This Was Never The Plan

I want to go back to work. I want this but everytime I entertain the notion, my psychotic, manic, or depressive symptoms raise their ugly heads and remind me of just how unstable I am. In order to return to work, I would need a whole lot of things to be different for me, especially when it comes to how well managed my disability is. I am mentally ill but I believe someday I might be able to have my shit well enough in order to work again.

I used to have jobs that I loved. I felt like for the most part, I was good at them (less a few on-the-job meltdowns). I was determined to find a way to assist my coworkers (or the students to be enrolled in any of the programs we offered) in whatever way I could. Often I sacrificed my mental or physical health to be there. I really did love it. It’s what we are programmed to do, work.

So, why do I no longer work? There are many reasons and not one of them is because I enjoy drawing SSDI disability. Don’t get me wrong. I am grateful that I qualify for these benefits considering my situation but like many of the people I know who are disabled, I want to work.

There are many things I miss. I miss the daily challenges. I miss problem solving. I miss the social aspects of having a job. I miss the sense of purpose it gave me. I miss having my own workspace to organize. I miss the teamwork. I miss the friendships. And, of course, I miss the salary. I think a lot would be different right now if I earned a salary. I also miss the accolades one receives when you do your job well.

With all that said, I don’t miss the usual things that people get frustrated with on the job like office politics. On top of that, I don’t miss the blackouts I used to suffer. I don’t miss being confused because my brain decides that I should be hallucinating wildly during an important exchange. I don’t miss the feeling I would get when I realized I had gone from “quirky but good employee” to problematic liability. I hated taking medical leave, necessary medical leave, knowing that it would most likely end my position.

I wish I was mentally well. I don’t like being schizoaffective bipolar type, leaning more towards schizophrenic. I know some people who live with mental illnesses lead productive lives but that greatly depends on the severity of how their disorder presents itself, if they find an employer willing to provide reasonable accommodations, how well they are able to manage their symptoms, and if their treatment plan is adequate to allow them to function. Without some or all of those things occurring, it is difficult.

The reaction I get when someone learns I am on disability is mixed. Some act like I must sit around doing nothing, just collecting a check that is at their expense. That assumption is not only inaccurate but hurtful. I worked for many years until the frequency and intensity of psychosis became completely debilitating. I didn’t go to college for this.

Some things have changed since I’ve been labeled totally and permanently disabled. This has forced me to change my goals, adjust my attitude, accept my limitations, and redefine what success means to me. I’m not worthless and I refuse to allow some people’s opinions of me reduce me to being a mere drain on society. I have value. It amazes me when someone tells me how much they value me and want me to continue to live in one breath, then mutters the sentiment that they are paying for me to live because I collect disability in the next. You can’t have it both ways.

I hope you are able to appreciate and focus on the positive aspects of your work life if you have been employed or are enjoying being gainfully employed. Sure, there are days that suck but I hope not everyday. I also hope the next time you meet someone who is on disability, regardless of what that disability is, you reserve judgement. Trust me when I say this was never the plan. No child wants to grow up to be disabled. We’re not worthless.

I want to work again and maybe one day my meds will work so well I can. Until then, I’m not going to allow it to bring me down or make me think less of myself. It simply is my reality.

Until next time, be good to yourself and when you can extend help to someone else, do so with kindness.

He Said Schizophrenia

Thinking back on my psychiatric history, I would be amiss to exclude the first psychiatrist who mentioned me and schizophrenia in the same sentence. This was late in 1997. When I go over my diagnoses throughout the years, I seem to have conveniently left this one out of my story. He handled my case poorly and proposed a diagnosis I couldn’t accept. Let’s call him Dr. Krapelin.

• 

I had picked Dr. Krapelin out of my list of providers for the health insurance I had at the time. I can’t remember why I chose him but I can guess it was because he didn’t have a long wait list. He scheduled me almost immediately which was rare when trying to get in to see a psychiatrist. His office was further away than I would have liked and I was nervous about opening up to yet another psychiatrist but I made sure I was in his office by my set appointment time.

He was a pleasant enough man who went over both my medical and mental health history. I told him everything. I even told him about the voices and noise in my head, seeing things that vanish into thin air, and how I knew other people had access to my thoughts. My thoughts didn’t feel like my own and Dr. Krapelin seemed to understand exactly what I meant. It felt good to get those details out in the open.

He quickly put together a stack of prescriptions to fill and came up with a treatment plan and goals I wanted to achieve in therapy. As we discussed my symptoms, at one point he said the first thing to address was the schizophrenia.

Schizophrenia? He said schizophrenia. How could that be so? My head was reeling. No, no, no, not me. Schizophrenic patients were those people who always looked disheveled, walked around talking to someone that wasn’t there, and had a propensity to violence. I remember discussing schizophrenia in my abnormal psychology class. I knew my image of a schizophrenic person was more in line with Hollywood’s version of someone living with schizophrenia but still, I was not one of those people. Not me. It couldn’t be so.

I challenged his assessment of my mental health and he listened to my objections then told me I had the symptoms of an affective disorder, yes but he was more concerned with the symptoms that indicated psychosis and were in line with a diagnosis of schizophrenia.

He wrote me nine prescriptions for new meds to start and told me to stop taking the paxil I was on immediately. I had a prescription for thorazine, risperdal, haldol, depakote, valium, effexor, chlorpromazine, and two others that I can’t remember now.

Now if you are familiar with any of the above drugs, you know how sedating most of these meds are. Usually, you start off small and add meds or change doses as the psychiatrist sees fit. Dr. Krapelin started me on nine meds at once dumping my tried and true paxil. He then scheduled my next appointment for three months away so my body would have time to adjust.

This med combination was very sedating. I moved like a zombie, spoke with a slur, and could barely function properly. I called Dr. Krapelin to tell him the side effects were too great but he insisted starting all of the medications together was the proper course of treatment. He told me it would get better. It didn’t. I was completely losing touch with reality. I made it to work and back but slept the rest of my day. It was no life at all. My behavior became more and more erratic.

Then one day, I woke up to find myself in a hospital bed. I needed to be at work so I grabbed my clothes and started to change into my dress and heels. Then, I attempted to stand up and immediately fell face first on the floor. A nurse rushed in and tried to get me to lay back on the bed.

“I need to leave. I have to go to work,” I said frantically.

The nurse replied, “That won’t be necessary.”

“Why not?”

“Because your boss is the one who dropped you off.” I felt devastated. This could not be good.

I ended up in a behavioral psych ward for just over a week. It was a low point. I asked the nurse if I could call my psychiatrist and she let me know that he had been contacted but she didn’t think he was going to see me while I was there. Once I had phone privileges, I called myself. Dr. Krapelin told me I went against his orders and messed up my treatment plan. He said once I was released from the hospital, I could call to schedule an appointment but his office was booked so it would be best if I made a point to make my next scheduled appointment which was only a day away. I knew I wasn’t being released that soon.

I met with a psychiatrist affiliated with the psych ward. I started over again. I told this psychiatrist about my depressive and manic episodes but left out the symptoms that Dr. Krapelin associated with a diagnosis of schizophrenia. On the new pdoc’s assessment, I was listed as bipolar disorder with psychotic features. That sounded like a better diagnosis for me. It was one with a better prognosis. I decided to continue to see the psychiatrist from the hospital when I was out of the ward. Since I had only seen Dr. Krapelin once, I told my new pdoc that there was no point in accessing those records and he agreed. I was relieved. For a minute, I thought Dr. Krapelin’s notes and diagnoses would become an issue. Luckily, or unfortunately, it did not.

• 

So, when I stated in an earlier blog that I didn’t mention the positive symptoms I experience until my late 30s, I wasn’t being truthful. The one time I had mentioned the psychotic issues that I was having, I ended up a mess and I didn’t want to repeat it.

I know changing psychiatrists because I didn’t like the diagnosis and prescribed treatment was not my wisest decision. The sooner you get help, the better the prognosis. For me, at that time, switching to another mental health provider seemed for the best. I shouldn’t have hid the hallucinations, delusions, or paranoia but those symptoms did not severely impair my ability to function. I could still manage. Who needed to know?

Schizophrenic? Me? I guess I always was. I just needed time to accept that this diagnosis did describe me, and that’s okay.

So, now you know. Now, I have faced it. It isn’t the end. It’s just a different chapter that would become part of my story.

Take care of yourself until next time.

End of May

It is almost the end of May which means the end of Mental Heath Awareness month. I used that time to post tons of graphics, memes, informational posters about mental health, and some about specific disorders. I made most of these public so my friends could share and reach a wider audience. It felt great. I took a few days to rest this month but I posted a lot of good stuff. I post mental health posts all year round but it is amped up in May.

My main reason I posted so many items about mental health is I was hoping to start a conversation. I want to be an advocate, bring awareness to mental health, and help end stigma. I want my friends or anyone who saw one of my posts to ask questions or educate themselves. No one was asking questions. I have a lot of friends who live with mental illnesses, similarly afflicted, and some shared the post on their page. I am happy they found some of the posts useful but this year, I seem to have missed the mark.

Now it is the end of the month and I am done for this May. I am on a vacation, so to speak. One reason I am cutting it short is because I started to receive negative feedback from my similarly afflicted friends mostly. They complained the content was incorrect, that they were repetitive, that the posts were obviously edited or cropped in some way, and that I posted some things twice. I deleted the offending posts but it really brought me down and I have already been struggling with my own issues. To save myself, I made one last post on mental health for the month and I am taking a break for my own well-being.

Is this petty, childish, and selfish? Perhaps it is but I am not doing it to be any of that. I truly feel like I am headed toward a break down if I don’t take this time to take care of me. I am sure my friends will understand. The complaints were coming from people who I thought were mature enough to scroll past a post they do not find helpful and keep going. I thought these friends understood what I was trying to do. I didn’t think any of my posts were so egregious that cause annoyance, anger, or offensive. I totally did not expect the negativity I faced. Like I said, I have been struggling a little with my own challenges so it is time for some self-care.

I think I missed my target audience anyway. I do post a lot even when it isn’t May. My beliefs are liberal. I have very strong opinions. One can tell by many posts that I love cats. I do not post every thought I have or meme I see. I pick and choose but when I am unwell, I can get carried away. Because of these issues, I think many have unfollowed me and I can see that my friends list is shrinking so some just unfriended me but I don’t think it was about my mental health. There are plenty of reasons to depart from my life that the feelings other people have are none of my business. It really is their loss. I can be delightful and informative because I care so much about bringing mental health awareness to the forefront. I want to encourage people to put aside their erroneous beliefs about the mentally ill and listen. But my target audience missed it.

I do have some faithful friends who are paying attention who do not live with a psychiatric illness. They read my blogs and provide feedback as well as ask questions. The highest form of a compliment is when one says, “I think I am starting to understand.” They also like my posts or comment a word of encouragement when I am struggling. I live for myself but I also live to help my friends and family understand how important mental health really is. Some have asked me deeply personal questions because they fear they may be afflicted with a disordered mind. I have no problem with the questions and try to be as true and honest with them so they have facts and see the good and bad side of a person living with mental health issues.

So as I wrap up my mental health awareness posts for May, I may have had some criticism but if one person, just one person, got something out of what I am saying through the posts, that is enough for me. I only take leave to take care of myself, my own mental health. I know on some level, they all will understand. Sometimes, I am really stable, jumping over obstacles like they aren’t even there. Sometimes I am unsteady. And occasionally I am totally unwell and have to take a step back to take care of me. While I am not totally unwell at this time, I feel that I could easily be there if I don’t take care of my business.

Have a wonderful end of May. Wishing all more blessings than sorrow. Until my next blog post, au revoir.

Those Voices

It has been a while since I have talked about being symptomatic. I felt like that was the entire blog was me talking about all the horrible symptoms of psychosis I was experiencing. The voices are the worst of it in my opinion but not everyone with a psychotic disorder will experience that.

When I am talking about the voices to some, they often point out to me that all of us have that little voice inside us that…blah, blah, blah. I know what you are talking about and yes, I have that little voice inside that seems to be my conscious but the voices I am talking about are different. They are cruel and hurtful. They demand that I hurt myself or others and sometimes the images they show me are quite brutal. Those voices are not my conscious. My conscious would not instruct me to commit horrible crimes. It is there to direct you to the right path.

I started hearing the voices when I was very young. I was living under the delusion that I was not totally human so I assumed the voices were scientists that I could overhear. They were fairly benign back then. As I got older, they would come more frequently for a while then nothing. I knew better than to talk about it too much and when I did, I did so in jest so no one took me seriously. I did not want anyone to know I had auditory hallucinations. Hearing voices was something a disheveled, confused, crazy person has, not someone like me. I was certain that if anyone knew the things in my head…I was convinced I would spend my life in an institution.

The first time I mentioned it to a psychiatrist, he told me I was schizophrenic. When he saw the terrified look on my face, he changed it to almost schizophrenic. How are you almost schizophrenic? He put me on 9 different pills, more than one was an antipsychotic, and scheduled our next appointment after three months of me taking these medications. Something was terribly wrong and I called and called to set up an appointment sooner rather than later but he would not see me. He said I needed to wait three months to give the meds time to work.  I did not make it that long. I ended up in the hospital, quite a mess. I did not mention the voices again for many, many years.

At the end of 2009, I completely shut down due to stress which always make my symptoms worse. By then, the voices were with me most of the day. They became more and more frequent and more and more intense. This lasted for a long time. It was non-stop talk.

I can sometimes put it in the back of my mind but when I am the subject or they are talking directly to me, that is difficult to say the least. I was miserable. Had I not had my own family by then, I do not think I would have made it. My antipsychotic worked by lessening the volume (for lack of better word) but they were there all the time.

In summer of 2018, I had to undergo another medication overhaul and most everything changed because the regimen I was on was no longer working at all. I hate overhauls. Ideally, it is preferable to go into the hospital to make a lot of changes at once so mine would be fine tuning, adding and subtracting, this and that. It was going to take and did indeed take months. I was worried but thought I knew what to expect. I would find something that made it more comfortable but not really change much.

The new antipsychotic I was prescribed works. Let me back up a minute. No medication regimen is perfect so I am not symptom-free or under the delusion that I am cured or anything extreme.  It works quite well and for the first time in so many years, I have moments of peace. The clinic’s office was kind enough to supply me with samples until we knew if it worked. It is a newer drug so I was worried about the coverage my insurance would provide. For many of the newer drugs, they cover only a small portion. Well, I filled an actual prescription and the co-pay was $100. That is a lot of money. It was definitely not the most expensive of the things I have tried in the past but those did not work and this seems to work.

Since it has brought me some peace, Andrew said we would make it work however we had to so I am sticking with it. I hope I get many years out of it before I need to switch again. Now, this is not to say that I am fully functioning like I should be, like a “normal” person functions but life is less taxing. The other types of hallucinations do break through more often than before but I don’t see that it causes significant impairment. I will have to get back to you on delusions and paranoia. I still say that everything is alive and my rock garden seems to agree.

Because of Patience

I am very blessed, lucky, or both. It’s not because I have the perfect house, a fancy car, or enjoy unlimited financial resources. It isn’t because I am well-traveled or reached some personal breakthrough or achieved my lifetime goal either. Why do I feel so special? Because I get to be the mother to my dear sweet daughter Patience.

Growing up I was around plenty of babies and children younger than me to have witnessed first hand that caring for them is no walk in the park. I can remember wanting a baby as a child, fearing having a baby as a teen, not wanting to be a parent as a young adult, and then deciding having a child (specifically a daughter but had I had a son I know I would have loved him) was something I wanted in my life.

Many of my friends had children long before I was even in a position to bring a child into my life. Spending time with my friends with their children was entertaining. Kids and babies are funny and seeing a friend trying to be serious, stern, and act as a disciplinarian. It gave me plenty to laugh about because parenting was serious business with no perfect formula for success. Watching a parent in action warmed the heart, brought you to tears, and provided endless moments of joy. When things seemed to be very serious, I found myself unable to hold back the laughter. My friends often told me, “I can’t wait until you are a parent and I’m going to laugh at you.”

As the years went by, many of my friends may have given up on seeing me as a parent but it happened. The summer of 2003, I became pregnant and it was a baby girl. Long before I thought seriously about being a mother, I had fallen in love with the name Patience, my husband at the time was agreeable to it, and after 33 weeks of pregnancy (40 weeks is full term), she arrived.

Now, I had no illusions that it would be easier since I was older, or thought that I had any skill set to be a “perfect” parent, so I accepted that I would do my best and learn as I went just like anyone else.

I have made so many mistakes, huge ones. My marriage to her biological father ended before she was one. I divorced him as soon as I could after we separated and was a single mother for a while. I had support but I don’t think everybody had great faith in me or my abilities to be a mom, especially my own mother. This wasn’t paranoia. It was said more than a few times that I wasn’t doing it right and that I was a terrible mother.

Patience deserved (still deserves) my best and I tried to do what was best. It was hard. She never went through the terrible twos but definitely experienced the frustrating fours.

I never gave up trying. I still give it my all and I don’t think you ever stop learning. She saw me struggle through some very difficult times. She has seen me at my worst, shared laughter and tears, and she loved me through it all. She has had challenges having a mentally ill mother but I have tried to always make sure she knows how much I love her.

Patience is amazing despite having me as a mom, despite my mistakes, and shortcomings. She loves me and even still enjoys spending time with me. She has taught me so much about herself and myself and life. She made me a better person and opened my eyes to many things. Just the other day, she woke me up just to spend time with me because she missed me while I was asleep. She is so compassionate. I love our talks. I love it when she shares with me parts of herself, introduces me to the things she loves, and keeps me on my toes.

I will always be the best mom I can. I know I will make more mistakes along the way. Hopefully, I will improve in the areas where I am weak. I hope I can continue to grow as a mother. I hope the things I do prove to be exactly what she needed from me. It won’t be long before she’ll be setting out on her own, a grown adult, and being the best person she can be. While I want to see her spread her wings and fly, it will be bittersweet when the time comes but I won’t hold her back.

I hope we will always be close because being her mom has been the greatest gift in my life. She will always be my little girl. I am forever grateful for this role. I love being Patience’s mom now, then, and I always will.

That betrayal nearly killed

Despite what you might think, I believe social media is a great tool to meeting new friends as well as getting in contact with old ones. My favorite part of social media is the groups you can join. Some are for shared interests, fandom, etc. and those are good but I like the ones for support, especially since you can find people who may share in ailments, experiences, and/or traumatic events and especially those with mental health issues, who will understand when others do not.

When I joined Myspace, I made friends but I don’t remember any support groups. I’m not saying it didn’t have any. I am just not aware of them if they had groups. Reluctantly, I joined Facebook when Myspace was dying. Actually, I think I signed up but didn’t use it until the death of Myspace. I began to enjoy it.

While I was becoming involved in Facebook, my mental health issues were all over the place. My anguish was apparent in some of my posts. An old friends invited me to join a support group for people with bipolar disorder which, at the time, was my diagnosis. I eagerly joined. It was wonderful. I don’t remember being too outspoken in the first group but it helped me feel less alone.

I joined many groups after that until I found one that felt like home. These were kindred spirits, my tribe. It was a large, very large, group but not every member was active and it was easy to become acquainted with the more active members. I could relate to the people and I felt accepted in a way I don’t think I ever had before in my life. I made friends. I met some inspiring mental health warriors.

Soon, I was a regular. I shared, expressed myself, tried to offer advice without coming across bossy (because I don’t know all and never meant to sound above anyone), and it made me feel good. I received positive feedback and some members voiced appreciation.

The admin in the group took notice of my positive nature and asked me to join the admin team. I cannot describe how honored I felt and I tried to do my best for the group and its members. The feedback and appreciation from others made me feel so loved. My fellow admin gave me the friendship I was sorely missing at the time. I felt like I had found new purpose.

This is not to say I hadn’t had good friends in my life. It is not that I had never felt love. The group enriched my life and made coming to terms with my latest diagnosis of schizoaffective disorder easier to swallow. I needed them and they made me feel necessary. Yes, I am a mother, wife, daughter, and friend but this group was totally relatable and I need to feel like I am understood, at least at some level.

One of my favorite things was the friendships I developed with the female admin. I feel so far from my lifelong friends and misunderstood by most everybody so I really needed this. They were all so encouraging and fun it was almost like the childhood friendships from long ago.

We chatted a lot. We all belonged to a secret group for discussing group related issues but the ladies had a private group chat and I was included. We shared openly. As usual, I would find myself in situations I felt were inescapable but the ladies helped me find my way. I think I told them almost everything there is to know about me. I trusted them. They were so kind.

It sucks to say this and I’m not sure I believe it wholeheartedly but it turned out I was wrong. It was either that or the fact that the old adage that “all things must come to an end” is true. While I believe they are great women in their own way, I came to the realization that I was still a misfit and didn’t have the devotion from these “friends” as I thought.

What happened?

Last year, I took many absences from being online because I kept getting sick. At one point, I had food poisoning, then again food poisoning, followed by stomach viruses one after another. I would pop in, apologize for not being there, and tend to my constantly ailing stomach. I kept in touch with the ladies, or I felt like I was keeping them up to date. They said they understood. This stomach thing was a recurring issue but they loved me. They would understand. Another admin was frequently absent dealing with her life and no one batted an eye. We loved her and didn’t want to see her go so I assumed the same would prove true for me.

It was a difficult time amongst the admin. A lot of upheaval happened in part because of a newer admin but I still felt like the rest had my back. I would get this gnawing feeling that perhaps they were growing tired of me being sick so often and I worried but tried not to allow the paranoia to take over, having me doubt that the ladies would turn on me. We were friends. Friendships are special bonds that should not (or I believe shouldn’t) be shrouded with doubt and paranoia.

Now, it isn’t that my insecurities were coming from nowhere. They had had a private chat about a now former admin. She was eventually relieved of her admin duties based on said chat. I was left out of the discussion until the end. They said it was because I try to find the good in most everyone. The group thought I would fight them, maybe. So, I excused being left out and took it as a compliment. Why should I have felt bad for believing in the good in others? The admin being discussed was demoted to being a member only. Regretfully, when the ladies said we should all unfriend her, I followed. I am friends with her now but I still feel guilty that I didn’t go to her and address the concerns of the group. I should have said or done something, anything but unfriend her, even if it was temporary but I digress.

At some point, it seems the ladies (and perhaps even the men but they never joined in the gossipy crap) became disillusioned by the latest admin. I can’t say I blame them all things considered. This led to her being let go from the admin team. She was the second lady to be escorted out of the admin group. I thought that because I had been sick and unreliable in my sickness, they made the decision in my absence. It would’ve been understandable. By this time though, I was feeling better and believed if had I been well, I would have been included in whatever discussion was had.

For the sake of this post, I’ll call her B. I will leave A for the first admin to be dismissed. Anyhow, B came to me to ask for my help talking to the ladies. She told me she didn’t understand why she was discarded like an old winter coat. I cannot remember every word exchanged but I do know at some point telling B about my paranoia that the admin were talking about me behind my back but that I knew (or thought I knew) it was just a case of paranoia.

That is when I was told of the betrayal. She told me she had to share some screenshots with me and to brace myself. She sent screenshot after screenshot. They all had nicknames but she clued me in to who was who. I couldn’t believe what I was reading. It was obvious B had instigated the chat but each lady I believed was my true blue friend seemed to have had no problem joining her with assumptions as to my activities because no one has that many cases of food poisoning.

They didn’t believe I was really sick. Not once during that time did any of them come to me but instead took part in this hateful chat. They didn’t come to me because they were chatting about me with each other in this private chat. They bashed me, accused me of despicable behavior, and argued about who was going to confront me. I say confront because based on the words they used to discuss me, there wasn’t an ounce of concern. There wasn’t any mention of concern at all. It was all condemnation. I think B thought showing me the discussion would make me trust her or take her side about her dismissal but some of the things brought up were about things I only told her. She said disparaging things and it was painfully obvious by the things the others said could only have been brought up if she told them some things I told her but adding her own disgusting twist. Like the fact one of them said I was screwing a young man, cheating on Andrew. I had mentioned once that I was talking to a younger man who was a long time friend and B suggested I screw him to which I said I don’t believe in cheating no matter what.

After a few days of crying, I did what I felt was best and unfriended each of them. I continued to be the best admin I could be but without the friendships with the ladies. Since no male was involved, I didn’t unfriend them. I made a point of posting any compliments I was given by members in the secret admin group. Why? I wanted them to know that I still valued my position as admin and with the exception of being sick, I would be there for the group. No one said anything about being unfriended so I assumed this was just how it would be. In my mind, I believed it was out of respect for me so no comment necessary.

One morning, I was checking the notifications and saw a tag to a post in the secret admin group we had. My stomach was in knots as I read the post. They were angry. They were blasting me for unfriending them and telling me it was all B. They had nothing but concern for me. I began to comment pictures of the screenshots. It didn’t matter to them that I knew. I hate being in trouble with anyone I love but was mistakenly wrong in my assumption that I would have their understanding. I didn’t.

I was commenting back and forth when the post became unavailable to me. I knew at that moment, I was no longer going to be part of the team. I tried clicking on a notification from this secret group, denied. I tried to access the big group fearing I had been booted and sure enough, I had. The group wouldn’t come up in a search so I had been blocked too.

Since I had made a lot of friends from the group, I posted on my wall that I had been booted. I fear so much but the main point of the post was so no one felt like I abandoned them.

Turns out, I have some great friends. They stuck by me and went to the group’s admin asking for me to be readmitted. I don’t know what was said and good or bad, felt like it wasn’t my business. The important thing (and amazing thing) was I was wanted. My friends who were in the group stood up for me. I was hurting but knowing I was wanted meant everything to me. At some point during the day, I was made a part of the group again.

I thought being back in the group was all I needed. This group was and is very important to me. Unfortunately, it wasn’t the same. A couple of times, this admin or that came to me accusing one of my posts being about them or the situation. None of my posts were about them. This is a group that all live with one or more mental health issues so I told myself that it was their illnesses and not that the ladies held me in such low regard. While I knew I wouldn’t be admin again, I believed I would be part of the group like I was in the past.

However, it came to a point that I only felt that I could post motivational memes or quotes. I rarely shared my own personal issues or commented because I didn’t want to offend anyone. I had once been a voice in the group but no more. I felt helpless when guidelines were violated and a member needed an admin and I couldn’t help. Guidelines were violated and in more than one occasion, an admin liked the post. I would’ve understood if said admin had commented that a rule was broken and asked for the poster to delete but not liked it, leaving it up in the group; however, at least I was in the group. I felt guilty reading posts and not saying much to be supportive but in my mind all of it was temporary.

Frustration had grown out of what felt like forced silence so one day, I posted an apology for my silence. I tried to be as vague as possible yet still explaining why. I wasn’t vague enough but I was careful not to call any of them out by name. People commented. I responded to comments without disclosing the details. One of the comments hit a nerve with one of the ladies and this person lashed out and made a thinly veiled threat to be silence me if I didn’t stop attempting to poison the group against the remaining admin. I have never tried to be poison. I never told the group as a whole the story so I found the accusation unfounded. I only shared details with those I felt especially close. I responded to her and I believe I said something about feeling bullied or that she was being a bully to which she responded I needed help from my mental health team. Nevermind the fact that bullying violates guidelines.

I am still in the group. This group is very special to me despite it all. The members meant a lot to me. I love them. There was more agonizing turmoil but no one kicked me out of the group. For that, I am grateful. I left the post up for most of that day to read the comments from others but decided to delete it. I found it insincere to be told that she was hurting too by the one lady I thought I shared a close friendship.

In fact, I was highly offended when the person who spoke out against my post insinuated the whole ordeal was painful for everyone involved.

Excuse me? I didn’t read anything cruel being said about her or any of the other admin.

I wanted to start posting the screenshots in the comments but didn’t. It wasn’t meant for the entire group. That would have certainly meant banishment. I wish I hadn’t allowed it to get to me but it did. Of course, I cried.

Not wanting to abandon anyone even if my presence was not really important to anybody, I stopped being actively engaged. Today, I remain in the group. I am back to posting motivational stuff and occasionally commenting. At least I am present. I read my fellow warriors posts, react with one of the reaction emojis but I refrain from commenting in the same way I had previously.

This was not the end. In fact, it gave way to a new beginning.

With the encouragement from my dear friend Ayla, I started a small group. I have no desire to compete with the big group and in the new group, we decided to keep it small. I don’t want to replace the big one or try to replace it. The new group is a place where I can be myself without worrying if my words are misinterpreted and hurt any of the ladies I once called friends. I want to make it a safe haven, especially for the situations that come up where a person might prefer a smaller, intimate audience. Sometimes a large audience is intimidating even if there are only a few dozen active members. If anyone is like me, the lurkers can cause some paranoia.

I love them despite the gossiping chat they had about me. I love them even though one has sent me a personal message calling me out as a phony because I speak of love and she doesn’t think I am brimming with love like I try to be. (I was even told I’m hateful because of my tweets which are mainly retweets or providing fact checked information when I see a tweet spouting inaccurate and/or misleading information. I would hardly call the tweets bullying. ) I refuse to let this destroy me but it still hurts me tremendously. I just wish that as it was all going down, at least one would have truly come to me with love and concern rather than trash me, believe the worst of me, and speak so harshly me. I can’t believe no one spoke up for me or offered to talk to me and get to the bottom of what was going on with me. The lady I thought I had the best connection expressed how she found me difficult. She didn’t feel the same about me or see our friendship as I mistakenly did. Ouch!

Life can be painful. Life is full of disappointments. Life is also beautiful. For me, I will continue to have hope, try to believe I am a good person worthy of friendship, and not lose the love I have for the people who have been in my life. This lesson hurt but it didn’t kill me like it first felt like it would.

Preparing for Flight

So it is now 2019. I made it through a difficult year of 2018 and I’m still here. Each year is more and more challenging. They started the same. After ringing in each year, I would say that the upcoming year would be better but the years haven’t gotten better. I feel like I must be jinxing myself.

This year, I decided to leave those words unspoken.

There is so much happening and it scares the hell out of me. I have cried, screamed, made some calls (which I hate doing), emails, talked ad nauseam about these things. I know the world can’t stop but would it be too much to ask that it slows down for the speed bumps? What kind of world will my generation be leaving for tomorrow’s leaders, thinkers, poets and intellectuals or mothers, fathers, sons, and daughters?

I keep hearing, “We can do better” but when it comes time for people to step forward, take a good leap, and jump over the moon, it seems they sheepishly take a step back. It may be just a small step but in the wrong direction. I know I am painting a picture that is grim. All hope isn’t lost. It’s just so frustrating.

I want to be present. I want this all to have meaning even if it is just not to do this again. I want to leap up over the moon. I prepare myself for flight and discover my wings have been clipped. I sit. I watch things unfold. I want to join the fight but I’m a caged bird who has no confidence in her song. I’m armed with good intentions which do nothing to combat the ills I see in my world.

If I could just step out and go further than the closest grocery store. Volunteer work is everywhere and I don’t feel well enough to be a part of it all, to make a difference, to build a fire in this darkness.

I talked to Andrew about maybe taking some classes and he was encouraging. I don’t know. My new meds are helping but my wings are still recovering. I must have patience. I must work to get my strength back. My time isn’t wasted in recovery. I will keep my eyes to the sky. Someday I will fly again. The world needs a lot of work so it isn’t too late today and I have hope. I do have a song that needs to be sung and only I know all the words.

Today, I work on myself so when I’m ready to fly, I will be able to soar.

I know you are still here

I see you standing there

Out of the corner of my eye

You never left me

You have always been a faithful companion.

 

But I don’t want you here.

I don’t need you here.

It hurts to see you in my eyes

I feel your breath on my neck.

You are cold.

 

You reside inside my soul

You are in my heart

You keep me real

And make sure I feel pain.

 

Why must you be here?

Why must I see you?

You’re that constant reminder

I am a monster. I am a disaster.

 

Since I was a little girl

You’ve haunted me at every step

I would question why

But I know I have drawn you here.

I know you are my creation.

 

It is time for you to go.

Let me be. Set me free.

I do not want you as my companion

You are not a good friend.

 

You remind me of my faults

You remind me of my failings

I know those things are human

But you place shame

 

Each time I feel I have won

That you have been defeated

I see you eventually

Out of the corner of my eye

And I know I will never be alone

 

I would not mind if you were kind

I would not mind if you let me enjoy the victories

Instead the light shines on the beast inside

I should learn to coexist

 

All the years that have past

You would think I would have made peace

But I want freedom from you

As I am more than just the pain.

It hurts

I want to start by saying I don’t want to die. I really don’t. I am, however, suicidal. I don’t know how to explain it to someone who can’t reconcile these feelings when they don’t even make sense to me.

September 8th, I turned 48. Like so many people I have met, I am surprised to still be. For most of my years, I didn’t want to be. I didn’t know how I would die but I thought whatever happened, it would be my fault. I would become another statistic for any number of reasons. I thought my only purpose had to be that I was a cautionary tale for others to…

get help, don’t cut, don’t drink and drive, say no to drugs, etc…

Nothing made sense then. I’m not saying it makes sense now but possibly less then.

The clinic where I go for meds is in the midst of changing my meds. We are doing it slowly. If I could go in-patient, it might have been quicker but I have bigger responsibilities here that cannot be put off for weeks while I adjust. I want to remain optimistic this will help but I have other issues.

I have great friends and family. I know I am loved but I feel like people have given up hope that things will get better for me. I have been told by a few that they have given up on me. They think I’m not going to get better. To hear someone say, “I’ve given up on you” hurts. It hurts terribly.

I feel like my heart is broken to know some see me as permanently broken. I want to stay hopeful that I will break free from the worst of my illnesses but it is hard. Should I give up too? Should I come to grips with the fact that I will never be a fully functional adult? I want to be able to manage my life, handle my responsibilities, keep a clean home, be the best learning coach to Patience, and be on top of self-care. Right now, I can do some of the things but I’m still stuck and I fear my light is barely shining. I fear the little bit I have left is an annoying reminder to the ones who have lost faith in me. I fear my light will become a mere spark that will be snuffed out by the slightest breeze.

I DON’T WANT MY SPARK TO DIE.

I want my friends and family to believe in me. I don’t want those closest to me to think this is as good as it gets. I’ve always been a little immature but I used to handle my shit. Bill’s paid, apartment ridiculously clean, and myself meticulously groomed every day. I want to be her again. I don’t like letting people down or them feeling like they cannot depend on me. I am trying but I think I may have kept them waiting too long.

I have always been ill but I managed despite my symptoms. The positive symptoms weren’t frequent as they are now and I fought the negative symptoms pretty well. Ever 2009, I’ve lost myself and had several major episodes of psychosis, the positive and negative symptoms are present all the time. I feel worthless.

I have been trying. I don’t want to lose hope but it is hard when others don’t believe in you. If they don’t believe in me, why should I?

I can’t let my light die. I have to remain hopeful and have faith.

What was that I heard?

I had a severe breakdown in 2009 that led to several continuous episodes of psychosis that all blended together for two years. My mind hasn’t been the same since then. I used to be able to manage and function but now I am plagued by symptoms daily, the worst being voices. Today was a particularly difficult day. Here are some of the things they repeated:

“They are all going to leave you. You are going to be all alone when you die.”
“No one s really your friend. People just like watching a good train wreck.”
“He hates you so much he secretly keeps his bags packed to leave at a moments notice.”
“He has a secret cell phone to talk to his lover.”
“She cannot wait to be an adult so she can leave you like everyone else does.” “She hates you. You ruined her childhood and she wants to be rid of you so you’ll stop ruining her life.”
“You deserve to be treated like this by the ones you call your friends because you are the worst. You are the object of all the hatred they feel.”
“Why don’t you just do it and die already?”
“You are so ugly. People are only nice to you out of pity.” “You are so fat and disgusting he would rather be with anyone else.”
“You have no idea how much people despise you.”
“Look at yourself. You are an embarrassment.”
(laughter) “I can’t believe you actually thought they were your friends. You have no friends.”
“We are the only ones who are going to be there for you and even we cannot wait to be free of you.”
“Die, just die.”
“Go ahead and cut but make it count this time.”
“No regrets, just continue in your miserable life. You must die.”
“Why are you smiling? No one is smiling with you.”
“Why don’t you cry about it?” (laughter)
“Yes, he unfriended you. They all will when they are done with you but first they need something to hate.”

Today has been pure torture so I slept most of my day away.

I am not looking for sympathy or advice on how to fix it. These voices are two men and a mix of random voices telling me, shaking me, playing on my fears. Most days, I find ways to distract myself that make the voices fade into the background but today they were too loud and relentless. I know I’m not alone. I know others have it just as bad. Today has been one of the worse but tomorrow is a new day and perhaps the voices won’t be quite as intense.

I’d like to think I am basically a good person who happens to live with a particularly difficult disorder. If you are not afflicted with schizoaffective, schizophrenia, or any other psychotic disorder, enjoy life as much as you can. Life isn’t easy but there are reasons for everything so never take it for granted.