The Aftermath of Lost Independence

I’ve achieved numerous milestones in my lifetime from boyhood to adulthood. I got my first job at 16. I got my drivers license at 17. I went to college during my senior year of high school and went on to earn a bachelor of science in psychology and spent a short time in the field. I got married and fathered three children. I’ve been married twice and now to a wonderful wife with a step-daughter who I care for as my own. I spent twenty years in the restaurant business learning the ins and outs of it. I became a pretty good cook doing so. 

I’ve also reached a few milestones I would’ve rather done without. But with the grace of God and His strength I overcame years of alcoholism and anorexia in my past. For years I self medicated my bipolar when my medications wouldn’t work with alcohol that almost cost me my marriage. I went through a nasty custody battle that caused me to feel out of control and as a means to find some form of it I fell victim to anorexia for six years. But by finding my renewed relationship with God He restored me and I can add the milestones of recovery to my list.

With the diagnosis of Parkinson’s and dementia I’m making a new list to mark off. A list of losses. I’m only 40 and I haven’t driven in over five years. February 18, 2010 was the last day I drove. I no longer even have a license. I remember my wife and I having “the talk” with my neurologist about me driving. It was the first step of losing my independence. I don’t drive because it’s too dangerous. I can’t react fast enough and I get lost. I get disoriented and confused. I’ll admit I’ve driven our car a couple of miles illegally a couple of times, but we won’t tell everyone about it. But for me to drive on a regular basis is too dangerous. 

I’ve accepted my diagnoses. I’ve faced reality by now. I can count that on my faith. I have found peace. But it wasn’t always that way. For a while it was depressing. For a while I was angry. The loss of independence is very life shattering. You lose your identity. You are no longer who you were. You are less of the person of who you were. You are broken. Unfixable. Childish. A burden. It is a pain that comes and goes with each and every loss.

So you get angry. And you get angry at everything. At everyone. You get jealous at everyone because they can still what you can’t. You grieve and it’s a process. You don’t just go through the grieving process once you through it every time something is taken away from you. And it’s personal. First your license. Then the bills. Then watching the kids alone. Then taking your own medicines. Then taking your own walks. Every time something is taken from you, you are being robbed. Parts of what makes you, you are being stolen right out from underneath you and you have to hand them over without a fight. So you get angry again. You get sad again. You get confused again. You get depressed again. You adjust again.

I don’t work and am on disability. I would sometimes work part-time when I could but I eventually had to finally just say enough was enough. I could no longer do the work that I had done for twenty years. I even tried modifying my job twice. My short term memory couldn’t keep up. I started working the week I turned 16 years old. I had to give up the independence of working. Now I clean the house. I used to do the cooking at home but I rarely do that anymore because I find it difficult to multitask. I have to focus my mind on one thing at a time. It bothers me that my wife has to come home from working all day then cook a meal for the family. But I help as much as I can. And cooking is what I love to do. I’m good at it.

I remember when I made the decision not to do the bills anymore. I’ve done the bills in our home for years. But I had reached a point that I couldn’t understand the math any longer. And making lists were just too difficult. So I had to make the decision to lay one more burden on my wife. Not only does it upset you that you lose the independence of something, it carries the weight of knowing you have to lay that burden upon a loved one. You have to ask yourself, “If I don’t do this who will?” And I see the extra stress it puts on my wife and I carry that weight with me. Loss of independence carries a sense of guilt.

I have early onset dementia and with that comes unfulfilled goals. I have a B.S. in psychology and I almost completed my masters in psychology. I had career goals. But I will never get to complete them. I will never be the psychologist I wanted to be. Sometimes I don’t even remember yesterday. I was driven by my own madness of bipolar to seek answers with the desire to help others with similar life’s like my own. Instead I’m only left with school loans that have been forgiven due to my disabilities and the desire to learn more but the inability to do so. So I’m saddened that my quest for psychological knowledge has dwindled to almost a standstill. 

I used to love to read. I could devour a book in days. Non-fiction of course and anything in a memoir and about psychology. Much of the time I would read anywhere from two to four books at a time. I could read two lines at a time and speed read. I could read from right to left after reading left to right. Now I do good to remember a paragraph after I just read it. This is a luxury that has been stolen from me. 

I no longer prepare my own medications after I landed myself in the emergency room last week for taking all my medications twice in two hours. I had forgotten I had taken my medications at 8:00am and retook them at 10:00am. Most of my meds are dangerous to take high doses of so my wife whisked me off to the emergency room where they monitored me for a few hours and sent me home to sleep it off after everything checked out OK. Needless to say my wife now prepares my medications for me each night for the next day.

My wife worries about me spending the days by myself at home. And it’s becoming clear she has reason to do so. 

Losing independence is hard to do and is never a onetime ordeal. It happens over and over again. You relive every emotion over and over each time. Accepting the loss of independence means admitting powerlessness and it’s painful. It’s big and scary and feels a lot like giving up. And it causes a lot of different emotions.

Parkinson’s and dementia are often referred to as “snowflake” diseases. Meaning no two people experience them in the same way. They are different for every person. The pain of losing independence will be experienced in different ways. But it is painful none the less.

Few experiences in life are more universal than pain. Some pains, the pain of grief or emotional trauma, have no physical stimulus whatsoever. They are states of the mind, concocted by the alchemy of the brain. These feats of consciousness make it possible for suffering to loiter in the mind long after the body’s need for it has passed.

We hold onto it until it becomes comfortable. Some people never come to terms with their loss of independence and remain angry.

Some emotional pain will leave us with time. Some will leave if we decide to let it go. There are times, though, when we must live with emotional pain; either because we haven’t had sufficient time to heal or because we are not able, willing, and/or ready to let go.

Yet we all have the potential to attain an outlook that will change the very landscape of the pain experience. We learn to cope, and even triumph. It’s our choice. It’s my choice to accept each loss of independence.

“If I were to choose between pain and nothing, I would choose pain.” –William Faulkner

I know what it’s like to feel nothing. I call it the “Nothing Feeling.” Its depths are far deeper than any pain. It is a state that my bipolar mind secludes itself into. A depth so dark that life is not even found. I choose pain over my “Nothing Feeling.” To get an idea of how I would choose pain of my “Nothing Feeling” read my blog “The Dangers of Nothing.”

There is fresh emotional pain, and there is the variety that lingers in varying degrees, sometimes in the form of emotional scarring but sometimes simply in the form of persistent inability to feel truly independent.

I rarely feel grateful for the fact of pain, but I almost always feel grateful for the message that it brings. I can count on pain to represent my best interests in the most urgent way available. It is then up to me to act on those recommendations.

Broken places heal back stronger and rarely ever break in that place again. No one would choose to go through pain, but no one would deny that’s when you have the opportunity to learn the most.