I have been angry the last few days, angry about some things going on in my life that have nothing to do with ALS, well almost nothing to do with it. As many of you know I am in the midst of a very nasty divorce, one where my ex-wife has denied my disease until forced to acknowledge it by her children and medical documentation, where my ex-wife has continued to hound and demand spousal support right up to and including enforcement orders from the government where my passport has been cancelled and my disability pension is subject to garnishment. All of this in spite of my not working and being unable to work.
Last Wednesday, the day I was required to surrender my passport, was particularly difficult. The loss of a passport may not seem like much. After all, once we get to court next week this should be all swept away and I can simply re-apply for a passport. To see it more clearly you have to do a bit of math.
According to my current prognosis, I may live as long as another three or four years. This is longer than my original prognosis of 36 months. That original prognosis is the one the doctors still attest to; they know the reality of this disease and they know that an extended prognosis does not necessarily mean an extended quality of life. In fact what it really means is that I get to deteriorate for longer, to suffer for longer.
For discussion sake, let's look at the original timeline. I was diagnosed in November and given a score of 38. That was 8 months ago. I was told that I could expect to lose about one point per month. Sure enough my current score is 30, a loss of 8 points in 8 months. I am right on track regardless of my new prognosis. That means I have about 30 months left. Of course not all of these will be good months. My ability to travel is probably limited to about 12 - 18 months at best. It could be less, hopefully more, most likely somewhere between.
Now consider my passport. It will take up to 6 weeks for me to get my new passport. This is because it can take up to a month to clear the federal maintenance enforcement order under which my ex-wife had my passport cancelled. After that I must go through the time and cost of re-applying for my passport. That time represents 10% of my travel life. Finally, think about yourself and losing your passport. If you expect to live another 20 years, try surrendering your passport for the next two. That is what this means to me.
What is even worse is the sense of loss when combined with all the other losses in my life. This is another loss, a completely preventable loss. This damage was willfully done, not by illness but through spite, greed and anger. That is why I am so angry.
Your soon to be ex-wife sounds like how my husband's ex-wife was. They divorced after 5 years of marriage. His ex spent everyday of the marriage demanding more & more. He paid for 2 homes by working 70 hours a week but yet she didn't work. When he wasn't working he was expected to clean the house and take care of their child. After 5 years of mental and physical abuse he gave her everything just to leave. His ex-wife spent 20 years telling my stepdaughter I broke up their marriage even though they were divorced 2 years before he even met me.
ReplyDeleteI can relate to what you're saying about being angry. I hope once your divorce is final that you will be able to enjoy what time you have left.
My ex-wife's actions in this way did not start until after I left her. We had plenty of problems in our marriage but I have to say she was not this cruel while we were married. This is, in part, why I find this so hard to deal with.
ReplyDeleteShe may just be bitter. I hope this can be resolved soon.
ReplyDeleteShe is very bitter and angry. I understand why. Her life got messed up too. Her anger will remain until she deals with it. It's too bad; the only person really hurt by anger is yourself. That is why I try not to stay angry.
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