I’ve been away at the ball, dancing around and around with multiple Doctors at one facility or another for over a month. I danced to their tunes for a while but I didn’t like the music they were playing. I decided to cue up my own music and they looked around in confusion. I held my arms out and waited to see if anyone would take me up on the next dance. I decided I had enough of listening to everyone. It was time for me to take control of the ball (pun intended).
Having Multiple Sclerosis is a tough situation. I admit that. We are all hit with one thing or another medically. I listened to every Doctor that walked into my room. It seemed that every Doctor belonged to a group such as Gastroenterology group or Cardiology group and so forth. I never knew which Doctor belonged to each group because I wasn’t seeing the same Doctor twice until I had been there long enough for them to start their rotation over again.
I learned that I had Congestive Heart Failure (CHF). What a scary thought. In the periphery of my eyes I could see the cloaked black figure carrying, is it a scythe? Oh no, now what?
Conversation with self:
Am I going to die?
Of course you’re going to die! Everyone dies.
But is it imminent?
Well it’s imminent for everyone in a way. One could walk out a door and get hit by a car and never know what hit them!
Okay, alright, but do I have to know about it in advance? I’d rather be a person who walks out the door blissfully unaware that the next second I’ll be laying splattered on the ground.
Are you sure about that? Wouldn’t you rather know so that you can get your affairs in order?
No! Well, maybe yes. I don’t know. Stop interrupting my thoughts!!!
Okay. Just trying to help.
Fear is compounded when you don’t know the facts. The longer you lay there watching people coming and going stopping to poke and prod at you, change bags on your pole, hand you a cup of pills making sure you swallow them, the more you lose yourself in fear. If you live a life floating around a dance hall with a partner you don’t know, the more you begin to wilt like a wallflower at the dance.
I threw my dance card down on the floor and stomped on it. Look out. I was about to have a tantrum.
I asked for my laptop and started bugging people for copies of reports. I looked up everything I could about CHF. I started asking intelligent questions and getting intelligent answers. When they tried to speak above my head, I shifted around in my bed as though I was about to get up and use the commode by my bedside. That brought their attention immediately back to me. Then they remembered they were speaking to a patient not a colleague.
I insisted on viewing the tests they were performing on me, if at all possible. I would ask, “What’s that.” I would usually get a response. I learned a lot. I learned a lot about what I wish I didn’t know after a bit.
I learned I had additional problems that had to be dealt with as well. Add a little UTI (urinary tract infection) to the whole mess of things. It’s no wonder why I’m so short of breath.
Every year that slips by I have to contend with more and more medical issues, as I watch in disbelief. I laid in bed contemplating life. I felt myself slip down a spiral of depression although my face never showed it. In fact, the staff commented how they loved coming into my room because I was always so cheerful and attentive to them. But behind that smile and my eyes there was my body moaning and groaning on the floor with a blanket wrapped around me. I would occasionally sit up in the dark room and stare at nothing. I couldn’t sleep.
I was alone in my depression chamber. I wanted to be alone. I didn’t want anyone else in there thinking they knew how I felt. I didn’t want someone trying to put words into my mouth about how I was feeling when in fact, I wasn’t feeling that way at all. People try to be kind, but in truth, they are selfish. They like to hear themselves talk and they think they have some empathetic reason to justify their speaking to me with garbage words. Women are particularly insistent that they know how you feel.
What you need is someone to listen, when and if you’re ready to talk. You don’t want someone to tell you to start talking, or expect you to throw yourself at them in tears blubbering about all that is wrong. Instead, your friends or family start yammering at you about what they THINK they know. What happens then? You are the one who has to be patient and allow them to talk. You sit there and listen patiently to them in order not to seem rude or cause hurt feelings. Suddenly you’re not the patient anymore. They are. They just don’t see it. They are voicing how they would feel given the same situation. I’m not them. I’m not like anyone I know.
How dare anyone compare my life to theirs as though to say “been there, done that.” Of course I know that’s not what they’re saying, but in reality, it feels that way and undermines rather than comforts a person who is already overwhelmed.
Depression is common to people with Multiple Sclerosis. It’s also common to a huge percentage of the human population. Some know that they have it, others don’t. Some know they have it but won’t admit to it, and others do admit it. Some are ashamed of it, others talk about it the same way they talk about having any other malady in their life.
I used to be ashamed of it. I hated having to put it down on medical forms because it’s the first thing Doctors ask women. “Have you been under any stress lately?” Aw come on. Stress? Why only lately?
Everyone who is breathing in this world is under stress. I repeat, everyone. There is good stress and bad stress, but they are all stress factors. These Doctors look at you with expectancy in their faces waiting for you to spill the beans. Once you do, they then go on to explain, “Eureka! This is why you’re sick or think you’re sick.” That’s why I didn’t want to put that down on any medical forms. I eventually got over it.
I have PTSD, post traumatic stress syndrome. It’s put me in the psychiatric ward of a hospital a couple of times. I have a particularly severe form of it. I have taken medications to control it for nearly 30 years now. I had a childhood that was severe. When I told some people a tiny portion of my history, they looked at me in disbelief. They looked at me as though I lied. Even my sisters don’t remember many things that happened because it didn’t happen to them. We were separated by age groups where we were at and my life did not commingle with theirs. We have some similar harrowing stories but I was older. A lot more happened to me and my memory is more clearer.
I stopped talking about my growing-up years. I made an exception to some but spoke of it in a very broad way. Sadly, those ears that I whispered to, listened but did not hear. Somehow, I was at fault in their eyes. To them, I had total control of my teen years and the years I led in my twenties. They have no idea how out of control I was. That I was immature emotionally for my years and that the only decisions I made were based on one reason and one reason only, what was good for them. It was, in fact, the only good thing I did during that time. Yet this is unforgivable to them.
I have been swallowed whole by past memories. I’ve spent long and lonely years alone travelling around the country with no home. I longed for yesterday when I was whole for just a moment in time. I have hurt and been hurt by people and by my own worst enemy, me. I have suffered by my own hands and thoughts.
I lived a life of people not believing me. Not my past history nor my present history. While visiting doctors explaining bizarre symptoms, I could see in their eyes that I had to be malingering. Why in the world did no one believe me? Why did doctors assign it to stress instead of testing me? Why did other people just decide not to believe anything I said before I ever even opened up my mouth? They built a preconceived story about me that no explanation I gave changed. They don’t even know a smidgen of the story and they don’t want to know. All they want to know is —why? Even when they know why, I come out dirty, filthy and unforgivable.
It’s no wonder I suffer from Major Depression and Post Traumatic Stress with borderline personality disorder (BPD). Now the world knows about my depression.
Depression is a real illness just like any other diagnosis. If you don’t get it taken care of, you will get worse. If you don’t admit it to yourself first, then you won’t get better. If you don’t reach out for help, no help will be given to you. You know when you have depression. You don’t at first, but then it dawns on you. It’s at that point that you need to seek help.
I tried to get help the wrong way. I believed in people. I believed that if I was open and up front with them, it would ease my pain. But no! Of course not! Their pain was so much worse than mine. Like I said. They had predetermined who I was and nothing I said was going to change their minds. They treat neighbors and coworkers better than I.
People in life were able to manipulate me for a long time. I was always a highly intelligent person but at the same time, a very immature person emotionally. I wanted love so badly that I would allow myself to be berated and stomped on if only for just a whisper of a smile, a hand held out at the ballroom dance floor from someone looking at me with love in their eyes.
I didn’t want to dance the tango at the hospital or in my life. I wanted to waltz. I didn’t want the push and pull, the “I love you’s and then the I don’t love you’s.” Worse yet, “I love you but…..” The setting of conditions.
I took control of my decidedly difficult time this past couple of months. I’ve also taken control of other medical issues including depression. It rears its ugly head up now and then, such as now. I know what to do about it.
I choose to dance with the “Man In The Moon” from a previous blog who looks down on me and never gives me conditions to live up to or challenges the very core of the person that I am. He accepts me in the darkness of the night and invites the stars to shed some light so that I can see my way to him.
I prefer the night and the beautiful peace of solitude creatively spending my time with my God-given gifts than to sit around and wonder about people. I don’t have time for the games that people play and I’m not putting up with it. I haven’t put up with it for years with the exception of one, whom I’ve finally let go. I refuse to reach out to anyone anymore. They know where I am.
During times like these, you come to value what’s truly important. People once were, and with the exception of a few, they no longer are.
Do I sound like a bitch or cruel? Perhaps. It’s not in my plans to give it another thought other than getting it out here on paper to make myself read if not heard. If no one listens to the words I am speaking through my writing, that’s okay too.
I go to the night where I can see the light of the pure soul that I was and that I’ve regained. I’ve dusted it off and shoved it inside next to my literally broken heart and my metaphorically broken one as well.
All is well.
I promise my next blog will not be so personal.