Caregiver Contribution Revisited


A couple months ago, I posted a picture J had drawn of himself trying on my non-rebreather oxygen mask. The plan was to have him draw days we shared that were significant to my illness, maybe once per week, and post those, with the eventual (rather lofty) goal of publishing it as a book, perhaps with my Migraine Diary vignettes.

However, the reality of life tends to interfere with those types of plans. Especially a life in which one partner, one parent, is chronically ill, and the other has to work his ass off. Today in her blog The Daily Headache, Kerrie Smyres discusses the depressing statistic that chronic illness ends at least 75% of marriages. It’s amazing, then, that J and I are even still a team. A project of this magnitude is hard for anyone to get off the ground, and we also have Medusa to contend with. The monster. The shadow. The constant interloper, destroying our finances, but not our hopes and dreams.

Again with this SSI bullshit. I checked my online account, which says that my benefit for June, paid on August 1, will be only $148. I don’t understand. That is so little. June’s gross was $2500. Subtract $722 for the girls and that leaves less than $2000. I thought that with wages less than $3000, the benefits would be paid at no more than $741 per individual, but up to that amount, not to exceed $3000 total. So of course that led me to believe my benefit for June would be $741, and now this disappointing shock. I haven’t received a letter of explanation yet so I am trying to hold my rage and despair in check after what happened before, but clearly we cannot rely on my Disability payments for anything. We have to figure out another way in the meantime.

So far we are going to apply for SNAP benefits (done, waiting for approval); refinance the house to lower mortgage payments (by the end of next week); update and drive traffic to J’s travel website Wonderbuggy where we get a tiny percentage of each hotel or ticket reservation made (this weekend); and a possible Kickstarter project involving The Migraine Diaries. My vignettes about my migraine childhood, interspersed with days in the present, with comic book style graphics by J. Or maybe I could self-publish an ebook of the vignettes and the project could be our current life: 365 Days of Migraine, published as an actual, paper book.

In any case, here is a page J worked on about a month ago, while we were in Cape May on vacation. A day that approached 100 degrees on the Jersey Shore, and our third floor room oven-like in the un-air conditioned house. My oxygen and two sumatriptan injections had been ineffective. Rather than go to the ER, we made a last-ditch effort to get into the cold by finding a sweet, inexpensive little motel in Cape May Court House, near the hospital just in case, but blessedly air conditioned, quiet and private. We left the girls with our family and spent the night at the Hy-Land Motor Inn, and it worked. My migraine faded upon arrival.

The graphics aren’t finished, because, life. But I added some color today, and by posting it, I hope to cement our resolve to dive in to this project, to invest in our future using the raw materials we’ve been given. J’s prodigious artistic talent; my undeniable writing skill (besides my mothering ability it is the one thing of which I am proud); and unfortunately my devastating illness. And the fact that despite the odds, J and I are still a team. We can do this. There is nothing to stop us but our own fears and anxieties. Our future is in our hands.


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