From falling down in training, to falling down in a fencing tournament then on to being in a wheelchair and the attempts to find a job (in a country with a 10 time unemployment rate for those in wheelchairs), I felt, through it all, shame.
Shame for every trip to the hospital. Shame for the $60+ for each ambulance trip and $80+ for each EMT call-out. Shame for every afternoon or evening ruined because I couldn’t go out, or worse had heart problems, or a micro stroke (TIA), or seizure cycle. There is the shame for the year and year where Linda was stuck in worse than Limbo, but rather a partner who, after a couple years, it became clear would not get better, and so our relationship, our holding each other up during down times was broken, by me and me alone. No extra odd jobs for me, no more hustling two or three minimum wage jobs to make the rent.
We don’t have euthanasia here nor does the ‘socialized medicine’ cover the costs of medicine, not even close. They cover part of the cost of an air conditioner if you have autonomic failure but not the cost of electricity, or anything else.
I can tell you that 1 in 35 women get MS, or 1 in 750 get MS and probably the stats are less for women who get cancer, and I can’t tell you what others feel but I feel shame. I am EXPECTED to feel shame. An RN comes into my home and walks out without putting on pain medication, indeed, she puts on two patches backward, soaking my top with Fentanyl, but leaves, job undone because as we reduce into the rudeness of undeclared hostility, she sees herself as doing a FAVOR for me, an act of kindess which I MUST act grateful for. That she gets $50,000 and is indeed part of a service industry, that she should be asking ‘how else can I assist?’ and have slogans like ‘we do it the way YOU want’ is ignored because I am a burden.
One of the first things I was told was that I am not craven enough to be disabled. I needed to publicly acknowledge my sub-human status in order to get the largess of care. So my GP calls my questions ‘time wasting’ and me ‘stupid’, ‘idiotic’ and worse. VIHA has in four years, only affirmed, twice, that they discriminate against me due to my disease. And the palliative unit Victoria was, until the late 80’s only used for those with cancer and openly questions if other dying people ‘should be allowed.’ (The answer is yes, but not those who die of old age, only the ‘right type’)
If I did not feel shame, I would be reminded of it at every turn. I am the problem: the doctor says it, the health agency says it, the caregiver groups say it. And if, at first accused, I am not a mental case but someone dying of physical cause, the attitudes do not improve, they get worse. Every appointment I miss, and I have missed and missed and missed appointments. I cannot have aid breathing at night because I missed the oxymeter test, then they were sick, then Xmas holiday, and missed the echocardiogram to determine how much my heart is enlarging as I die, and yet my GP is frustrated that I still live. I hear from Linda that her government boss is pressured to put down how my illness makes Linda a bad worker, the same complaint from 3 years ago, four years ago…
How can I not have blame, and shame for stealing years from Linda. For stealing her ability to smile, or laugh. Hurting her impeccable job performance causes me shame. How many events have I missed due to being ill? How much life do I have now to give? And when are they going to realize that without extra-ordinary circumstances, I don’t know how long it will take to die. But I will only be making less of the lives of those around me.
Maybe it is like when raped or abused, the victim is held up to a viewpoint that it must have happened due to them in SOME way. So there is shame here, as I MUST have been able to prevent it or changed it or made it different or better, or gotten the treatments which would have stabilized it, though I have asked EACH accessible neurologist in Victoria for application of IVIG, and two inaccessible, as well as every other specialist and person with hospital privilege.
I did this. I brought what we all fear and hate, Death, into your life, into your living room.
How can’t I be ashamed.
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