Supporting yourself

First Steps

When I felt the rug pulled out from under me a little over three years ago, I could not function properly. My hands shook, my mind was a massive short circuit, and I was panicked. So many thoughts were going through my mind it was as though there were loud conversations, all of them annoying, and they competed for my attention.  On the day I telephoned my manager in India, advising her I was not coming to work that day, I was seated for a long time, dizzy, and fearful that I would fall down if I stood up.

I remember just putting my head on  my desk for a time, and just closing my eyes and breathing, as though waiting for the calm to return.  I began to regain some composure, and I was conscious that the day was passing me by and I had spent a long time doing nothing, not even eating breakfast or lunch. I called my counselor and left a message asking that he please call me with the soonest appointment he had available. Within 2 hours I received a callback, and I was in Carl’s office the next day.

I had never had fits of trembling before, but there I sat in Carl’s office, shaking like a cold, wet dog.  “Carl, I’m not able to go to work!”  “I don’t know what happened, but I just can’t do this anymore.”

Carl responded with his most calming voice and asked “why don’t you tell me what happened?”

“Well I survived the Christmas holidays, but the whole time I kept obsessing about the work that was waiting for me, the rotten weather where I’d be traveling, and I was cycling around the worst case of each thing I had to do.”  “It made me want to yell, and jump in the swimming pool and drown myself!” I said, and the words surprised me as soon as I’d said them.

Getting professional help

“Except for the drowning part, that doesn’t sound like a bad idea!” was Carl’s response. “Jump in that 70 degree water and wake yourself up.”  “I guarantee you’ll only do that a time or two before you won’t actually need to jump anymore before you regain your awareness!” as he laughed just a little.

I’d never thought Carl to be a sarcastic man, and he was being serious– I needed to snap out of the fear and panic, and the distraction and heart-stopping coldness of the pool water was one easy image to help me.  It breaks the cycle of irrational fear (panic) and helps regain the mind’s focus to get out of the water.   Suddenly this felt like the opposite of the sadistic frog boiling story, and was almost as unpleasant to my thinking.

Carl was sending me a message that I needed a trigger, some mild slap, in order to get out of the cycle of bad thoughts. He knew I would not jump in cold water, but just the thought of doing it helped me to see the irrational behavior involved when a panic “flight response” was taking over.  Calmness needs to prevail.  Nothing was ever as bad as it seemed, and now I had a new coping tool that was going to stop or greatly shorten panic attacks for me.

Carl immediately asked me questions, another technique that helps re-focus people who are upset.  “What about work?”  “Have you talked with your boss about some time off?” Indeed, the time off was IBM’s short term disability program.  This great benefit paid me my full salary for six months as I met with doctors and my counselor to understand why I was so stressed, and which prescription medications could help me rest, and function during the day.

This is a place that I had never expected to be.  I hated to call in sick to work, and seldom did. I was certain that my manager had some trouble finding available people to cover my full workload, and the inconvenience I was causing others bothered me badly. The purpose of allowing employees time off from work was intended to be used to get professional medical help, documented progress reports, with the goal of the employee getting better, sufficiently to rejoin the work stream when doctors had helped to regain normal function.

Securing an income while you recover

Six months passed, and the sleeping issues worsened.  Vivid, nightmarish dreams, all of them about drowning, flying on planes with no passengers, being unprepared for an important class, airport lines in foreign countries where I didn’t understand or speak the native language, uncomfortable job situations that occurred years ago being relived, and many abrupt awakenings with pounding heart and a big adrenaline rush that made falling asleep again very tough.  Worry consumed my waking and sleeping thoughts.

  • How was I going to get through this mentally but also financially?
  • What if I wasn’t ever going to get any better?
  • Why weren’t the drugs I was taking helping with the focus issues and the nightmares?

With each TMS treatment I kept expecting to feel better, but didn’t.  Each visit to the psychiatrist I was given the same list of questions to answer and rate the effect of my anxiety/panic/depression on my abilities.  Each office visit entailed a blood pressure check, weight check, and a photo for the file.  I can only guess how scary my photos must’ve looked in progression, sort of like the picture of Dorian Gray.

At the end of short term disability benefits the IBM Integrated Health Services group advised me I would now be turned over to the Long Term Disability provider MetLife for the next steps. Benefits were two-thirds of my full salary.

This change in short to long term insurance coverage was significant. MetLife had a clear mission to get me back to work at a job similar to the one I’d had with IBM, and my caseworker made clear during each conversation that she had every confidence that I would be back at work soon.  That goal may have been her reason for calling on average every two weeks to ask me “Are you better?” “When will you return to work?”  My answer was getting less cordial or friendly as lack of sleep wore down on my normally sunny affect. “I’ll be back on an airplane as soon as I can get a full night’s sleep without waking up five times a night in a panic!” This kind of exchange continued through all 8 weeks of TMS therapy, and the unhappy news that I was no better off, no improvement in the pattern of sleep or decrease in panic attacks.

I have said that I appreciated the very caring nature of my physician, psychiatrist, and psychotherapist.  My psychiatrist was as disappointed as I was that our TMS sessions hadn’t improved my problems, and mentioned in conversation that in the same building was a practice physician who performed Electro Convulsive Therapy, administered under general anesthesia, where a seizure is induced by passing electricity through the brain.  Yes, the same barbaric practice you may know about that took place during the 1950s, but now under new and improved conditions, and after much study and refinement in the administration of the treatment.  ECT shocks the brain back to normal rhythms and has been effective for patients for whom TMS did not work well according to my psychiatrist. I owe this kind man a great debt of thanks because he left no stone unturned while looking for medical interventions that could help me to return to a normal sleep pattern.

This conversation was annotated in my file that eventually made it into the hands of the MetLife case manager, which resulted in a call advising me that I could be cut off of benefits payments for refusing treatment.  When I heard this I suddenly became my father, exclaiming “Jesus Christ on a pogo stick woman, have you had an ECT treatment?”  “What gives you the medical authority to recommend treatment as extreme as shocking someone into seizure?”  “Oh Mr. Coleman,” she said, “I’ve done my research and see that ECT is very effective in cases like yours.”  That’s when I told her “oh, that’s very different… ”  “You first!”  and I ended the conversation.

After the next exchange of clarifying paperwork, we documented the reality that the discussion was just a discussion, not a recommendation, or a referral for treatment, or anything more.  It was shortly after that the harassing tone of MetLife changed.  I must admit that ECT is used by the mental health community, and there is information readily available about its efficacy.  My strong objection came from an insurance caseworker pressing me with threats of cutting off benefits if I didn’t submit to a procedure with possible side effects like death, permanent memory loss, and onset of seizures. I’d done my homework too.  After talking with my doctor we agreed there were clear and probable side effects that should be considered with care before agreeing to undergo ECT therapy.  My psychiatrist said “If it were me, unable to sleep, I think I’d do it.”  “I’ll keep that option toward the bottom of my list” was my response.

Learning as you go

The whole disability coverage thing was a huge learning curve for me.  I remember the words of my physician who said “you’re going to have to give these guys what they need on paper because yours is not the kind of illness that is visible to the eye.”  “You don’t have a cast on your arm, or a missing leg.”  Again I kept wishing for something to read, a chapter in Life’s Operating Manual, something that might make me feel more prepared for what to expect, someone to talk with, or some sort of checklist to help me for the road ahead. My doctor assured me “attorneys don’t accept these cases unless they’re confident they can win.”  My thought was “there are people far worse off than me who are denied coverage,” and his reply stuck with me “people with lesser needs also get approved.”

Long Term Disability benefits for mental issues do not continue past two years, as though by magic, in two years time the client is better and returns to work.  My “condition” was not caused by slip-and-fall, or negligence of some documented hazard like carpal tunnel syndrome, where a surgical intervention is used, or a worker’s compensation claim is filed to compensate claimants for future wages, loss of ability, etc.   I argued with IBM’s Integrated Health nurse why my claim could not be considered a worker’s compensation claim. After all, it was clearly brought on by working too many hours in transit to overseas delivery centers.  Her answer surprised me;  “there’s no date of injury,” was the response. “You didn’t suffer a traumatic brain injury that resulted in this condition.”

Legal help for the rebuffed claimants

At the time of transitioning to Long Term Disability, I remember there was a requirement that I apply for government Social Security Disability.  Interestingly enough, this would be the compensation that takes over after employer insurance ends.  Our over burdened government entitlements bureau takes about 3 years to hear and clear claims like mine.  Twice my applications for disability were denied for symptoms that do not match defined standards of full disability.  Around the end of my first year of receiving insurance benefits, I was contacted by Allsup Incorporated, a legal service that my employer provides when claims for social security disability get denied.  This wonderful organization reviews medical records and makes recommendations how to approach successfully an administrative Social Security judge, one who will make a final determination about eligibility for disability benefits.

My attorney Elizabeth Montefu is an outstanding human being.  She clearly understood the entire end-to-end government social security appeals process, and represented IBM employees in Florida who were on the same path to fighting government denials, just like mine.  Three months after my disability benefits ceased, my hearing date with Social Security was set.  Ms. Montefu and I met one week before the hearing in order to get acquainted, discuss the process, and to develop and answer any questions about what would be done to make a final determination for the purpose of securing benefits.  “There will be an occupational specialist with the judge, you, and me, whose purpose is to ask you questions why you couldn’t bag groceries, or watch TV screens in a building security office, or some job that would pay a living wage income (no longer income equal or near to previous salary earned at IBM).”  “Also there will be a qualified psychiatrist who will have reviewed your treatment notes in order to apply government standards for disability to evaluate eligibility.”  My first thought was, why wasn’t this done in the first application?  Why did it take two failed applications to get this attention to detail three years later?  OK, let’s get this done.   In one week we would meet at the social security administrative office at 9:00 am.

Judgement Day

The social security office was nearby Tampa airport.  The traffic was intense, and I was nervous as a person might be at a job interview, only this fear factor was 3 times greater.  I hadn’t been at a job interview in thirty five years.  I’d never been interviewed by a judge.  I’d been prepared we would spend an hour or more answering questions, but my session lasted about thirty minutes.  Afterwards Liz asked “How do you think that went?”  To my surprise she was smiling broadly.  “I’m not sure, I was trying so very hard to stay focused.”  “Well, in my experience, a hearing has never been so concise.”  What I thought odd was the occupational therapist who sat across the table from me never said a word except to say his name, and his role.  The questions came from the psychiatrist who said he had trouble reading my therapist’s handwriting and couldn’t make out a few of his answers. He’d had my medical records for three months, but never asked in advance of the hearing for clarification?  I asked Liz why he might not have asked for clarity before the hearing, she explained he had no difference of opinion about the major points on the checklist used for determining eligibility.  “I think you have a good chance of being approved” were her final words before saying good bye and good luck.

Looking Forward

Now that I’ve received formal approval, I am officially a disabled American.  My inability to sleep at least six hours, the panic, all of the reduced abilities have bought me medicare coverage and a fraction of my earnings on which I must continue to pay for medications and support myself.  I am grateful to everyone who had a hand in helping me up and out of the vat of depression.  I’m blogging because this process of seeing my story in writing is therapeutic.  To those of you who have read my thoughts I encourage your feedback, experience, and insights.  Please help others, and maybe yourself at the same time.  If you have a magic cure, if I’ve missed some fix that you’ve discovered for bad dreams, or overcoming panic I think it’s fair to assume that the internet needs to hear from you.

 

 

 

 

 

 

 

 

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