Debbie's Place

A Patient's Point of View

Category: CTE Chronic Traumatic Encephalopathy (page 2 of 3)

Cannabis and Brain Injury

Dear friends, due to life threatening seizures I was literally MIA for 21 years. I had multiple traumatic brain injuries in that same time frame. It was medical cannabis that finally controlled my life threatening epilepsy. It is medical cannabis that is helping me IMPROVE with dementia which is suspected CTE! I so wish I had known the medical benefits of this healing plant a few decades ago! I found out about the healing benefits of this plant 6 years ago. It has also saved my LIFE the last 6 years! I believe that everyone deserves HOPE! I was not given hope by anyone, any longer. I had run out of time according to western medicine. When I was able to figure out the benefits and access medical cannabis for myself, I have wanted to shout it from the roof tops! Medical cannabis has given me a quality of life, as a chronically ill patient, I could have never imagined. This plant is the miracle many people and their families are currently praying for! Together we can share this important message far and wide and also with those closest to us, which many times are the very hardest!

 

Understand My Anger

I had an instantaneous, unforeseen, insult to my head.
it’s result and effect on my life has me so incredibly mad!
All my many dreams of the future, my hopes and my goals,
all changed and I can’t help that it makes me incredibly sad.

You think and say that I look basically identical to before.
You act like if I tried hard enough I could still be just the same.
In your unrealistic expectation of trying to accept the new me,
your pressure and demands have made me aware this is no game.

You did the best you could but it has been very hard on both of us.
You don’t seem to understand why it has been such a torturous ordeal.
Yet you must remember it isn’t your life that has drastically changed,
believe me when I tell you this heart-wrenching agony is very real.

Don’t misunderstand that I am not grateful or immensely thankful,
yes, I am very aware that my disability could be considerably worse.
But just don’t ask me to pretend it is easy or ask me to try and
minimize.Because today, my life, my losses, my reality, feels very much like a curse.

Someday I am sure I will have the ability to let go of this
incredible pain. But it has to be handled my way, in my time frame, not the demand of yours. Please just try to be patient and loving as I am truly doing the best I can. Some injuries and their aftermath unfortunately don’t have instantaneous cures.

I think you would more easily understand and also been very greatly
angry, if this injury with such devastation had unfortunately, instead
happened to you. So please just try hard to have more patience and compassionate understanding, if anything tragic should ever happen to you, I would stand beside you too.

My exasperation and fury come from my internal tremendous frustration, at all the things that were once easy, and now are so difficult for me to do. Please just try showing some real understanding and sincere empathy, remember things are not nearly as easy for me to do as they are for you.

I used to never blow my top, I was considered as gentle as a lamb.
Now with these brain changes, I just can’t really tolerate very much
I hate to loose my temper, it makes it hard to recognize who I am.
Just try to understand me, and possibly give me a reassuring touch.

I don’t like to allow myself such feelings of wrath or outrageous anger,
over emotions I no longer seem to be able to keep under control.
My agitation certainly doesn’t mean I don’t need love or feel
appreciation, it just means that I am struggling very hard with this unwanted role!

Did You Notice?

Did you notice,
it feels like you walk alone?
Did you notice,
the lack of family and friend support shown?
Did you notice,
when others seemed to stop calling on the phone?
Did you notice,
this disappointment made you want to cry or groan?
Did you notice,
how many ways compassion could have been shown?
Did you notice,
when others use a different or demeaning tone?
Did you notice,
a lack of feeling like you are turning to stone?
Did you notice,
when you were ready to move forward even if alone?
Did you notice,
we learned to protect ourselves from hurt and fear of the unknown?

 

Ode to the Brain Monster

Thanks to medical cannabis I no longer live the gruesome tale of the dreaded brain monster, my term for uncontrolled epilepsy. The brain monster rides piggyback in the recesses of a few chosen brains. It is unclear in most cases how he makes his selection, but the result is always the same. The brain monster is comparable to the worst nightmare of a sleeping child. His size is a little unclear, but he seems massive. His shape is a little hazy, but over-whelming is the word that came to mind. His face, though never very clearly seen by anyone, is most often described as cruel and wearing a smirk across his greedy lips. The brain monster is likened to a shadow because he goes with his chosen everywhere they go.

The brain monster used to be present every time I lay down to go to sleep and was still present at the break of each new day. He used to attend all my social functions and was also present during all my peaceful moments of solitude. He was once ever present and his existence could never be totally ignored. Thanks to medical cannabis I can ignore his existence and go days without giving him a second thought!

Once the brain monster comes to live within a brain, he is stubborn, he resists strongly all attempts at evacuation. Some call him a symptom, some call him a curse. Some call him the brain monster. The main treatment for the brain monster is to somehow keep him calm and sleeping. While he is lying dormant and undisturbed he is much less likely to cause pain and suffering to those of us he has inhabited. It is said that he is to be tip-toed around, cautiously, respectfully, suspiciously. It is sometimes very difficult to find a medicine that will keep him under control.

When he is out of control there are no words quite descriptive enough and no analogy that can exemplify the powerful range of emotions and damage he does to those of us he has inhabited. It is said that the brain monster can be felt stretching and yawning as he starts to awaken. As the brain monster starts to stir, the brain sends signals of warning to the rest of the body. The warning may be felt as the stirring of fear, or may be felt as just a slight tingling or numbness on one side of the body. The warning may be a drop in level of consciousness, or just a brief staring spell. Whatever the warning take care and heed, because it means the brain monster is no longer asleep. Some call this warning an aura, others refer to it as their personal gateway to hell on earth. This monster sometimes becomes all to familiar because he wakes up time and time again. His destruction is felt by far too many. He attacks little precious children, he causes parents many a torturous sleep-less night. He is responsible for immeasurable loss of independence. He has taken many a driver’s license away. The brain monster has caused many qualified workers loss of meaningful employment, loss of confidence, loss, loss, loss. Beware of the brain monster he does not discriminate. I learned that he can waltz in unexpected without warning and without a known cause anytime and inhabit anyone.

I finally experienced that even with multiple seizures types resistant to any type of treatment, medical cannabis was what gave me my first and only relief from the ominous threat of the brain monster!

Letting Go

 

If we hide,
we don’t have to decide.
If we pretend,
we don’t have to confide.
If we deny,
we don’t have to face,
the brutal realities,
that throw us off base.
If we stay angry,
we don’t have to deal,
with all of the frustration,
that we really feel.
If we blame others,
we can protect ourself.
If we don’t face reality,
it feels safe on this shelf.
If we stay lonely,
it disguises other pain.
If we stay mad,
it might keep us sane.
If we let go,
could we handle today?
If we forgive,
could we find our way?
If we were willing,
to come face to face,
Would the internal torment,
finally give up the chase?
Probably………

 

Glimpses

It was just a split second in time,
now I am forever different from before.
Feeling sad sometimes is certainly not a crime,
none of us can predict what life might have in store.

Sometimes there are tears and moments of unbearable sadness,
but in general we all cope, day by day, with our eyes on tomorrow.
For the most part we are thankful and our hearts are filled with gladness, but as with any loss, that lasts forever, we also all feel our share of sorrow.

No one ever told us what to expect, so denial was our strategy,
then the clock kept ticking and the improvements did not seem to come. Through the support of other brain injured, I realized there had been a tragedy, that I must face, acknowledge, grieve, get angry over and then start recovery from.

Denial was a wonderful place, but it was not real and it did not help me heal. Recovery has been a rough road, with many a glimpse at my pre-injury aptitudes. Sometimes I still wonder what if that pick-up truck had not been able to steal? Steal what? I still have my life and I am thankful. Recovery seems to be partly attitude.

But those glimpses of another, far easier time in life, are a step in our healing process. I know of no one that would raise their hand and volunteer for this kind of injury or pain, but that does not mean that we cannot turn our lives, with this injury, into a story of success. By sharing our information with others, in lessening another’s pain, we all experience gain.

Finding Our Way

 

It can take a long time to again find our way.
There were moments when we doubted our ability to make it through the day.
There were times we felt in everyone else’s way.
It can take a long time to again find our way.
There were times that we could only see through a haze of gray.
There were times joy and happiness were emotions that went astray.
It can take a long time to again find our way.
There were times we wondered if we could overcome this injury and again be okay?
There were times we learned to find hope in the smallest hint of a sun ray.
It can take a long time to again find our way.
There were moments when we doubted our ability to make it through the day.
There were times we felt in everyone else’s way.
We will get through each and every day even our most dreaded some way.
We will one day find others that understand and we will no longer feel in the way.
We will one day find inner peace and feel happy and no longer only see the grey.
We can overcome almost anything and everything life throws our way.
It can take a long time but we will all again find our way.

BI Road

 

The road got rough,
We had to get tough.
The road got lonely,
Learning to be our own friend was the precious fee.
The road got surreal,
All things survivors really and truly feel.
The road had many twists and turns,
We realized this was the speeded up way to learn.
The road had way more peaks than valley’s,
This was the hope we held onto when issues were drowning us.
The road held unexpected people, places and many new things,
The road will end up being more beautiful than we could have ever dreamed.

I Had to Dissapear

I just had to disapper for a couple of decades,
my non stop seizures caused me an unwelcome retreat.
All of my memories began to slowly fade,
My inner resolve stayed determined to somehow defeat.
I did not respond to any treatment there was no available aid,
I realized the world was going to fast for me to try and compete.
I must confess there were times I was tired, discouraged and afraid,
I just had to disappear for a couple of decades.
My brain was injured and there was so much to somehow beat,
I tried my best to be strong and yes, I prayed and prayed.
I fought hard so the human race I could one day again meet,
I was a mom and my children needed me I wish I could have stayed.
I did notice all their pain as I continued to fade farther away,
My inner resolve stayed determined to somehow, someway defeat.
I found my answer in medical cannabis and it has allowed me to thrive and stay,
I notice every time a new person I am finally able to again meet.
I just had to disappear for a couple of decades,
I am sorry for all my family and friends pain, grief and sorrow along the way.
Today I am blessed to finally be holding a hand full of aces and spades,
I just had to disappear for a couple of decades.

My Magic Carpet Ride

 

My magic caret ride,
is my precious down time,
of this I can confide.
My magic carpet ride,
is my precious down time,
where I learn to take things in stride.
My magic carpet ride,
is my precious down time,
where stress and worry can’t survive.
My magic carpet ride,
is my precious down time,
where I can focus and find my inner guide.
My magic carpet ride,
is my precious down time,
where meditation and self hypnosis are my guide.
My magic caret ride,
is my precious down time,
of this I can confide.

 

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