Life is a series of losses.
Since her aneurysm, Jan has experienced a series of hard losses. Consider what she lost: her speech, full movement and sensation on her right side, previous to the aneurysm she lost 80% of vision on her right eye, she lost her job, her driver's license, her independence, her ability to remember short term happenings, her ability to teach, her ability to read fast, her ability to write with clarity, but most poignantly, she lost most of her friends.
To the struggle to recover more speech and movement, she finds herself struggling with loneliness and isolation.
Some days, she looks and feels as someone who has been condemned to solitary confinement for months or years. She craves company, but few people are available to giver her time. She can't remember to call and make appointments, and everyone seems too busy to call her.
With a few exceptions, she suffers the loss of her many friends.
On the bright side, she has been experimenting with life without medications. It's been almost three months since she stopped taking medications for seizure control. Right now she is flying solo.
Given that in the past she had seizures every three months, and that the first part of October is about the time when the cycle is complete, she is anxiously waiting to see if there will be a seizure or if she has somehow been able to overcome the seizures. She believes this is a stage, that the seizures and the aphasia will somehow disappear.
So, to the loss of friends, she has freedom from drugs.
Life seems to be also full of gains.
FC
Sunday, September 28, 2008
Friday, September 19, 2008
The milestones
May 2005 Jan and I met at Linda's birthday party hosted by Joy.
September 2005. We had the most incredible wedding in the company of the most incredible people: friends and relatives.
February 11, 2006. An aneurysm, that probably Jan had since birth, ruptured in the left side of her brain. In two operations within two days, she lost the area that controls speech, math, problem solving skills and the movement on the right side of her body, as well as some short term memory.
March-May, 2006. She has to start from square one: wearing diapers, eating baby food, unable to walk or talk. In four months she is walking without any mechanical help and regains about half of her speech ability. She is diagnosed as having mild to medium aphasia and right neglect.
May 2006, the plastic surgeon puts back the left flap bones in Jan's skull without realizing that they are dead after more than 3 months in the freezer. Jan has the first seizure hours after the surgery and starts antiseizure medication, which reduces her speech, comprehension and energy levels. Jan completes rehab therapies, the hospital decides that she is too well to stay any longer as an in-patient.
June 2006, Jan comes back home. She continues to work hard on her speech, can walk wobbling, can eat by herseld solid food, and weights 112 pounds. Continues as an out-patient.
November 2006, Jan sports a big dent on the left of her head. The flap bones have been reabsorved by her body. She starts riding her bike a bit unsteadily and refuses to ruin her hairdo with a helmet.
March 2007, Jan continues to improve in her language skills and mobility. Aphasia is still noticeable, she can understand more. She is swimming and more mobile. Struggles with the side effects of anti-seizure medication, she is on number 4 or 5. By this time we noticed that the seizures come once every three or four months.
June 2007, Jan ends in the hospital for a week because of side effects of the medications. She has been receiving NUCCA, a special physiotherapy from a chiropractor. She also continues with a special treatment of glyconutrients.
September 2007. Plastic surgery to correct Jan's missing flaps. The surgeon puts a hard mesh made out of polymers to replace the lost bones. Jan's head is back to a nice round shape, however, the surgery leaves a dent where the muscle on her left temple atrophied.
October 2007 to February 2008, She continues to improve in her aphasia, her conversatins are clearer and her energy level is higher. She starts treatment with an accupuncturist from China.
March 2008 to date, she is seen by a female neurologyst who orders an MRI but the radiology dept at the hospital refuses to do it because Jan has a clip in her brain. We ask the neurosurgeon to send a description of the clip and a statement that it is safe for Jan to have an MRI. The radiology department in the other hospital still declines the service requested by their own neurologist! Months later Jan has the MRI in the first hospital...
Latetly she feels tired and unsteady. It's almost three months since she stopped altogether the medications after a failed attempt with number 12. Her speech continues to advance. She reports a quantum improvement since she stopped her medications.
After and has a
September 2005. We had the most incredible wedding in the company of the most incredible people: friends and relatives.
February 11, 2006. An aneurysm, that probably Jan had since birth, ruptured in the left side of her brain. In two operations within two days, she lost the area that controls speech, math, problem solving skills and the movement on the right side of her body, as well as some short term memory.
March-May, 2006. She has to start from square one: wearing diapers, eating baby food, unable to walk or talk. In four months she is walking without any mechanical help and regains about half of her speech ability. She is diagnosed as having mild to medium aphasia and right neglect.
May 2006, the plastic surgeon puts back the left flap bones in Jan's skull without realizing that they are dead after more than 3 months in the freezer. Jan has the first seizure hours after the surgery and starts antiseizure medication, which reduces her speech, comprehension and energy levels. Jan completes rehab therapies, the hospital decides that she is too well to stay any longer as an in-patient.
June 2006, Jan comes back home. She continues to work hard on her speech, can walk wobbling, can eat by herseld solid food, and weights 112 pounds. Continues as an out-patient.
November 2006, Jan sports a big dent on the left of her head. The flap bones have been reabsorved by her body. She starts riding her bike a bit unsteadily and refuses to ruin her hairdo with a helmet.
March 2007, Jan continues to improve in her language skills and mobility. Aphasia is still noticeable, she can understand more. She is swimming and more mobile. Struggles with the side effects of anti-seizure medication, she is on number 4 or 5. By this time we noticed that the seizures come once every three or four months.
June 2007, Jan ends in the hospital for a week because of side effects of the medications. She has been receiving NUCCA, a special physiotherapy from a chiropractor. She also continues with a special treatment of glyconutrients.
September 2007. Plastic surgery to correct Jan's missing flaps. The surgeon puts a hard mesh made out of polymers to replace the lost bones. Jan's head is back to a nice round shape, however, the surgery leaves a dent where the muscle on her left temple atrophied.
October 2007 to February 2008, She continues to improve in her aphasia, her conversatins are clearer and her energy level is higher. She starts treatment with an accupuncturist from China.
March 2008 to date, she is seen by a female neurologyst who orders an MRI but the radiology dept at the hospital refuses to do it because Jan has a clip in her brain. We ask the neurosurgeon to send a description of the clip and a statement that it is safe for Jan to have an MRI. The radiology department in the other hospital still declines the service requested by their own neurologist! Months later Jan has the MRI in the first hospital...
Latetly she feels tired and unsteady. It's almost three months since she stopped altogether the medications after a failed attempt with number 12. Her speech continues to advance. She reports a quantum improvement since she stopped her medications.
After and has a
Saturday, September 13, 2008
Worth the wait
This is a blog about me. It is about what I thought Jan was going through during her ordeal.
In reality, I don't have the slightest idea of what it is to be unable to move half of my body, or be on constant pain, or not to have 20% of my brain, or be unable to express my ideas in simple words , or be the object of curiosity, interest, love and neglect, all at the same time.
No. I could not even start imagining what it is to go through what Jan has gone through. She often reminds me of this. So, I have no claim to be able to report about what goes on inside of Jan, or how she looks at the world from inside her broken body.
This blog was in many occasions the only way I had to express my feelings, so I would not burst in desperation and hopelessness. But this isn't an apology. We both are the survivors of an incredible journey of blood, pain, dark days, hope hanging by a thread, that I wish no one else would have to experience. It is also about our amazing capacity for love that can only be uncovered under critical circumstances. I wish we could just love and be loved without the pain... but we all know that there is no love without it share of pain...
I am a survivor. My injury was emotional. The woman I chose to love was broadsided by her own blood. She was comatose, between life and death; but she didn't let go. She survived. Then, she had to start from square one.
I had been married to the woman for four months. I had courted her for four months. I didn't know her well, and yet, the moment she went into the ambulance, I knew we had to go though this time together and stay together.
So, I stand here, almost three years after our wedding, asking myself what is normal? How does it feel to be married to a normal person? Am I normal? What is normality anyway?Jan is as normal (with a few words less) as anyone else. I am beaten up, a post-traumatic survivor, as normal as anyone else. We both laugh, cry, fight with each other and then embrace and comfort each other, like any other couple.
She would've liked the path to have been shorter. She would like to be already there. But she has to wait. Brain time is not the same as our time. Hers is working all the time, fixing, patching, moving, re-programming, learning at its own pace.
I would've liked the path to have been really short, only a few hours or days, perhaps. I would like to enjoy life at its fullest with my wife. But I have to wait for her. That is the path.
I empathize with Jan. I wish I could share some of her physical pain, lend her some words to ease her frustration, give her my leg so she culd run wherever she wants. But on a clear day, I know that I can only live and speak from what I am. And what I am now is a man who knows that Jan is worth the wait.
FC
In reality, I don't have the slightest idea of what it is to be unable to move half of my body, or be on constant pain, or not to have 20% of my brain, or be unable to express my ideas in simple words , or be the object of curiosity, interest, love and neglect, all at the same time.
No. I could not even start imagining what it is to go through what Jan has gone through. She often reminds me of this. So, I have no claim to be able to report about what goes on inside of Jan, or how she looks at the world from inside her broken body.
This blog was in many occasions the only way I had to express my feelings, so I would not burst in desperation and hopelessness. But this isn't an apology. We both are the survivors of an incredible journey of blood, pain, dark days, hope hanging by a thread, that I wish no one else would have to experience. It is also about our amazing capacity for love that can only be uncovered under critical circumstances. I wish we could just love and be loved without the pain... but we all know that there is no love without it share of pain...
I am a survivor. My injury was emotional. The woman I chose to love was broadsided by her own blood. She was comatose, between life and death; but she didn't let go. She survived. Then, she had to start from square one.
I had been married to the woman for four months. I had courted her for four months. I didn't know her well, and yet, the moment she went into the ambulance, I knew we had to go though this time together and stay together.
So, I stand here, almost three years after our wedding, asking myself what is normal? How does it feel to be married to a normal person? Am I normal? What is normality anyway?Jan is as normal (with a few words less) as anyone else. I am beaten up, a post-traumatic survivor, as normal as anyone else. We both laugh, cry, fight with each other and then embrace and comfort each other, like any other couple.
She would've liked the path to have been shorter. She would like to be already there. But she has to wait. Brain time is not the same as our time. Hers is working all the time, fixing, patching, moving, re-programming, learning at its own pace.
I would've liked the path to have been really short, only a few hours or days, perhaps. I would like to enjoy life at its fullest with my wife. But I have to wait for her. That is the path.
I empathize with Jan. I wish I could share some of her physical pain, lend her some words to ease her frustration, give her my leg so she culd run wherever she wants. But on a clear day, I know that I can only live and speak from what I am. And what I am now is a man who knows that Jan is worth the wait.
FC
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