I once wrote a blog called “Feelings, The Junk in My Trunk”. In retrospect, it was far too pedestrian. Feelings, as it turns out are for me much more complex. You are about to witness exactly what I mean.~JLS
Damn you Chronic Illness, nobody makes me feel my own feelings!
I once heard that emotions are neither good nor bad, emotions are neutral things, but they are yours. So, I have to own my emotions. Fine. They are mine. If I feel crappy about something, or great; it’s neither good nor is it bad, but gosh darn it, it’s mine.
Recently, in our Chronically Awesome Support Hangout we talked about the different feelings we have had about our chronic illnesses. How did we feel when we received our diagnosis? How do we feel now? How do we feel when we talk to others about illness? Whatever came up when the subject of feelings and illness presented itself to us when it was our turn to speak, that was what we could share about.
I have felt a wide range of emotions over the years. I have had two, possibly three or four sets of chronic illness diagnosis. The first was back in 1988 when I received my diagnosis of Bipolar Disorder. That diagnosis scared me. I did not really know what it meant. There was not much of an Internet in those days, just bulletin boards if one had the savvy and the tech to join one. I could go to the library of my university and read psychology books, or I could ask a psych upper grad friend, or an instructor.
I was a freshman, what did I know? My psychiatrist was not particularly forthcoming with the information I needed and craved, and I had yet to find a therapist. All I knew was that I had just spent a few weeks acting like a complete fool, and then a coupl
e of weeks entirely unable to get out of bed. I missed classes, and my work-study job. I was on the verge of getting fired, and sent home from my tiny private college.
I didn’t know what I didn’t know.
What I did know was that I was afraid. I was also confused. Injury to those insults, after about a day or so on lithium, I felt sick.
I was so preoccupied with tremors, and trying not to vomit, that the fact that I was also miserable emotionally had not occurred to me. In retrospect, my ability to navigate my own head had stalled, my soul was on empty. I was seeking something, but I wasn’t sure what.
I found a therapist, but he was not only my best friend’s brother-in-law, he was also my boyfriend’s mentor. This was definitely a case of conflict of interest. I was getting shitty therapy, and I was too spaced out and afraid to, in point of fact, know it.
I finally fell apart, to the point of breakdown. I could do no more. Home I went. Once at home, in the care of my parents and grandparents, I just remember tears and frustration. I could not stop crying. I cried all the time, and at everything. I had a new psychiatrist/therapist assigned by Kaiser, and seeing her meant driving over an hour each way. I would cry all the way there, I would spend fifty minutes struggling to make her understand anything about me, and fail. Then, I would wait in line for medication. Finally, I would cry all the way home.
The one day I called this therapist in crises. I was hysterical. She let me talk for a full ten minutes before interrupting me to inform me: she had no idea who I was without my chart in front of her. I never saw her again. Disappointment.
I remember my mother telling me that I just had to stop crying, that I was crying far too much and it had to stop.
My next experience with chronic illness was much different. Again, I was miserable. I was in terrible pain, and my exhaustion was so intense that it entered the room before I did. Instead of falling out of life, life was falling out of me. I was leaking life all over the place. I couldn’t plug the leak, but I was more motivated to find a solution than I had been as a teenager. Rather than one forced into finding a solution for fear of getting thrown out of school, I saw an immediate need to get well, to get moving again. Desperation.
I think, as a kid I assumed erroneously it would just go away. As adults, we are more proactive. When we feel relentless exhaustion, and a gruesome weakness, with breathtaking pain for weeks on end, we want an answer to what is going on. When we react to antibiotics with hives and anaphylaxis, and a gland under our ear the size of a baseball, we know there is something wrong. Thus, we see a diagnosis as a relief. We see a diagnosis as the first step to a precious cure. That is, unless the diagnosis is a moving target, or the diagnosis is something that has the gumption to have no cure. Fear and mixed emotions of hope, crazed anxiety, anger, and confusion.
What happens when your diagnosis keeps changing? Or they keep adding to what you have, layering and layering like some sort of absurd cake?
Frustration is the first thing you feel. You don’t get an opportunity to get used to any one set of rules to live by. You don’t get a chance to breathe that beautiful sigh of relief that goes with knowing someone knows what is going on inside of your body. There is frustration that no one can figure out the full picture, and anger when they keep adding more and not taking anything away.
Add to that another anger. I was cursing mad, and infuriated at a diagnosis that many people didn’t believe in. Fibromyalgia. I remember a phone call with my ex-husband. We were in one of our on-agains in our on-again/off-again friendship in co-parenting our daughter. He asked me, “Isn’t that one of those garbage pail diagnosis?” I had to explain to him that this school of thought was ‘old-school’. Enter: anger. My mother asked me why I ‘wanted’ a diagnosis that was degenerative. I had to explain to her that fibromyalgia was neither ‘wanted’ nor degenerative. Enraged, angry, incensed.
So much confusion and misinformation meant that I had a lot of explaining to do. Educating. Something I was always good at. But, with a lot of explaining comes a lot of talking. With a lot of talking comes a lot of fatigue on the part of the talker, and the listeners alike. Soon, those around me, even those that loved me, got sick of hearing from me. So, when Lupus appended itself to my list, I kept it a secret. I told one person, and only one person: my best friend who lived in another state. I told him because he was with me when I got the phone call confirming the diagnosis. I just needed a break from talking about it. So did everyone else in my life. Mental Exhaustion. Cerebral Fatigue.
This made me dejected. I felt isolated. I had my friends on the Internet, but I had no one in my life that could hug me and tell me that everything would be ok. As it turns out, even with the worst of everything now on my plate, I still have not had that, not once. This has left an indelible mark of sorrow on my soul. It’s as though someone has scribbled black marks across my heart with a sharpie.
My condition worsened in that year and I finally had to come clean. Also, I was now suffering from peripheral neuropathy and bouts of Raynaud’s Syndrome. My fingers, and toes were turning blue, and often right on into a dark purple. It is a special manicure this illness gives you: no charge many of us joke, with contempt and often hissing through our teeth. This is amounted to one of those ‘here we go again’ feelings.
So many damned feelings. Anger, frustration, loneliness. And to think that it all started with a bit of relief. Relief that I knew what was going on, and that knowing promises to be half of the battle. Knowing will to lead to treatment, treatment is the yellow brick road to either a cure or to some modicum of comfort. I do not see the word ‘comfort’ in my list of feelings.
I went on like this for a while. Feeling angry, with a ton of scared, stuffed into a giant barrel of alone. Reaching out with my words, seeking that comfort anywhere I could find it. Talking to the few friends I had, friends that were, sad to say at work (don’t do that, I warn you now, DO NOT do that) as they were my closest ‘friends’. At least, they were the people I spent most of my time with for close to two decades. I now know they were not friends at all, at least not most of them. I talked to them until they had heard enough. Then lunchtime became nap time. I slept on a throw on the hard floor of my office. Soon, I was relieved of certain responsibilities, and then I was relieved of my job. Betrayed, disappointed, embarrassed, angry, relieved.
Abandoned by the only life I knew for almost two decades. By the only success I had experienced other than raising my daughter. That job had become a second home to me. It wasn’t just a job it was my career. I saw that company as another child I had helped raise. There was no sadness in my departure either. Perhaps one, maybe two people were sad to see my leave. My boss didn’t even show up for my last day of work. Most people got a pizza party, I got nothing. As for the rest of my coworkers? They were apathetic at best by that time. A few, the ones I knew best, took me to lunch. These are the people who went to my wedding, watched as I lost 175 lbs from gastric bypass. I watched their children grow up, and they mine. We had been through a flood together, through major upheavals in our industry and major emotional incidents at our company. I understand that this was, in part my own doing, but I was also watching a not subtle (I am not a conspiracy theorist at all) attempt to sabotage me. But when the time came, I was so done. I was ready to leave. I didn’t argue nor did I fight back. I took my medicine as they say. I believe in karma. I felt relief. I wanted to go home and go to bed. Tired and sick, it was time for a break, then time for a new road.
Let’s take a time-out for another summary: anger, frustration, loneliness, abandonment, and I am going to add betrayal.
My illness has added so many layers of emotion to my life, things I never thought I would feel. But never, never did I get to feel that satisfaction that so many get to feel when they get a diagnosis that leads to treatment that leads to feeling better. I have even been coerced by a not ethical doctor to go into a drug rehab to get off of fentanyl, a drug I was taking as directed. And, once in rehab, given more of the substitute narcotic than equaled the fentanyl I was on. In fact, my urine popped for ZERO narcotics when I walked in the door. They still jacked me up on drugs, and got me to believe all kinds of fucked up things about myself that were not true. They took me off my bipolar meds. I started, like a good little bipolar girl, to lie to fit in. And trust me, that is not a group you want to be on the ‘in crowd’ with.
So then I just felt stupid.
The list of my feels is getting long.
I want to skip over the awful things I felt between then and what got me to now, the now that found me here in Los Angeles and my husband down in Orange County. I just don’t want to talk about it. I don’t want to talk about the alienation I feel from almost every member of one entire side of my family. Skipping that.
Because finally, we get to the anxiety, and the agoraphobia; and finally I get to the Sophoclean Epiphany I have been yearning for. I walk into a doctor’s office and in two minutes, someone who knows ‘stuff’ looks at me and says “Well, for starters, we are going to have to do something for the pain from your EDS.”
ED whaaaaa? Are you fucking kidding me?
I was with my friend Karen, and I have never high-fived anyone over being told I had one of the most painful illnesses one can have. So why, why would I do that? Because it was my 42! It was the answer for me. And finally I could feel my feels. I could say HEY to all the doubters, the haters, the alienators, the jerks, the playground bullies of adult life. I had something real and painful and yucky. I had something that needed real treatment.
I got back on the fentanyl and the gabapentin and we messed with some other things and created a cocktail that worked, for awhile. Sure I crashed and burned for a bit too, but that happens. Then I started pain management. We upped this and balanced that and finally got an MRI.
Scoliosis x2? Hyperlordosis x2? Arthritis and Degenerative disc disorder? Every disc is desiccated? Back Brace? Epidurals? (That helped with the 2 weeks of waist down near paralysis… but we talked about fear already once didn’t we?)
Suddenly, I can walk? I am out and about! I am not afraid to leave the house anymore. I am not worried about getting so far away from the house that if I got into a big pain spasm that I was stuck. I could go out, have fun, be me. All the feelings flooded over, I became a basket case of happy-happy joy-joy.
After one more episode of total alienation and exclusion by people who should love me. Cry-Cry, Sad-Sad feelings, whoa whoa whoa feeeelings………
This past week I had tears of amazing, miraculous, wonderful, breathtaking, chronically awesome joy! I spent three days with my mother and my daughter. Two of those days were at Disneyland and California Adventure. I walked and I walked and I walked. It was almost completely pain-free. I took one nap. I had so much fun. I spent time with my two favorite people. It was the payoff, it was the jackpot for all the coins I have been shoving in this slot machine for the past few years.
I am no longer afraid of my feelings. It’s ok if someone or something makes me feel my own feelings.
I got the winning numbers. I got the blackout in Bingo.
I won in the game of feeling my own feelings. And it feels great.