This will be the first article that I dictate, and I have a stuffy nose. However, I feel as though I have things to share.
I applied for benefits from my parish’s Council on Aging. At first I was summarily denied. The reason for the denial was that I was too young, and that I was not on public assistance. I explained that I was an American veteran and a former schoolteacher. The reason that I was not all on SSDI was because as a schoolteacher we don’t pay into the Medicare System. I only worked for a private firm for the last 4 1/2 years prior to my disability date. The Social Security System requires that you have five years to receive any assistance.
I was directed to the supervisor and I will be assessed for benefits within five days. The only benefit that I may qualify for would be transportation to and from medical visits. Currently, every time I have a doctor’s appointment I have to arrange for transportation. I can no longer drive. There may be some days in the future that this will change. However, in my current status, driving is a hazard for me as well as anyone else around me. I explained this to the supervisor. And the supervisor said I should qualify for the transportation I desperately need.
My next call was to the Veterans Administration. I was pleasantly surprised that I may receive assistance in paying for my medications including my over the counter meds. I don’t want to say publicly how much out of pocket monthly my medical bills are. Let us just say they all are currently exceeding 25% of my monthly income. Additionally, it appears that in the upcoming months they will increase. Even with excellent Medical Insurance.
At this point, I am realizing that I have been experiencing an elevated amount of spasticity for the last five weeks. It could be six weeks, but I can easily say five. I have reached new heights in extended pain. The current medication that I am taking decreases the level of pain by relaxing the muscles. However, it does not prevent the body from trying to spasm. The last five weeks have left me with numerous bruises, stretched and torn muscles. I broke down yesterday. I have no one but my wife to thank for giving me the time to release.
I am still failing to accept the fact that I am disabled. I blame others for not doing what I myself cannot do. And that is, accept who I am and what my limitations truly for. I can no longer drive. Getting to the bathroom is a challenge most days. I do not shower unless someone is in the house to check on me. Working in the backyard is an absolute treat. This only happens for a couple hours on Saturday. Attending Mass, something I never missed, is an extreme challenge. Currently, I make about one church service a month. I wish it were more.
My mother lives 30 minutes away. I can last about 15 minutes in a vehicle with someone else driving without having to sedate myself considerably. Thus, visiting my mother is greatly limited. Riding in a vehicle to see her is worthless if all I am going to do when I get there is be stoned.
What I can do is work on programming my weather data analysis. What I can’t do is organize communications with a dozen people to request information repeatedly. I don’t have the energy. Maybe things will improve now that im set up for voice recognition. I do have to say that this is much easier for me than writing, or should I say, typing an article or letter. As I am still getting fatigued, but my hands do not hurt. And for that, I’m very thankful.
I’m very close to pulling support for all organizations. I don’t have the energy to negotiate for information any longer. For example, I am trying to obtain a current list of committee chairs. I am now in an exchange of four emails to get one single list that will generate a considerable number of e-mail exchanges with each committee chair to get them to produce a list of activities and the dates. For each event, a description is needed. In the past out of the 12 or so chairs one person required one e-mail in replied with dates and descriptions of each event for an entire year. I almost died.
I don’t know if my requests are not clear or that I speak better to teenagers than I do adults. But the one respondent that replied correctly, with an apology, was an 18 year old. I think my response to her, was about 10 pages of nothing but thank yous. If everyone operated as she, things would get done with immediacy.
In the area of working on other people’s computers, the energy it takes to set the beast up destroys me. After a few days, I unable to work on the system very slowly. My medications cloud my cognitive skills. So the time that I stand working on the computer has to be coordinated with my ability level, my medication level, and my clarity level. Not to mention, feeding myself is a chore. Working on someoneelse’s issues will likely never happen again. For their sake.
Maslow’s “Hierarchy of Needs” comes into play often. I am not meeting my fundamental needs. I feel as though I am preparing for the end of life. Likely, I will live for several more decades. The life I live, cannot be the life I have been living. I need to adjust my expectations of myself. Tracking hurricanes and working with available weather data gives me joy. Worshiping Christ, gives me joy. I feel need to greatly restrict access to my skill set. I don’t know where I am going. Only tomorrow will tell.
Jay C. Theriot