The Naked (Awkward) Truth…


So, I really haven’t been posting much, have I?

I keep meaning to, but never can seem to find the time, or more accurately the impetus. To be entirely honest I’ve been really struggling, on all fronts. My body has been as unpredictable as ever, rarely giving me ay real stretches of time without my HKPP showing itself and disrupting our reality. Certainly there are wonderful times, but the threat of physical collapse perpetually looms and without notice. Six years after the first real hints of something being seriously wrong, and four years after we found what we hoped would be an effective management protocol we are still looking for a better solution, better answers and a way to really move forward. But alas, we feel perpetually stymied, with the periods of progress all too short-lived.

As far as the quilt world goes, I still find myself struggling with the same things; it is, as always, a world of hurry up and wait. Opportunities arise, but then sit on the back burner for indefinite periods. Answers are promised, but rarely seem to come; plans are made but then languish, or simply evaporate at the last minute. Perhaps that is the life of a creative practitioner, but at the moment my entire professional practice feels provisional, kind of on hold. And that just leaves gaping holes, unable to really search out new possibilities because time must be held in anticipation of those answers.

At a certain level I think I am still missing the certainty of that academic job. To be honest I still wake up every morning missing it, and somewhat jealous of my wife who is still in that world. I don’t resent it, but it just serves as a reminder of what I no longer have and the provisionality of my current professional life. It feels like most of what I do is wait. There are so many projects in the works, waiting for that final go-ahead: fabric, TV, quilting, and more, but the holding pattern has been going on for so long I have somewhat lost hope.

And all of that just goes to fuel my essential difficulty: at long last we seem to be settling into some degree of normalcy. We have been juggling so many things for so many years: diagnosis and treatment, Bee’s infancy, the decision to have a second child and the struggle to do so using a donor to eliminate the risk of passing on my defective gene, K’s tenure process, and then the move to England. Now what lies ahead, at least for a while, is life, the wonderful banality of it and I am struggling with looking forward.

I have so much to be grateful for, most of all the extraordinary family I have been blessed with, but each day I wake up and wonder just when my body will give out, when it will throw me for that loop and reintroduce its turmoil. When everything was in some degree of flux it was easy to hope, to hold on to the idea that when things finally settle down my HKPP will get better, that things will be easier, but the last six months have shown us that that simply may not be true.

HKPP doesn’t go away. It can’t really be treated; it can only be managed, and imperfectly at best. So now I find myself facing the rest of my life, the decades of that truth, and the knowledge that I will miss so much, will be unable to do so much. More than that I fear that I simply do not have the strength to make it through those days. Of course I have no real choice; there is no way around it, but that simply leaves me feeling so very fragile, a shell of myself. Everything is reduced to a form of calculus, a risk analysis for every choice and a weighing of probabilities, one that ultimately only I can do.

I have an enormous amount of support (that extraordinary family of mine), but I cannot help but feel guilty about the burden it places upon them. And then there is the financial reality of the holding pattern I find myself in; the realities of working in the quilting world is grim, and I can only do this because of my wife’s career. Yes, there has been some recent talk about the way the designers and makers in the quilting world are compensated, but I don’t think we talk enough about the very real impact that has.

Designers here are perpetually doing a similar calculus to that which I perform regarding my body. Is a particular project worth the small compensation relative to the time it will take away from the family: how many missed dinners, playdates, an homework sessions is it worth? Waiting for the next go-ahead leave often large gaps in income, but ending up over-committed results in extraordinary burdens on the family, a family that is often already stretching to support that designers aspirations.

Trust me, this is part of my daily consideration. I worry everyday about things from the current credit card bills to the kids’ college funds; it is all in a holding pattern as I wait for answers. And all of that just fuels my sense of uncertainty, the fundamental provisionality I live in thanks to an invisible but debilitating neuromuscular disorder.

So, I suppose this is my update. I should probably mention the cool stuff, the continued writing and the shows, the classes and the quilts, but so much of that seems minor right now because I feel like I am falling apart, so terribly adrift. I am surrounded by so much love, but feel so very alone in my body.

I’m not sure why I am sharing all of this; I tend to be pretty private, but I feel like what I am feeling somehow resonates with tremors that are vibrating through the quilting world. It is a landscape that offers so much hypothetical opportunity, but rarely offers more than “exposure.” That seems the cornerstone of the industry itself, but exposure never actually pays the bills; exposure leads to more exposure but little more. And this so often leaves designers feeling isolated; they see others seeming to make it, to make it work, so they assume they are somehow failing, or are not good enough, alone in their struggles. Ultimately, that is what I find so troubling about the quilting industry; its rhetoric of empowerment and encouragement is so often just that while the practical realities rarely move beyond sweat-shop wages, and even that is often for the “lucky few.”

Perhaps I am reading too much into things; perhaps my inner turmoil is leading me to misread the tea-leaves of the quilting world, but I don’t think so. There seems to be a lot of discontent among the very community that felt so vibrant just four years ago. I wonder if the industry has just expanded too much, gotten to big to actually be something real. I don’t know, but it just feels too much like, well, me sometimes.

Here’s what I know. I need help and I am finally getting it; the struggle is more than I can manage alone and is more than I can simply place on my family. I’m not sure if my physical illness is leading me into depression, or if this is just an understandable by-product of my physical reality. Regardless, I am at last taking the time (that precious commodity) to try to find a way. Now I just need to find a way forward in the quilting world, if one in fact exists for me…


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