Just Another Story

 

I fucking hate people

 That is all..... 

Am I disabled today?

On a physically good day, self-doubt creeps up on me. I remind myself that my disability is invisible to the naked, untrained eye. I'm frustrated that no one can tell by looking at me. I loathe the fact that most people automatically assume the reason I park in a handicapped space is because I'm lazy, not because I have Forestier's disease (also known as DISH). My bones, tendons and ligaments are slowly calcifying , making simple everyday task, nearly impossible. My problem is partly caused by excess growth hormone, which has also caused many other unseen problems with my life. When I tell people, they lovingly wish me a 'get well soon' or 'hope you feel better soon'. I want to yell back that I will never actually get better, so I stopped telling people. I let them think what they want to think. 

Some days, I clean the house top to bottom. The next day I can barely bend down to put my shoes on. Pushing a vacuum cleaner becomes nearly impossible and forget trying to lift anything even if it only weighs a few pounds. There are days when I want to give up. Then there are days when I want to fight back with all my strength, but I find it hard sometimes to find that strength. 

My neck, spine, shoulders, knees, ribs, and feet are all lined with bone spurs that squeeze on the nerves causing pain that is very difficult to control. A huge one that has formed on the back of my throat makes it difficult to swallow, hard to breathe if I do any type of exercise, and I'm slowing losing my ability to talk. I stopped explaining to people years ago that I was dealing with a unknown attack on my body. I stopped caring if people knew that I smoked marijuana to control the pain enough to function. I stopped doing a lot of things I use to enjoy. 

The excess growth hormone is also causing ridges to form on my head which is causing pressure that feels like someone is continually squeezing my brain. Headaches are almost a daily thing which makes it hard to think clearly on most days. I easily forget things I'm doing, even if I'm in the middle of doing that thing. 

I'm still struggling with HAE, but I'm learning what foods to avoid and what foods I can safely eat. Big problem with that is the food that I can safely eat cost way more than I can afford most of the time, so I'm left eating things I shouldn't and hoping I don't have a reaction or choke because of the bone spur that is pushing on my throat. 

Its slow, insidious creep through my body at times frustrates me, angers me and frightens me with equal measure. Should I try to explain to others or just smile when people ask and say 'I'm fine"? 

I am learning to live with the constant pain; It is my constant companion.

I don't know when I'll come to terms with the changes that is being force upon me. Is there a future for me? Maybe. It's just a different future than the one I had envisioned just a few short years ago. 

Tomorrow is Thanksgiving and I will get up, get dressed, slide my house slippers on, smoke a joint, and smile when family stops by for meal. I won't bring up the fact that my body is in pain, that old age and a decaying body is leaving me with little hope. It makes it very difficult wondering if I'll be able to do the things I doing now, next year. There is no cure for what I have. I can only live each day knowing for now I'm still alive.  

Passing Storm

Grief is just love with no place to go.

I was just reading an article about how to deal with the loss of a parent. It was a tough read because of all the emotions that come out when you allow yourself to go back to that time where your heart was being ripped out of your chest and you can't make sense out of anything. Losing anyone you love is tough, whether it’s family, a friend, or even a favorite pet. I feel so blessed to have had all the people and animals in my life that I lost this year.

I’ve learned there are no rules to grief. We can only succumb to it, surrender to it, let our hearts break open for the grief.  It is an ebb and flow, a dance of pain and love, a coming together only to once again fall apart. It is a feeling of overcoming, only to awake every single morning in the arms of grief once more. With time, the overcoming sadness, begins to fade. We are reminded that no person is ever truly alone. Those who passed on, whom we deeply loved, will echo within our thoughts, our words, and our hearts forever.  

I want to share a quote with you for anyone dealing with grief this past year:

“Grief, I’ve learned, is really just love. It’s all the love you want to give, but cannot. All that unspent love gathers up in the corners of your eyes, the lump in your throat, and in that hollow part of your chest. Grief is just love with no place to go.”

I wish you all peace and joy into the New Year, and may you all be granted 12 months of Happiness, Fun, Success, and Good Health. Stay safe my family and friends.

Waiting in Line

Every minute someone leaves this world behind.
We are all in “the line” without really realizing it.
We never know how many people are before us.
We can not move to the back of the line.
We can not step out of the line.
We can not avoid the line. 

So while we wait in line -
Make moments count.
Make priorities.
Make the time.
Make your gifts known.
Make a nobody feel like a somebody.
Make your voice heard.
Make the small things big.
Make someone smile.
Make the change.
Make love.
Make up.
Make peace.
Make sure to have no regrets.
Make sure you are ready.

Above all else.....
Make sure you tell your people, that they are loved.

Drowning

Are the broken the more evolved?

Does it mean to be evolved, to be mature, in a sense, we have to be broken?

Mental illness is highly misunderstood and difficult to admit. While it is as debilitating as any serious physical illness, embarrassment and denial make it a closet epidemic. While no one has a problem admitting that they have a broken leg, admitting that part of one’s brain or emotional abilities is broken is much harder. The uncomfortable silence that surrounds diseases of the mind leave those who suffer (and those who suffer with them) with few resources.

Without professional involvement, how does the average person determine if someone they know is clinically depressed or is merely depressed because of a bad day? Persons who suffer from mental illness are sometimes the last to notice that something is seriously wrong. The deeper the sufferer sinks into depression, the less able he or she is to rationally judge his or her own behavior. The warning signs are ignored.

One night about a year after my diagnosis, I walked out of my home and disappeared. Because I was an adult and had left willingly, the police would not aggressively search for me. The fact that I was seriously mentally ill did not seem to matter. Unfortunately, the lack of proper education regarding mental illness affects all of society.  Even the police felt that this was my problem. The sad reality is that a person suffering from mental illness is everyone’s problem. Not only is this person a danger to him or herself, but is often a danger to society at large.

After living on the streets for 4 months, I forced myself to go to a facility for help. For the next 30 days I was hoping to learn the skills I needed to repaired my broken soul. It is something about being fragmented, tainted by scars, that we as people learn more about ourselves and about others. What does it mean to be broken, however in a sense, it means not to go through the conventional path of life. It means, seeing different perspectives and understanding how people live their lives. We cannot be immune to the ravages of time, of old age, however what is broken within us will remain, concealed.

The broken have always been more evolved, because they have evolved through what is broken.

It's hard to let go. :(

Why?

Walk far enough into this dreamlike place

 and you may forget that you're surrounded by more than 

5 million people.

trying to touch the sky without a ladder

Demons Crawling Across the Green Grass

Good bye Mom

The flowers have died, so now it's time to move on.

Stay Out of My Dreams

Dying Flowers

When the flowers die, it will be time to move on. :(

Reflections of Today

I was woke up early by my 16-year-old dog, who was coughing and gagging due to being in congestive heart failure. Even though my heart breaks for him, at times I wish he would just lay down and quietly pass away in his sleep. Death is not always that way. Instead it is drawn out in suffering and ugliness.

After letting him and my other two outside, I cleaned up where he had wet on himself and the floor, then I jumped in the shower.  I was meeting people in different locations to sell them items I had posted online. I was hoping to make enough money so I could pick up a few things I needed from the store. The first person I was meeting always stressed me out, so I decided to smoke some weed before I left, so by the time I was to meet with her, my anxiety was low. As usually, she was late, but also didn’t have all the money, so she only got $5 worth of things from me. She said she would have to get the rest next week. I politely smiled and told her it wasn’t a problem and that I understood. If I wasn’t high, I would have probably choked her, or at the least cussed her out for making me drive half way into Tulsa for just $5… waste of time and gas.

I stopped off at a Q-Trip to pick up a drink and get some gas, and then messaged the next person I was to meet. By the time I finished filling my gas tank, they messaged me back saying they couldn't  meet for another hour. I didn’t want to drive back to Glenpool, so I called a friend to see if I could drop by for a little while and kill some time.  When I got to her place she welcomed me in with a big hug and told me how sorry she was to hear about my brother, my mom, and my cousin all passing away. She asked how I was doing and I said what I said to everyone who asked… ‘I’m doing okay’.

We sat in her living room in front of a 60 plus inch TV while she rolled up a big joint of the high dollar weed she had gotten from Colorado.  We passed it back and forth while we talked about how unfair life is sometimes. I told her about how all I wanted to do was sleep. It was easier that way. I didn’t have to think about life if I was asleep. When I was awake, I had no energy, no motivation, I didn’t care. I just wanted time to pass quickly.

She talked about how strong of a person she thought my brother was and how he never gave up on anything, even when he was faced with a difficult challenge. He was shot when he was just 8 years old and never again got to experience running, playing baseball, playing tag late at night, but that didn’t stop him from doing other things. He loved going fishing and hunting, and when he got old enough he learned how to drive a car, he went to college, and also taught at a college.  Even though he couldn’t walk, he did some things that other people could not do. He didn’t let the cards he was dealt, defeat him from enjoying life.

We also talked about my mom and how she always encouraged everyone she met.  In her eyes, everyone was perfect just the way they were. She never yelled at anyone, and always had a smile on her face. She had devoted her entire life to taking care of my brother, so she often forgot to take care of herself.  Maybe that is where I had a hard time forgiving her, even though it really wasn’t her fault, she rarely spent time with me. Back when I was young, I didn’t understand why, but now I finally did.

By the time we finished the joint, I was more relaxed and okay with things that I had been in weeks. She gave me one more long hug before we said goodbye and told me things were going to be okay. I smiled and thanked her as she handed me joint for later after I got home. I finished meeting with 2 other people, and then stopped off at the store for a few things before heading home.

I unlocked the door and was stopped by my dog that always laid in front of it when I was gone. Though the partly opened door, I called out his name for him to move and gently pushed him with the door. It usually took him a few seconds to get up because his hips bothered him, but after a few tries, he still wasn’t moving. I peered through the opening enough that I could tell he had passed away. I had to go around to the side door to my garage and go inside that way. I’ve seen enough death recently, so for whatever reason, this didn’t faze me. I gently rolled him up in the small floor carpet and took him out back for my son to bury him after he got off from work.

It’s after midnight now and I just smoked the joint I had gotten earlier. I don’t think I could have made it through this day without it. It has helped me deal with all the emotions, the stress, and the depression of dealing with life and death. Tomorrow I will make though the day, the best I can.

You have to forgive anyone who has caused you pain or harm. Keep in mind that forgiving is not for others; it is for you. Forgiving is not forgetting; it is remembering without anger. It frees up your power, heals your body, mind and spirit. Forgiveness opens up a pathway to a new place of peace where you can persist despite what has happened to you.

Burn The Past

Trying to take control...

I've been trying to channel my pain into other activities, but that doesn't seem to be working.

Physical pain takes away emotional pain.

It's a hard habit to break. :(

In My Head is Currently a Horrible Place to Be

All I want to do is sleep.
😪

Looking Back

I’m looking at the stars;

They are so far away and their light takes so long to reach us.

Really, all we ever see of the stars, is their old photographs.