Stormy Weather, Part 2

So based on the fact that I had been assigned a judge who had a 20% approval rating, he filled 20 pages with “reasons” for his denial: his misrepresentations of my life with Cervical Dystonia, his own inability to evaluate a woman with a disability fairly, and his lies claiming there was no objective data in my medical records to prove how severe my disability is, even as I sat slouched over in my chair directly in front of him, using my hands to hold my head up while my neck visibly tremored.

In many cases, he took doctors’ notes out of context to use them against me. If one of my goals in therapy was to feel confident and attractive again and I arrived at my session wearing lipgloss and a blouse,   he said I clearly didn’t have any problems with self-care. He chose to ignore the objective facts one of my doctors read to me from my medical records, “simply” claiming there wasn’t any evidence from all six of my doctors. When I said I tried not to schedule more than one thing a day, meaning I will either go to one doctor’s appointment each day or go do my independent physical therapy program at Courage Center, that meant I had an active lifestyle. Oh, and let’s not forget about my active social life because I was becoming more involved in my church. This means I am now able to go to a weekly service 50% of the time, if I’m lucky.

And finally, my status as a frequent traveler. That averages out to be about 3 weeks of the year. Why on earth would someone with a disability travel? Because I had bought a timeshare 15 years ago and had literally been scammmed into buying one when I was in Mazatlan shortly before I went on Long-Term Disability. I have letters from Minnesota’s attorney general to prove it. Obviously, if I could sell it or could have gotten out of it, I would have. They stole thousands of dollars from me, in addition to the yearly maintenance fee I am stuck paying. Since there’s no one else to use these two timeshare weeks every year (and if you’d like to buy a week or a timeshare from me, PLEASE let me know), I have to use them. I can’t afford not to.

However, let me qualify all of this by saying I need those 2 weeks that are always spent by the sea or in hot weather during the long Minnesota winters. My physical therapist has repeatedly promoted the proven benefits that being at sea level has for chronic pain; I really do feel better when I’m there. And usually there are a few days where I visit friends or family or go to an education conference because I still have to get credits to renew my teaching license. How does this make me unworthy of being recognized as disabled? I know a number of people who travel every month because it makes them feel better. Apparently, if I’m truly disabled, then I should be forced to stay inside my house all day, every day.

After reading page after page of someone ignoring all of the hard work you’ve done to manage your symptoms of an incurable neurological movement disorder, how would you feel? And what would you do? There are two lose-lose choices, unless you are lucky enough to find a lawyer who will do a quality job of representing your life as you now know it, unlike my attorney. First, you have 60 days to appeal the judge’s decision, which hardly ever gets overturned. This will take 12-24 months of your life. If denied again, you can appeal at least one more time, keeping in mind that you only have until the end of 2018 to get approved for Social Security Disability. After that, you are completely locked out of the system.

Option number two? Start a new claim; the judge has already made you feel like giving up by telling you his decision will pretty much determine the outcome of your new claim. Since it took at least 2 1/2 years to go through the entire process of your first claim, you still may not make that 2018 deadline. How could anyone feel safe with all of these factors? Is there anyone out there who can save you from the storm, because at this point, you don’t know how to save yourself? These are the frustrations and questions I’ve been grappling with for the past fourteen days. I’ve been doing so much advocating for myself because there hasn’t been anyone else to do it, and I’m completely exhausted.  It’s very easy to feel like giving up, but what is the alternative?  When I’m gone for an hour during the day, my back, shoulders and neck hurt so much that I have to spend hours recovering with rest, heating pads, and ice packs.

Taking care of my health is a full-time job, yet those 20 pages make it sound like my life is one big party. I wish. I would rather not feel so lonesome I could cry. I would prefer to be around other people at least 2-3 times a week. I would love to be able to take my dogs on walks. I would love to be able to hop in the car and take a road trip whenever I wanted, just to get away from it all. And I would find so much meaning in doing a job I enjoy. It’s been a long journey for me to accept I can no longer do all the things that used to be my life. Does that mean I should give up living and not do anything? All of my doctors have said, “Absolutely not!” But apparently, if I truly am disabled in the eyes of this judge,  jury and executioner, I shouldn’t be able to do anything at all. His eyes so obviously blinded with a mask.

As I write this, I have no hopes, other than I hope no one else who needs the help of our government has to endure this kind of psychological,  emotional and constant physical agony. Unfortunately, at this point, I don’t have much faith in that.


4 thoughts on “Stormy Weather, Part 2

  1. This was so hard to read and reread. I thought about it all day with a hole in my stomach. The injustice of it all makes me sick. I can understand how all-consuming such an agony can be. In moments of agony, I always remember Louise Hay’s affirmations: “I trust the universe that whatever is happening to me at the moment is for my highest good”.


  2. I am so sorry that you are going through this. When Gene got MS, he went through some bs about his private disability….but then one of his lawyer friends, who was the head of MN Trial Lawyers assoc sent a respectful yet firm letter and that resolved it. He never had problems with his SSD but every year had to ceritfy that he could not work because of the fatigue. I am 65, hate to admit that, and I went through a couple of months of turmoil about getting my marriage certificate
    but once it got resolved( it was stressful) it worked out great. Unlike you, I am not in pain…do have the tremor and uncertainty about what lies ahead. I do take an exercise class at the PD center and that has been wonderful…I know the thirty years I spent working out all the time have helped me enormously, and I still am a fiend. I am going to a PD conference on Tues with a new friend from the class. Most of the people in the class are much more physically compromised than I am. My goal is to keep as functional as I can. And I think my diet has helped. John and I are thinking about going to the vegan butcher some time. If we do, we will invite you to drive with us.


    1. That would be nice to see you both, Sandi. They have a really great shop. I’m as physically active as I can be with the symptom of not being able to hold my head up on my own. I go to Courage Center 3 times a week to do my physical therapy program in the warm water pool or fitness center. When I was first diagnosed 6 years ago, my last year at Normandale, it was frustrating in many ways. One of the things I miss most is swing dancing. It was such a natural high for me. I used to teach it, perform and dance for fun, often times every day of the week. When we see each other, I’d like to know more about what the PD Center is.


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