What I Wish I Could Say

So many things I wish I could tell you.

So many things I want to explain.

So many ways I wish I could help you,

But I myself, am just not the same.

-me

 

 

I wish I could clearly explain all the differences since this experience has begun. I want to tell you but am often unable to find the words to express the complex layers of the total experience. I have tried to draw it down to its finest points and offer help for any who may be going through life altering health challenges and brain trauma of any sort.

 

 

1. Brain trauma creates changes in how the brain functions and responds in all situations.

 

 

2. How our supports (family, friends, medical assistance) approach us, has a huge effect on our overall progress and well being. Healthy positive support increase confidence and encourage us to reach out, no longer fearing rejection or failure. Judgmental or critical supports will cause a shutting down and retreat from life. This challenge is big enough, don't make it worse. If you, as a support are struggling, get emotional support. This is offered through medical centers and social resources. Why? Because it is potentially traumatic, for everyone. Don't be afraid to ask for yourself. Emotional implications can crop up months or even years later and it is nothing to be ashamed of.

 

 

3. We will never be the same again. Get to know us all over again. My taste, voice, speech patterns, emotions, everything has changed. That is not necessarily a bad thing but good support will allow us to discover who we are even as you discover who we are. it can be a trial or an adventure, the difference is all in how you approach it.

 

 

4. Careful planning is vital to our overall success and coping with daily challenges. Daily schedules and consistency are required to avoid over-exerting ourselves and wasting our energy on the minutia of life. We desire to participate with others and enjoy aspects of living such as reading, watching movies, speaking with loved ones. If our time is spent trying to cope with our day, there is nothing left over for living.

 

5. Thought is required for every aspect of our lives. Things often taken for granted become huge tasks or ordeals for us to cope with. Medical care, planning our day, meals, medications, transportation- these when pooled together can encompass our entire day. I use a cane, not for balance, but to avoid over-exerting when I walk in trying to orient myself. The cane keeps me grounded so that I can speak while walking and my mind is not always focused on orienting itself in the physical space that I exist in.

 

6. Change has the potential to be devastating. Our brains work so hard just to function in a normal pattern that changes create huge disruptions to our process and can easily overwhelm our system of function. We will be more emotionally volatile and fatigue more easily. Not only that but the results of this disruption can continue days after the event or disruption. I have been planning for over 4 weeks how to cope with watching a movie with my family. Missing this event is not an option for me (We as a family are sitting and watching the new Star Wars release as three generations.) So, my supports are planning to help me be there.

 

7. Everything has cost. I am not speaking monetarily, I am speaking energetically. All of our life is a trade off. We exist in the reality that we are daily using our energy stores to simply function, there is nothing left past that point. Don't ask us to do more, we are simply incapable. This is inconvenient and upsetting. Feelings of inadequacy and failure can occur if loved ones do not offer support and empathy when it inevitably happens.

 

 

Brain trauma is life changing. The causes are many and carry their own, individual challenges. So many things I write here that I am unable to verbally express them. I have deep respect and love for those experiencing this trial. Deep love and respect for my supports; my family, my rehab team, my God. I am grateful for this opportunity and for the ability to retain much of my language skills. I am blessed and continue to move forward. God bless you.