Where is the easy button?

I recently asked my husband, who is also my caregiver, what he would say to others in regards to living with schizophrenic disorders.

His response? “There is no easy button.”

My husband and I have been together for twenty years. He has witnessed and lived the tumultuous journey of mental illness with me. Even though when we met he did not know I was ill, he often states he knew something was “off.” And as our relationship progressed, he has traveled the road next to me through various treatments, hospitalizations, medication regimens, social and work challenges, personal turmoil, a suicide attempt, and the countless challenging days of living this life. So, I have to agree with his assessment; there is no easy button, magic wand, or a way to snap your finger and progress through this disorder. It is work. Daily, hourly, and sometimes minute by minute work.

As my husband and I have traveled the past twenty years, he has had to develop a true expertise in psychiatric treatments. When a new medication is introduced, he not only researches that medication, but also how it interacts with my current cocktail. Of course, he keeps himself prepared for the side effects that will join in on the journey. For example, with Clozaril he accepted that I had to sleep with towels because of the excessive drool. He also had to research when the diagnosis of tardive dyskinesia arose in my twenties while on Haldol and how we could lessen its impact. The side effects from the medications are numerous and are not easy… medication is not a magic bullet. But, the secret is finding the right medication where the benefit outweighs the side effects.

What also is not a magic bullet and is never easy is to be hospitalized. My husband has been beside me through twelve inpatient hospitalizations. He has dealt with difficult doctors, the overhaul of medications, and the aftermath of when the hospital staff has stated I was not ready to be discharged, but the insurance will not cover any more nights. Of course, there is also the financial challenges of hospitalizations. It is not easy.

He also been there when I faced discrimination due to my illness and lost countless friends along the way. He helped me pick up the pieces after losing a job after an inpatient hospital stay and he also helped me find another route to my masters degree when my first choice school said no due to my diagnosis. He knows how lonely it can be with my illness and how friends often disappear; but, he has stayed. There were never any easy options, but we worked through them.

More than anything, the daily life of living with schizoaffective disorder is challenging. My stability can change with varying degrees from moment to moment. Everything from human interactions to sleep is impacted. And my husband is right, there is no easy button. There is no magic pill… or cure.

But, it is that way with life, in general. We often wish that an easy button would appear to ease us through a situation. But, it doesn’t exist and there truly are no shortcuts. So, at the end of the day, you focus on the blessings, the good moments, and the days that went just a little easier than the one before. And because I have my husband, that is easier to do.

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For Him

Some days, I just tire of taking medications. I tire to my core.

Other days, I think I can manage my dosages, maybe skip a dose here or there, or just go raw.

Of course, not taking my cocktail of medications has drastic repercussions. And I have witnessed some of these repercussions in myself and in others.

One person whom I witnessed living with an untreated severe mental illness and who left massive repercussions in her wake was my mother. A woman who lived in paranoia, a manufactured reality, obsessive behaviors, narcissism, and mood swings, my childhood with my mother in her untreated state was Hell. She could not mother and she  was abusive. Her behavior was erratic and unpredictable. There was no trust, no connection, and a bond was never established.

I remember the confusion when she would report back lies about my behavior to my father (he also was untreated, but that is another story for another time). She was so certain in her reporting of falsehoods that doomed me to punishments. Now, I see it was part of her skewed mental chemistry left to its own devices. Also, she wouldn’t provide for me the basics, such as clothing, so my grandmother would buy me clothes for school or dresses for me to wear to church. I will never know her reasons, but she would either give away the clothing or take them to consignment stores for money. I was not allowed to keep to the clothing. Nothing was permanent- anything could be taken away. Add in her issues with Munchausen by Proxy, and my childhood became a shell. I counted down the years until I was eighteen.

Now, I am here nearing forty and I am a mother. A mother of an eighteen month old boy. An innocent little being who relies on me, trusts me, and is fully bonded with me. So, while I tire intensely from my medication cocktail; I push forward, not just for me, but for him as well. While I sometimes think I could alter my medications to gain a little more energy or handle things “better”; I don’t, for myself, and for him as well. I can be a true mother living with my illnesses, but I have to learn from the lessons I have witnessed.

So, for him I take care of me.

Detour of Isolation

It tricks you. It works against you. You battle it.

When living with a schizophrenic disorder, your  brain can become your foe. Your brain, the control center, can fool you and send you on a detour.

As anyone with any form of schizophrenia can attest to, social interactions are a challenge. But at the same time, the isolation is painful. And enter in that pesky brain, you can go down a path of paranoia, self doubt, isolation, fear, and arrive at a place where social interactions are far from your abilities.

I found myself there recently; on that detour of isolation that was partially self made and partially cemented by delusions. I let the voice mails pile up on phone… a total of twelve voice mails that I was too afraid to listen to and could not begin to even respond. I also began to think how my friends had decided to cut me out of their lives- based on nothing but faulty brain messages. I was also convinced these friends were talking about me in a negative way with each other. I missed a get together with a friend and didn’t even respond to the friend about the get together. I found myself paralyzed by a brain that couldn’t fathom the complication of making a simple phone call.

As I traveled on this detour of isolation, my brain continued to trap me with delusions and  paranoia. And slowly, without warning, the fog began to lift just a little and I was able to reach out just a little to a friend. There was no rhyme or reason to the cycling of the delusions or paranoia. No warning.

Isolation in schizophrenic disorders is complicated. For one, your brain does you no favors as it transforms reality. Also, relating to others, in and of itself, is a challenge. The isolation seems to be a common state that just reaches high points at times.

I think this is one of the reasons I write. I send out these experiences to vast virtual world. It is a way to connect and lessen the isolation that can trap me. So, if you are reading this, thank you for helping me break the isolation.

Down the Rabbit Hole

As I became a mother, a phrase entered my mind about the experience: “I was falling down the rabbit hole.”

I need to explain.

I did not attach to my own parents. In particular, I did not attach to my mother. In fact, part of my own work through the ten plus years in cognitive behavior therapy was to deal with my own attachment disorder. In addition, I have not had any contact with my birth parents in fifteen years. They have not met my child, nor will they. When he is an adult, he can choose whether or not to initiate the contact. But for now, I will not allow that happen out of protection for him.

My mother was not a woman meant for motherhood. When I was born, due to her untreated mental illnesses and various physical difficulties from my birth, I was given to various family members for care. Up until approximately the age of two, I was under the care of grandmothers and aunts.

In particular, one aunt provided extensive care for me. Later in childhood, my birth mother told me this aunt did not like me and gave disturbing details about my personal flaws that bothered this aunt. It was extremely confusing as I had imprinted this aunt as a caregiver. In fact, even the smell of grape juice reminded me of her. During communion at church when the smell of grape juice wafted through the sanctuary, I would think of this aunt as she served grape juice at breakfast. She always had it available. I would smell it and see the flower pattern on her carpet and think about the texture of her table. Then my mind would condemn itself for not focusing on God during communion and thinking about a woman my mother had told me hated me so much.

I know the truth now. This aunt was pained to see the situation I was in with both my mother and abusive father. But, families keep secrets.

When I decided to become a mother, I was certain that attachment was a priority due to my own pained journey. But, when you have not attached to your own parents, how does attaching to your child feel or happen? Simply, it is like falling down the rabbit hole.

For my journey attaching to my son, there was a pivotal moment. I remember my son being approximately two months old and I was changing his diaper. He looked up at me with his big, sweet eyes. And my heart stopped. I scooped him up with tears in my eyes and took him to lie down together. I cuddled him and softly cried. He fell softly asleep, secure that his momma had him. My heart felt so big and I felt so small.

Despite everything, my son and I are securely attached. We cuddle. He naps on me. He comes to me with his concerns during his toddler activities. He celebrates his discoveries with me. He expresses his frustrations at me. We are attached and continue on the attachment journey.

I have traveled down the rabbit hole… I have found aspects that have made me so small… and have been bigger than big.

You can attach to your child when you have not attached to your own parents. But, you have to be ready for that journey as it is a journey into an unknown world and down a rabbit hole.

Stepping Out in Faith

It has been one month since I transitioned from college professor to stay-at-home mother. This decision was the best decision I could absolutely make for my son and I’s well-being.

I have always been one who drives myself hard. I vividly remember the summer before my sophomore year of high school and attending the Kansas State Student Council Conference. The speaker was discussing motivation. He stated we should always strive for “harder, faster, higher, stronger.” I took that in to my core. I actually took it in to my detriment.

What many don’t know is that for me to finally admit to myself that my psychiatric illness has progressed to a point I can no longer balance my academic career with parenthood is a monumental achievement for me. To finally put the mantras of doing just a little more aside, is an achievement my psychiatric health providers thought they would never see.

There is also another aspect to this astounding achievement. I finally began to quiet the childhood messages I had been harboring for thirty years. Throughout my childhood, I was told how I was lazy or wouldn’t be able to work for a living due to my laziness. The repeated messages drove me to destruction. I would often work two or more jobs, teach overloaded semesters, or even drive ninety miles one way to work at a particular university just to prove to the universe that I was not lazy.

But, I finally said no to this self-sabotage. My illnesses were rapidly progressing, my cognitive decline was gaining momentum, and the most precious soul in front of me was growing faster every day. My doctor stated she respected me, but that my work ethic was my detriment and was hastening my demise.  And truly, at the end of the day, I had to ask who I was trying to prove my worth to… myself or the messages?

So, I stepped out in faith.

I now spend my days with my amazing child. I am also able to set up a routine for myself, which is so important for anyone with a schizophrenic disorder. There is not a lot of money rolling in; but, there never really was when I was teaching. Sometimes, the rewards of faith carry value that cannot be counted by dollar bills.

On the Other Side of Fear

When one decides to become a parent, fear is a common emotion. Even before this decision is made, some fear invades our thoughts more often than not at the consideration. But, what is on the other side of fear?

As someone living with mental illness, and also as someone who survived an abusive childhood, the concept of parenthood often carried a significant fear factor for me. Fear of passing on faulty genes. Fear of repeating damaging familial patterns. Fear of basically damning another innocent person to my same troubled existence. Fear encapsulated me. There was no other side.

But, let’s look at the genetics question. First, I am not the Creator; nor do I possess a crystal ball. I cannot foretell the future. My theoretical offspring could never have mental illness grip their life. Furthermore, did I, personally, feel that anyone who carried any genetics for any disease give up reproduction?

No. Never. Not at all.

Plenty of individuals with diabetes, multiple sclerosis, arthritis, asthma, and countless other issues have reproduced. If they lived on the other side of fear, why wasn’t I willing, as well? It was because of fear.

But, on the other side of that fear is a parent with a husband who has seen it all in mental health care. We could both see the warning signs, if they appear. We could advocate, support, and provide care. And most importantly, on the other side of that fear is love.

Then there was the aspect of my fear that was concerned with repeating damaging familial patterns. A very legitimate fear as we tend to repeat what we have learned along the way. But, I had to consider something powerful about my journey. At the age of twenty-three, I pro-actively entered therapy. In addition, along that therapy journey, that ultimately lasted thirteen years, I severed my ties with my parents and created my own life. I had addressed my familial patterns- except for the pattern of fear.  I still needed to view the other side of fear.

I had to push past the fear to the other side. I had to find the faith in myself that had been sequestered since day one. I had done the hard, arduous work; and now it was time to allow myself to live.

And I did live… and found on the other side of fear is joy. There is a joy in the form of a beautiful boy who is my all and that I would protect with my all. I pushed past the fear and arrived on the other side.

I am Momma- standing on the other side of fear.  

The greatest of these is love…

“Aren’t you afraid he will get your disease?”

The question uttered by a colleague at a department picnic this past summer when I was still working as a college instructor. This colleague had known me for a few years. She had known me when I was still adamantly not going to have children. She knew of my diagnoses. And this was the first time she had seen me since giving birth. This was the first time she met my son who had just turned one year old.

And this was the question; a question about my fear of passing on my psychiatric illnesses. Not a question concerning the million other things that happens with new motherhood- a question of genetic loading.

I wanted to respond with my sarcastic self and give a blank stare and state, “why no, I never thought about that.”

Seriously, I waited until thirty-six to entertain motherhood. I had heard for years from psychiatrists, psychologists, and social workers about my genetic loading. I had read countless articles about the increase in odds of a child being diagnosed with a mental illness when a parent is also mentally ill. I, myself, am ABD in my psychology doctorate. I think I may have visited this topic before.

Did this woman not think that when this little boy looks at me with his big brown eyes that I earnestly pray he will never know the torment of violent mood swings or the torture of psychosis?

But, at the age of thirty-six, wisdom had also joined in to calm my fears. Therefore, I did roll the dice and become pregnant. And here is why:

First, I know that with genetics, 1+1 does not always equal 2.

Second, I am so much more than my diagnoses. Yes, I live with schizoaffective disorder, obsessive compulsive disorder, and PTSD. But, I am also so much more than my illnesses.

Third, if my little man is afflicted with a mental illness, there is no one more capable than myself and his father to help him through the maze of that journey. We both know that maze forward and backward. We can be the support he would need and deserve.

And lastly, I love this little man with all my soul. And as we know, the greatest of these is love.

So, to my inappropriate colleague, I must say that it may happen. And if it happens, this little man has all the love and support in the world to fight every day for him to thrive.