"let us run with patience the race that is set before us"
--King James Bible, Hebrews 12:1
At the race on Sunday, someone was holding up a sign with this biblical verse on it. In addition to the many humorous signs (at mile 2, for instance, one that said, "If you were Paul Ryan, you would've been here an hour ago) and motivational signs ("If running a marathon were easy, everyone would do it"), this sign in particular caught my attention and helped me focus on the run when it got tough. At mile 7, when the first big uphill set my stomach and quads into turmoil, my mantra became, "Run the race you're in" or "Run this race." Instead of focusing on my desired time--which I did not quite make--or on how to improve in future races, thinking about these lines reminded me to focus on the present moment, to enjoy the way that my feet touched the pavement, to hear the cheers of people calling out my name (since it was printed on the bib), and to appreciate the endurance and strength of my body as it powered through the last really hard, uphill 10K. Such zen thinking, to stay in the moment and to focus on my breathing, has often centered me and also often eluded me. It's easy to worry about the next few miles, to fret about not meeting my goals, or to wonder how I might prepare better next time. But what's lost in such fears and hopes and regrets is the joy of the experience of living in my body as it is pumping life through my veins and helping me to achieve really exciting things. So I'm grateful to Mrs. Sign Holder for helping me remember that each step that day was a pleasure, a gift, and a reward.
A few posts ago, I argued that NMO wasn't a battle, that war rhetoric would never fully capture my mom's experience as viewed through me eyes. Although comparing her ordeal to a race isn't fair either, I hope you'll indulge me in a race metaphor. Despite the hardships that she faces living with Devics, my mom attempts each day to run the race that she is in, with endurance, with patience, and with grace. Even when she fights her limits (often), she takes time to notice the birds in the trees, to laugh with her granddaughters, and to listen to my concerns. Her race is not easy, it is not fair, and it leaves behind wear and tear. But she runs on. One foot in front of the other.
It's not too late to donate to Guthy Jackson at http://www.guthyjacksonfoundation.org/donate/tribute-donations/ and to write "in honor of Patti Lellock." Every penny of your donation goes to research to find a cure for NMO. Thank you to everyone who has already supported us whether through donations or encouragement.
Wednesday, November 21, 2012
Friday, November 16, 2012
Guest Post By My Mama, Who Rocks
How does one person receive so many blessings? The past couple of weeks I
have unfortunately found myself in a darker than usual mood. I haven't
found the answers myself when I enter this bleak and lonely plane, but
those close to me seem to realize at these times I'm unable to stand
alone and gather to hold me up. They keep me from falling into that
deep, dark hole that so frightens me that I might one day enter and
never return to feel the sunshine on my cheeks. This week alone I have
received gifts of love in self-help books, a smooth and magical stone,
phone calls just to 'check in' on me, another friend who won't let me
fade away, an introductory card from a new acquaintance - the list goes
on. It took me some time to realize these blessings, but I do thank each
and every person and God for awakening me from this dungeon. This
morning I see the red head on my woodpecker that visits our suet each
morning brighter than ever, a huge deer
standing in the yard where I've not seen one before. I'm anxious to
begin wrapping the Christmas gifts that have sat waiting for my
attention for a week. I am actually smiling. Earlier in the week I had written a poem asking 'who do I ask?'. This morning while reading it - I
understood my thoughts, but I didn't feel it. I'm ready to march on
again and for this I thank you all. I can't do it alone. I shared this
poem with very few, one being my daughter, Jacy. And her reply "the eye
sees not itself but by reflection, by some other things." --Julius
Caesar. She can see past my low ebbs and knows they will rise once
again. And for the second time she has put her heart, her sore knee, her
precious time into preparing to run another marathon to raise monies
for NMO research and awareness for the Guthy Jackson Foundation. I
couldn't be more proud of her taking action and realizing how fortunate
she is to be able to move as she wishes. I will be moving with her
this Saturday - in my mind - where all is possible. How blessed I am.
--Patti Lellock
And remember, to donate, visit Guthy Jackson Tribute Donations and write "in honor of Patti Lellock, who rocks." Only 2 days to go!!
--Patti Lellock
And remember, to donate, visit Guthy Jackson Tribute Donations and write "in honor of Patti Lellock, who rocks." Only 2 days to go!!
Thursday, November 15, 2012
Down to the Wire
With only days to go before running the Philadelphia Marathon, I'm beginning to get nervous about meeting my goals. My main goal is just to finish the race, preferably with no injuries. Of course, I'd really love to get a PR (sub-3:59), and maybe even to break 3:50, but c'mon, I just had a baby!
More importantly, however, we're still not close to our goal of $3000 to support NMO research. Please donate a few buck (or more!) to help find a cure for my mom's disease. Visit http://www.guthyjacksonfoundation.org/donate/tribute-donations/ and write "In honor of Patti Lellock." I'll be doing a few more last minute posts, including an update of how much we raised, over the next few days. Thank you for your support!
More importantly, however, we're still not close to our goal of $3000 to support NMO research. Please donate a few buck (or more!) to help find a cure for my mom's disease. Visit http://www.guthyjacksonfoundation.org/donate/tribute-donations/ and write "In honor of Patti Lellock." I'll be doing a few more last minute posts, including an update of how much we raised, over the next few days. Thank you for your support!
Monday, November 12, 2012
Battling Disease
Many people use the rhetoric of war to talk about illness. We "fight" the pain, "battle" the disease, "defeat" the contagion, and "struggle" with physical limitation. There is something almost consoling in the active, take-the-reins diction of war when we apply it to disease, to something that is in a large part out of our control. Using battle rhetoric offers the hope that we can "win," even if, as in war, we suffer some pain and loss. Collateral damage may happen in the form of scars or limps or weakened eyesight, but it might be worth it if it leads to defeating the big, bad enemy of whatever disease is assaulting us. In taking arms against a sea of troubles, we can feel empowered, as though we can have agency in the face of an uncontrollable virus or illness. The benefit of such war rhetoric is that is motivating; it can help inspire those suffering from diseases to "keep fighting" or to "soldier on." It can be like the inspiring words found in patriotic songs or recruiting ads: "Be Army strong." People who fight valiantly with their illnesses, like soldiers, can be brave, strong heroes, rather than weak, pitiful victims.
On the flip side, however, adopting the rhetoric of battle to describe illness also highlights this lack of control, as well as the pain and aftermath of the disease. My mom, for instance, suffers what the doctors call "attacks" that cause severe pain and have led to multiple near-death encounters. Here, the language of war emphasizes her inability to stop the disease from ravaging her body, just as it highlights the aftereffects of intense pain and difficult recovery. As with war, using the rhetoric of battle, glory, bravery, and strength is a coping mechanism, an attempt to make meaning out of something incomprehensible, unfair, frightening, and, at times, dehumanizing.
There is value in adopting the rhetoric of war to describe her disease. Her battle with NMO has shown her to be strong, determined, and downright inspirational, like the many heroes who have fought in wars to preserve the kind of life and values that Americans hold dear. At the same time, this language is limited. Her disease is not an enemy to be fought, killed, and defeated. That's not how her kind of autoimmune disease works. According to war terms, her body would be fighting itself, what Milton called an "intestine war" in Paradise Lost. No one wins in this kind of battle, and thinking about NMO or her own body as a battlefield, I think, diminishes her strength, her character, and her unique situation more than it elevates it.
Perhaps it would be more useful to think of her, her disease, and her body in its particularities, rather than as an abstraction, especially one as violent as war. So, on this Veteran's Day, in honor of her personal battle, I'll try to find new words to describe her experience. May they be words of peace.
"A Love Poem For My Mother's Body"
Her body is beautiful, wonderful, strong.
It flushes with life and energy.
Her legs remember every step they ran along the trail,
white with winter wear, black with stones, brown with trodden dirt.
Her arms remember every curl
to hold a wiggly baby, to press a brick in the wall of her new home, to swish a brush on canvas white.
Her lips purse to kiss little cheeks, recalling every kiss that came before, every word of love they ever framed.
Her skin is soft when I hold her hand, and her hair dances when she lifts up her chin.
She dances, still, and curls her fingers round the frets on the neck of her new guitar.
She swims in water warm, soft, still,
making little waves in sunlit pools.
Her warm, rich voice bubbles through her chest;
I hear myself in each reverberation.
She sings, blue skies in every note.
She breathes.
With less than a week until I defeat my marathon, please consider donating to find a cure for her disease. Please visit http://www.guthyjacksonfoundation.org/donate/tribute-donations, and be sure to write, "In honor of Patti Lellock" when you do.
On the flip side, however, adopting the rhetoric of battle to describe illness also highlights this lack of control, as well as the pain and aftermath of the disease. My mom, for instance, suffers what the doctors call "attacks" that cause severe pain and have led to multiple near-death encounters. Here, the language of war emphasizes her inability to stop the disease from ravaging her body, just as it highlights the aftereffects of intense pain and difficult recovery. As with war, using the rhetoric of battle, glory, bravery, and strength is a coping mechanism, an attempt to make meaning out of something incomprehensible, unfair, frightening, and, at times, dehumanizing.
There is value in adopting the rhetoric of war to describe her disease. Her battle with NMO has shown her to be strong, determined, and downright inspirational, like the many heroes who have fought in wars to preserve the kind of life and values that Americans hold dear. At the same time, this language is limited. Her disease is not an enemy to be fought, killed, and defeated. That's not how her kind of autoimmune disease works. According to war terms, her body would be fighting itself, what Milton called an "intestine war" in Paradise Lost. No one wins in this kind of battle, and thinking about NMO or her own body as a battlefield, I think, diminishes her strength, her character, and her unique situation more than it elevates it.
Perhaps it would be more useful to think of her, her disease, and her body in its particularities, rather than as an abstraction, especially one as violent as war. So, on this Veteran's Day, in honor of her personal battle, I'll try to find new words to describe her experience. May they be words of peace.
"A Love Poem For My Mother's Body"
Her body is beautiful, wonderful, strong.
It flushes with life and energy.
Her legs remember every step they ran along the trail,
white with winter wear, black with stones, brown with trodden dirt.
Her arms remember every curl
to hold a wiggly baby, to press a brick in the wall of her new home, to swish a brush on canvas white.
Her lips purse to kiss little cheeks, recalling every kiss that came before, every word of love they ever framed.
Her skin is soft when I hold her hand, and her hair dances when she lifts up her chin.
She dances, still, and curls her fingers round the frets on the neck of her new guitar.
She swims in water warm, soft, still,
making little waves in sunlit pools.
Her warm, rich voice bubbles through her chest;
I hear myself in each reverberation.
She sings, blue skies in every note.
She breathes.
With less than a week until I defeat my marathon, please consider donating to find a cure for her disease. Please visit http://www.guthyjacksonfoundation.org/donate/tribute-donations, and be sure to write, "In honor of Patti Lellock" when you do.
Friday, November 9, 2012
Every Little Bit Helps
Yesterday, I listened to an interesting podcast on fetal cells (http://www.radiolab.org/blogs/radiolab-blog/2012/apr/30/fetal-consequences/). In it, researchers discussed how living fetal cells remain in their mother's body essentially for the rest of her life. While the verdict is still out on what these cells do in the body after the baby is born, one of the more poetic theories is that they help her body heal itself when it is damaged. There is a story of one woman whose hepatitis was cured by the fetal cells left behind by her many pregnancies. The cells banded together and transformed themselves into liver-like cells and patched up her tissue damage. Of course, we'd all love to think that a part of us could help cure the ills of our parents.
Since it's a far more complicated picture than simply healing, however, I guess I'll have to take comfort in less direct ways of helping to cure my mom's disease. We have raised almost $600 in a mere 2 weeks to support NMO research. That's an amazing start, and I'd like to thank those of you who have donated: the Hertzes, the Ford-Hertz clan, my parents, the Seabrights, Karen, and the van Druffs. We still have over $2000 to go and just over a week to do it. So please, if you have the means to make a donation, any amount helps us get to our goal and helps find a cure for my mom's disease. As with the microscopic fetal cells, every little bit helps.
Please visit http://www.guthyjacksonfoundation.org/donate/tribute-donations, and be sure to write, "In honor of Patti Lellock" when you do.
Since it's a far more complicated picture than simply healing, however, I guess I'll have to take comfort in less direct ways of helping to cure my mom's disease. We have raised almost $600 in a mere 2 weeks to support NMO research. That's an amazing start, and I'd like to thank those of you who have donated: the Hertzes, the Ford-Hertz clan, my parents, the Seabrights, Karen, and the van Druffs. We still have over $2000 to go and just over a week to do it. So please, if you have the means to make a donation, any amount helps us get to our goal and helps find a cure for my mom's disease. As with the microscopic fetal cells, every little bit helps.
Please visit http://www.guthyjacksonfoundation.org/donate/tribute-donations, and be sure to write, "In honor of Patti Lellock" when you do.
Monday, November 5, 2012
30 Days of Thankfulness
Since this is a long post, I'm going to remind you now to please help find a cure for NMO by donating to the Guthy Jackson Foundation at http://www.guthyjacksonfoundation.org/donate/tribute-donations/. Be sure to write "In Honor of Patti Lellock" in the box. We are only 1/10th of the way to our goal of $3000. With only two weeks left until the marathon, let's shift into high gear! Please tell your friends and family, and please donate if you can. Even a $5 donation will help get us there!!
There has been a meme going round my sites lately in which people post something for which they are grateful every day for the 30 days preceding Thanksgiving. Since we celebrated Thanksgiving this past weekend with my family, I thought I might do them all in one day. So, here it is:
1. I'm thankful that I got to spend another Thanksgiving with my family. My mom was given 5 years when she was first diagnosed with NMO, and here we are in the fifth year. So, for #2...
2. I'm grateful that my mom has kept this disease at bay and is still alive to celebrate with us.
3. I'm thankful that my father has the strength and character to support my mom as she struggles with NMO.
4. I'm thankful for two healthy, funny, happy, smart, and beautiful baby girls.
5. I'm thankful for a husband who supports me as I struggle with my mom's disease.
6. I'm thankful for my "baby" brother, who suggested the trip and drove more than 7 hours to be with all of us this weekend.
7. I'm grateful for laughter.
8. I'm thankful for my strong body.
9. I'm thankful for a warm home.
10. I'm thankful for my fun, smart, and sweet friends (you know who you are!).
11. I'm thankful for time to play with my kids.
12. I'm thankful for swings that go high, and squeals of laughter they inspire.
13. I'm grateful for my education and for time, leisure, and resources that allow me to keep learning.
14. I'm thankful for running water and electricity.
15. I'm grateful for the time to run and play.
16. I'm thankful for leaves to rake and then scatter by jumping into big piles.
17. I'm grateful for energy to do what I want to do.
18. I'm grateful for the love of my parents.
19. I'm grateful that they taught me to persevere, to think about multiple perspectives, to be strong, and not to take myself too seriously.
20. I'm thankful that I still have two smart, strong, and loving grandmothers around to be models for my little girls.
21. I'm grateful that I am doing work that I love.
22, I'm grateful that I get to teach others about my passions.
23. I'm thankful for my running buddies, one of whom just completed her first iron man.
24. I'm grateful for babysitters.
25. I'm thankful for the shoes on my feet.
26. I'm thankful that we have enough food to eat.
27. I'm thankful for coffee.
28. And chocolate.
29. And ice cream.
30. And wine.
Bonus. I'm thankful to all of you who support me, my family, my run, and NMO research. Please donate!!
There has been a meme going round my sites lately in which people post something for which they are grateful every day for the 30 days preceding Thanksgiving. Since we celebrated Thanksgiving this past weekend with my family, I thought I might do them all in one day. So, here it is:
1. I'm thankful that I got to spend another Thanksgiving with my family. My mom was given 5 years when she was first diagnosed with NMO, and here we are in the fifth year. So, for #2...
2. I'm grateful that my mom has kept this disease at bay and is still alive to celebrate with us.
3. I'm thankful that my father has the strength and character to support my mom as she struggles with NMO.
4. I'm thankful for two healthy, funny, happy, smart, and beautiful baby girls.
5. I'm thankful for a husband who supports me as I struggle with my mom's disease.
6. I'm thankful for my "baby" brother, who suggested the trip and drove more than 7 hours to be with all of us this weekend.
7. I'm grateful for laughter.
8. I'm thankful for my strong body.
9. I'm thankful for a warm home.
10. I'm thankful for my fun, smart, and sweet friends (you know who you are!).
11. I'm thankful for time to play with my kids.
12. I'm thankful for swings that go high, and squeals of laughter they inspire.
13. I'm grateful for my education and for time, leisure, and resources that allow me to keep learning.
14. I'm thankful for running water and electricity.
15. I'm grateful for the time to run and play.
16. I'm thankful for leaves to rake and then scatter by jumping into big piles.
17. I'm grateful for energy to do what I want to do.
18. I'm grateful for the love of my parents.
19. I'm grateful that they taught me to persevere, to think about multiple perspectives, to be strong, and not to take myself too seriously.
20. I'm thankful that I still have two smart, strong, and loving grandmothers around to be models for my little girls.
21. I'm grateful that I am doing work that I love.
22, I'm grateful that I get to teach others about my passions.
23. I'm thankful for my running buddies, one of whom just completed her first iron man.
24. I'm grateful for babysitters.
25. I'm thankful for the shoes on my feet.
26. I'm thankful that we have enough food to eat.
27. I'm thankful for coffee.
28. And chocolate.
29. And ice cream.
30. And wine.
Bonus. I'm thankful to all of you who support me, my family, my run, and NMO research. Please donate!!
Saturday, October 27, 2012
The Taper
As the Northeast geared up for a hurricane, I squeezed in my last long run in a little early. I was hoping it would be another 20 miler, but I only had time for 15. When it comes to juggling child care, dissertation writing, and distance running, I've learned that I have to be flexible and to accept my limitations. Whether it's insufficient time or an injury or some other stumbling block, I can't sit around and stew in my own juices when things don't go my way. When I throw a pity party for myself, I waste valuable time that could be spent doing a short run or making paper pumpkins with my girls.
To quote Star Wars, "Your focus determines your reality." So, instead of worrying about not fitting in another 20 miler, I'm choosing to think of it as an early taper. One of the highlights of the taper is that you get more time to do non-running activities, like working or snuggling with the kids. Another is that your risk of injury goes way down as you're gentler on your body. During the taper, you can accept (guilt-free!) that less running is exactly what your body and mind need to prepare for the long haul of the marathon. Sometimes, slowing down a bit has unexpected benefits.
My mom's disease has forced her to slow WAY down, and while it's not really fair to compare her experience to a training taper, they are similar in that slowing down forces you to see things differently and to reevaluate your priorities. She does this with grace. Though she does tend to put more things on her to do list than any sane person could manage, she has learned to prioritize her goals and to divide them into manageable chunks.
Despite my hopes to keep things in perspective, there is a little part of my brain wondering whether I could possibly sneak in a 20-miler next week. I know better, though, and will do my best to enjoy the taper.
Don't forget, please donate to the Guthy Jackson Foundation and write "In Honor of Patti Lellock." Let's meet this goal together! The link is http://www.guthyjacksonfoundation.org/donate/tribute-donations/.
To quote Star Wars, "Your focus determines your reality." So, instead of worrying about not fitting in another 20 miler, I'm choosing to think of it as an early taper. One of the highlights of the taper is that you get more time to do non-running activities, like working or snuggling with the kids. Another is that your risk of injury goes way down as you're gentler on your body. During the taper, you can accept (guilt-free!) that less running is exactly what your body and mind need to prepare for the long haul of the marathon. Sometimes, slowing down a bit has unexpected benefits.
My mom's disease has forced her to slow WAY down, and while it's not really fair to compare her experience to a training taper, they are similar in that slowing down forces you to see things differently and to reevaluate your priorities. She does this with grace. Though she does tend to put more things on her to do list than any sane person could manage, she has learned to prioritize her goals and to divide them into manageable chunks.
Despite my hopes to keep things in perspective, there is a little part of my brain wondering whether I could possibly sneak in a 20-miler next week. I know better, though, and will do my best to enjoy the taper.
Don't forget, please donate to the Guthy Jackson Foundation and write "In Honor of Patti Lellock." Let's meet this goal together! The link is http://www.guthyjacksonfoundation.org/donate/tribute-donations/.
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