James shared his story in November of 2019
In 2016, my wife, Alice Mulligan, started experiencing pain at the bottom of her feet, which slowly progressed up to her waist within just a few months. Her skin became extremely sensitive to the point that it was painful to even wear clothes and shoes. For nearly three years she even avoided sitting down – it was too painful for her.
During this time, we started the arduous path of finding a doctor who could diagnose the issue, or at least offer some meaningful relief from the continuous pain. We sought out a neurologist and Alice started intravenous immunoglobulin (IVIG) treatment, commonly given for unknown neurological conditions, every four to six weeks. In addition to that, we sought other specialists’ input. We saw about 70 different doctors in varying specialties that might be able to put their finger on what might be causing this. Meanwhile, IVIG was minimally effective and Alice just kept getting worse and worse.
Living in Hawaii at the time, we soon realized that Alice was going down a road that required more medical attention than Hawaii could provide. We decided it was time to move to the mainland, and in 2018 we made the move to Colorado. Alice had lived in Colorado previously, she liked the natural beauty of the state, and knew, there, she would have access to high-quality medical care.
With this move, we were full of hope and expected that medical care in Colorado could take care of Alice. It’s fortuitous that medical aid in dying was available here.
Alice’s legs were discoloring and she had a breakout bleed on one of her feet. She had 50 treatments to try to heal this, and it seemed to be healing. On the final day of her treatment, she stood up and there was bleeding again. At that point, it was clear nothing was getting better. No one could help us, medically. There wasn’t any hope. The only help we could get was to stop the torture that Alice was going through.
We found ourselves in an untenable position, decline without any way of stopping it or reversing it. Things were not going to get better and Alice felt a need to put an end to the misery she was in. The daily pain had taken away from her spirit and she was clear that she was ready to pursue the option of medical aid in dying.
Alice did some research online to find supportive doctors in Colorado. In June, she was given a prognosis of six months or less to live and she officially started the request process to access medical aid in dying. It’s all we could do and I supported her 100% because I understood what she was dealing with.
We went through three years of great optimism and hope and then began understanding that nothing was going to improve and that her quality of life had become untenable. We are lucky to have established care with a doctor willing to prescribe. In a sense, he was a lifesaver - his willingness to write the prescription brought immense relief to Alice. She wanted to be in control of her own destiny. It was clear that Alice was going to quickly lose control; medical aid in dying gave Alice the control she desired.
On September 14, 2019, my truly remarkable and brilliant wife died, and a huge part of me died with her. For her last day, we had decided that we would carry on just like any other day. We both wanted life to be normal. We, very intentionally, didn’t make a huge event of the day. We got up, did what we normally do, she took her aid-in-dying medication, I helped her lay down, I laid down next to her, and she passed away peacefully within 15 minutes.
It was important to us both to not see it as anything extraordinary. It should be normal. You should be able to plan it, have time to say and do all the things you need to, and say goodbye to your best friend and that you’ll see them later.
