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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19 Responses to The Naked (Awkward) Truth…

  1. 1
    Liz says:

    Thomas, thanks for this. You are absolutely spot on where the industry is concerned. At least it feels the same from where I’m standing. “Exposure doesn’t pay the bills.” Amen!

  2. 2

    I wish you strength and wisdom. I wish for more good days and fewer bad days. And I wish you all the best – you’re an inspiration.

  3. 3

    Wow, what a post. There are not enough words to express how this resonates with me as well. I am so sorry for your struggle. Know that you are not alone. In addition to your wonderful family, there are countless creatives who understand. Brave words in this post, and I thank you so much for sharing them.

  4. 4

    Yes, yes and yessety yes. Often let down by my optimistic over-confidence in my physical capacity to simply do normal stuff( wasn’t supposed to be walking by age 30, but here I am still just about on my feet at 61), often feel alone/inadequate in the face of other quilters and designers/ too reliant on the family support and currently wondering very similar things about the world of quilting …which is, I realise, not helpful, but perhaps, just as me reading what you just wrote made me feel a bit better about it all, knowing you are not the only one might make you feel a bit better- a virtual hug from across the seas.You HAVE to carry on and get yourself back to the FOQ in the UK so we can spend another evening in a bar…in the meantime, please don’t stop……and anyway, if we didn’t create and,specifically, stroke those fabrics, would we be happier? I doubt it.x

  5. 5
    Kari says:

    I want to know that I enjoyed your energy level and passion for quilting along with the way you shared your knowledge with our guild. It was a really special class at the museum and I am glad you came to visit us. You have something unique to offer the quilting world. Hugs and support to you.

  6. 6
    Rosanne says:

    I think you have hit the wall we all face when dealing with chronic illness. That point when we all realise that whatever we think we can do with the resources we have available don’t match the realities of the situation. It is an utterly miserable and frustrating point to be at. Depression is pretty inevitable but how we deal with is varies from person to person. I still hate not being able to work and the consequent lack of resources, of dealing with this alone and the constant inaccurate judgements of those around me after almost 9 years.

    There is a way forward for you and I can’t tell you what it is. It might be structured rest periods, relaxation classes, yoga or time out. It’s there somewhere. Having a passion sustains us in the down times.

    Never stop believing in yourself. What you do is amazing. It makes people stop and think about something they take for granted.

    You are right about over-expansion of the industry with everyone out to make a buck in a niche market. Look beyond the quilting sector and you will see a generation rediscovering the pleasure of making things for themselves and those they love. It still has room to expand but progress within any sector is a case of evolution, not linear progression.


  7. 7
    Battynurse says:

    im sorry you’re going through so much. I hope you’re able to find things that help you feel better.

  8. 8
    Angela Baker says:

    Your struggles greatly overlap with struggles in my house: academic spouse providing the main support; spouse with a medical condition that must be managed, can’t be cured; middle age ennui; trying to raise two kids in the face of all of it…. ah, but the quilting! One difference between us is that I have never been brave enough to push myself to try to a make paying gig out of my quilting. Instead, I turn to it as a creative outlet, as therapy, as joy, as meditation, as slowness, as life. And you will never know how many “creatives” out here are buoyed, calmed, inspired and enriched by YOU. Yes, by you. You are so valued and make such a difference, even if you did nothing else ever again. You clearly matter to your family, but you matter to world of creative people, too. So, keep building your support network and, when you can, keep creating! (Buddhism + cognitive therapy is a good combo, too, btw.) Sending good vibes.

  9. 9
    Brenda M says:

    Thomas this had to be really hard for you to write this and I want you to know how much to care and think about you. You have giving us all strength to keep going with our quilting and life in general. I suffer from MS and have not be able to work for over 4 years now, I was in a accident about the same time and it missed up my right arm so I have pushed the quilting to us as a healing process. But there are days where I feel so useless in this big world like I am not paying my way. And there are days where I really have to push myself to keep going. It helps knowing there are people out there like us with Illness and we keep going. We love seeing your work and love hearing and seeing your family. Makes us feel like we are part of your family and you part of ours. Please most of all take care of yourself…….

  10. 10
    ginevra says:

    I just want you to know I’m listening. I don’t have any solutions but I have faith that if you keep trying, you’ll be able to work out the solutions for yourself. All best wishes to you

  11. 11
    Ken Casey says:

    I certainly don’t have an answer or advice but know there is someone in Arizona pulling for you and yours to find your way through this as effortless as possible

  12. 12
    Mary Ann says:

    No advice, no good ideas but lots of caring and admiration for you and your family. And of course your creativity. I have learned so much from you in the last several years. And would miss your presence in the quilting world…what ever that might be now and in the future.

  13. 13
    Chloe says:

    I hope you find your place in the writing world – it is a poorer community without you 🙂

  14. 14
    Debbie Miner says:

    I don’t know what to say…but that I’m very moved by your post. Takes guts to share and make oneself vulnerable. I just pulled out my FQ bundle of Frippery (which obviously I love) and I’m gonna begin a new project today while thinking of you! 🙂 Prayers, peace and hugs…

  15. 15
    Peggy says:

    I thought Facebook had removed your connection from my view. I am glad you wrote this heartfelt synopsis of your current life.

    I agree with the above comments. I hope you find a way to be creative and continue to contribute in some way that gives you satisfaction.

    I understand your feelings about the quilt world. I see much expansion, yet the productive “jobs” are limited and comes and goes. It is difficult for a healthy person to do shows and other appearances, but to do that with an illness the appears unannounced would be almost impossible.

    Please take the best care of yourself. Give special hugs and time to your lovely children. Continue to be thankful for your wife and others in your family.

  16. 16
    Sara Hill says:

    Thomas–I want to tell you how very very sorry I am that you are going through this, and that I hear the pain and sorrow this illness has caused you. Enough that it takes such a toll on you physically, but it’s no wonder that it has dragged you down emotionally too. One liability of being a psychologist is that I tend to want to tell people to get help if I think they are depressed, so that is my inclination for you too–I hope you are not offended. I take medications myself for depression and have my whole adulthood. I sincerely hope things get better for you—

  17. 17
    kathy says:

    Hi Thomas, sometimes hugs, well wishes, family and friends are not enough…..sometimes when things get too hard to handle and too dark we need to get some help to find our way back to the light. Hang in there!!!

  18. 18
    Leanne says:

    I’m glad you are getting the help you need to sort the impact of the illness on you and your life out, and that you can avoid serious anxiety and depression with that help. And I hope you find you way to being and expressing yourself as the creative and artistic person you are.

  19. 19
    Susan says:

    Dealing with chronic physical conditions which may be invisible or visible to others is definitely a roller coaster ride that others do not understand. It has its ups and downs and often we try to hide or over-compensate for these issues rather than being open about it.

    It is good that there are some masculine voices coming through about the way people in the quilt world are paid. We are almost treated as hobbyists rather than professionals who deserve a living wage. I think as more people with other backgrounds come into the industry stronger, more assertive voices will be raised and hopefully things will change.

    Lastly—it is hard to train for an academic career and then not be able to find (or hold) a job. I earned a doctorate in order to teach at the college level only to find that there are no openings in a reasonable geographic area, and those which exist get hundreds of applicants for one position.

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