The end of a chapter, the beginning of another

One last post...to this blog. For those that read this blog regularly, I apologize for dropping the ball and not writing more often. I was thinking that, being 10 months down the road from my last treatment, that my "ECT Journey" was over. This blog began as a way to record the day to day activity as I went through ECT treatments. Those treatments are over and the dust has settled. But, as SallyT informed me (thanks SallyT), my ECT journey will never really be over (assuming that the side effects never go away and I never become rid of this mood disorder.) It just continues in a different sense and it seems logical to chronicle the "going forward" part in a new blog, one focused on being a former ECT patient and on dealing with bipolar disorder after ECT. So...onward. Join me at the new blog site: http://ectsurvivor.blogspot.com/. Thanks for reading and for your many comments. Stay tuned.

Today is the day before my 17th wedding anniversary (we’ve been married HOW long?) Today, we used the equity from the sale of our Denver house to buy an Arkansas home. Bigger, newer and in a great neighborhood, and much more affordable. Today, and for several days in a row, my mood has been level and very good. Today, I’m alive and with my family, and I feel lucky to have that.

We made a couple of changes to my meds regimen. Melissa and I have learned (actually, she learned and educated me) from our psychiatric adventures that one rule holds true always: You NEVER change more than one medication at a time. Never. I was taking Risperdal in the morning and then as needed mid-day. My local pdoc changed that to 200mg at night. It seems that Risperdal has a strong sedating effect in addition to quieting mania. Better taken at night. I did that change for a couple of weeks before changing anything else. Good change. I also switched to extended release buproprion and a little more of it. I like that change too. And then, I dropped the extended release alprazolam and went to just regular alprazolam at night. Between the alprazolam and the Risperdal at night, I have no need for the Lunesta I was taking. I usually fall asleep before I’m ready. All-in-all, some good meds moves have resulted in some improved and more level mood days. (my life is tabulated in "mood days", in contrast to most people moving in "calendar days.")

I have decided, once we get moved and get life moving forward again, that I’m going to continue my diving education. I hope to start working on my Divemaster rating before spring. It should take me about a year to get through that training. Hopefully, by then, I can find a way to get to some good diving water for my certification dives (Beaver Lake is closeby. Its far from a desirable diving location. The water is murky with about 6 feetvisibilitylity and a thermal at about 30 feet. The Caribbean it ain't.) Then, if all goes as planned, I’d like to move into getting my instructor certification. Something to shoot for. Maybe, several years down the road, I can spend my winters in a warm sunny place teaching people how to dive or taking them on underwater tours of some spectacular scuba areas.

So that’s the latest update. Nothing much on the mood front. Lots going on in life generally. It will be nice to get this move done and be out of “the boxes.” It seems we’ve been living out of boxes for 8 months now, since we decided to put the house on the market in April. Whenever I need something, no matter what it is, I can be sure that its located in “the boxes.” It will be great to have a house to work on again. Lots of little home improvement projects to keep me busy. I’m still working a very meager number of hours at the liquor store. Just enough to let me feel like I’m out of the house a reasonable amount of time. Its good social interaction time.

The Missing Past, the Unrememberable Present

Melissa is increasingly frustrated with me around my memory problems and my inattention to detail and inability to complete tasks and remember to follow-up with things. You have to understand…I’ve always been (until the last 9 months) a perfectionist, detailed, organized and in control. Example: Melissa makes me a list of things to do. I do them, but one of the items can’t be done completely right away for some reason. I often forget to go back and finish that item once it can be finished. Her frustration with me causes frustration for me. I write things down and I do the best I can do. I’ve tried different ways of staying organized, all with some degree of success. The “best I can do”, however, doesn’t meet my standards, just like it doesn’t meet hers. I feel embarrassed of my shortcomings and useless and upset with myself for failing to be reliably able to get things done. My frustration leads to mood changes, which further frustrate Melissa. When she reminds me of things, I’m often short with her because I’m embarrassed that I’ve forgotten or because I feel insulted that she thinks that I might have forgotten (if I haven’t.) Then, she feels like she can’t talk to me about things without upsetting me. On top of that, my talking to her about my mood and the problems I am having on some days overwhelms her, with everything else that's going on in life. So, the end result is a communication break-down wich we have to find a way to avoid.

This continued and increasing realization that I can no longer do things I used to be able to do gnaws at me constantly. My mental capacity isn’t getting better. My memory isn’t improving. Its as though when I elected to undergo ECT to relieve depression, I unknowingly (I know, Sally T, some of you told me) elected to change who I am, what I am capable of doing, and what contribution I can make to my family, my community and the world. I knew about the possibility of lasting memory loss. I didn’t understand that ECT would create a new “me.” ECT did improve my mental illness. At the point in my life at which I chose ECT, my options for a future were limited. And in my case, I had a family pleading with me to undergo ECT before I elected to leave them via suicide.

What if I had just, on my own, decided to undergo ECT, side effects be damned, without my family’s support and encouragement? A novel by Keith Ablow, “Murder Suicide”, poses an interesting philosophical question. In the story, there is a brilliant scientist who suffers from a seizure disorder manifesting itself at times when he pushes his brilliant mind the hardest (or maybe too hard). While he is a brilliant man, his own brain limits the usefulness of his mental capabilities, leaving him unable to fully tap into his intellect. He is contemplating undergoing elective and experimental surgery which would remove the part of his brain responsible for the seizures, leaving him to live a life free of this ailment and free to use his brilliance to its fullest. The surgery would, however, almost certainly leave him with a nearly complete amnesia, removing any memory of his former life or his family and friends (while, presumably, leaving his learned knowledge intact.) In the man’s journal, he asks the following question: (Those that I know personally, please understand that the book poses an interesting question, but I do not seek to abandon my life or my loved ones. The scenario is just so closely relatable to that of a person undergoing ECT, assuming the worst case side effects, that the philosophy is interesting. The facts specified in the passage below do not match my own situation.)

Does a [person] have the right to begin life anew? Is he the full owner of his existence, or is he merely a limited partner? Example: A woman is married 20 years with teenage children and a husband. A home. Pets. Photo albums and scrapbooks brimming with memories. What happens when this woman no longer feels any passion for a shared future with her husband and children? What if she feels non-existent?

Is she depressed? Does she need Zoloft? A higher dose? Or is it possible her life has carried her so far from her internal truth that she is, for all intents and purposes, a zombie – one of the living dead?

Is that woman within her rights – morally and ethically – to leave her home and friends, leave them so completely that she has no memory of them? Having brought her children into the world, does she owe them the rest of her life or is she free to celebrate the past and move on to create a new future without them [but congruent with her true destiny] ?

A person can be spiritually deceased, the carcass of his soul adrift inside a cage of skin and bone that has outlived him. What sort of mother or father, sister or brother, husband or wife would put his or her attachment to a shared past [with a loved one] above [the loved one’s] future, [forcing him or her to continue this soulless life of the living dead]?

True love would never exact such suffering.

If ECT could ease the suffering of depression and remove a patient from the verge of certain suicide, but with side effects of total memory loss: Ethically/morally/philosophically, where does a person’s (the “Patient”) right to begin life anew, free of the constant pain of depression, end? With respect to those sharing the Patient’s life, where do their rights to continuity begin? Consider the comparison between the “beginning life anew” scenario and one in which the Patient elects suicide instead. Does the Patient violate the rights of those sharing his life when he abandons all hope and commits suicide? Would suicide be easier for “those in one’s life” to handle, knowing that the Patient left life, as a whole, rather than abandoning the people in his life for a new life without suffering (and without them?) How does choosing amnesia for the sake of obtaining a life worth living (without depression) differ from just deciding to leave your old life behind and start another (for example, just moving to a different city and leaving your family and “life” behind)?

Finding one's self

Tomas makes an interesting point in his comment to my last post. He comments that he didn't realize that there would be a new "self" to discover following ECT. I guess I thought that, once I had some control over depression, I would see the "old" me coming back. In reality, however, there is a third me that now exists. There was the pre-depression me, the depressed me, and the post-ECT me. All are very different. Maybe just aging and gaining life experience is part of that evolution, but ECT certainly has changed some things about me that I wasn't expecting to be changed.

Update...

As you can see, my postings are getting further apart. Not because things are necessarily going amazingly well, but simply because I seem to not have the time or the desire to write. There are lots of things going on. Let’s catch up.

First, I THINK we have our HOUSE SOLD. If the deal goes through (everybody cross your fingers) “I” actually sold it. My realtor had nothing to do with it. When I switched from my first realtor to my second, I got this letter in the mail. It was from an investor group telling me that they could buy my house and get me all of my equity. I think they target people who are coming out of listings, which I was (in the switch.) I threw away the letter. Daddy always told me “If it sounds too good to be true, it probably is.” A month or so ago, they sent me another letter. This time, having nothing to lose and no leads ion selling my house through “conventional” methods, I called them. Their transaction structure actually makes sense, gets me the same equity from my home that I would get selling through a realtor, and we will close next week. I checked them out, they are legitimate, so don’t worry. Anyway…a bright spot on the horizon. Could it be the sun rising after the long night?

I got rid of my Jeep Wrangler. After much debate and changing my mind about what I wanted, I decided that I needed something 4 door so I could get kids in and out of it, something that gave a nice quiet comfortable ride, something that got a little better gas mileage, that cost me no more than my Jeep (hopefully less), that had some warranty left, and that could carry a small amount of cargo, if necessary. I settled on an ’03 Hyundai Santa Fe. So far…love it.

I settled with my Long-Term Disability insurer. It wasn’t a huge settlement, but it was significant given where we are financially, and really, more than they would owe me under the policy, given SSDI, had we gone to trial.

My mood: Well, my mood has been stable relative to where it was a year ago, certainly. My mood is really pretty good. My acceptance of my “new life”, my new roles in our family, and the increasing realization of the changes in my capabilities following ECT are my real problem and a constant drag on my mood. Sometimes they win the day and bring me down. I really don’t like being a “stay at home dad.” Its just not what I was cut-out for. I would much rather be working full-time if, for no other reason, than to feel productive and useful. I realize, about daily now, that I couldn't work a real, full time job right now if I needed to (good thing that SSDI was approved.) My memory and concentration are horrible, and my mood wouldn’t remain stable if I had someplace to be and something the least bit stressful to do five days a week. So, I’m doing what I can to be happy (or at least survive without being miserable) in my new roles. It still feels a lot like ”getting through today so I can buck up and do it all again tomorrow.” But I guess it could be much worse. I could be convinced, pretty easily, that my hold on “normal” mood is slipping slowly and that I’m getting sick again. Melissa says that I’m just having normal up and down days and that I’m so afraid of getting sick again that I focus on it too much. Maybe. I hope she’s right. Time will tell.

Enough for now.

Sorry for my absence...

Sorry for the long absence. There hasn’t been much going on, so I haven’t posted in a while. In general, things are going fairly well. I have found a new therapist and am waiting to get into see a new psychiatrist, which takes a couple months. My mood shifts up and down but, since my SSDI got approved and some money concerns have improved, there haven’t been any real lows. It seems that the low periods (days or parts of days, nothing lasting much longer) have been “mixed state” events, arising mostly from either anxiety from more manic feelings or rebound from more manic days. I also have days which seem to have more mental clarity than others. Days on which the confusion and haze that I’ve had since ECT and maybe a little from the depression before is lifted and I feel more like my “pre-depression” self (that would best be explained as feeling self-assured, motivated and not feeling at a loss of all of my previous mental capacities.) Other days, most days, actually, aren’t as clear.

The house isn't sold, but we have a buyer seriously interested subject to being able to make an addition he wants to make. He's checking on that. I'm also working with an investor group and talking about selling "wholesale", which is a long story, but puts us out with about the same equity is we sold the conventional way. Without the house stress, I just wouldn't know what to DO with myself, I would be so stress-free.

I received my official notice from Pulte Mortgage that I was being terminated. Their policy provides for termination after 9 months of continuous disability absence.

I’ve started playing racquetball in a little dumpy club. Its not much, but its what is available. I might be the best player in the place, which I’m not used to. There are some serious “alpha-dog” things going on with a couple guys that play there, with a new and experienced player encroaching on their territory. I’m sure that will work itself out.

Things with Mic are tough. He seems to be gradually getting worse. That, along with getting bigger, poses a threat we aren’t used to…a physical violence threat. We are also at a tough place with him from a health care prospective. Mic has been on Medicaid every since I left my last job and began treatment because our household income has been low enough that he qualified. Now that my SSDI has been approved (it was approved on a bi-polar basis, for those that had asked previously), our household income is too high and he no longer qualifies. Melissa has insurance with her job which begins in November. According to Melissa, however, the provisions of that insurance state that it exempts, for the first 6 months, coverage for anything pre-existing. I think, if I remember my ERISA and COBRA rules correctly, that an insurance policy can’t carve out such pre-existing coverage as long as there has been “continuous coverage”. I need to check out the policy information and convince myself of this exemption, if it exists (I’m just that “show me” kind of guy.) So, with respect to Mic, we have Medicaid coverage until the end of October, and then, unless we buy Cobra coverage (still waiting on the COBRA package), he and I are without insurance until June 1, 2007. That’s a bit scary. Both of us will be covered under a Federal program referred to as Title 20 (about which I know very little, at present) which pays all of our expenses for treatment while “in crisis”, but nothing on an on-going or maintenance basis. The place Mic and I are receiving treatment now offers a “sliding payment scale”, which will help some.

My primary struggle at present is with Mic, and his effect 0on my mood and my ability to remain mentally healthy. I know that my mental health will never be safe as long as it is subject to Mic’s mental health. Melissa is so good with him very much of the time, and I aspire to be better in dealing with him. But no matter how hard I try, it seems that “accepting” who he is and what he means to our family and our way of living just isn’t something I can find a way to do. Maybe I never will. Maybe there will come a day when I just can’t balance maintaining my own mental health with the demands of dealing with his mental health issues (a day when staying mentally healthy myself requires removing myself from dealing with Mic on a day-today basis.) That day will bring some hard decisions for me, and I hope it never comes. For now, one day at a time.

'Til next time

Rainy Sunday

One of the things I forgot about Arkansas that is a joy to come back to…rainy days. “The sun shines 360 days/year in Colorado.” Its no BS line. It really does, the few days without rain are in the winter…snow days. There just aren’t any days when it is cloudy and rains all day long. These days are strangely refreshing.

My mood has been pretty good and level since I found out about my SSDI approval. Amazing what a little financial security will do for a wobbly mood. At least I know we can make ends meet now and we are no longer sinking. Someone asked after my last post whether my Social Security Disability was approved on a “mental illness” or a brain damage from ECT” basis. Simple answer: I don’t know. I was told by my caseworker that it has been approved. My back-pay check has come. But my paperwork identifying my approval is yet to arrive. The commenter said that an approval on a brain damage basis would “set precedent and might be helpful to others.” “Bonzer” (a random commenter), back in April, claimed to be the first and only case in which SSDI was approved for someone with brain damage from ECT. So, mine wouldn’t be precedent setting. I’ll let you know when I find out what the findings were. Does that record come automatically?

Mic’s illness/mood continues to be uncertain, but things are in the works for him as well.

Work at the liquor store (which is easier, making $8/hour, now that I know I have some other income behind it) continues to be interesting. Wine snobs, to winos, to grungy hillbillies with no shirt on, to sorority girls. We get the full spectrum. “Bill from the Hood” suggested I keep a journal of liquor store stories and that there would enough anecdotal entries from which to write a book in no time. Not a bad idea.

I’ve begun to look for somewhere in NW Arkansas to play racquetball. Its not as easy as I had hoped it would be. There aren’t many places which have courts and offer some kind of organized play (leagues, challenge courts, ect.) Spoiled by Denver. I’ve found one place, which is a dump and not terribly close to my house, which has three courts and claims to have 25-30 players that play in there. I think I’ll give it a go at trying to put together some way to get 2-3 days/week of play in.

I’ve started looking into Vagus Nerve Stimulation (“VNS”) as a back-up in case I need an adjunct to ECT. For VNS, a little “pacemaker” device is implanted in your left chest and hooked up by wires to your Vagus Nerve (main cerebral highway to your major organs, I think.) The device is programmed externally by your psychiatrist, and it “stimulates” the nerve on a set schedule and for a set time. This is another case of “we don’t know why it works, but it does.” The bad news is that it takes up a year to really begin to show the benefits (according to my ECT doctor who calls to check on me from time to time.) The good news is that there are really no known side effects of the magnitude of ECT. More on this later.