My parents had one more idea for my six weeks of FMLA. They were going to Puerto Escondido, Mexico for a week..."why not come along?"
She said in her head, "Well, lets see...ummm...I am half numb!, I need medical care, I can barely handle the thought of being by myself for two seconds, (ie- I am experiencing some serious trauma symptoms, Mom and Dad!), and you want me to fly to Mexico City and waaaaaaaay south from there by myself?...!!!...!!!"
"We think you can do it." Three weeks after my life sentence had been issued: Hope.
You see, the night I came home from the hospital I instantaneously grieved the loss of my plan for my life: my story was supposed to climax with me living in some remote corner of the world, in love, spiritually full, offering health to the masses (including glorious rays of sunshine and a constant cool breeze). I think I heaved out through loud sobs, "I will never live in Africa;" it was symbolic yet real and raw. How can you refrigerate injectable meds with no electricity? I sobbed, and sobbed. Grieved and grieved.
And Kindness stepped in through my parents Faith. "We will get you there; you just need to say yes." And with fear that I let eek out in a constant state of teariness, (I quickly learned this was a way for me to prevent unpredictable, explosive bursts of anxiety), I boarded a plane with a kiss from my grandparents in Denver, navigated Dallas with God holding my hand, hugged and clung on to (for dear life) Gustavo in Mexico City, and fell into the embrace of my parents in Puerto Escondido.
"I was soooooo worried about you," weeped my Mom.
"I made it," my tears said as they bid good bye. Puerto Escondido is hot!, with a constant cool breeze.
Friday, July 8, 2011
Sunday, June 5, 2011
7 Years Later: The Goodness of God
It seems I have always had an intense emotional relationship with God. I would not describe it as devout, but maybe...ever present. I talk to him about everything: my fears, my hopes, my thighs.
Like I said earlier, I didn't deal with the big theological questions as one might expect. I was too sick and overwhelmed to do that. (Truthfully, it hasn't been until the last year or so that I have even wanted to delve into this study. I have had all the books on my shelf for years, but perhaps I needed to feel safe (?) enough with God, myself, and others in order to "go there."). But, I was conversing with God an awful lot: my constant companion, solace, confidante.
As we talked, strange things came out of me. And I do mean strange - like actual pictures of shoe designs, two or three at a time, that bordered on the strength of how others describe visions. (I know! Strange! I might guess this had to do with my right brain having more space to operate...but then again, I'm a dork). But also, strangely "normal" things: I want to fall in love, I want a family, I want to complete that triathlon, I want to travel. Normal seems like heaven when it has been stripped away.
One morning it hit me like a ton of bricks. Literally, I was walking around in my little apartment and I fell to the ground sobbing. This was not physical; this was spiritual. "I am praying to God about the deepest desires of my heart - why? Does he care? I mean, is he good? "
I sobbed my eyes out, "I don't feel you are good. I have lived like you are good, but do I really know this? I have worked through the "issues" around this, but do I really know this? Are you good?"
I had been exposed to incredible suffering: poverty, loss, illness; but it was not my own. I had had childhood illness, teenage angst, identity crises, some scary situations, but they had all resolved in their own due time. Maybe I thought, deep down, that I was exempt because I was "getting it right"...maybe. I wasn't aware, I didn't "know" this though; it certainly wasn't conscious. Now, though, I was in the unexempt category - starkly - and "due time" did not apply.
So the goodness of God was on the table. My lifelong, trusted companion was in question. Was this the death of my imaginary friend? Because if God is not good, what is the point?
It was out there. Some relief was found even in this most basic of questions. I "knew" in my head that lightening would not shoot down from heaven, but now I felt it. I had questioned my God's character and I lived to tell about it. At least He is that good.
(And with that, I will retire from this topic. There are tons of good books out there by people far smarter than me on this topic. I am not encouraging a formula to relationship with God or pretending to have studied this well; I am just telling my story to honor the pain and this experience of having some emotional distance from it. As personal testimony, I will say that the compelling part of the Christian faith is that Jesus answers the question about the imaginary friend, and addresses issues around suffering and its process that are the opposite of condemning - although us Christians are often the opposite. This is one of my deepest griefs for my Church. Christ is freeing).
Like I said earlier, I didn't deal with the big theological questions as one might expect. I was too sick and overwhelmed to do that. (Truthfully, it hasn't been until the last year or so that I have even wanted to delve into this study. I have had all the books on my shelf for years, but perhaps I needed to feel safe (?) enough with God, myself, and others in order to "go there."). But, I was conversing with God an awful lot: my constant companion, solace, confidante.
As we talked, strange things came out of me. And I do mean strange - like actual pictures of shoe designs, two or three at a time, that bordered on the strength of how others describe visions. (I know! Strange! I might guess this had to do with my right brain having more space to operate...but then again, I'm a dork). But also, strangely "normal" things: I want to fall in love, I want a family, I want to complete that triathlon, I want to travel. Normal seems like heaven when it has been stripped away.
One morning it hit me like a ton of bricks. Literally, I was walking around in my little apartment and I fell to the ground sobbing. This was not physical; this was spiritual. "I am praying to God about the deepest desires of my heart - why? Does he care? I mean, is he good? "
I sobbed my eyes out, "I don't feel you are good. I have lived like you are good, but do I really know this? I have worked through the "issues" around this, but do I really know this? Are you good?"
I had been exposed to incredible suffering: poverty, loss, illness; but it was not my own. I had had childhood illness, teenage angst, identity crises, some scary situations, but they had all resolved in their own due time. Maybe I thought, deep down, that I was exempt because I was "getting it right"...maybe. I wasn't aware, I didn't "know" this though; it certainly wasn't conscious. Now, though, I was in the unexempt category - starkly - and "due time" did not apply.
So the goodness of God was on the table. My lifelong, trusted companion was in question. Was this the death of my imaginary friend? Because if God is not good, what is the point?
It was out there. Some relief was found even in this most basic of questions. I "knew" in my head that lightening would not shoot down from heaven, but now I felt it. I had questioned my God's character and I lived to tell about it. At least He is that good.
(And with that, I will retire from this topic. There are tons of good books out there by people far smarter than me on this topic. I am not encouraging a formula to relationship with God or pretending to have studied this well; I am just telling my story to honor the pain and this experience of having some emotional distance from it. As personal testimony, I will say that the compelling part of the Christian faith is that Jesus answers the question about the imaginary friend, and addresses issues around suffering and its process that are the opposite of condemning - although us Christians are often the opposite. This is one of my deepest griefs for my Church. Christ is freeing).
Saturday, June 4, 2011
7 Years Later: A Deal with God
It was quickly decided that I should start MS medication along with all the crazy medication to help my body/brain recover from this injury. MS meds are injectibles that have pretty severe side effects. Many people that are diagnosed chose not to use them for various reasons, but a major reason is the side effects. I decided to give them a try since my path seemed clear at this point.
(By the way, there is tons of exciting, breaking research, on MS and treatment for it. For more info on the disease and its treatment visit http://www.nationalmssociety.org).
(By the way, there is tons of exciting, breaking research, on MS and treatment for it. For more info on the disease and its treatment visit http://www.nationalmssociety.org).
My saint of a mother had this wild, (and genius), idea: take the full FMLA allowance of 6 weeks off right away. She gave me good reasons for my practical mind: to be with family, adjust to the medication, make some initial lifestyle changes, and let my mind and body heal.
“But, what if this happens again? I need that time just in case.”
“Honey, if this happens again I am coming to get you and you are living with me.”
Deal.
And then I made a deal with God. “God. If this happens again, I am going home.” (Back to family's home in Maryland. I was in Colorado going to Seminary. Like, as in, I had a call to ministry and was going to grad school for it; hence, the direct deal with God). I did not worry about the cosmic questions at that point: did God do this? Did He allow it? Could he have stopped it? I just simply said it; I was certain. (Decisiveness in crisis is key).
The one thing that is certain about the diagnosis of MS, is that nothing is certain. The diagnosis carries a ton of weight, but actually predicts very, very little. But I was certain, that if I had another "episode," I was going home to momma. (And Dad. Who was also a saint. Maybe more later on his two week stay in a one bedroom apartment with his physically, emotionally unhinged 25 year old daughter. Definitely a saint.).
I think I should have been a little more specific with God, though. Because I said, "If THIS happens again." Too specific. But again, I get ahead of myself. That was September, October, November, etc. I'm still in July and August - with a lot of time on my hands.
Tuesday, May 31, 2011
7 Years Later: My, My, Look At Those Thighs
Early in my life I decided that I hated my thighs. I mean, really hated them. The problem was they were attached to me, yet I was at war with them...my own body. For 25 years I was at war with them.
The night after my first neurologist appointment a cease fire was called between my psyche and my legs in the shower. I felt the water trickle over my body on the left side - light, warm, and comforting; my right side - sharp, stinging and muted all at the same time; I was regaining some feeling. I was very aware of the contrast; I imagined what it would be to sense the left side on my right. I prayed for that kind of healing. And then I think the brain lesion had something say; I think God said, "You have hated these legs for way too long. They are yours. You want them. You really do." I really did. I grieved and felt free all at the same time.
This is how it is when your life is turned upside down in a moment. Any time of stillness brings up something unexpected; often overwhelming. Plus - I was on a boat load of steroids, anti-seizure meds, etc. We are whole people; that could have factored in.
The night after my first neurologist appointment a cease fire was called between my psyche and my legs in the shower. I felt the water trickle over my body on the left side - light, warm, and comforting; my right side - sharp, stinging and muted all at the same time; I was regaining some feeling. I was very aware of the contrast; I imagined what it would be to sense the left side on my right. I prayed for that kind of healing. And then I think the brain lesion had something say; I think God said, "You have hated these legs for way too long. They are yours. You want them. You really do." I really did. I grieved and felt free all at the same time.
This is how it is when your life is turned upside down in a moment. Any time of stillness brings up something unexpected; often overwhelming. Plus - I was on a boat load of steroids, anti-seizure meds, etc. We are whole people; that could have factored in.
Friday, May 27, 2011
7 Years Later: Hurry Up and Wait
Imagine how your lip feels when you go to the dentist. The numbest stage: thick, thick, thick, heavy. The phantom stage: "did I really just feel that twinge and tingle?" ...and so on...to the final part where you think: "Sometime in the next 5 minutes I will feel 'normal' again." That final stage is how I live with my right side now - 7 years later - I am thankful. And the sea-ship that my body feels like it is on has found much quieter waters. Most days, my imbalance is hardly noticeable and maybe even lulling. I often find myself swaying to keep up; I don't think others even see it.
I'm not even sure when my body arrived at this "baseline," this "new normal." It must have been sometime in the last 7 years...SEVEN, 7, seven years. That is a long time.
I am fast-forwarding too much as I write. I am. I want to HURRY UP. Get to the good stuff. The stuff about how I went through more and more hell, BUT that I learned so much about myself, life, God, others. That my story winds through misdiagnoses, surgery, diagnoses, undiagnoses (which isn't even a word).
But in reality; in real time; although I wanted to hurry up, and deeply believed in the good stuff on the other end, I had to, (and have to?) wait: uncertain, suffering, waiting. And wait some more...in a lot of waiting rooms.
I'm not even sure when my body arrived at this "baseline," this "new normal." It must have been sometime in the last 7 years...SEVEN, 7, seven years. That is a long time.
I am fast-forwarding too much as I write. I am. I want to HURRY UP. Get to the good stuff. The stuff about how I went through more and more hell, BUT that I learned so much about myself, life, God, others. That my story winds through misdiagnoses, surgery, diagnoses, undiagnoses (which isn't even a word).
But in reality; in real time; although I wanted to hurry up, and deeply believed in the good stuff on the other end, I had to, (and have to?) wait: uncertain, suffering, waiting. And wait some more...in a lot of waiting rooms.
Thursday, May 26, 2011
7 Years Later: Half Numb
I think my first tears of this journey came in the MRI machine: such a solitary, isolating experience. You lay there alone, prone, required to be completely still. Only the hammering sound of the machine to keep you company. There was nothing to distract me and my physical symptoms were suddenly more apparent. I talked to God; I did not plead, I mostly wondered. Something was definitely very wrong. The slow burn of a new reality settled in.
They found a white lesion through out my left corpus colosum: the "switchboard" of your brain; the means by which left brain controls the right side of your body and vice versa. And one in my left temporal lobe.
My right side (draw a vertical line down the center of my body - half my nose, half my trunk, my right leg) had lost its ability to sense. ("right side anesthesia" is the medical term; motor functioning intact, yet you need sensory input to achieve normal motor functioning). Dizziness and imbalance are tame terms to describe the added layer of misery.
Back in the ER, with my faithful friend and grandparents, the news was the "best that could be expected." "The good news is that you did not have a stroke and you do not have a brain tumor. But it does look like this is first episode of Multiple Sclerosis. You will need to see a neurologist right away to consider immediate treatment for this episode. People don't die from this; your life is not at risk, but you do need to see a neurologist right away."
My M.O. in crisis: think, act, feel. My brain was tired, the action for the day was over: I wept.
They found a white lesion through out my left corpus colosum: the "switchboard" of your brain; the means by which left brain controls the right side of your body and vice versa. And one in my left temporal lobe.
My right side (draw a vertical line down the center of my body - half my nose, half my trunk, my right leg) had lost its ability to sense. ("right side anesthesia" is the medical term; motor functioning intact, yet you need sensory input to achieve normal motor functioning). Dizziness and imbalance are tame terms to describe the added layer of misery.
Back in the ER, with my faithful friend and grandparents, the news was the "best that could be expected." "The good news is that you did not have a stroke and you do not have a brain tumor. But it does look like this is first episode of Multiple Sclerosis. You will need to see a neurologist right away to consider immediate treatment for this episode. People don't die from this; your life is not at risk, but you do need to see a neurologist right away."
My M.O. in crisis: think, act, feel. My brain was tired, the action for the day was over: I wept.
Sunday, May 22, 2011
7 Years Later: What a Day Can Bring
My story took a drastic and unexpected turn 7 years ago this July. They say it takes seven years to recover from a brain injury, and since I am nearing that mark, I figure it is time to start telling my story. Plus, I can hardly get by myself for more than two seconds without thinking about how to put words to this. this. ...story of mine.
So, to start, it is very strange thing to have an injury that no one can see. We live in a world that values what it can see. If you can see it; it is real. So, an "invisible" injury has so many difficulties without even naming the symptoms. "Well, you look good." "Well...ummm...thanks. ? ."
I went swimming on a Friday night. A full time grad student. A full time employee. I was training for a triathlon that was scheduled in a few months. I wasn't feeling great, but went anyways. What was a little dizziness and fatigue anyways? Stress? Inner ear? Swimming was low impact, so I picked that over running.
I went to bed that night satisfied. I had just gotten back from a week out east for a dear friends wedding and time with family. Work and school were good; my relationships were deepening; life was moving. I was 25; not bad for 25.
And so when I woke up that Saturday feeling even more off than I had for the last week, I didn't think too, too much about it. "Maybe I am just really worn out.?" And so I sat down to read some and journal a bit. The page was a little blurry as I read and it was hard to write, but again...worn out...tired? I felt calm, but the symptoms were slowly becoming undeniable as my grogginess wore off. "I think my right leg feels numb...and maybe my ear, cheek..."
And so I called: my friend, "I'm taking you to the hospital;" my mom, "Please go to the hospital."
Before I knew it I was in an MRI machine.
So, to start, it is very strange thing to have an injury that no one can see. We live in a world that values what it can see. If you can see it; it is real. So, an "invisible" injury has so many difficulties without even naming the symptoms. "Well, you look good." "Well...ummm...thanks. ? ."
I went swimming on a Friday night. A full time grad student. A full time employee. I was training for a triathlon that was scheduled in a few months. I wasn't feeling great, but went anyways. What was a little dizziness and fatigue anyways? Stress? Inner ear? Swimming was low impact, so I picked that over running.
I went to bed that night satisfied. I had just gotten back from a week out east for a dear friends wedding and time with family. Work and school were good; my relationships were deepening; life was moving. I was 25; not bad for 25.
And so when I woke up that Saturday feeling even more off than I had for the last week, I didn't think too, too much about it. "Maybe I am just really worn out.?" And so I sat down to read some and journal a bit. The page was a little blurry as I read and it was hard to write, but again...worn out...tired? I felt calm, but the symptoms were slowly becoming undeniable as my grogginess wore off. "I think my right leg feels numb...and maybe my ear, cheek..."
And so I called: my friend, "I'm taking you to the hospital;" my mom, "Please go to the hospital."
Before I knew it I was in an MRI machine.
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