Tenacious ME
Tackling disabling autoimmune disease with obstinance and humor.
Wait, hope, work
One of the hardest parts of a failing body, for me, has been the many ways it limits my ability to do things. I miss going for a stroll in the woods to calm my nerves, whenever the need arose. Late afternoons spent wandering around my yard, weeding plants, while chatting on the phone. The freedom of climbing into the car and driving to the shore to clear my head. I even miss spring cleaning, scrubbing, dusting and polishing, and the exhaustion and satisfaction of a job well done.
Long gone are the dexterous hands that could craft and fashion things for necessity or whimsy. The powerful, capable body that propelled me through the dancing waters and up hillsides for vistas that stole what was left of my breath, now struggles with daily life. I miss an active life, pining for it, like a long-lost lover, always hoping some magical twist of fate will send it back my way.
Some days that hope seems fanciful and beyond reach, others the paths that might allow some old freedoms are visible, if faint. Because whatever else disability might be, it is, always constraining, limiting. Yes, I know there are a million ways determined, disabled folks have found to get around their limitations. Living in an age with so much amazing technology is a blessing. Yet, most adaptations require not just mindset but also means. I’d have an awesome off-roading power chair to carry me to the woods tomorrow if it were up to me. But, realistically, that is not something that is so easy to obtain. (It hardly even exists, sadly.)
SO I wait, and I hope, and I work. I wait for the day when this disease is in check, for the surgeries to repair the damage, for the healing that will allow me to grow strong and capable again. I hope for a future without such limitations, for the means to change my situation, and the strength and determination to get me there. I work to strengthen and protect the body I have left, to create new, loving habits, to find the pathways that will lead me back to my old self, capable, adventurous, inventive, industrious, tenacious ME.
Tenacious ME 