Humility & Gratitude
During pregnancy, I developed an autoimmune disease that nearly crippled me, and now I am on a healing path. For this I am extremely thankful. I have been diagnosed with Dermatomyositis - inflammation of the skin and muscles. It is a muscular dystrophy disease that destroys skin and muscle tissue. While the problems I had with the skin on my hands were challenging (dry, cracking skin causing open cuts that had to be bandaged daily), they seemed like a mere inconvenience in comparison to the debilitating muscle weakness. I have always prided myself in being a very physically able person, so being disabled for several months has been very humbling. It has allowed me to realize how much I took my physical strength and ability for granted.
Now I have deep gratitude for my renewed ability to do simple things, such as:
- Hold my head up straight while sitting with my back unsupported
- Lift the covers off my chest while lying in bed
- Sit up from lying down on the ground
- Turn on the light or faucet
- Brush my teeth with one hand
- Wash my hair without turning my head upside-down
- Put my pants on without having to sit down
- Cut up hard veggies
- Wash the dishes in the sink
- Unload the dishwasher and put dishes away in the kitchen
- Give Naomi a bath
- Go to swimming lessons with Naomi
- Swim in the deep end unassisted
- Put Naomi in the carrier by myself
- Adjust the rear-view mirror in the car
- Turn the steering wheel in the car
- Shop for groceries
- Load Naomi in the carseat into the car
- Ride a bike!
I am still not at 100%. My estimate is that I am at about 70-80% functional strength. In March, I believe I bottomed out at about 20% - I only don't say 10% because I wasn't in a wheelchair. In March, I thought that if things continued to progress the way they were progressing, I would be in a wheelchair in September. It is September, and not only am I not in a wheelchair, but I am almost back to my old self. I still have a ways to go, but I can feel myself getting stronger every day.
Here is a big list of "Thank Yous" to my amazing friends and family for their support (in no particular order):
- Matt Walsh - you have been my Ichiban. I could not have gone through the last year without all of your dishwashing, schlepping, love and acceptance. Thank you. To quote Randy Travis, "my love for you is deeper than the holler, stronger than the rivers; higher than the pine trees growin' tall upon the hill; my love is purer than a snowflake that falls in late December; and honest as a robin on a springtime window sill; and longer than the song of the whippoorwill."
- Becky Cannon (Bibi) - from financial support to moral support to business support to mold remediation support and housing, you are the most generous and giving mother and grandmother we could possibly ask for. Thank you for all of it. I love you so much.
- Erica Rae Robinet - you are such a rockstar. You care for our most precious cargo in the most caring way. And you're able to keep us all well-fed and clean. And you're hilarious. Thank you for everything you do.
- Lenny Jacobs - thank you for all your positive encouragement and support of me and my family throughout all of this.
- Naoki Kubota (Jiji) - thank you for so many house-call acupuncture treatments when it was so difficult for me to get out for a treatment.
- Maureen & Steve Walsh (Momo & Grandpop) - I could not ask for more supportive extended family. Thank you for coming to visit, bringing thoughtful gifts, offering to help and, of course, babysitting your darling granddaughter, Naomi.
- Beth Walsh - thank you for being such a sweet Aunt Beffy to our little Naomi and for being a lovely sister-in-law to me.
- Eleanor Macken - you have been so hands-on with your help. You came and rearranged my kitchen, putting things down on a level I could reach. I have never seen you so confident in taking charge of someone else's space, and I appreciated it so much. You'll be happy to know I have put some of those things back in their original spots now, and I can reach them! You went grocery shopping for me and looked after Naomi on days that I didn't have child care. Thank you so much.
- Liz Hoekwater - you and Jray came walking with Naomi and me so many times when I couldn't put her in the carrier myself and I felt so isolated. Thank you for that. I can put her in the carrier myself now, but we still want to go on walks with you and Jray!
- Annie Rogers - you came to visit in the hospital, took me home from the hospital, volunteered to go grocery shopping and tried to help me find better doctors. Not to mention everything that you and family has done for our family - organize the MealTrain and make a welcome-home care package for when we came home from the hospital. Thank you!
- Anna Littman - you organized a Blessingway Ceremony for Naomi's birth - it was just in time and so meaningful. You made extra dinners when I know you have a million things going on at the farm and with your family. You got extra indignant about the sub-par healthcare I was getting and you encouraged me to get better care. I am so glad you did - thank you!
- Mark Strazzer - you came over for baby walks and play dates at the drop of a hat when I couldn't go anywhere with Naomi. Thank you for giving me a set of one-pound weights when I couldn't even lift them up over my head (I am up to 4-pound weights now).
- Melissa King - you offered to come and bring us to your baby play dates, you gave us baby stuff and you made us dinner (yum!). Thank you.
- Aynsley Toole - you came to visit for the Blessingway and again to meet her 8 months later - with your baby Paige. What a joy to get to see our little girls play together! You connected me to your father, the dermatologist, for a complementary consultation. He knew what it was from the beginning! Thank you for being such a dear friend.
- Anne-Elizabeth Kaitano - thank you for all of your optimism and encouragement. You got so feisty when I was not getting the help I needed and you started calling in favors from wherever you could.
- Becca Shields - my autoimmune buddy. Thank you for always being like a big sis to me. You will get what you want - I say a little prayer for it every day.
- Teresa Czepiel - thank you for coming to visit and for bringing me a little piece of our Diamond Heart work with you.
- Meredith Fonseca - so far away but still concerned and connected. Always writing me sweet handwritten notes of encouragement and support - thank you.
- Mari Kubota - I am so sad that your family is going through what it is going through right now. I send love and light and support your way every day.
- Sally Robinson - amazing continuity of acupuncture care (and ad hoc therapy sessions, too) over the past 6 years. You're amazing - thank you.
- Michael Rossoff - incredibly intelligent and insightful. I appreciate your blending of East and West traditions, as well as your personal concern for my recovery.
- Dr. Brian Lewis - took the time to call me after-hours on a Friday when I was 35 weeks pregnant to let me know that something was strange with my labs and that I should get them checked out by the OB. You could have waited until our appointment and it would have taken longer to uncover what was going on. Thank you for your consistency.
- Dr. Ruchi Moore - my bird-dogging OB. What an experience - at 30 weeks, you said to me, "I just love boring pregnancies!" because mine had been so uneventful up until that point. At 38 weeks when you delivered Naomi, you said that mine had been one of your top 5 most complicated pregnancies you've seen in your time as an OB. Thank you for our little miracle.
- Dr. Mary Catherine Goodwin - thank you for not discharging me when you determined that, while I didn't have preeclampsia, that something was going on and I shouldn't just walk out of the hospital.
- Dr. Julie Levengood - thank you for advocating for a more aggressive form of treatment for me that would still allow me to breastfeed when you could see my muscles atrophying before your eyes.
- Dr. Patrick Hanaway - helping me see the big picture and diagnose aspects of my health that I could not have known about. Most importantly, thank you for your hopeful optimism.
- Dr. Scott Graves - thank you for reminding me that the power to heal is within myself.
- Dr. Anne Jacobs - thank you for your words of wisdom without expecting anything in return. I greatly appreciate it - amazing how so much of it aligned with other practitioners' words of wisdom, as well.
- Dr. Elena Bravver - thank you for allowing me to get my infusion treatments at home instead of at the Cancer Center. While the Cancer Center reminded me of how serious my disease is, it was also not the most uplifting place to be for one day a month.
- My teams of nurses at Mission during my 3 stays last year - these folks are amazing. Great care and bedside manner. So supportive.
- Nurse Paul - you are the most compassionate and accommodating home health nurse I could possibly have. You even came to work with me last week - thank you!
- All of the people who donate blood for my infusions of immune globulin - I do not know any of you, but thank you. Your donations are helping me live a healthy and productive life.
- Sabine Boots - so intuitive and skillful as both a couples / family therapist and an individual therapist. Thank you for your guidance.
- Susan Weiley - thank you for helping me get really clear about what I wanted in my life. You were so right. And I am so happy.
- Brian, Andrew and everyone at Asheville Family Fitness & Physical Therapy - you all have been so supportive this year. What a special place.
- Michael Johnson - thank you for coming and giving me a private yoga class when I could not do downward dog or cat-cow.
- Paige Schneider Crow - one of our birth doulas. Thank you for all your support - before during and after Naomi's birth.
- Emily Sullivan - our other birth doula. Emily was the one who actually got to participate in our birth. Thank you for all of your love and support and at-home postnatal massages (some of them even with Naomi on your back)!
- Jen Chandlee - you are an amazing Doula Ninja. Thank you for all your love and support.
- Roxy Robbins - thank you for your sweet care of little newborn baby Naomi and our family.
- Fern Katz - we miss you down South, lady! I think of you when I use the juicer you bequeathed to us (which is mostly everyday) - thank you.
- Isabel Jenkins - thank you for so many fill-in days of care for Naomi - a huge support.
- Everyone at i play. - you are like family to me. Thank you all for keeping the ship headed in the right direction while I have been working to get better.
- Everyone else whom I have missed!
Most of all, thank you to Naomi Walsh Kubota for helping me understand what love really means. I love you with all of my heart and body and soul. Thank you for being you.
Someone asked me the other day if I was pissed about my disease. I had to feel into to see if I was. I wasn't. I am not. I am grateful that this year has taught me two things - to be more compassionate to myself and others because everyone always has something going on, and to appreciate everything that I have in my life. If I didn't have everyone on the above list in my life, I would not be alive today. I am humbled by the greatness of this experience, and I have immense gratitude for everyone and everything in my life.
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