Tag Archives: traumatic brain injury

Independence versus Compliance

I have lived life both as an independent person and one who relied on others to make my decisions and create change in my life.  People like my Mother who forcefully made my decisions, paid money to eradicate my debts, and made it easy for me to not stand for myself and my children.  An ex- husband who controlled everything in my life.  For a long time I looked to others for solutions to my problems and I can now declare independence beats passivity every time. My experience is not reflective of others; I just know passivity kept me a prisoner and made me sicker, emotionally, mentally and physically.

Years ago I was severely depressed and went to Western Mental Health Authority in Torrington, CT.  I tried some classes, counseling on financial matters, and was a phone counselor on the Warm Line (a service for the mentally and emotionally ill).  The classes made me feel worse because I saw people who I knew were so much more problematic than I doing better than me because my depression overrode everything else in my mind.  I had trouble relating to others in the programs.

But the Warm Line made me feel better because I had a Psychology background.  The down side was the same people called again and again, sometimes several times a night. I felt I was holding their hands over the phone lines but that I wasn’t making any effective change in their lives.  I didn’t hear recovery.

Slowly I was learning and progressing.  It took time and an experimentation of different psych meds.  I moved across the country, driving on my own, thinking I would have the connections I so sought with my children.  But I landed in a place where I lacked support, my children were busy building their own lives, my daughter was in Africa and my son was engaged to be married and very connected to his fiancee’s family.  Given that I’m shy and an introvert, it was tough going for a year.  Then I found a housing community for those over 50 in another town and began rebuilding my life.

Unfortunately, I became very ill with a 5% chance of living only with major surgery.  My body went septic and most major organs shut down.  Most of my intestines and my gall bladder were necrotic, I was on life support, and was put into a medically induced coma which ended up causing some traumatic brain injuries.  After three weeks of coma and another couple weeks in the hospital, I was moved to a rehabilitation center as I had lost all muscle memory and had to relearn to move every muscle in my body – every finger, toe, arm, everything was still.  No independence at all.  Not able to make any decisions on my own.  People had to feed me, clothe, me, bathe me.  I had a colostomy bag for a year which was a whole trauma in itself.  I was a slug.  My son came every day during that time to make sure I was following the decisions of doctors, nurses, aides and physical therapists.  Being stubborn, I fought this waste land of a body.  I tried standing and walking too soon, joining the Frequent Fallers Club.  So I had to learn that stubbornly acting against the wisdom of others in this case was working against me.

The experience forged an independence of spirit in me.  Every day was a struggle  and even though I was still battling Major Depression/Bipolar, I couldn’t let it claim me.  I had to get better.  I had to believe that God had saved me for some purpose or I wouldn’t be there.  I learned to walk first on bars, than on walkers, then on my own.  No wheelchairs.  I was responsible for my own steam.  For a long time a walk of any length once I left the rehab, required a walker which was embarrassing but essential.  Sometimes my legs would just give out on me, especially embarrassing in church, although there were a lot of prayers sent my way from both coasts. But I got better and after a year I was rid of the colostomy bag – a miracle, there was only enough space left in my intestines for them to be connected.

Now I prefer the life of an independent person.  When I do turn to others’, it is for advice but the decisions are mine.  I am financially responsible for myself.  I work part-time in service as a caregiver to others even though I still have disabilities impeding me.  I don’t appreciate being told by others what to do but I will listen respectfully then make my own determinations.  As I stubbornly didn’t let others  control my life, my relationships  improved.  I work hard to keep a lid on the Depression even though I feel it within me at all times, it does not dictate its’ force upon me.  Activity helps. Working helps.  It is an esteem builder, even though my job can be very difficult.  I just need to be aware of my limits.

Independence has given me a life worth living, one with purpose and meaning.

Working Within the System

Why is it so hard to fight for our rights? As Disabled persons we have a greater need for services than many but either by our own inabilities to disseminate the proper information to the proper authorities, coupled with, the inflexibility of a system that has fewer and fewer resources and people who are not properly trained to handle our population . . . nor necessarily have the attitudes and empathy to know that, for most of us, our mistakes are not our fault.

I am on disability and lost my benefits January 1st, not because I was trying to beat the system but because I couldn’t understand and follow the system. There is a chance my benefits will be reinstated, of which I will be eternally grateful if they are but there is still a huge, dark cloud floating above me. I need to appeal to nullify the 16+K they have been sitting there watching for several years as it accrued without my understanding of the system and my repeated thinking “Surely this will be okay, am I doing anything wrong?, if they haven’t contacted me, I must be okay.”

It took every bit of my courage and preliminary preparations to handle the 2+ hour interview but I did it. As I was sitting there, my legs were cramping continually and I had to stand as I was talking to her, my neck and back were in pain, and my skin was itching all over. This as I was telling her the diseases and conditions which brought me there in the first place.

I still have to go to an Accountant for the first time, at a cost I can ill afford. And the Appeals process still needs review. Finally, I am locked into a set amount of money. If I go over it by even a dollar, I lose my benefits . . . for good. So, this case I am working on, I can’t earn more than that amount and I often have to work extra hours so those hours will be for free.

There was a time, years ago, when my mind wasn’t as impacted as it is now, that I had to have the school districts I was working in to pay me $2 less an hour than was contracted just so I could work the hours needed.

Yes, I am Disabled, but I need to be a productive, contributing member of society. I need to be of service. I need to help people, and I know there is a purpose to my work that God has in mind for me. So I struggle through the morass of the system, hoping they see I am worthy. And pray – a lot.

Social Security Disability – Living in the System, or not

How many of us live terrified about money?  Not understanding it. Not knowing how to utilize it productively. Money is a vague anomaly, something that, for some, is easily quantifiable, for others a mind spinning process that brings little comfort, little stability.

I look at numbers and my head spins. That portion of my brain which controls numbers has permanently gone on vacation.  Has always been basking in the suns of Antarctica.  My father used to help me with math homework until “Modern Math” was established.  He bought a book on the subject and I remember nights when both of us would be crying trying to figure it out.

When I was a Paraprofessional in the schools, kids in grades 4 and 5 quickly learned to go to someone else for help.  If they needed to write, do geography, jump through hoops, learn history, read, they knew to search me out.  Math?   Computers they taught me. Why get things marked wrong when help had been asked for?

I have always found myself in trouble with my finances.  This year I am facing problems way beyond my abilities.  I was on Social Security Disability, very deservedly so. I was not one of those milking the system . . . I am someone who doesn’t understand the system. Never good in Math, Traumatic Brain Injury made it even worse.

I work as a caregiver/CNA.  Some cases are paid out of pocket, some as an employee, others as an independent contractor. Trouble is, how do you keep course over a year, month by month, week by week, what is too much or not?  How do you tell a client you can’t work for them anymore because you just discovered they are going to start paying by another format?  How do you handle it when someone, in June, decided to pay out of pocket but in January, determined a 1099 would be more to their keeping?  It isn’t a fair system. I know, I know, who said it had to be fair?

I don’t have the ability to work 40 hour weeks, if you can find a job that gives you that. Even 20 hours can, many times prove more than I am capable of. I am in a great deal of pain on a constant basis. I need the benefits offered to the disabled – the medical benefits.  I don’t abuse the system. I don’t use Food Stamps or other benefits because I pay for them myself.  I need Medical Benefits and to qualify for Social Security. I’ve never filed for unemployment benefits or welfare.  If only Social Security helped you understand the process and then, if needed, provide the help necessary to comply with in the system.  The system would be so much more organized and understandable then.

I contributed to the system for many years.  To go from being a national Business Management Consultant in Human Resources and Management Development to someone on Social Security over the course of a working timespan is humbling. What many don’t understand is, the vast majority of the working disabled are trying the best they can.  But they are in a system that penalizes you if you work even slightly over the set limit.  Problem is, you don’t know in the beginning of the year what your earnings will be, or maybe in what form as in my case.

So now I am not on Social Security. I need to apply for re-establishment which can take 3 years if granted at all. To obtain it I need to work less or not at all.  If I work not at all, not having Social Security, I can’t pay my bills or eat.  My family is talking about taking me in to their homes. I’m 60 for God’s sake!!  As much as I love them, I don’t want to live with them any more than they want me.  This is the American culture where each generation provides for itself and lives separate from the others.  It would be one thing if we did things the natural way and lived multi-generationally but we are not, and don’t have that thinking pattern.  I have lived by myself for almost 20 years.

So tough choices all around.  Happy New Year! (and I still don’t understand the system)

 

 

 

Prompt – Why Do I write?

Why write? There are so many reasons, yet in the final analysis, so few.  I write because it’s a driving need.  I write because unless I do I am cast adrift with all those feelings I NEED TO GET OUT OF ME!!   I blog to reach out and find if there are souls similar to mine in this planet and where they are.  To find out that Bipolar or Fibromyalgia or Traumatic Brain Injury goes further than the entrance to my door is comforting, informing and quieting. It is where the stuff I have in my head gets out so I won’t be trapped within a miasma of discontent, frustration and pain.

Prime Time

Sometimes words need to be spoken.
Not for posterity or fame
but to be one voice in the vast wilderness
of the cacophony of noise.

Perhaps I’m so shell-shocked
because of my traumatic brain injury
and bipolar issues . . .
the need for silence, surcease of pain.

Still, I need to be with people,
ones who understand,
who don’t question me
or condemn my behavior.
Perhaps in limited doses –
but it is essential to me.

Prime Time gives me that.
No judgment, no shame.
Friends and guides . . .
ones to help me down my path
to remind me there is one
and I have a necessary place on it.