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Sunday Thoughts on Living with Migraine: Remembering John Robert

Three generations of John Robert: John Jeffrey, John Marshall, & John Emry

Good morning, and happy Sunday to my extended Migraine and Headache family.

As some of you know, John Robert, my husband, died unexpectedly on September 18 last year. What many people don't realize is that John was quietly, but steadfastly very supportive of the Migraine community. He started out being very supportive of me in my struggles with Migraine disease. Then, both of our sons married women who have Migraine, and five of our nine grandchildren have Migraine. 

John is a great example of why I dislike it when people say that nobody can understand Migraine unless they have Migraine themselves. John seldom had as much as a mild tension-type headache, but he certainly witnessed my Migraines — many, many times. When we were first married, my Migraines were episodic and not very frequent. The first time he was with me during a Migraine, he was on his knees beside me, softly asking what he could do to help me. He helped me get my meds, get into bed, got me an ice pack, darkened the bedroom, and got our sons to the other end of the house, explaining to them that I needed quiet. 

One evening, after my Migraines became chronic, he asked me to sit down for a discussion. He said that he knew I wanted to keep working, but that he could see how difficult it was to even try to go to work most days. He wanted me to know not only could we afford for me to not work at that point, but that he really wished I'd quit my current job and concentrate on doing whatever WE needed to do to get my Migraines back under control. He emphasized that my feeling well was more important than the extra income. He promised that, as my partner in life, he was also my partner in dealing with Migraine disease and any other health issues that might come along. 

When I needed to see a Migraine specialist, and there were none in our state, he took two days off work every time I had an appointment with my first specialist in Philadelphia, an eight-hour drive from our home. He learned about Migraine with me, voraciously reading everything I gave him about Migraine, treatments, and so on. Extra medical expenses when I wasn't working? He took that all in stride. We cut back on the extras — eating out, cable television, etc. Days when I was so sick I needed him to come home from work? No problem. If I didn't feel well in the morning when John left for work, he usually came home on his lunch break to see if he could do anything for me. Usually, there wasn't anything he could do, but it made me feel better to have him home for a bit.

When I started doing the work I do, John was my biggest supporter. I wasn't sure I could do it, but he was. For the last 18 years, he has been my source of strength and confidence. The deeper I got into my work and the Migraine community, the more John followed both my work and the community. The pay for my work isn't much, but he didn't care. All he ever said was that it would be helpful if I didn't spend more doing my work than I brought in. He didn't mind that I donated a huge portion of my earnings to Migraine and Headache nonprofit organizations. In fact, when my birthday and Christmas came along, he often made donations in my name as gifts to me.

It's taken a while for me to be able to share this with you. I miss John terribly every single day. Today, however, I want to share more of him with you. He was after all, a great supporter of yours too. 

Live well,

 because a migraine is NOT "just a headache"



 drawing on our inner Ninja to live a full life
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