LIFE AFTER DIAGNOSIS

I Decided That There's Life After a Diagnosis
Karen -- England

I am a survivor of childhood abuse including: physical, social, emotional and sexual abuse. There were many days as a child that were horrible nightmares for me. I also have a serious mental illness known as depression. I believe I came to terms with my abusive background somewhat, but my battle with depression has been much more difficult than I ever supposed. In someways I understand the grief and despair Job talks about when he said:

Oh that my grief were thoroughly weighed, and my calamity laid in the balances together! For now it would be heavier than the sand of the sea. (Job 6:2,3)

I left home when I was 18 and then joined the Church. The gospel has always been very important in my life since my conversion. All I wanted was to be happy in my family and reach my ultimate goal of being in the Celestial Kingdom with them. Regardless of my challenges in life I have always been driven by an elusive but real goal, an inheritance in the Celestial Kingdom! I continue to feel the need to move on towards that goal. I left school with no qualifications but, because of my church background and the positive support of some great friends, I managed to get a degree in psychology and also a Ph.D. in psychology and medicine. I practiced as a mental health professional for awhile. I believe I was a good therapist. But things changed. Psychiatric hospitalizations, medicines and doctors became part of my life. I became the patient. Perhaps you are wondering how a person who is highly educated and who has worked with people from all walks of life as a mental health professional, can get herself into such a mess. Well, let me tell you, it has been very easy.

More and more people are being struck down with stress related illnesses and depression. More and more people are having nervous breakdowns. Depression among church members is also a concern. One of the contributing factors for this may be that we put such high aspirations on ourselves. We feel a lot of guilt. For example, I felt bad because I couldn't be a "Molly Mormon"! No matter how hard I tried. I felt guilty because I didn't know how to live up to the high expectations that others seemed to put on me. Then I became stressed. Another factor contributing to depression is a chemical imbalance. I learned in college, that when neurotransmitters in the brain aren't working right, depression can occur. I believe in my own case my depression initially resulted from a combination of these two factors: stress and a chemical imbalance. However, after years of living with depression and thoughts of suicide I believe my real enemy was the chemical imbalance. For some reason by brain chemistry just won't work right on its own.

I have come to learn how to deal somewhat with the "Molly Mormon" issue. There is nothing wrong with having high aspirations. We need goals to work toward and the goal of eternal life is the best. Nevertheless, the Saviour doesn’t expect us to get there all in one day. Here a little, there a little, precept upon precept. That’s how it works. But the mental illness still puzzles me. I've studied it at college. I've counseled others in dealing with it. But living it is so much different.

Approximately ten years ago I was in the throes of breaking up with my first husband and planning to leave him because I could no longer cope with the way he treated me. We were the typical Latter day Saint family with two children, lots of callings between us and always very busy. We were married in the temple. To others I'm sure we looked like the ideal LDS family. In the year before the break-up I had tried to commit suicide twice, had been in hospital for five weeks with severe depression and had had electric shock treatment (ECT). I finally left my husband and I went to live in another city. I maintained contact with those whom I considered close friends. In subsequent weeks all sorts of gossip passed backwards and forwards to me and my friends. However, the most hurtful message was that shared by a well respected church leader in the area. He told at least two people that the reason the marriage broke up was because I was mentally unstable!!!!! I couldn't believe someone would say that about me. I was devastated. How could anyone say that I was mentally unstable?

ECT is a procedure typically used for the most severe cases of depression. A last resort effort for treating depression. ECT is a procedure that requires a general anaesthetic after which a fit is invoked which stimulates some of the nerve receptors in the brain. I don’t fully understand how it works. I’m not sure anyone does but I do know that I have had at least six courses of 10 or 12 sessions during the last 12 years. I also know that, contrary to medical opinion, my memory has suffered greatly as a result. I have lost so many long term memories that my mind is like a patchwork quilt, put together with bits of memories but lots of gaps in between. It’s quite frightening and embarrassing. I have just met up with my sister, who lives in South Africa. We hadn’t seen each other for 26 years. We reminisced and talked endlessly about our childhood but most of it was spent with her filling in the gaps. I had lost so much. She was quite shocked at my lack of recall of many, many, situations.

I've had many hospitalizations because of my mental illness. One hospital inpatient period went for 9 months, followed by another 7 months, then a 13 month period and later still an 11 week period. Let me tell you a little about my personal feelings and thoughts related to my going into a mental hospital, for the first time. It’s quite a few years now and my memories have been mangled by too much ECT. I do recall that while I was in the hospital some members of my ward avoided me and talked about me in a negative way. Only a few close friends visited. Most stayed away. Perhaps because they didn't understand why I was there or how I could possibly have got myself into such a mess. Or maybe they were scared to come to the hospital. I don't know for sure. The hospital itself was an old Victorian building with long corridors that were old and dilapidated. I was ‘sectioned’ under The Mental Health Act, Section 3 which meant that I
couldn’t leave the hospital without the consent of the doctors. I was constantly watched on Special Observations to ensure I didn’t commit suicide. I was a high suicide risk and I felt so terribly alone and frightened and closed in, as if I were in prison. To not have one’s freedom is to take away one’s soul and I felt soulless and abandoned by everyone, my neighbors, my church friends and even the Lord. This is not to say I thought it was God’s fault, I must make that very clear. What I would have liked to have felt more of, was others not judging me so harshly and people just showing they cared
about me.

After my divorce I realised I had failed and was even unable to kill myself successfully. I changed my thinking and decided to get a job 100 miles away where I could start a new life with my two young children. I was successful in getting a job, a house, and a good bishop. I had worked as a volunteer counsellor for LDS Social Services but nothing I learned there prevented my depression from developing badly. In my first 18 months alone I worked ridiculously long hours and spent every other waking hour with my children, trying to bring them up in the gospel and give them a good life. There wasn’t much time for sleep. Then I became physically ill and that was the straw that broke the camel’s back. I had another major breakdown. I returned to the hospital and my mental instability was in absolute despair. I lost my job and have never worked since that time. I have subsequently been in and out of hospital with a succession of treatments designed to help me. These procedures just didn't seem to work as well for me as they did for others. I still felt depressed and suicidal.

I never felt abandoned by the Lord, however, I felt totally worthless as person, worthless as a mother, worthless as a professional, and worthless as a wife. I could see no good in me and I constantly berated myself for being mentally unstable. I knew that one of the major symptoms of depression was "feelings of worthlessness and excessive and inappropriate guilt" but it didn't help knowing, now that I was the patient. For me those feelings of worthlessness seemed to be a fact of life, and not a symptom of any mental illness. Job curses the day and services of his birth and asks “Why died I not from the womb?” (Job 3:11) This thought has pressed upon my mind many times. I have felt so weak and feeble that my existence has often been in question but I have prayed that the Lord will take away my pain and discomfort and he has done so. I don’t think I have reached the end of my trials. I think I’m currently having a rest from them, but who knows? Only God! And who am I to question Him.

Depression is a powerful mental illness an all engulfing disease. Sometimes, when I wake up in the morning and look in the mirror, I cringe about how horrible I look. The thoughts of suicide come and go. It use to be that no matter how active I tried to be in Church or how hard I prayed those thoughts of killing myself came. Over the years the suicide attempts were real outlets for the hatred of myself and my desire to get out of the situation. Those thoughts aren't so overpowering today. The medications help. I have looked back at that time now on what others in and out of the church were saying about me. The truth of the matter was, when I divorced my first husband I now realise I WAS mentally unstable! That label has stuck and haunted me over the years. Some people still see me in that light. I'm not known as Karen ----- Ph.D, Sister -----, or Mrs. ----- but rather the one who is "mentally unstable." It still hurts me deeply.

The stigma of being "mentally unstable" or "mentally ill" carries with it a whole host of other baggage. If you’re mentally unstable, it stands to reason you can’t hold down a job. If you’re mentally unstable, you cannot hold a calling in the church. If you’re mentally unstable, you’re not a good mother or wife or church member. If you’re mentally unstable you must be possessed by the devil. Fortunately, not all my friends saw me in this light. Some tried to be positive and uplifting and tried to help me see that I was worth something, even though I truly thought I was not. For these friends, I will be eternally grateful.

I want to be with my family and my friends and the people I care about - and there are lots of them. I have been so blessed with lots of good friends in my life. I have often wondered why they wanted to be friends with me but I’ve since learned, - to have good friends one has to be a good friend - and I’ve tried to be that all my life. I know what it feels like to be alone and without friends. Now I go out of my way to be the best kind of friend with everyone I meet. Some friends are closer than others. Some are soulmates. I want to do this because I love people not just in a general meaningless sense but in a very real sense of wanting to take away their anguish and pain, wanting to take their hurt upon me so they don’t have to suffer as much. I think I’m beginning to understand how the Saviour loves me and its scary. I’ve never confronted this idea head on before. What a powerful thought, to be loved by the Saviour!

I also married a second time when I was still seriously ill with chronic depression. Now I cannot remember anything about the ceremony at all. This marriage also broke down after five years. I blamed myself for this, even though my husband committed adultery. Both my marriages were in the Temple. With both of them I had such high aspirations. In fact, I still do. The one thing that has remained constant with me all this time is my testimony of the Gospel and my love of the Lord Jesus Christ. I have had trouble feeling He loves me (I was not worth loving) but I have always loved Him and have been forever grateful for what he has done for me. And therein lies the rub. What has the Lord Jesus Christ done for me? Well, He has given me hope when I have been at the very edge of despair. Hope in things eternal, hope in a better life than this one, hope that one day I will be a better person than the one I am now and hope that one day, if I ever get to the Celestial Kingdom, I will be "given to another". You see, I still dream of eternal marriage: the New and Everlasting Covenant, the goal of all aspiring righteous Latter Day Saints. I don’t want to spend eternity alone. I have too much love to give. I want to have more children, and do a better job than I have done here. I want to reach out to all my friends and have them there with me. I don’t want to be bitter and twisted and mentally unstable in the next life.

Somedays hope is difficult to find. Even now once in awhile the only hope I have is that I can "... endure to the end ..." (2 Nephi 31:20) and do the best I can with the resources I have. I have hope in getting well. But deep down inside I realize this might not happen while I have this body. But I believe I'll be resurrected as Alma says "... all things shall be restored to their proper and perfect frame" (Alma 40:23). At that time, the Lord will do the thing that all the hospitals, medication, ECT, and counseling in my case never could do- "make me whole again." I've been "mentally unstable" for so many years now I'm not sure I know what it would be like to be "normal" and not feel despair and depression. But then I’m reminded of the Saviour and how he healed those who looked horrible with leprosy and how he healed all the sick, including those who were mentally unstable. Then I am reassured.

Over the years I've developed a "survival mentality." First of all, I decided that there's life after a diagnosis. Getting the news that you have a medical condition like depression that you'll be dealing with (in all probability) for the rest of your earthly life can be a major shock to the system! Recognize that there are literally "millions" of people including members of the LDS Church around the world dealing with this same disorder. You're not alone, and there are many resources available to help us cope. Believe me, I know there is life after one is diagnosed with depression. True, the quality may not have been what I hoped for, but there is a life.

Second of all, having a survival mentality means that when times DO get tough, you do what it takes to get through it. In my case, this meant involuntarily checking in to a hospital under a doctor's care. This isn't an experience that most people would seek out for themselves, but when things get badly out of hand, it can literally be a lifesaver. It has saved mine. Remember: your first goal is to "survive"--to take care of yourself the best you can. Your secondary goal might be to contribute as much as you can to the lives of your friends, family, loved ones, co-workers, etc... or it might be something else entirely. But if you don't take care of the first goal, you- the other ones are utterly meaningless. Believe me, I know. I've tried it both ways.

The third trait required to survive has to do with faith. "Faith is not to have a perfect knowledge of things; therefore if ye have faith ye hope for things which are not seen, which are true." (Alma 32:21) In some sense I’ve moved a little further on than "faith". I feel I "know" that the Saviour Jesus Christ lives and that Father in Heaven is a real person in his own right. I feel I "know" that the Church of Jesus Christ of Latter Day Saints is true. I’ve never seen Father in Heaven or Jesus Christ but I believe Joseph Smith when he said he saw them when he was 14 years of age. I don’t need to see them but I would love to and know I will someday if I press forward with faith. I don't blame God for my condition. Today I try to seek strength in "doing". I’m the Gospel Doctrine teacher in my ward and it is part of my responsibility to prepare a lesson every week to teach to the 20 or so adults who attend the class. I’ve taught the New Testament and the Book of Mormon but I’m no expert, quite the contrary, I’m learning as I go along but HOW I am learning!!! I’ve learned about Jesus Christ when he anguished in the Garden of Gethsemane and felt his agony as he bled from every pore. I’ve learned about Nephi when he was anguished by his own sins and I’ve felt those pains so sorely. Yes, how I anguish over my own sins and weaknesses. However, the Gospel is not about doom and gloom, it’s about hope and enlightenment and about love and caring.

I’m still having bouts of depression. They don’t last as long now and they’re not as deep but they are still debilitating (at one time I was in a depressive stupor). I’m still on heavy medication and this is reducing my concentration and thinking abilities. There was a time when I was constantly "spiritually aware" and felt many times that the Lord was with me. However, I feel the medication dulls my spiritual senses and it takes a lot to "move" me now. I struggle. I am weak and make mistakes and my weaknesses and physical imperfections (chemical imbalance) have resulted in my being so badly mentally ill. I have totally lost control of all my bodily functions on occasions. It seems that when I get over one set of problems another lot comes on top and I have subsequently been plagued with physical illnesses, some of a serious nature and others not so serious. However, I can truthfully say that I have never cursed God, or blamed God or denied that God and Jesus Christ exist. I have always blamed myself for the situations in which I have found myself, because I felt unworthy, or because I have not been able to love God sufficiently. But I still don’t blame God. I love Him and want to be like Him so I guess I’ve got other trials to go through to get there. In some ways I hope I can endure my afflictions as worthily as Job.

Then Job arose, and rent his mantle, and shaved his head, and fell down upon the ground, and worshipped, And said Naked came I out of my mother's womb, and naked shall I return thither: the Lord gave and the Lord hath taken away; blessed be the name of the Lord. In all this Job sinned not, nor charged God Foolishly. (Job 1:20-22)

Recently received e-mail from Karen:

Hello Rick,
I hope you got my message the other day and I hope that what I wrote was satisfactory. I just thought you might like to know that I've just been told that I have breast cancer. I guess the Lord thinks I need trying just a little bit more. Look forward to hearing from you.
Best wishes.
Karen -----

5/27/00 rdh/kb/ga