where you truly struggle there’s a meal in the freezer and less to worry about when it comes to self care.

    And being able to ask for help when you’re not coping – that’s been such a breakthrough for me.
    Bless xx

    • brain injury self rehabilitation (BISR)

      February 7, 2013 at 6:47 pm

      I agree that it’s not healthy to expect to return like “before”, but it helps to have a baseline and know what was possible & trying to strive for the best is always good! Good days are always welcome.

      Unfortunately, everyone doesn’t have someone to ask for help when life is so difficult. When it’s possible asking for help is important. Many are alone and isolated. Many never learn to ask, and others don’t ask, but knowing one should ask and following through with it helps make life a bit easier. Thank you for some important tips. Take care and stay safe.

  4. Three Well Beings

    February 6, 2013 at 1:02 pm

    I would make an appeal to educate the general public, particularly those on the other end of state and federal programs, that a brain-injured person may speak clearly and with confidence, may not appear “ill” in the classic definitions, and may be very high functioning…yet struggling terribly to communicate his or her needs or to keep up with all the paperwork. There should be advocates to help with all areas much as we provide translators for those that don’t speak English.

    • brain injury self rehabilitation (BISR)

      February 7, 2013 at 6:48 pm

      Thanks for putting this message clear and concise. I especially find it interesting that we do provide translators but can’t help advocate for patients like we should. I never thought of that, but how true it is! We are willing to help others get through the systems that can’t speak English, but can’t provide advocates as we should for people with health problems.

      Thanks for pointing this out. Certainly education is key especially for those in charge of the state and federal programs, but it’s only come to surface following celebrity and football injuries. For some reason their injuries are more significant … most likely because their lives are valued more than the average person. I’m hopeful these systems will change. How’s your friend doing?

  5. Let's Move A Head

    February 7, 2013 at 9:42 am

    This is really very well written. It is a very moving and descriptive account which so many people could relate to so effortlessly. I would love to post it on my blog. So many of my clients would benefit from reading this. Thank you Eddie!

  6. brokenbrilliant

    February 7, 2013 at 8:50 pm

    Reblogged this on Broken Brain – Brilliant Mind.

  7. Cataldo Leone

    February 7, 2013 at 10:35 pm

    Hello Edie, I’ve never written before, I didn’t even know of the existence of this blog until now. So instead of writing long accounts of who I am and what happened to me (which I would love to discuss in private, if you want and have time), I want to thank you for sharing your story. I would also ask if you can please identify this medical genius that has assisted you because I am in great need of help and I am completely alone and stuck in Miami. I am Italian (born and raised) every single member of my family is over there and most of my longtime friends also live there. I don’t know, maybe I didn’t do a good job creating a support network around me after my accident (Dec 13, 2011) but instead of continuing to blame myself for it, I would be thrilled if I could recreate this network from zero. Piece by piece. My name is Cataldo and I’m glad I read your blog post today.

    • brain injury self rehabilitation (BISR)

      February 10, 2013 at 11:40 pm

      Cataldo, How long have you lived in Miami, Florida? My personal contact is to provide further details and a personal response to your specific situation.
      Sounds like rebuilding your shattered life is similar to others with TBI, but it’s extremely difficult when your family support system is in another country.

      A little over a year is still a fairly new injury, however I’m sure it seems like forever. The hardest part is knowing you are trying so hard to recover, and there is nothing you can do to speed up recovery.

      No one wants to be lingering in limbo … but that’s what happens with recovery from traumatic brain injury. It’s simply not a recovery you can speed up. Have you had any rehabilitation? Take care and stay safe, Edie

  8. kellyoptra

    February 13, 2013 at 11:55 am

    Hi I am recently on this journey as well and can understand the daily struggle. I too used to be the go go go type of person with 3-4 hours sleep & now I am the 3-4 hours energy. I know that this will get better and I am learning patience & acceptance too! Here is my journey

    • brain injury self rehabilitation (BISR)

      February 14, 2013 at 11:59 am

      Hi, It is very difficult to have your life altered in a way many never understand. We make the best of it don’t we? I will be looking forward to reading about your experience. Take care and stay safe, Edie


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