I visited a hemophilia treatment center for the first time in the 1980s, to have my factor levels tested. The phlebotomist couldn’t find a vein, and I was distraught. Workers ended up pinning me down to get my blood. The result was that my factor…
Lately I’ve been feeling stuck. My life seems to have taken on the appearance of an infinite to-do list. The moment I tick off a box, three more appear. Every day, I am literally out of breath running errand after errand, with the ultimate goal of somehow staying afloat. Bills…
Long a food literature devotee, I continually marvel at the seeming effortlessness with which authors, home chefs, and Michelin triple stars approach the kitchen. Their sense of matter-of-fact wonder at gathering simple or impossible-to-find (except in a French market) ingredients simultaneously fills me with awe and consternation. How did these…
Let’s face it. This year contains one struggle after another. We continue to ask the same questions: “How do we beat this virus? Will I continue to be insured during layoffs? How will I afford quality care for my loved one in the middle of political, medical, and economic turmoil?”…
Exhaustion, stress, loneliness, and boredom are a few symptoms of living in our current world. Some people easily adapt to new ways of moving in the world, and others have a more difficult time. What is amazing is how the rare disease/disorder community seems to move forward without skipping a…
When my husband, Jared, and I were dating, many of our friends thought we had the perfect relationship. We were snuggly best buddies, intimate and passionate lovers, and mentors to each other. It was a bond I could only describe as spiritual and otherworldly. I had never met anyone who…
We all live according to life lessons. Not every way by which we govern our lives proves useful or affirming, but the lessons still unknowingly exist. My goal is to identify the negative patterns that I relate to the world and change them so that my actions match my desired…
I have struggled with anxiety and depression since my early 20s. Fortunately, my mental health is in excellent shape thanks to medications and therapy. These two aspects of care are necessary for me to be the best person I can be, not only for my family but also for…
I have seen it many times. When a woman in a family with hemophilia gets pregnant, some feel OK emotionally, but for many, it causes a moment of panic, and sometimes sheer terror. What have they done? They are so scared that they passed…
I’ve grown quite fond of collecting eyeglasses lately. Stay-at-home boredom compelled me to start a vintage fashion modeling hobby, and suddenly a necessary medical appliance became a means for me to express myself. I enjoy matching my eyewear to my outfits, and in the process, my collection has grown. When…
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