I am marking many year anniversaries in this month and last. “One year ago we left for Boston (December 29).” “One year ago I had the surgery to remove my septic hip joint (January 10).” “One year ago, I was at the rehab hospital (that would be current time January 20’s).” Conversations reflect on these almost daily. All of these memories dance around as dates on a calendar, because overall my memory of them is hazy. And for that I am thankful. Blood clots, steroids, immobility, fever, refusing to give me Tylenol, away from my family, being in a nursing home, chemotherapy, the first morning of back pain, being told you have a PE and 3 compression fractures. And these are the things I remember. The nature of it still overwhelms me.
This is my second year of disability. My second year of being disabled. My first year of being 2″ shorter. My first year of chronic pain. My second year as a survivor. Coming up on the first anniversary of my rebirth. An HLH survivor through bone marrow transplant. Fighting each day to be in the right half of 50% mortality.
I live for so many other firsts. My daughter’s first day riding the bus. My son learning to cook. My other son’s first case of pneumonia (and hopefully last!). Our first living nativity and our first candlelight service as the Goodrich family. Musical performances, grade cards, arguing about screen time, snuggles, cat naps, so many things that I am here for. Being here. Living in the present. This year spending our New Year’s at a water park and not a hospital. Being grateful for all the anniversaries that are passing.
I am preparing for my first surgery post transplant. I hope to have 3 this year. My right shoulder has been affected by the steroids and needs a partial replacement. That will come first. Of course, my left hip replacement, second. Can’t wait for that! And finally I hope to have my port removed this year. I am slowly being tapered off of my immunosuppressive. In turn, once that is successful, my prophylactic treatments (anti-viral and anti-bacterial) medications will be stopped. I’m getting my “baby” shots all over again. I’ve gone through the first round and will have the second soon. I appreciate the sense of a little security with those. And my PCP and I briefly discussed the discontinuation of my pain medication. That was a good conversation and I don’t feel so scared to do it anymore.
These next year(s) are recovery.
Being disabled is a real pain in the tucous. If you are not or have never taken care of anyone who is, you cannot fully appreciate the situation. I remember as a college student, one of my friends had a handicapped sticker on her mom’s vehicle which we took to the mall and promptly took advantage of. And let me say you are lying if you say you have never wanted one- even if is was just for Christmas season so that you could get a place at the mall (which you can’t anyways because so many people have them). You cannot appreciate being able to open a door and walk through it. And believe me “handicapped accessible” just means they installed a bar in the bathroom and a sticker on the door. Nothing burns me more than to see an able bodied person using a motorized cart in a store. And don’t get me started on those that park in the handicapped spaces and turn their hazard lights on. Walk your lazy butt. You only wish you were handicapped
This is a riot. Take the three minutes and watch it.
I started a job at UK med school as a “standardized patient.” I am more regularly getting to volunteer at church. I have less pain and more stamina than I did a month ago. At home, I can walk without assistance. I am focusing on this being temporary.
I have come to appreciate that this time in my life, I really am parking with my hazard lights on. I won’t have to do this forever. I am so fortunate that this is mostly temporary and I truthfully hope that after all these surgeries, I won’t need disability anymore. That a year from now I will be marking more anniversaries that reflect how far I have come, not just the turmoil that got me here.
But for now, please don’t take my parking space.