Saturday, March 6, 2021

That Inner Bada**



I’m a chronic illness patient who spends most of her time between her bed & bathroom or shuffling to appointments. I’ve been doing this little dance for over ten years as an adult, and another six as a minor.


I’ve been called directly or indirectly: liar, cheater, attention-seeker, faker, hormonal, worrier, problem child, and difficult. 


None of this is true. And it’s forced me to become not just my own advocate but a warrior in an arena I should never have been forced into. I’m done with it.


I’m fighting to survive and make a life for myself. My family and I have been doing so for years.


Don’t tell me I’m wrong about the medically verified diagnosis and information I’ve been given. Especially if you can’t even speak intelligently about my chronic illness. It wouldn’t serve you to underestimate me either. 


I have a strength I never asked for but have gained through a long fight. A fight to survive, to have a life bigger than just surviving. 


Don’t push me in a corner. Don’t box me into some construct you’ve created in your mind for me. 


You won’t believe the fighter that gets back up and into the ring. 

Monday, March 1, 2021

Thoughts on a Stressful Few Days

 I’m tired.

Deep in the bone, world weary tired.

And believe it or not, it’s not from my gastroparesis.


I’m tired of being penalized for having a chronic illness.

I get it. I’m a thirty something woman. I don’t fall under the “accepted” picture of what someone thinks of when they think of debilitating health condition.

None of that changes the fact that I am. I have severe pain, difficulty getting adequate nutrition and hydration, lost weight, severe nausea, and I spend way too much time in the bathroom.

 

Let me be clear: I am beyond grateful for my doctors and nurses. I’m grateful to all the doctors, nurses, and essential workers who are battling COVID, natural disasters, and all they do that no one sees.

 

My frustration is with the suits sitting at the top of medical institutions, insurance companies, and drug companies who place profit over someone’s life. These individuals who sit comfortably in their fancy chairs in their homes and offices that are worth three times more than a typical household.          

Healthcare is complicated. Economics is complicated.

I get it. I studied one in college and I’m becoming a professional patient in the other.


I’m frustrated beyond words at the bureaucrats who pay little for their own insurance but deem themselves fit to dictate mine. Senators and Congress Members who are more concerned with lobbyists paying for their next campaign then the doctors, nurses, and patients waging wars against horrible diseases.

 

We deserve better. All of us who are battling things that were never our fault. Evils that often rob us of our ability to work and live even a fraction of what we imagined for ourselves.

I will continue to listen to the doctor’s instructions to manage my chronic illness. I don’t really have a choice other than to fight even though the system is broken and my body is broken.


I keep fighting because I know I’m worth it. Life’s worth it. I’ll get myself back up and into the ring. 

I’m just tired.


And we all deserve better.

Sunday, February 21, 2021

Open Letter to My Grandfather

     I’ve spent my quarantine working my way through a major health scare and getting answers to why my body does not want to work anymore. As I try to process and acclimate to this new entity, I keep being reminded of the warriors who have fought bigger battles. Do you ever feel like you’re not doing anything, or your struggles may not level up to others’ wars?

           My mind wanders quite often to all my Grandpa Jack experienced in his life. Grandpa Jack died years before I was born. He was born & raised in North Carolina, lived through the Depression, served in WWII, worked as a postman, grocer, and many other jobs. He met and married my Mimi shortly after the war & had 3 amazing kids. Grandpa Jack coached my uncle’s peewee football team and was bewildered when all his youngest, my mama, wanted were a pair of red shorts instead of a new dress. He lived a full life; I do not know if it was because of all he faced or in spite of it. And where did all that strength come from? 

He was severely burned as a child trying to heat up the wood stove faster.

            Lived with an angry father until he could enlist in the Marines.

            Served in the Pacific Theater – wounded on both Iwo Jima and Guadalcanal

            Haunted by memories of the horrors & brutality of the war his entire life; later diagnosed                         with battle fatigue.

            Injured on the job as a postman one day when he was walking his route.

            Fought day in and day out every war-torn memory, painful injury, and major heart                                    complications to give my mama and her siblings a good life.

            Ultimately those injuries would take his life.

I wonder if he knew all he did, all he survived did give his family so many blessings. I often get stuck on whether he knew all he built for himself.

            He fell in love.

            Loved his children & was a strong presence in their lives.

            Found & lived true forgiveness.

            Tried to heal & change patterns in his life in a time when few others were doing so.

            Did he feel in his bones how much he was loved, someone to be proud of, someone                                  whose character I try to emulate?

I get scared, feel the toll of my gastroparesis, or find myself acting out of old scars, only to have his face pop up in my head. This picture of him standing next to his crop of corn grinning from ear to ear. 

I know that though he never knew me, but he loves me as he loved all his grandchildren.

I wonder if he would buy me those red shorts just like he did my mama.

I know he would be picking me up, placing me back into the ring every time I feel                                    defeated.

He was a warrior. He’s one of my angel warriors.

And I just wonder if he knew how important he was.

I find myself hoping that all those warriors that came before me, who walk alongside me, know   it’s their example I’m following.

                        If I’m strong, it’s because they were.

                                    I don’t give up because I have no idea what that looks like.

I take one step at a time in the boot prints he left for me.