Running on Empty

I believe I have always been a gentleman, as well as a gentle man. That may be nearing an end. I am increasingly frustrated and irritable. I am not happy with the person I am becoming, but I see no way out, and I am looking hard.

I pictured it last night as a four engine aircraft running on three engines. Looks easy, but that is not how it was designed, that fourth engine had a purpose. The twin engines are fine with only two engines, there are plenty of single engine craft and helicopters. I should be happy with three engines, but I know I used to have four.

I attended a gathering last night, my big night out this week, and ran into someone I saw a few months ago. He remembered my name, we had met at a gathering of a related group which had been both of our first group forays. Of course I didn’t remember his name, and probably wouldn’t have without the injury. I was never good at names. After a while something happened which caused Sam to mention my brain injury, and he said “But you look okay.”

Yes, I look okay. Because what is wrong is something you cannot see. I falter, walk with a cane, am hard of hearing, can’t see very well, but those issues are common in people of my age. I have adapted. I smile, ask people to repeat what they have said or to speak more slowly, I have a beautiful cane, I connect abstract ideas on occasion, I dress well, I fit in. I can remember trivial events, which covers for the fact I forget what I am saying mid sentence. Writing does the same, you don’t stop every few words as you read this, you don’t know how much I struggle with each sentence.

A relative called the other night. I suspect he meant well, but there is enough of me left to feel critical of his aloofness. I can remember telling him about what I am doing, he acted as if he did not. He made some insulting comments, which I am sure he did not realize were insulting. When Emma was fighting cancer, another relative felt the need to casually insult the profession of restaurant server. When I reminded him that Emma had been a server most of her career, he doubled down, directly insulting my dying wife. Both of these people are related to me, not many of my close friends can believe it. I wanted to hang up, but I am too nice. I shook until I fell asleep, and slept poorly. The next morning when I could collect my thoughts I wrote him an email, explaining the pain he had caused. I knew better, nothing was going to change. He wrote back, I couldn’t bring myself to read his email. I asked Sam to read it, just to tell me if there were any questions to which I should respond. She said it wasn’t as bad as she thought it would be, but she hadn’t read my letter to him, so I let her read the email I had written. Her opinion changed, so I am glad I did not read his email. My words did not merit his response, which I had expected. This has nothing to do with my injury, it’s just a reminder of a disappointing relationship at time I need a more supportive one.

There are these kind of issues, the untangling of issues. I run into it with physicians, who try to separate my multiple sclerosis, traumatic brain injury, and advancing age rather than just treating the symptoms.  Insurance is even more frustrating, because it’s just a faceless voice on the telephone, giving their personal interpretation; if I call back I get another faceless voice with their own interpretation. Social Security Disability is scary, because from what I can gather it is a monolith, the unimpeachable opinion of one person determining my future, and that person has no medical training upon which to form this opinion. Personal interactions are the worst, everyone intends empathy, and I can finally understand the meaning of “You don’t know how I feel.” Depression is present, but I actually have brain damage. I can’t just think of things another way. I want to be gracious, but I don’t believe I can keep up the facade much longer. I don’t know how well I’ve kept it up so far, people have been falling away from me, no one has visited, I have received very little support from my fundraising attempts.

A few years ago, I visited Lieve’s brother in Belgium. She was never precise about his disability, but he was in his forties, living in an institution, wheelchair bound. He cannot speak, but he recognized me from a previous visit. We all had lunch in the day room, with the other patients. This was a residential care facility, there were no white coats, and most interactions were in Flemish. An hour or so in, I realized I could not tell the patients from the staff, and they probably felt the same of me. I was pleasant, attentive, but my English just sounded like gibberish, my Flemish was broken. I feel the same now, my adaptations and eloquence make me appear to be “normal,” I carry no physical scars, I look okay, but I am not.

I am scared. Not as much by my crumbling finances as my crumbling brain. I may end up homeless, if things continue the way they are certainly by this time next year, perhaps much sooner. I had once thought losing one’s mind would be peaceful, a gentle descent into forgetfulness. Sad that one of the last things I am to learn is the solitude of a broken mind.

 

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I always thought of myself as a warrior. I’m losing this battle.

 

 

 

 

 

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5 comments on “Running on Empty

  1. Blake, go for the disability. If I remember correctly (this was 1972), my mother-in-law had to supply medical records when she applied. Yes, the person making the decision is not medical. Even worse, Social Security has become so bureaucratic it is like reading a horror novel. You may even need to appeal as my one friend did, but the appeal worked.

    For heaven’s sake, why would you be gracious to someone who isn’t. If they insult you, cut the communication. You do not need that aggravation. It’s a shame you have no way to work off the aggression. Sending prayers.

    Liked by 1 person

    • kblakecash says:

      I applied what seems like forever ago, must be about six months. From what I hear I should expect to be denied at least once. I don’t know how long I can hang on without income while I’m waiting.

      I have some wonderful relatives, and a few that are difficult. My parents other son is the one who insulted Emma, the one in this blog I don’t think I can disown.

      Like

      • Blake, it took my Mother-in-law one full year. This was after a heart attack, open heart surgery, and a stroke. There was no way she could have returned to any employment, let alone her job as a printer.

        Liked by 1 person

  2. Diane Pearson says:

    I won my SSDI 6 months after I applied. My best advice is to be certain you have a documented paper trail. Be the squeaky wheel. It didn’t happen in my case, but a couple friends of mine received backpay to the date of application, once they were approved. A horrible event occurred between a family member and my mother at the time of her death which threw me into a tailspin and I ended up in the psych hospital for 2 wks…..approved. Please don’t hesitate to get help for the depression, your physical wellbeing depends on it. Attend TBI groups, make sure your primary MD is aware of and documents this. Document that you are trying everything available and are still unable to function in the workplace. Remember that SSI is looking at papers and not you. Give it up to the One in control whom you may not feel you are in the palm of, you are and there’s a plan, let go and allow it to unfold. Blessings are everywhere but are difficult to see when we get lost in the cyclone of despair. Don’t lose sight of the strong warrior you actually are. I’m rooting for you!

    Liked by 1 person

  3. Mike R says:

    Should you be denied, you may wish to use an attorney for your appeal. Somewhat of reputation in the field of SSDI. As the benefits are awarded retroactively, in most cases, this provides a source of funding for the attorney’s fees and is why most will take the cases with provision that they only will be paid if you are.

    As I write this I hate the weakness of my own words. You are a human who is hurting, and all I have to offer is words about processes. Forgive me. Sometimes blogs and posts fall short of what should be. I will keep making small donations, as I am able to. Wish I could be there to share a cup of coffee and be more than words on a blog.

    Like you, I’m going through disability and depression. Your words are braver than mine, as you say what I wish I could say so well, or say at all. For me it is a spiritual battle, as well, as I struggle with the mysterious providence of a sovereign God. I have been reading and rereading the book of Job, and chewing upon the words of Paul, Peter, and James, as they deal with the Christian response to affliction. At times I find comfort. At times I find myself in despair and crying out to God.

    I share your frustration with medical specialists that all want to sort out and parse the various contributions of my diagnoses, while nobody wants to focus on relief of the symptoms. I’ve slowly realized that they are doing what doctors do when they have nothing of much help for my symptoms.

    Perhaps one of the worst parts of medical disability is that it usually comes with other afflictions, such as finances. As men who could once earn income from employment we find ourselves unable to do so, so financial disability gets added to the list. Then throw on the impact of those who mean well but only add to our affliction by their words. Or avoidance. Not that I blame them–few seem comfortable around the suffering of others.

    Liked by 1 person

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