It’s only been a month since I last wrote, which is really unusual for me the past few years, as I’ve been on a natural annual writing schedule. But the events which have transpired in the past month, and particularly in the last week, have been so profound that I want to record a snapshot in time for my own benefit. Time and experience has a way of changing us. It’s just inevitable. So the person I am today is not the same person I will be in a year, and looking back on today a year from now, things will look a lot different- my perspective on today will be different. So recording my perspective will provide a snapshot so that I can travel back and remember with intimate precision what I am going through and how it affected me. I could just make this a private journey, but my secondary motivation in writing is to share it, because I believe that my experience is too profound not to share. It’s not that I’m someone special. Well, in a sense of uniqueness, yes- but not in a sense of being more valuable or having some kind of revelation to share. Actually, my motive is based on beliefs of the contrary- I think my experience probably is not that unique, and perhaps in being honest and open about it, an understanding can be offered to those who haven’t gone through it, and others who have gone through similar may be encouraged.
So last time I wrote I wrote about my problems with the Social Security Administration. Specifically, In October 2011 they sent a letter stating it was time for a redetermination of my eligibility for disability. I filled out all their paperwork they requested, releases for them to get my medical records, etc. By the way, my medical records are private, my private information, and I really hate that I even have to send them to be reviewed by complete strangers, and stored where complete strangers have access to them, for purposes other than my medical care. But it’s how the game is played. I try to provide the minimum information to them, because quite frankly, it’s none of their damn business that I see an MFT for counseling, especially when my disability has nothing to do with my mental health. So in early February I get notice in the mail that they determined, after their review, that I am no longer disabled and can return to work. The letter stated I could appeal, blah, blah, blah, and that they would continue my benefits only until April 2012. Well, they didn’t. They immediately ceased my checks and my Medicare eligibility. Immediately. The letter stated I needed some specific form to file for an appeal, but not how to obtain the form or where to send it. I’m resourceful. So I located the form online, printed it, filled it out, and assumed the best bet would be to turn it in to my local SSA office, since I had no address to mail it to. I absolutely hate going to my local SSA office. It’s as bad, if not maybe even worse than a trip to the DMV. You take a number, wait for at least an hour, with a lot of other people, most of who appear to be on drugs, or are waiting for their checks to probably go buy drugs. A security guard paces around the one large lobby, enforcing the ‘rules’, and when they call your number, you go up to sit at a glass window that is open to the entire lobby. Not a foot of privacy. And then, after you’ve sat for an hour observing the circus, hearing everyone else’s business in being there, and it’s finally your turn, you get to the window and the person on the other side has absolutely no clue how to do their job. No kidding. I have been told some of the stupidest things by SS window workers who just wanted to move on to the next person, I assume. Most of the time they leave me waiting at the window for 15-20 minutes while they go consult with some mysterious supervisor on the other side of the wall they disappear behind. This last time I went I asked why the form they provided me specifically stated a certain thing on the top of it, which was contrary to what they were doing, and what they had said to me. The worker reads through the form and just concludes, “I have no idea. Even this form makes no sense to me.” So yes, these are the wonderfully talented people we have working for our SSA. It’s just demoralizing, the entire process. So, I make a dreaded trip down to my local SSA office to file the appeal. Supposedly, if I filed it within 10 days I could request to have my benefits continue during the appeal process (actually the form says I have the ‘right to elect to receive’), with the caveat that should I lose, I would have to pay back any money they had given me. But how could I lose, right? This has to just be a mistake! The determination/termination letter stated that I could appeal and submit any “new evidence”, so that prompted me to go to my oncologist to get a letter supporting my disability. I had no other “new evidence” I could think to provide, as nothing had really changed in my medical status, and I was dumbfounded as to how or why they had determined I was no longer disabled in the first place. So, just to shore up things even more, at the suggestion of other women with Inflammatory Breast Cancer, I put together a 4 page letter outlining specifically all the long-term, incurable side effects of cancer treatment I suffer with (fibromyalgia, lymphedema, neuropathy, ‘chemobrain’, chronic fatigue, and now depression), how these specifically affect me and prevent me from being able to work, and pointed out the fact that I am still in treatment (chemotherapy), and that IBC, especially after a metastatic recurrence is incurable. So I took with me the letter, signed by my oncologist (who happens to be a UCLA clinical professor), on the cancer center letterhead, stating I was “permanently disabled with a terminal illness, a poor prognosis, and a high probability of recurrence”, the 4 page letter I had put together, and the form I had printed out from the internet. Good thing I decided to turn these in at my local office, because it turns out there were many more forms they required beyond the one stated in the letter. Now, how would I have known that? I wait my turn, get to the window, and she gives me the additional forms I need to complete. I go sit down at a counter just for writing, on the opposite wall as the wall of glass windows, but still in the same giant lobby space that allows no privacy, and I start filling out the additional forms. Noise and chaos everywhere. The one packet she gives me, maybe about 8 pages long, wants all the same information I already provided back in October, and it was in fact the same exact cumbersome form. Names, addresses of doctors, dates, treatments- all of that. And I certainly didn’t come prepared for this, so I don’t really have all this information with me, and I’m anxious to get this turned in within the 10 days, so I have to complete it there. I’m disgusted, going through each page, just writing “no new information.” I can’t handwrite for long periods or even more than a few sentences because of my lymphedema and neuropathy. The place is so packed with people there’s not even a seat left, and an SSA rep is walking around, sort of triaging people’s issues, directing them on what category to select on the computer to obtain their number in line and whatnot. He comes over to me, asks if I need anything, and in disgust I just tell him that I think it’s ridiculous I have to fill out this cumbersome packet when it’s the exact same information I’ve already filled out just 3 months ago. He asks if I’m trying to file for disability, and I tell him that no, I was filing an appeal on a reevaluation of disability eligibility. He asks to see the packet, takes one look, and tells me that it’s not even the correct form the woman at the glass window gave me- not surprising. He brings back a 4 page packet, and tells me when I’m done, just turn it in to him and he’ll time stamp it and turn it in for me- I don’t have to pick another number and wait again. Oh, thank God! So early February I filed my appeal, along with the document requesting they continue my money and Medicare during the appeal process.
Well, they didn’t do that. They immediately cut me off. I was able to still get treatment at the cancer center (and got a hefty bill from them too), but any new appointments I needed to make elsewhere had to be postponed because Medicare continued to show I was ineligible. It took me 4 times of having to go to the local SSA office to get my Medicare back online. They first printed me out a paper, stating I was eligible for Medicare, but I would take that to the doctors and they would say no, that the paper was useless because they check eligibility on the internal system (through an automated phone system), and it was still showing I was ineligible. So I would go back into the local SSA office and go through the process again to get to the glass window, only to be told there was nothing more they could do because it was “out of their hands.” The money issue was a ‘processing center’ issue, and all they could do was keep sending messages, only prompted by me going in to the SSA office. That did little good, because of the 4 times I went to the SSA office, I still have not received the portion of the money I get for dependents- not since last February. I guess filling out that form requesting they continue ALL of my benefits during the appeal process, and getting in to file within the 10 day window was pointless! The Medicare issue was with the Medicare branch of SSA, and again, they had no control over that. Yet they could provide me no phone numbers or way in which to advocate for myself other than taking a number and waiting my turn. But, the appeal was filed and now out of my hands. March, April, May, June roll by. I heard it could take months to get through this. Then I get a notice I have a hearing scheduled for July 10th. More like a meeting really- it wasn’t with a judge, but with a SS hearing review officer. Oh, ok, I thought, this should be ok. With the letter from my oncologist and my 4 page detailed account of all my conditions and how they affect me, there’s no way they won’t see that I truly am disabled. Someone had suggested to me that I shore up my appeal even more by getting a functional capacity assessment of my occupational abilities (and disabilities), that way it would be there, in a written report by a medical professional, and not just my subjective report contained in my 4 page letter. So I spent most of May and June trying to find someone who could do that for me, which is why I was there seeing the rehabilitation medicine doctor I wrote about last time. In late June the Occupational Therapist from the cancer center reluctantly agreed to do the assessment, or more like a screening, she said. She was insecure about the fact that she is an OT and not an MD, and she believed for SS purposes an MD would carry more weight. But since I couldn’t find one, she agreed to do it. We went through the assessment, and honestly, it about killed me. (Well, not really, but it was rough). I started out strong, but by the time nearly 2 hours had gone by I was so exhausted I could barely walk to my car on the other side of the cancer center. And my legs, my thighs hurt so bad I felt like I had just climbed down from Mt. Everest. The fibromyalgia just does this to me. Anyway, I pick up her report just in time for the hearing, or meeting, or whatever it was at the SSA office. The hearing review officer came down from about 2 hours away just for this hearing. It really was more like a meeting. He takes me back into a large room that is divided up by cubicles, glass of course. He sits at a desk, and I sit on the other side, and he starts going through his own questionnaire packet, taking scant notes. I gave him the functional capacity assessment, which was favorable to my claim of disability, also suggesting I am unable to work. He briefly skimmed through it, and tucked it into the file he had there with him, which presumably contained my medical records. The stack of papers in the file was probably less than an inch thick. I know my records at the cancer center alone, even prior to them going to electronic files several years ago, are well over 12 inches thick. And those are just my records there. The OT had her own records for me, and then my visits to MD Anderson, as well as multiple other doctors, hospitals, and imaging scans done at places other than the cancer center. So the amount of records that are present in my SSA file is probably not even 5% of my total records. I don’t have much control of that, other than which doctors and procedures I choose to tell them about. They directly request the records themselves, and the records are selected, copied, and sent from my doctors, completely independently of me.
The entirety of the meeting was less than 20 minutes. He asked the same questions that had already been asked by their questionnaire, and which I had already answered in the 4 page letter I submitted. I explained to him how my fatigue level is so severe that I am unable to grocery shop by myself- that I must either take my husband or son with me to help me. If I try to shop by myself I can about get to my car, but will have not even an ounce of energy left to load the grocery bags in the car, or even to drive myself home. This hasn’t improved with the weight I’ve lost. I wore my full lymphedema compression sleeves and gauntlets to demonstrate how cumbersome and restrictive they are, and even demonstrated to him how my right (dominant) hand becomes so swollen from lymphedema that I cannot even bend my fingers to grip a pen. The letter I received notifying me of the hearing date suggested that again, if I had any “new evidence” to support my appeal, to bring it to the hearing, and also to bring all my prescription drug bottles. I informed the hearing review officer that I was now taking Wellbutrin again for the symptoms of depression, and that I had brought the bottle in my purse if he wanted to see it. He stated that he didn’t need to see it. Although the meeting was quick, and I felt that I wasn’t articulate and strong in arguing my disability, I really believed that all the “new evidence” I had was sufficient enough that they would overturn their decision. Well, four days after my meeting I received a letter in the mail from the SSA stating that the hearing officer upheld the decision, that he had found I am no longer disabled and can return to work, and again outlining the appeal process and a specific form I would need to file to request a hearing with an Administrative Law Judge. Also enclosed was the hearing review officer’s Summary of Evidence- a multi-page report outlining specifically the reasoning behind the decision, and citing the codes in support of their decision. The report contained outright lies, complete misrepresentations of my medical records, an under-reporting of the extent of the treatments I have received, claimed I was “successfully treated” for my lymphedema, suggested that none of my “allegations” of my other symptoms/disabilities were supported by any facts or records, and completely discredited both the oncologist’s letter and functional capacity assessment I provided in support of my appeal. The hearing review officer stated several times in his report that I am “in complete remission”, despite the fact that my letter from my oncologist stated otherwise, and nowhere in my medical records anywhere does that term “complete remission” appear. I wish I was in “complete remission”, because then I could stop treatment! So of course, I am stunned, and extremely angry. All of this harassment hardly seems worth the measly amount of money I get from SSDI. The loss of that income is indeed felt, as we all are living in times when every penny holds its place in our household budgets, but I honestly would rather not take their hand-out. I would rather not have to give up my control over my economic independence, or have to justify and defend myself to them. I would rather not have to take a number and wait my turn, especially when I don’t feel good as it is, or provide my personal medical information to the U.S. Government. But I have to have Medicare. I cannot afford the treatments, which are thousands of dollars, without it.
The chemotherapy drugs are prescribed per-meter-squared, as I think I’ve shared before. In other words, they are dependent on how much a person weighs. And the cost of them is in a per-liquid measurement. So, my weight loss has significantly reduced the chemotherapy dose I get, which has also decreased the cost of the chemotherapy- a good deal for my insurance companies, because the amount saved from my weight loss has more than paid for my vertical sleeve gastrectomy procedure. But even still, treatments have gone from over $14,000 per treatment to about $10,000 per treatment. The company-sponsored health insurance we have through my husband’s employer (which we pay a significant premium on every month, and which goes up every year despite that my husband does not get a raise in his pay) is an 80/20. We cannot afford $2000 every three weeks that I have treatment, or 20% of all the scans, doctor appointments, and whatnot that go along with cancer treatment. Even with Medicare, we still have significant out-of-pocket expenses, because Medicare is also an 80/20, and they only pay 80% of the 20% left over from my primary insurance. So even with Medicare we have significant medical bills. Without it, it’s completely unaffordable- it would take my husband’s entire income just to pay our medical bills.
And so here I am, stuck. I went last week and filed the second appeal, requesting a hearing with an Administrative Law Judge. It was another take a number and wait deal. I contacted our local Congressman’s office, and was told by the Social Security liason that ALJ hearings are taking 12-14 months just to get a hearing date on the calendar. I’ve completed and turned in the form requesting to continue my benefits during the appeal process again, and within the 10 days again, but if it goes like it did last time, I am anticipating a big hassle again in trying to retain my benefits. When I filed the form I asked the lady behind the window why I had such a hassle last time with retaining my benefits during the appeal process, when the form clearly states on the top that I “have the right to elect to receive” my benefits. She disappears behind the wall to talk to a supervisor, and comes back telling me that the decision to continue to give me benefits is at Social Security’s discretion. When I asked what criteria they would use in making such a decision, she stated that she did not know because it was the processing center that made the determination. Laughable. Except that it’s not- these are people’s lives here. And I have no idea what I would do if I wasn’t married or my husband was not working? I would literally be a homeless woman with cancer, unable to get my treatment at all. It’s truly disgusting.
It’s so disgusting that I have gotten extremely angry about it, especially when I see all the people, the drug addicts really, who fill up the seats in the local office. And when I am that angry, all I can really do is cry, because I truly am powerless to do anything else. Several people have suggested I get an attorney- I tried that. Right away, before I filed the first appeal, I called several from the phone book and they all stated the same thing- they do not take cases of redetermination for continued eligibility, but only take cases that were denied upon initial application. I am certain the reason why is that from the day a person applies, if eventually found disabled, SS owes backpay (well, the first 5 months don’t count under SS rules). So the longer a person fights to get their initial eligibility overturned, the more months of backpay is owed- and we know attorneys butter their bread by that. Because I’ve had ongoing benefits, there’s no backpay they can lay claim on really. (Well, actually there is because they haven’t been paying me, but I can and did elect to continue my benefits during the appeal process, which you cannot do upon appeal of initial application). But the thing is, not a single attorney I called even offered to take my case if I paid in advance. Not that I have the money to do that, because I don’t. But it wasn’t even an option. So it’s not that I haven’t tried. So, not knowing what to do, I spent all last week working on another appeal/rebuttal letter. This time it is 12 pages long. I went through the hearing review officer’s Summary of Evidence and the lengthy justifications he made for how he came to the decision to uphold the decision, and argued my case, line-by-line. It was so exhausting I had to have help from various people in getting it completed. I have no other “new evidence” to provide, and they’ve already completely discredited my oncologist and the OTR assessment. What more can I do? I have gotten in touch, with help from several people, with a couple people who are willing to help me- one an attorney who will take my case pro-bono, and another a patient advocate who works with people with cancer in dealing with Social Security issues. So that’s promising. The thing is, I haven’t lost faith and hope. I know that even if I lose all the way up to the highest level of appeal, God will take care of me, and I will be ok. And, I know I am disabled. I know there’s no way I could sustain a 40 hour, or even a 20 hour-a-week job. I basically quit working on the nursing school pre-reqs because that was a pie-in-the-sky dream. I thought maybe I could work a nursing job part-time and still make decent money, because in social work there’s no such thing as part-time work- they don’t split caseloads in half. But there’s no way I could even do that. Even at one class at a time, it about killed me. I was so exhausted, and so cognitively challenged, and I felt myself getting sicker with the stress. And so, that’s really the issue for me.
Over and over in the correspondence, in writing, the SSA has stated that I am “young and educated”, as if to imply that somehow makes me less disabled than my older or less educated peers with the same diagnosis. Really? From my perspective these facts just verify that I truly am disabled, because if I wasn’t disabled, I would much rather go back to work, earn a lot more money, not have the government peering into my life or controlling me. I would have access to much better health insurance (including prescription drug coverage, dental, and vision). I would be working to put money into retirement, and have something to fall back on should something happen to my husband. Believe me, I did not work my ass off getting through college to sit on SSDI the rest of my life- that was never my goal. In fact, it is extremely difficult and painful to accept the reality that my life will never be the same, the hope and promise I have in terms of my financial independence is gone. My identity as a productive, employed, college educated woman is gone. I have become a cancer patient. It’s something I will be the rest of my life, however long that is. And it’s not that I haven’t struggled against that, or struggled to maintain my identity apart from that. Oh, I have. But defining myself as anything but disabled seems to be a big problem for the SSA, as even the fact that I am a mother has been used by them to substantiate that I am not disabled and can work.
I don’t care what they say or think about me. But all of this hassle since October of last year really, has forced me to examine and re-examine my life, the true extent of my disabilities. And that has had a big impact on my mental health. I’ve been writing about my struggles, mostly of a spiritual nature, with cancer for months, maybe even years. But for the most part I’ve been able to maintain some semblance of a normal daily life- it just doesn’t consist of paid employment. But in order to maintain that normalcy, I’ve had to compartmentalize a lot. To wage a battle on every front would drive a person insane- literally. So I’ve been choosing my battles, and responding to those things that require a response from me. To say “God’s got it all in His hands” is ignorant of the fact that we have to do our parts. God doesn’t miraculously pay our bills for us. He may miraculously provide the means for us to meet our material needs, but He doesn’t do all the work required by our own hands and feet. And the past year or so there have been a lot of demands on my hands and feet- things I cannot just chose to not respond to and expect a good outcome for us. I wrote last month about being so exhausted. And truly I am- to the bone. If you haven’t been through the extent of cancer treatment I have been through, it’s impossible to even comprehend, I think, the extent of the physical exhaustion. It isn’t the kind of exhaustion from doing too much one day, or from not sleeping well for a few nights. It’s the kind of overwhelming exhaustion where at moments it is even hard to draw energy to get my brain to function correctly. When I went to the SS hearing I was in that state- like a mental fog. My mind would not even articulate words to say. My husband couldn’t attend with me because he had to work. So, going alone, I am sure that did not help my case, as I just didn’t have the brain power to even advocate for myself really. I know it’s got to be hard for people to understand this because they see my writing, they see the articulate and intelligent parts of me. But these things express themselves less and less, and I can truly see my mind ‘slipping’, my cognitive functioning declining. It’s hard to even put into words what that is like emotionally. It’s devastating really. I blame it on “chemobrain” and people laugh like it’s a joke, like I’m trying to be humorous. I am not even 40 years old yet! I still have a lot of intellectual curiosity and passion. But my brain does not have the ability to pursue that with the intensity I once had. When I say I am suffering with cognitive decline, I’m not talking about the little memory slips that start occurring when we get 60 or 70 years old. It is difficult for me to even read books and comprehend them anymore. I have to re-read paragraphs several times, and can only read in measured amounts before my brain ‘checks out’. This is perhaps the hardest side effect of treatment that I have to deal with, and the one that I grieve the most- even more than missing my girl parts. I often get dizzy, and have had many, many instances when I’ve had to catch myself from falling because my orientation of my body gets whacky. It’s not vertigo. It’s not exactly my sense of balance. It’s more like my brain just not having the grasp on where my body is oriented in space. When I step off a curb, or go up or down stairs, through doorways, when I pass people in close proximity, I have to go slow and have total concentration just to make sure I don’t fall, or bump into people or things. I am not even 40, but feel like I’m in the body of an 80 year old. Of course I have lymphedema, which I’ve written about and struggled with for years. It’s a normal and incurable consequence of having the lymphatic system interrupted- for me that was caused by removal of all the cancer-filled lymph nodes under my armpit and the scar tissue formed from radiation. They can’t transplant lymph nodes. So at best, it can be managed and kept at a minimum. I have had times in the past 9 years that my lymphedema was stage III (elephantitis). This is a serious condition, and can be life-threatening, as stagnant lymph fluid is very susceptible to infection, and can even cause the skin to break and start weeping the fluid. Yuck! I’ve never had that happen, but I have gotten strep-B cellulitis in my lymphedema arm, which is a very serious condition that can quickly turn to sepsis, and kill a person. So the way to prevent lymphedema from progressing to stage III is to not engage in the activities that aggravate it, causing the arm to swell. Just about everything in a work environment would do that- cause my arms, hands, legs, and feet to swell. The neuropathy- that’s bad too. It flares up, and then gets better. I can only take high doses of vitamin B-12 for that. I used to be prescribed Neurontin, which is actually an anti-epileptic. That was when the neuropathy was so bad I would reach both my arms up, repeatedly make fists with my hands, and moan, all while I was sound asleep. During the day I would cry because the pain was so bad, almost intolerable. But even at maximum dose the Neurontin didn’t completely resolve the neuropathy- it just made it tolerable. The side effects of the Neurontin were so severe I couldn’t drive at all because of the vertigo, and I did fall down frequently because of the dizziness. So I made a quality of life decision and stopped taking the Neurontin. I was then prescribed Lyrica in its place, which is also prescribed for my fibromyalgia. But, the medication is extremely expensive, and I couldn’t afford it. So I’ve just kept moving forward with the neuropathy, no other options except the vitamin B-12 I take for it. Some days it is so bad that even my bare feet on the carpet feel like I am walking on shards of glass. And my hands and fingers get so numb that it’s not uncommon for me to drop things. I’m always joking about what a fumbling idiot I feel like because everything escapes my grip on days when it’s particularly bad. Days like those, even doing dishes or showering is painful because of the hot water temperature. And then there’s the fibromyalgia. I have flare ups, and when I do, they literally force me down. Anyone who knows me well knows that I am not the kind of person who tolerates being down. I left the hospital the day after my bilateral mastectomy because I just couldn’t stand to be there, laying in that bed, forced to rely on assistance just to go to the bathroom. I usually can’t even sit through a movie with undivided attention because there’s just too much to do. So if the fibromyalgia and fatigue or so severe that I have to lie on the couch in the middle of the day, it’s pretty bad. And thankfully it doesn’t get that bad often. But there isn’t a single day that goes by that I can say I feel good. Every day I am in pain, and am fatigued. Again, I don’t think people who haven’t been through the extent of treatment I have been through can fully comprehend what it means when I say I am exhausted or am in pain, because my complaints are almost always met with a “me too.” Well, I remember the aches and pains and the tiredness that was a normal part of a stressful and demanding life before cancer. I worked full-time, came home to cook dinner, make sure homework was getting done, do laundry, grocery shop, clean the house, pay the bills, etc. And these aches and the exhaustion I feel now is so much more than that- exponentially more. Most of the time I can’t even discern if the ache is coming from my bones or the muscles and soft tissue surrounding them, because it all hurts, and a lot of the time. And all of these things, these disabling and chronic conditions I live with, are normal side effects of cancer treatments, and especially chemotherapy. If I live my life everyday thinking about them, considering how they limit me, holding on to how much pain I am in, I would be a very depressed person.
I’ve said it so many times the past few months- show me a person with no arms and no legs and I’ll show you a man who can paint a masterpiece with a paintbrush held by his teeth. Disability is more a frame of mind than it is a valid assessment of someone’s occupational abilities or lack of abilities. So I don’t choose to see myself as disabled. I don’t lie in bed all day, complaining. I push forward through the pain and exhaustion until I reach a point when it is literally impossible for me to do that. And this is a daily battle I fight as well. For me to be able to do what I do, I have to compartmentalize all these unpleasant physical sensations. I have to ignore the pain. But it’s always there, pressing in on me. The struggle this begs of me in itself is exhausting, is psychologically demanding. There really is a valid reason why pain management doctors exist and have busy practices. I haven’t done any research, but my hunch is that most of the patients being seen in pain management practices are depressed, and probably even suicidal. I am a really strong person, psychologically, but I know that having to spend the past several months considering all of this, focusing in on the pain, the fatigue, etc. has really sunk me back into a depression. My life will never be the same as it was before cancer. Ever. And the quality of it has declined- from loss of income, to physical limitations, to the amount of my time consumed by medical management of my health, to the hopelessness I have of ever being an independent, self-sufficient, healthy woman.
Depression is something I have struggled with my entire life. It’s just in my blood. As a young teenager I had to take anti-depressants, and was hospitalized in a psychiatric facility because I was suicidal and depressed. But I was able to manage that for years without medication, until the tail end of the first treatment course I went through for cancer. The increasing symptoms were becoming uncontrollable, and I found myself crying every day, even at work, when there was no prompting of the episodes. I had insomnia, and many other classic signs of depression. Well, I went in for chemotherapy one day, a nurse asked how I was doing, I replied that I wasn’t doing so well, and she said something to the effect that I should feel lucky to be alive. That was all it took on that day to send me into a sobbing mess. So seeing this, the NP suggested I needed to be on an anti-depressant, and she was surprised I had gotten as far along in treatment as I had without needing one. Chemotherapy alters body chemistry, including brain chemistry. As a 30 year old woman, I was many years from the hormonal changes of menopause, yet chemotherapy caused me to stop menstruating for months- over a year, actually. So it does have effects on many things. I started on Wellbutrin and was on it for a few years before deciding I wanted to try to wean myself off. Even managing my medications can be overwhelming for me at times, especially since I take 8 different over-the-counter supplements to support my health. So I wanted to try to get off my prescription medications, which since my sleeve gastrectomy, I have been able to do- another thing SS used against me: that I was not currently taking any prescription medications. However, the depression was always present, but I was able to subdue it and wrestle the thoughts to keep it manageable. That in itself is mentally exhausting. So with all these things pressing in on me (the pain, the fatigue, the depressive thoughts), it’s not surprising that I would become overwhelmed and start to lose control over it. In May I called and asked my oncologist to give me a prescription for Wellbutrin again, because I had taken that previously and it had worked well for me.
Well, I don’t know if it was my weight loss, a different body chemistry, or what, but the Wellbutrin had a dramatically different effect on me than it had previously. I immediately became manic, even at the half dose. What I mean by that is that I literally couldn’t stop talking- for days. I couldn’t shut my brain off to get to sleep at night. I had this intense, almost obsessive focus, and was so distracted by that, that I was unable to attend to the basic daily living demands. And my brain, my thoughts, the things I was obsessively talking about and pursuing were of an unusually esoteric nature (for me, anyway). So I thought I would give it a week and see if it leveled off before I just gave up on it, especially since it was so effective for me before. And quite frankly, I liked the way it made me feel. It wasn’t particularly helpful in keeping me grounded, but I felt impassioned- alive. I felt like my brain was waking up from a deep sleep and I was fully awake for the first time in months, maybe years. I felt intelligent again, and like I didn’t have to struggle so hard to even get basic thoughts to come forward. So yes, I did like how it made me feel, even if I was manic. But after about a week this did start to level off, and just for good measure, I waited another week taking just the half dose, before I bumped up to the full dose. At two weeks, I bumped up to full dose of the Wellbutrin, and went through another manic spell, but it was much shorter lived than the first episode. Even after the mania calmed down, I continued to feel a more “elevated” mood- and I don’t mean happy or giddy exclusively, but more “amped”, more “on”, if that sounds about right? And again, I liked this feeling. It felt electric. The problem is that the Wellbutrin was elevating my blood pressure to levels that would eventually require medicinal treatment, and I really believe it was making my fibromyalgia symptoms worse- or at least making the pain rawer and harder to ignore. My body hurts all over, but my legs have this constant restless, achy feeling, and the muscles feel as if I’ve accomplished some great physical feat, pushing them past where they ordinarily wouldn’t go. And while these new side effects were significant enough to cause me to consider stopping the Wellbutrin (and I didn’t mention that it can be addictive and I was becoming worried about how much I really was liking the “amped” feeling it was giving me), that alone wasn’t quite enough to convince me to give it up just yet- let’s try a little while longer and see what happens.
Well, two months into my anti-depressant treatment, and I had a complete meltdown last week. When I say ‘meltdown’, I literally mean as in a nervous breakdown, a major depressive episode, what have you. I was alone all week last week, as my son is staying with friends on an extended visit, and my husband has been traveling out of state for work. I holed myself up in the house and was obsessively focusing on getting that 12 page Social Security rebuttal completed. Things just became so completely overwhelming for me, and I lost control of myself. And then, in this state of emotional breakdown, I started to have psychotic thoughts. And when I say psychotic thoughts, I mean they were psychotic- delusional. As I was in the shower, curled up on the shower floor sobbing, water running down my head, I was thinking about how all this shit just keeps happening- how I have been crying out to God for mercy for months, and it’s unrelenting. How so overwhelmed and completely exhausted I am. And then I began wondering- why is this happening? Why do I seem to be so painfully stuck for so long? What am I supposed to be learning in this? And next thing I know, in pops this sideways thought: Because I am special and chosen, and God is putting me through this because He is giving me a gift of healing. He wants me to go to the hospital right now, today, and go into the ICU and lay hands on every single person in there and pray. In and of itself, the thought is perhaps not entirely illogical. But, in the context, and the way it followed the train of thought, but came in sideways in a way that made it very illogical, I knew right away that it was not a “normal” thought. And then that made me even more emotional. It took me a good while of shaking, pacing, hand flapping, pinching, all the while uncontrollably sobbing, to get myself under control. The scary thing is I saw myself doing these things, wanted desperately to stop doing them, but no matter how hard I tried, I just couldn’t. I had an appointment, so was trying to get myself together so that I could leave, but I was really struggling with it. After about 30 minutes of this, I began to have longer and longer periods when I was in control, and eventually got myself together enough to get ready to leave. I brought a box of tissue with me in the car, and really have no idea how I managed to get across town to my appointment, because my mind was definitely not focused on driving. I cried a bit on the way to the appointment, but was able to drown out some of my conscious thought process by cranking up a worship CD in the car. But the strange thoughts continued. I had another one, which also came in sideways, when I was thinking about the very real possibility that the Wellbutrin was contributing to this meltdown I seemed to be having: that maybe I had been taking too much of the Wellbutrin, doubling the dose, overdosing myself. My logical mind knew that wasn’t true. But I do get a lot more ‘absent-minded’ now with the ‘chemobrain’ than I ever used to get, and sometimes that does cause a bit of anxiety, because I don’t remember if I remembered important things I was supposed to remember. But this was different than that, because it wasn’t a question as to whether I had remembered to take my medication, but a totally irrational thought that I had somehow been taking too much. I suppose in the truest sense of psychosis, these intrusive thoughts weren’t psychotic. I didn’t believe them, and recognized them right away to be illogical and even foreign. I can’t honestly say I’ve ever quite experienced anything like that. And I know that in full-blown psychosis the person becomes so psychotic that they don’t realize their thoughts are illogical and delusional. But these thoughts were definitely a pre-cursor to psychosis. And that’s just scary. Being flooded with them for a good portion of the day, I was starting to think that I might need to check myself in to a psychiatric hospital just to be monitored in a safe medical setting while I weaned myself off of the Wellbutrin. Because, after this, it became pretty obvious to me that I needed to do that- wean myself off. But we’ve had a lot of psychiatric hospital visits in the past 12 months, and I was really resisting the idea of putting my family through that. I just have to be stronger than that. I have to.
I decided to come home after my appointment and just try to relax- let go of the whole SS thing for the evening, and just see how I felt in the morning. The next morning I was feeling better. I still had some crying episodes, but they were minor in comparison. And no more delusional thoughts. But I did start cutting the pills in half, and have been taking a half-dose since. I am feeling a lot better. I don’t know if I will stay at the half-dose for a while, or just completely wean off? I still feel like I need something for the depression, but I don’t want to embark on this trial and error journey down the rocky path of psychotropic medications. I don’t know. I haven’t ruled out the option of going in to talk to a psychiatrist. And this certainly is something really personal and I almost feel ashamed in sharing it. But I feel compelled to share it because it was a very profound experience, and if it’s happened to me, I am certain it’s happened to other people too. As much progress as we’ve made in understanding disease and treatment, mental health, and specifically neuropsychiatry, is one thing we have really fallen behind on, in my opinion.
I am certain that one significant contributing factor to my better mental state is the massage I had done at the cancer center. A very kind woman, a certified massage therapist, is now donating one day a week to provide free massage to cancer patients. Most major cancer centers already offer massage therapy, so as large as my cancer center is, it’s probably overdue, and it’s a shame she has to volunteer her time. Anyway, I’ve never had a professional massage before- I always thought it was a little creepy to have some stranger rubbing my body. But lately I’ve been trying to open myself up to things, experiences I have been closed to for a long time. I suspect I have been missing something, especially as I seek a deeper healing in my psyche. So when I saw the flyer for the free massage, I knew I had to just work through my feelings about it and give it a try. It just happened that my first appointment fell on the day I was having a meltdown. And I came so close to not going to the appointment. But I knew I needed to do it, and would probably feel better if I did. Well, I went into the room being used for massage with my tissue box in hand, my face red and swollen from hours of crying. She didn’t ask me if anything was wrong- I’m sure she could observe something obviously was. She just asked what I hoped to get out of massage, or what I wanted her to do for me. I have no idea, and I told her that, and I also told her I had been reluctant for many years to try massage because it felt awkward and uncomfortable to me. She understood and said we would start slow- knees and below. After the massage was over I asked if my legs were particularly tense, because I was having an overwhelming achy feeling, and was trying to discern if it was in my bones or muscles (as usual). She said they were not unduly tense, but that she had also done some reflexology to “help me feel better”, to help my endorphins kind of kick start. Interestingly, I am familiar with a lot of the mind/body healing practices, and know enough about reflexology to know she was doing this. I don’t, however, know enough to be able to pinpoint the exact areas of the foot for the specific corresponding areas of the body. But as she was pressing deep with her thumb, I could feel it, even in my mind. A sort of surge of energy, maybe even an anxiety, came over me. She told me I would probably sleep good and would feel even better the following day, as it takes about a day for the endorphins to reach full potential. Well, she was right!
This brings up a real interesting discussion and seems to beg a deeper exploration. Really, since taking the anatomy and physiology classes at the local junior college I have become fascinated with the nervous system, the human brain in particular. Even down to the cellular level- the neurons that send electrical/chemical signals in communication. So amazing! Well, this interest in the brain, how it functions, how its functioning is influenced by and also influences our perception, our personality, our experiences, has led me down some interesting paths of contemplation and study. The most interesting thing to ponder is how influenced we are by everything in our environment- what we consume, the toxicities in the air, in our foods, the stresses of life, even the electro-magnetic fields that we cannot see. I’m sure we’ve all been exposed to commercials for pharmaceuticals when the narrator goes down the long list of potential side effects, at the end I am always amazed that even for non-psychotropic medications the side effects can be mood altering- even to cause suicidal thinking. How can a pill cause someone to be suicidal? Reminds me of another movie by the director of The Village– The Happening. And then there’s the whole exploration of the left brain versus the right brain and their functions, and most fascinating, their purposes. Although not new, through deeper exploration, I’ve recently become acquainted with <a href=” http://www.ted.com/talks/jill_bolte_taylor_s_powerful_stroke_of_insight.html “>Jill Bolte Taylor</a>. She is a neuroscientist who at a very young age suffered a massive cerebral hemorrhage (a stroke) in the left side of her brain, and shares about that experience and how her perception changed when her left brain started shutting down, giving reign to her right brain.
There’s a saying: “You cannot live a positive life with a negative mind”, or perhaps more poetically, you cannot live a joyful life with an ungrateful heart. Oh, how true this is! But this does really beg the question- which comes first, the negative external influence that shapes our thoughts, or the thoughts that shape our perception of the external circumstance? As I wrote last time, it does seem that some people have many more difficulties to endure in their lives, and some people do seem to have to struggle harder to achieve and maintain a positive perspective. One thing is certain- brain chemistry and function plays a large role, almost an exclusive role, in shaping our perceptions. Are we born hardwired this way, or do external influences alter our brain chemistry? I don’t think anyone can answer it with any certainty. But in dealing with depression, these are legitimate questions to ask and to explore.
From a spiritual perspective, a Biblical Christianity perspective, we are to “consider it all joy when we encounter various trials” (James 1:2). But how many of us are truly capable of this at the moment we are slammed with a horrendously painful trial? Some people are naturally “bubbly, happy, positive”, and for them, it’s not too much of a struggle to float back up. But for others, it takes years and years of practice to achieve the kind of joy that transcends the guttural pain of life. We have to actually work on wrestling our thoughts, to “take them captive to make them obedient to Christ” (2 Cor 10:5). From this perspective it doesn’t matter if the thoughts are caused by neural chemistry that has been altered by the external assault, or if the thoughts originate from a hardwired brain, because our response to the thoughts is always the same if we are to be in control of them. But what of a person who is bombarded, overwhelmed with suicidal thoughts that are unrelenting? What of the person who becomes completely panic-stricken because of a paranoid delusion that no amount of wrestling or insertion of logical self-argument is going to succeed? And so here is the fascinating intersection between faith, spirituality, and the physiology of the brain.
Considering these things on a deeper level has led me into some ideas and practices that I used to be fearful of. We’re always told in church to be wary of spiritual practices that “open up” a person, leaving them spiritually exposed, and the Bible itself warns against specific occultic practices such as divination. This can leave us, in fact left me, with a fear, and closed my mind to a lot of things that were outside of the mainstream Christian experience. A big part of this for me was a knee-jerk reaction to the dabbling I did with occultic practices prior to converting and finding my peace with Christianity. I’ve seen evil, I’ve seen the devil, and so I know that it’s not something to play around with, or invite into one’s life. And I know people can easily unknowingly do this by engaging in things or giving energy to things that are not inviting light in. But I am coming to this conclusion that the Bible is full of mysticism- the mount of transfiguration, the numerology so apparent, the walking on water, the water coming out of a rock, burning bushes, the Nephilim (half man, half angel creatures), the bizarre symbolism/rules of the Ark of the Covenant, the descriptions of multi-headed, angelic beings in Revelation, and the typologies and foreshadows apparent from the first story of creation, all the way through to the last story of destruction. We are taught to “have faith like a child” (Matt 18:4; Mrk 10:15; Lk 18:17). In other words, be simple in mind so much so that if we cannot find an answer to the question, or cannot make sense of how a giant fish swallowed a man in the ocean and he lived inside the stomach for 3 days, we do not lose faith or belief that such is in fact possible. But, does this then mean that we are to be afraid to explore possible answers to such things, that we are to just settle on faith alone and never dig for deeper truths? I think that’s the fear that we allow to hinder us from a fuller perspective at times, because that is put in us- this idea that if we stray too far off the basic belief that something metaphysical did occur, in exploring how this is possible we might come to a conclusion that it’s a lie and is not possible at all. We might be led away from our faith. But in faith, trusting that God, that light is in me, and remains with me in whatever exploration I undertake, I am starting to believe that I can actually experience God in a more profound and synchronous way if I let go of some of the planted fears.
The fundamental motivation in my exploration is a need for deep healing. I have an intellectual curiosity too, but this is sparked by a need for healing. I have shared before that even trying to get through a yoga session at the cancer center is impossible for me because I break down and cry. The yoga practiced there is a health-driven model, but yoga itself has an inherent centering quality about it. It requires one to clear the mind, still their thoughts, and focus in. At times when I have been laying on the tattoo table I have cried. Again, the overwhelming endorphins and how they alter the conscious mind. It’s those moments when the ego falls away, when the cluttered and noisy conscious mind is quieted, the left brain is silenced, that the need for deep healing is revealed to me. I have been through a lot. Too much really. And I’ve done a lot of head work in getting myself together. But it is all head work. And it’s not the kind of thing prayer can fix. I know the inclination for most Christians is to suggest prayer. First of all, I am horrible at praying for myself. I send out many, many prayers for others, but my personal prayers get largely mulled over in a disconnected way- I’m talking to God, but not purposefully. And if I am talking to God purposefully, it’s in desperation, a childish begging and pleading for mercy. I just can’t seem to put together the same kinds of prophetic prayers for myself as I can for others. Second, prayers themselves are heady. They come from a place of consciousness- they are word driven. I guess in that sense my raw, sometimes wordless prayers are coming from a deeper place, and are thus purer, but they are also emotion-bound. So they’re not ego-free. For me, worship is far closer to that transcendental egoless state, where the psychic healing occurs. I often cry during worship too. But I suspect it’s more difficult to capture that healing in worship than perhaps in other practices, because corporate/public worship occurs in well-defined time segments and is also abruptly disturbed in the transition between songs. Worship also can have an emotion-bound quality to it. It requires that we go past the emotion, using our consciousness to push past it to a point when we can completely let go, to transcend the emotion and even our conscience mind. And that requires we let go of a lot- including our fear of where that might lead us. But I’ve been avoiding this for a long time now, making every excuse for not participating in yoga at the cancer center, afraid to learn transcendental meditation because it might lead me someplace away from Christ. But I feel like it’s time, like I’m being compelled forward to grasp onto a deeper and fuller spiritual experience, in full faith that God is in me and is coming with me on the journey. He’s not going to lead me out and drop me off, or allow Satan to lead me away as if He exists externally from me and I am walking away from Him. I need to see the face of God, even just momentary glimpses- His glory in its divine majesty, away from my foggy, human, left-brained perspective of it. So this seeking I find myself compelled towards is not seeking something other than Christ, but seeking a deeper healing in Christ. I just know that’s going to be hard for some people to understand, especially people who are like me, who want to put everything on a logical, theological level. Healing comes from submitting to the cross, from looking to Christ. Yes, I know. But that’s a conscious healing, a taking-thoughts-captive kind of healing. And I think I’ve even been struggling with that kind of healing because there are much deeper wounds, way past the point of words, that need to be healed before I can see any further progress in being able to effectively participate in bringing about the grasping-joy-kind-of-healing. So things are shifting, changing on the spiritual front for me. I’ve been entangled with a mess of emotional stuff, neurophysiological depressive events, circumstantial influences, for way too long. Years, really. And I just need to get free. I need to find the peace of God, which transcends all understanding (Phlpns 4:7), transcends all conscious understanding…………