This post was started because of the idea that my wife, Deb, is on a mission to walk again, almost 17 years after a car accident rendered her paralyzed from the solar plexus down. I have shared some stories and history in order to establish why my wife's story is even blog-worthy. But I guess I can tell a tidbit of what's going on now to get to the goal of walking.
Obviously neither of us has ever been through the process of getting legs that have not been used on purpose in 17 years to function again. And given that the doctors have decided that its a lost cause, there isn't a lot of professional help insurance or government programs jumping in our direction. The biggest practical help has been the massotherapist, John, who showed us how Deb's leg muscles can be stimulated into responding to outside force. She has actually moved her foot on a couple of occasions, but nothing that has been sustained.
We have thought about this for ages: what can we do besides wishing and hoping that could give Deb real progress toward walking. Well one thing we've tried lately is encouraging (heck, anything that keeps us believing in this cause is encouraging, actually); I have been standing Deb up in the morning.
I always saw the melodramatic TV shows where a person who couldn't use their legs would be forced to drag themselves along a set of parallel bars for countless minutes while their "friend" shouted at them and told them not to give up, either pumping them up or pissing them off enough to drag their lifeless limbs just one more inch. Two weeks later, they're skipping out of the rehab center, thanking Dr. Welby for all he's done for them.
Sorry, I wish I could say that's how its going, but its not. What is happening is that, instead of picking Deb up every morning and placing her in her wheelchair, I grab her around the waist and hoist her up to her feet. At first I thought it was just a good way to give her some creative visualization, seeing herself in the mirror in all her 5' 11" glory, feeding her vision and her passion to walk again. This it did, but what we also found was that her legs actually tried to cooperate! I was nervous that her legs would either spasm and kick, or buckle at the slightest pressure. Neither was the case. Her legs would actually straighten for a moment (as they do when they spasm sometimes) and I found they could actually support maybe 10% of her weight (my uneducated guestimate) as she stood and pivoted into her chair! That first time we did it, we were so overjoyed we cried. We looked at each other as if for reassurance that the slight support her legs gave was actually real, not wishful thinking. It is real, her legs actually straighten and stiffen in response to being lifted up and share in holding her up. Its been about of week of this, and while that is way too soon to expect further progress, it definitely reinforces the idea that we are on to something.
Stay tuned folks...something wonderful is happening!!!
Friday, October 13, 2006
Thursday, October 12, 2006
The Power of Thought
My apologies for taking so long to continue the odyssey, there has been a lot going on in our lives, including starting the process of buying a new home. Even that process adds to the awe and inspiration that my Deb manifests. We have been talking about moving for quite some time, but it was always just talk. Deb decides to rejuvenate her positive thinking skills after a watching a video called "The Secret" that talks about the Law of Attraction whereby we attract everything in our lives to ourselves based on our thinking. Anyway, to make a long story short, she decides to write down the house that we want. She types on a piece of paper, "I have a four bedroom ranch house with hardwood floors, a finished basement and an attached garage." (Note that she did not request that it be wheelchair accessible.) A couple of weeks later, she tells the father of a friend of hers, who happens to be a real estate broker, that she's looking for a four-bedroom ranch with hardwood floors, a basement and attached garage.
Now I'm thinking, "There is no way we find exactly that anywhere near our price range". A week later, Charles, the real estate broker calls and wants us to look at a house. In a nice neighborhood, four bedrooms. I decide to humor my wife and go along. We get there and the first thing I see is the attached garage. Ok, so far so good...but I'm just here to look. We get Deborah inside and, low and behold, hardwood floors! Joe says, "...and you have to see the basement. Its finished, with another bathroom and kitchen down there." WOW! It was like Jeanie had said, "Yes, Master!" and blinked her eyes, peeling the house right off the paper slapped it in the middle of this nice middle-class neighborhood.
On the refrigerator was a fragment of the famous poem, Desiderata by Max Ehrmann, which read:
Now I'm thinking, "There is no way we find exactly that anywhere near our price range". A week later, Charles, the real estate broker calls and wants us to look at a house. In a nice neighborhood, four bedrooms. I decide to humor my wife and go along. We get there and the first thing I see is the attached garage. Ok, so far so good...but I'm just here to look. We get Deborah inside and, low and behold, hardwood floors! Joe says, "...and you have to see the basement. Its finished, with another bathroom and kitchen down there." WOW! It was like Jeanie had said, "Yes, Master!" and blinked her eyes, peeling the house right off the paper slapped it in the middle of this nice middle-class neighborhood.
On the refrigerator was a fragment of the famous poem, Desiderata by Max Ehrmann, which read:
And whether or not it is clear to you,
no doubt the universe is unfolding as it should.
Therefore, be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham,
drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.
no doubt the universe is unfolding as it should.
Therefore, be at peace with God,
whatever you conceive Him to be.
And whatever your labors and aspirations,
in the noisy confusion of life,
keep peace in your soul.
With all its sham,
drudgery, and broken dreams,
it is still a beautiful world.
Be cheerful.
Strive to be happy.
If ever there was a sign, the line, "No doubt the Universe is unfolding as it should" would definitely be one. I was still in knots about the affordability. Charles said we were already preapproved by his financing partner. Then he told me the asking price, which was about 20% less than what I had found for comparable houses in comparable neighborhoods, and that included the improvements that the owner was making! There was just one last hurdle ("here you go, Universe, let me see you handle this!") that my overly-analytical mind was throwing out there: the house was not wheelchair-accessible. I couldn't buy a new home that would be a jail for my Sweetie. Even the current owner jokingly asked why she hadn't put "wheelchair-accessible" on her wish-list. Deb replied that she doesn't like to focus on her disability, but she was sure everything would be ok.
As it turns out, when we went back to see the house a second time, the contractor doing the upgrades for the owner is well-versed in ADA building regulations and had some excellent ideas to make the house comfortable for my wife. He really knew his stuff and being the one making current upgrades, could easily incorporate the designs into what was already being done. Another "WOW!"
Monday, September 18, 2006
Oh, To Be Drug Free!
Deb decided that she no longer wanted to be dependent on drugs. Sure, the drugs were prescribed by doctors, refilled at will at any pharmacy and came in neat little identifiable bottles with the name and dosage instructions. But it was still drugs! Believe it or not, one of the doctors told Deb the first time she was in the hospital that the key to controlling the spasms that came along with her condition was stretching and range of motion. Yet they proceeded to prescribe several medications for it over the years.
There were drugs for pain, drugs for spasms, drugs for bladder control, drugs for constipation caused by drugs for pain and drugs for depression for having to take all those confounded drugs! Deb had enough when it was found that a prescription she had been given for acne was linked to several suicides. That was it.
She had always been both encouraged and intimidated by the time she had gone cold turkey with the pregnancy of my son. Encouraged by the fact that she had survived nine months without any prescription medication, intimidated because of the physical suffering she had endured. Now she was homeschooling and working from home and didn't want to risk bed rest and debilitation that her withdrawal had caused during her pregnancy.
She decided to investigate every natural remedy we could afford, and a couple we couldn't. There was massage therapy, reflexology, herbalists, a doctor of nutripathy, aroma therapy and prayer (there had alway been that, but now maybe a little more specific to the task at hand.) We built up a fair amount of debt because, of course, none of this is covered by insurance, even though it might prevent an awful lot of 'covered' medical bills. However, we had to narrow down her choices to the most beneficial.
Most of these were helpful to some extent, except for one herbalist who felt her wrist and said that her nervous system was dead. [Give me a break, he was scared to deal with anything more than arthritis!] Fortunately, there was Susan Deng. Susan operates a very popular, though very quaint herbalist shop that is as full of charm as it is herbs, teas, roots and supplements. She very professional, in a Western sort of way, while maintaining the quiet, spiritual demeanor of her native China. She was actually a neurosurgeon in China, but did not get certification here in the states. In the "greater good of the universe" sense, that was probably a good thing!
Susan prescribed for my wife an herbal potion that was primarily to help her get over her withdrawal from medication and to relax her muscles. It was a combination of at least 15 exotic looking ingredients (one looked like snake skin, but was actually some sort of bark). Her assistant would take about 1/2 hour measuring out the recipe using a delicate hand-held scale. When boiled, the concoction smelled awful and filled the house with a pungent smell reminiscent of crushed weeds pulled from a garden. The drink actually worked well in controlling my wife's spasms and other assorted aches and pains.
Deb has narrowed her focus of treatments to Susan Deng's treatments (she gets varying mixtures for a variety of internal needs) and her own use of herbal extracts that she has learned from books like Back to Eden and 101 Natural Cures. I've become her massage therapist, working her over like kneaded dough, (she needs deep tissue stimulation, not just relaxation).
Anyway, its been over a year since Deb has taken any medication stronger than Ibuprofen and that's few and far between. No more prescription bottles all over, no more remembering what to take when or what's good for what and best of all, no more side effects. Nothing is making her hair fall out, her skin break out, her digestive system to stop, sleeplessness, drowsiness dizziness, nausea, fatigue or paranoia. She says that even what pain she feels lets her know that she is alive in places she thought she had lost forever. YEAH!!!
There were drugs for pain, drugs for spasms, drugs for bladder control, drugs for constipation caused by drugs for pain and drugs for depression for having to take all those confounded drugs! Deb had enough when it was found that a prescription she had been given for acne was linked to several suicides. That was it.
She had always been both encouraged and intimidated by the time she had gone cold turkey with the pregnancy of my son. Encouraged by the fact that she had survived nine months without any prescription medication, intimidated because of the physical suffering she had endured. Now she was homeschooling and working from home and didn't want to risk bed rest and debilitation that her withdrawal had caused during her pregnancy.
She decided to investigate every natural remedy we could afford, and a couple we couldn't. There was massage therapy, reflexology, herbalists, a doctor of nutripathy, aroma therapy and prayer (there had alway been that, but now maybe a little more specific to the task at hand.) We built up a fair amount of debt because, of course, none of this is covered by insurance, even though it might prevent an awful lot of 'covered' medical bills. However, we had to narrow down her choices to the most beneficial.
Most of these were helpful to some extent, except for one herbalist who felt her wrist and said that her nervous system was dead. [Give me a break, he was scared to deal with anything more than arthritis!] Fortunately, there was Susan Deng. Susan operates a very popular, though very quaint herbalist shop that is as full of charm as it is herbs, teas, roots and supplements. She very professional, in a Western sort of way, while maintaining the quiet, spiritual demeanor of her native China. She was actually a neurosurgeon in China, but did not get certification here in the states. In the "greater good of the universe" sense, that was probably a good thing!
Susan prescribed for my wife an herbal potion that was primarily to help her get over her withdrawal from medication and to relax her muscles. It was a combination of at least 15 exotic looking ingredients (one looked like snake skin, but was actually some sort of bark). Her assistant would take about 1/2 hour measuring out the recipe using a delicate hand-held scale. When boiled, the concoction smelled awful and filled the house with a pungent smell reminiscent of crushed weeds pulled from a garden. The drink actually worked well in controlling my wife's spasms and other assorted aches and pains.
Deb has narrowed her focus of treatments to Susan Deng's treatments (she gets varying mixtures for a variety of internal needs) and her own use of herbal extracts that she has learned from books like Back to Eden and 101 Natural Cures. I've become her massage therapist, working her over like kneaded dough, (she needs deep tissue stimulation, not just relaxation).
Anyway, its been over a year since Deb has taken any medication stronger than Ibuprofen and that's few and far between. No more prescription bottles all over, no more remembering what to take when or what's good for what and best of all, no more side effects. Nothing is making her hair fall out, her skin break out, her digestive system to stop, sleeplessness, drowsiness dizziness, nausea, fatigue or paranoia. She says that even what pain she feels lets her know that she is alive in places she thought she had lost forever. YEAH!!!
Wednesday, September 13, 2006
Pageant Winner
And the Winner Is...
I can honestly say I'm married to a pageant queen. Deb was crowned Miss Wheelchair Ohio 1997. Getting there was fairly easy. The pageant had been dormant for more than a dozen years. Deb came across information about it when looking for modeling leads on the Internet. She wrote to the national organization that hosts the Miss Wheelchair America Pageant, inquiring about how to start the pageant again in Ohio. She was told that all she had to do was submit an application for MWO to them. If there were other applicants, they would select someone from among them to participate nationally, unless there was enough interest to hold a state pageant. Out of her sense of fairness, Deb even went so far as to submit a classified ad to the Services For Independent Living Newsletter, advertising the pageant and the deadline for entry. Come the deadline, she was still the only applicant and was therefore awarded the Miss Wheelchair Ohio 1997 title by default. Like I said: easy. No big deal, right? Wrong! That was only the beginning of the story.
Taking It Seriously
The big deal was that she never treated it like a 'default' title but took the responsibilities of Miss Wheelchair Ohio being an advocate for the disabled very seriously. Not only that, but she had to raise money for her trip to Denver, CO for the national pageant AND the chosen title holder had the obligation of organizing a pageant for the following year. Now my hero went to work.
I thought she would raise money by asking friends or selling cookies or candy bars in her apartment building. I underestimated her. She was after bigger fish, contacting corporations for donations to her cause. She wrote to a Revco, a pharmacy later bought out by RiteAid because of the business they received from all the prescriptions she and her contemporaries used. She contacted a grocery chain, Rini-Rego, because they had the only supermarket near her wheelchair-accesible apartment building. GM was the one of the Big Three car makers that responded to her letters; she figured they made the customizable vans and minivans she and her friends used. I was amazed; who just writes letters to huge corporations, not even being sure who in particular to address and winds up getting checks back? In all she raised more than $5000 for her trip to Denver and for the pageant the following year to name her successor. That wasn't enough.
I can honestly say I'm married to a pageant queen. Deb was crowned Miss Wheelchair Ohio 1997. Getting there was fairly easy. The pageant had been dormant for more than a dozen years. Deb came across information about it when looking for modeling leads on the Internet. She wrote to the national organization that hosts the Miss Wheelchair America Pageant, inquiring about how to start the pageant again in Ohio. She was told that all she had to do was submit an application for MWO to them. If there were other applicants, they would select someone from among them to participate nationally, unless there was enough interest to hold a state pageant. Out of her sense of fairness, Deb even went so far as to submit a classified ad to the Services For Independent Living Newsletter, advertising the pageant and the deadline for entry. Come the deadline, she was still the only applicant and was therefore awarded the Miss Wheelchair Ohio 1997 title by default. Like I said: easy. No big deal, right? Wrong! That was only the beginning of the story.
Taking It Seriously
The big deal was that she never treated it like a 'default' title but took the responsibilities of Miss Wheelchair Ohio being an advocate for the disabled very seriously. Not only that, but she had to raise money for her trip to Denver, CO for the national pageant AND the chosen title holder had the obligation of organizing a pageant for the following year. Now my hero went to work.
I thought she would raise money by asking friends or selling cookies or candy bars in her apartment building. I underestimated her. She was after bigger fish, contacting corporations for donations to her cause. She wrote to a Revco, a pharmacy later bought out by RiteAid because of the business they received from all the prescriptions she and her contemporaries used. She contacted a grocery chain, Rini-Rego, because they had the only supermarket near her wheelchair-accesible apartment building. GM was the one of the Big Three car makers that responded to her letters; she figured they made the customizable vans and minivans she and her friends used. I was amazed; who just writes letters to huge corporations, not even being sure who in particular to address and winds up getting checks back? In all she raised more than $5000 for her trip to Denver and for the pageant the following year to name her successor. That wasn't enough.
An Advocate is Born
There was the advocacy issue. Again, she attacked full force. She contacted every television and radio station in the city. She was interviewed by at least four TV stations and featured in news stories. Jack Marshall on Channel 43 did a feature with her, Leon Bibb, then with a Sunday morning talk show on Channel 3, did a segment with her on his show. She did several radio interviews, including ones on WZAK and WCPU, the National Public Radio station. Always, the emphasis was not on herself, but on the disabled in general and the efforts to help them maintain dignity and participate fully in society. She always explained that the pageant was not about outward beauty (even though she is gorgeous, isn't she?) but about inward strength, overcoming adversity and blazing trails for others. She became a mini-celebrity and still seemed amazed that people recognized her from TV. "Why are they staring at me? ", she would ask. "They know you, Sweetie, people do watch the news. Just smile and wave..."
The Trip
Deb went to the Miss Wheelchair America Pageant in Denver that October and had the time of her life. She again took my teenage daughter along as I was unable to get away from work. She was pampered, made friends that lasted a lifetime and learned a lot about how her peers from around the country were triumphing over their own challenges. She didn't place in the top five in the pageant, but I'm sure she left and impression on everyone she met. She always does.
Deb did organize and produce a pageant the following year, that was held in the John S. Knight and hosted by a local anchorwoman, Romona Robinson. There were 13 contestants because this year, Deb recruited contestants, not just advertised.
Saturday, September 09, 2006
A Model of Persistence
In 1997, sometime after the birth of our son Malik, Deb decided to take on another challenge: she wanted to resume her once budding modeling career. Before the accident, she had done a couple of runway modeling jobs in Cleveland and New York. So, when she found out that most of the people appearing in wheelchairs in advertisements were not actually disabled, she enlisted the aid my brother Larry (an amateur art photographer) to create a portfolio and marched down to David & Lee modeling agency and insisted on an interview. They liked her and gave her a contract. Now, while it didn't become a full-time endeavor, Deb did enjoy a couple of interesting shoots. She was flown, along with my then 14 year-old daughter, to one of the Florida keys for a 3 day shoot. She also did a local magazine ad for Metro General Hospital, the same hospital where she woke up after her accident and did her grueling rehabilitation. It was another dream come true and another chance to show that she was not defined by her disability; that she relied on her wheelchair but was not confined by it. Stay tuned for more achievements on Deb's journey toward her Next Step.
Wednesday, September 06, 2006
Birth of a Son
I think I learned how truly tough my Deb is when we found out that she was pregnant a couple of years after we'd been together. At the time, she was taking Diazepam (generic Valium) for spasms four times a day, Ditropan for bladder control 3 times daily and Macrodantin 3 times for whatever its was supposed to be doing. As soon as the doctor told her she was pregnant, she decided to go cold turkey from everything, even thought the doctor suggested gradual reduction of dosages. She asked, "Are you going to guarantee me that these medications will have no effect on my baby? Are you going to be there to help take care of whatever birth defect they might cause? " Try as they might, obstetrician and spinal chord specialist alike, could not convince Deb to take medication during her pregnancy.
Going Cold Turkey
Now bless her heart, Deb was quite naive in her decision. Although she had seen "Lady Sings the Blues" where Diana Ross portrayed a strung out Billie Holliday going through sweats and shakes when she needed her fix, she never made a connection to what she was facing. "I'm just taking a few prescriptions that the doctor gave me, what harm could there be, other than a little discomfort, which I am quite willing to suffer for the health of my baby" She had no idea of the potency of Valium or her bodies craving for it as she went through withdrawal. She suffered fits of sweating, shaking, chills and aching muscles beyond what her injury could account for. Even after I convinced her that it was withdrawal she was suffering from (just like Lady Day), she thought it would quickly be over in a couple of days. Wrong again. She had to endure these symptoms for the two trimesters of her pregnancy and then still deal with the untreated effects of her injury after they subsided. Her muscles would ache, her legs would spasm uncontrollably and her bladder wouldn't sit still for hardly a minute. She even had to go through a stint in the hospital when her blood pressure dropped dangerously low. But she handled it all with the goal in mind of delivering a healthy, drug-free child.
Educating the Professionals
Originally, I didn't think Deb was blazing that new of a trail, having a baby after a spinal chord injury. Apparently, it was my turn to be wrong. You have obstetricians, even very good ones, who could tell you all about the development of a child and what a healthy mother went through, but knew nothing next to nothing about spinal chord injury. Then, you have spinal injury specialist, who made fairly educated guesses about the effects of a spinal trauma (though they still don't know why Deb has 70% use of both her arms when she should be a quadriplegic based on where here injury is) - but for the life of them couldn't give you the ins and outs of a high-risk pregnancy if their life depended on it. Thank goodness Al Gore had invented the Internet by 1995! Deb would search and dig for any and all information she could scrape up (the Net was a lot less commercial back then, so the information was free). Some doctor would tell her that she would have to deliver by Caesarian section, since her muscles didn't work. Errrgh...wrong!!! She would hand him a stack of articles and anecdotes to that confirm the contrary, her involuntary muscles would do just fine. Some doctor would suggest bed rest for the last 3 months, since she wouldn't be able to discern the onset of labor ..."wrong again, Batman!" If she could feel gas (and she could), she could feel labor (3rd page of this 10-page article, Doc.) It went on like this for months until the doctors started posing their advice for my wife in the form of questions: Do you think you might want to try this vitamin, do you think this diet might be ok? I think they had learned not to mess with my sweetie.
Suffering Fools
Beyond the withdrawals and the doctors, Deb's patience was also stretched paper thin by many in the general public who couldn't imagine an expectant mother in a wheelchair. Men walking on the moon, microwave ovens, Ronald Reagan knowing nothing about Iran-Contra...all this they could believe. Woman in a wheelchair getting pregnant? "How could that happen?", a couple people were bold enough to ask. Deb, with a completely straight face would start, in her best "Maria from Sesame Street" imitation: "Well, when the Mommy bird and Daddy bird decide to make a baby... " I would be rolling as the offended target marched away. Deb was accustomed to handling such personal snooping by strangers with her own sense of deadpan humor. The classic, "How long have you been in the wheelchair?", was always answered with, "Oh, since about 9 o'clock this morning. " Shock and dismay would contort their face until they realized their leg was being pulled. Maybe the most memorable incident of these rolling pregnancy faux pas was when Deb went for a checkup with the obstetrician at Metro General Hospital. The department secretary promptly inform Deb as she wheeled through the door, "Oh, honey, the Spinal Chord Clinic is on the 7th floor" . To which Deb promptly replied, "Been there, done that, but I hear they know a little more about pregnant women down here. I hope they're right"
Labor, Finally
When I arrived in the delivery room, I was greeted by at least a couple doctors and a several nurses who were surrounding my wife and she pleaded with them to get out of the room and leave her alone. They immediately turned to me to convince me of the expediency of giving my wife an epidural and being prepared to do a Caesarian. They spoke to me as if she weren't even in the room. "She really need this...she should get that...it will make her blah, blah, blah". All the while she yelling now to get them out of her sight before she starts to throw things because her ears and her arms work quite well. I of course deferred to my wife's decision and wisely interjected a few, "isn't that right, Sweeties" into my replies. There were more intense moments, highlighted by Deb's labor pains being translated through her injured spine as intense, pounding headaches. Her blood pressure was dangerously elevated, one of the risks the doctors hoped to avoid with an epidural. However, after about six hours of drama and screams and sweat, my son Malik unceremoniously plopped into the world, opened his eyes and looked around as if wondering why his sleep had been disturbed. He was a very healthy 6 lb., 11 oz. bundle of wonder who had just begun to be the inspiration of two very happy parents.
The Inquisition!
Before being released from the hospital, Human Services had to be summoned, and Deb and I (mostly Deb) had to be subjected to a battery of inquiries and drills to make sure that Malik would be "safe" in a home with a paraplegic mother. Most of it was inane because the LSWs had no real clue what life was like for Deb and therefore didn't know the real challenges. "What will you do if he gets diarrhea?" "How will you feed him solid foods?" They even made her demonstrate that she could change his diaper and bath him. I was outraged. All this while a 16 year-old teenage mother in the next bed, whose baby was in ICU because she smoked throughout her pregnancy, was heard to vow not to let a baby slow her down and she was still going to go out clubbing every weekend! Arggh!
The Rewards
Though we were a blended family, each of us having been married before, with 3 pre-teen boys and a teenage daughter between us; the challenge of Malik's birth and upbringing (he's 10 as of this writing) has helped bring a new appreciation of parenthood to both Deb and myself. He is home schooled now (more on that later) and is taking advantage of parents who have been through it all before.
Going Cold Turkey
Now bless her heart, Deb was quite naive in her decision. Although she had seen "Lady Sings the Blues" where Diana Ross portrayed a strung out Billie Holliday going through sweats and shakes when she needed her fix, she never made a connection to what she was facing. "I'm just taking a few prescriptions that the doctor gave me, what harm could there be, other than a little discomfort, which I am quite willing to suffer for the health of my baby" She had no idea of the potency of Valium or her bodies craving for it as she went through withdrawal. She suffered fits of sweating, shaking, chills and aching muscles beyond what her injury could account for. Even after I convinced her that it was withdrawal she was suffering from (just like Lady Day), she thought it would quickly be over in a couple of days. Wrong again. She had to endure these symptoms for the two trimesters of her pregnancy and then still deal with the untreated effects of her injury after they subsided. Her muscles would ache, her legs would spasm uncontrollably and her bladder wouldn't sit still for hardly a minute. She even had to go through a stint in the hospital when her blood pressure dropped dangerously low. But she handled it all with the goal in mind of delivering a healthy, drug-free child.
Educating the Professionals
Originally, I didn't think Deb was blazing that new of a trail, having a baby after a spinal chord injury. Apparently, it was my turn to be wrong. You have obstetricians, even very good ones, who could tell you all about the development of a child and what a healthy mother went through, but knew nothing next to nothing about spinal chord injury. Then, you have spinal injury specialist, who made fairly educated guesses about the effects of a spinal trauma (though they still don't know why Deb has 70% use of both her arms when she should be a quadriplegic based on where here injury is) - but for the life of them couldn't give you the ins and outs of a high-risk pregnancy if their life depended on it. Thank goodness Al Gore had invented the Internet by 1995! Deb would search and dig for any and all information she could scrape up (the Net was a lot less commercial back then, so the information was free). Some doctor would tell her that she would have to deliver by Caesarian section, since her muscles didn't work. Errrgh...wrong!!! She would hand him a stack of articles and anecdotes to that confirm the contrary, her involuntary muscles would do just fine. Some doctor would suggest bed rest for the last 3 months, since she wouldn't be able to discern the onset of labor ..."wrong again, Batman!" If she could feel gas (and she could), she could feel labor (3rd page of this 10-page article, Doc.) It went on like this for months until the doctors started posing their advice for my wife in the form of questions: Do you think you might want to try this vitamin, do you think this diet might be ok? I think they had learned not to mess with my sweetie.
Suffering Fools
Beyond the withdrawals and the doctors, Deb's patience was also stretched paper thin by many in the general public who couldn't imagine an expectant mother in a wheelchair. Men walking on the moon, microwave ovens, Ronald Reagan knowing nothing about Iran-Contra...all this they could believe. Woman in a wheelchair getting pregnant? "How could that happen?", a couple people were bold enough to ask. Deb, with a completely straight face would start, in her best "Maria from Sesame Street" imitation: "Well, when the Mommy bird and Daddy bird decide to make a baby... " I would be rolling as the offended target marched away. Deb was accustomed to handling such personal snooping by strangers with her own sense of deadpan humor. The classic, "How long have you been in the wheelchair?", was always answered with, "Oh, since about 9 o'clock this morning. " Shock and dismay would contort their face until they realized their leg was being pulled. Maybe the most memorable incident of these rolling pregnancy faux pas was when Deb went for a checkup with the obstetrician at Metro General Hospital. The department secretary promptly inform Deb as she wheeled through the door, "Oh, honey, the Spinal Chord Clinic is on the 7th floor" . To which Deb promptly replied, "Been there, done that, but I hear they know a little more about pregnant women down here. I hope they're right"
Labor, Finally
When I arrived in the delivery room, I was greeted by at least a couple doctors and a several nurses who were surrounding my wife and she pleaded with them to get out of the room and leave her alone. They immediately turned to me to convince me of the expediency of giving my wife an epidural and being prepared to do a Caesarian. They spoke to me as if she weren't even in the room. "She really need this...she should get that...it will make her blah, blah, blah". All the while she yelling now to get them out of her sight before she starts to throw things because her ears and her arms work quite well. I of course deferred to my wife's decision and wisely interjected a few, "isn't that right, Sweeties" into my replies. There were more intense moments, highlighted by Deb's labor pains being translated through her injured spine as intense, pounding headaches. Her blood pressure was dangerously elevated, one of the risks the doctors hoped to avoid with an epidural. However, after about six hours of drama and screams and sweat, my son Malik unceremoniously plopped into the world, opened his eyes and looked around as if wondering why his sleep had been disturbed. He was a very healthy 6 lb., 11 oz. bundle of wonder who had just begun to be the inspiration of two very happy parents.
The Inquisition!
Before being released from the hospital, Human Services had to be summoned, and Deb and I (mostly Deb) had to be subjected to a battery of inquiries and drills to make sure that Malik would be "safe" in a home with a paraplegic mother. Most of it was inane because the LSWs had no real clue what life was like for Deb and therefore didn't know the real challenges. "What will you do if he gets diarrhea?" "How will you feed him solid foods?" They even made her demonstrate that she could change his diaper and bath him. I was outraged. All this while a 16 year-old teenage mother in the next bed, whose baby was in ICU because she smoked throughout her pregnancy, was heard to vow not to let a baby slow her down and she was still going to go out clubbing every weekend! Arggh!
The Rewards
Though we were a blended family, each of us having been married before, with 3 pre-teen boys and a teenage daughter between us; the challenge of Malik's birth and upbringing (he's 10 as of this writing) has helped bring a new appreciation of parenthood to both Deb and myself. He is home schooled now (more on that later) and is taking advantage of parents who have been through it all before.
Monday, September 04, 2006
The Start of a Long Journey
I wanted to create this blog to chronicle the incredible and heartfelt journey that my wife, Deb, and I are about to take. Deb has not walked since January 1990 when she was involved in a car accident that left her with a spinal chord injury. Her life to this point has been a trek through all kinds of trials with personal development and spiritual and emotional growth and wondrous discoveries that I will be sharing with you in this blog. The impetus for starting this blog now is the renewed hope that she is once again going to regain control of the muscles below her solar plexus and begin to walk again. I wanted to have a place to record and share the highs and joys and the obstacles to be overcome as we embark on this endeavor together.
Let me give a little background. I met Deb in January 1993 while we were both in college. At the time, she told me about her accident in 1990, that she had been in the army in Virginia when she, her boyfriend and 2 sisters were accosted at a club and subsequently chased by a car as her boyfriend sped away. The driver lost control going around 80 m.p.h. and ran into a huge tree. I've seen pictures and its amazing anyone walked away. Surprisingly, other than Deb, the only serious injury was a broken leg that one of her sisters suffered. Deb, however, was another story.
Deb:
"I remember waking up in the Metro General Hospital not
knowing where I was or why I was there. I tried getting out of the bed and
realized that I couldn't move. I tried talking and nothing came out.
It felt like I was screaming at the nurse to explain what was going on, but they paid no attention."
I am not going to go into the details, but the gist of it was that her spinal chord was crushed, C7-C8. Sixth months of rehabilitation was needed for her to learn to eat, drink, talk and use her left hand. But she needed a wheelchair to get around. She was told by her doctors that the injury was "complete" and that she would never walk again.
Deb would never let that be the end of her story. At the time that I met her, she was going to school full time, raising her 7 year-old son, Edward, living in her wheelchair-accessible apartment. She believed that there was no reason in the world not to pursue all the goals she had in life before her accident and especially wanted to her son every opportunity in the world. She celebrates every January 5 (the date of the accident) as her "2nd Birthday" because she had been given the chance to start life anew. Next time, I'll tell about our meeting and more amazing things she has done with her life.
Subscribe to:
Posts (Atom)