A pain to make you ache to die: MAID advocate’s story
Janet Hopkins’s lichen sclerosus, on top of rheumatoid arthritis and more, has taken away her will to live. Now she’s fighting to have the law around medically assisted dying amended
Janet Hopkins wakes up every day in a torture chamber; her own body.
She hates relying on morphine, but such is her life. Such, to varying degrees, has been her life for 13 years since she was diagnosed with an auto-immune disease called lichen sclerosus. It’s not just that. She also has fibromyalgia and rheumatoid arthritis. Also kidney stones so painful they would cause her to vomit, pass out and be hospitalized. And osteoarthritis.
Hers is a medical history, it seems, of fresh agonies inflicted one on top the other, each more cruel than the last.
“Oh, and I gave birth to two children,” she says, with a wry chuckle. So there was also that, a joyful pain.
Hopkins, 69, who lives in Burlington, has borne up bravely under all of it, but a year ago, in February 2020, the progressive effects of year upon year of lichen sclerosus finally stripped away not just another layer of healthy tissue but every trace of her will to live.
She has become a reluctantly astute judge of pain and, she
tells me, the pain at that point, and since, is “the worst I have ever felt.”
Lichen sclerosus is a chronic, progressive inflammatory skin disease which, in Hopkins’ case, first presented on her torso but then became concentrated, as it often does, in her genital and anal areas. It causes atrophy of the skin tissue and is incredibly painful.
One might think that the only good thing about lichen sclerosus is that it’s not fatal. For Hopkins, that’s not a good thing She wants her life, her suffering, to end, but because her condition is not terminal it doesn’t meet the criteria, under the current law, for medical assistance in dying (MAID).
Should Hopkins and people in her situation be allowed to die with medical assistance if it is their express desire? It’s a question that is now screwing the Senate’s conscience to the sticking place, to borrow a phrase. Canada’s upper chamber has been debating amendments to Bill C-7 that would allow Hopkins to qualify for MAID.
In advocating for the changes, Hopkins has been vocal and has written to her MP Karina Gould and provided Senator Mobina Jaffer of B.C. with a letter for the Senate to consider. It describes her life, her pain, down to the horrific details of her toiletries. It implicitly asks anyone who would make a decision for her, consider this. Because if you can presume to intrude your judgment onto that most delicate intimacy, of a person hoping to decide their own mortal fate, you are not allowed to shy away from an exact scrutiny, including the ghastliest particulars.
In her letters, Hopkins describes: á “I wear only dresses because underpants irritate my skin. During a doctor visit I was coughing and got up to get a drink and urinated on her office floor.” á “Symptoms which have become progressively and intensely worse are: Redness and raw tissue around the anus and vulva; itching that is so severe I want to die; severe pain where I am moaning like an animal, white patches which is skin that has atrophied; thin skin which tears and bleeds easily; ulcerated and blistering lesions.” á “In the morning before I shower, I wait for morphine to dull the symptoms before the water touches my genitals. A flare up can leave me exhausted, crying and feeling alone dealing with pain I believe no one else can understand. Severe flare ups cause excruciating pain and bleeding both from the genital and anal area. á “While LS is not a deadly disease in itself, suicide is the most common form of death. I asked my specialist if patients have talked about suicide with this disease and she said ‘yes.’ My genital and anal area will be completely destroyed over time.”
Hopkins sleeps with a bowl of ice on her night table and has an ice cold cloth between her legs until the pain subsides, with towels and plastic in her bed to guard against soaking of the sheets.
She shares these details with such a gentle manner and good humour that the telling seems incongruous with what is being told — yet it flows so naturally from her unvanquishable character.
All the time we talk, her husband Allan, her stalwart, sits attentively by her. She talks about her son and daughter, and the therapy the family has been through around her decision, the difficulty of facing the prospect of a loved one’s death by intention, and their support which ultimately sustains her in her choice for a merciful death.
Gould, who is minister of international development, told Hopkins that her letters and her case were put before Sen. Jaffer who resolved, upon reading it, “to work even harder for the Bill to pass.”
Sen. Jaffer wrote Hopkins back, saying: “The reason for me wanting to circulate your letter is to impress on all my colleagues including myself how important it is that we pass this bill C-7. By writing your letter to me you have stood up for the rights of many other Canadians as well.”
Now it’s up to the Senate. And then the House.
“It’s not that I want to die,” says Hopkins. “But I am not the same person I was all my life. I am losing myself.” But she doesn’t want her legacy to her grandchildren to be suicide. It will be if she has no other option.