There was a period of time when I could not drive, could not cook, could not clean, could hardly walk, could not do my children's laundry...my body had become so depleted of cortisol that it was crashing and my blood pressure remained so low as to barely sustain life. Without a diagnosis, I did not have the medications necessary to treat this life-threatening condition. In fact, I went so long without diagnosis or treatment that my organs began to fail. Going from doctor to doctor did not help because they thought I appeared healthy and strong, but my vitals definitely showed multiple issues that continually remained charted as "chronic low blood pressure," and "fever of unknown origin," and "sodium deficiency," and "potassium deficiency." In those days, as my condition remained a mystery, my body functions deteriorated so far that I could barely move without losing consciousness. Then, I began to experience Code Blue situations. Of course, at the time, I did not know they were Code Blue moments, but I soon learned the awful truth of my situation.
I dreaded going to sleep because too many times I would awaken without the ability to breathe...my lungs would somehow be paralyzed and without air. I remember awakening in a panic after realizing I could not breathe, as if someone had control of a switch for air in the room and it had been flipped to "no air." I could not gasp a saving breath. My body would convulse in an attempt to force my lungs to start heaving in and out, yet nothing would happen. Somehow, I would manage to get to my feet or I would collapse on my knees at my bedside floor with my hands clawing at my throat as I went through terror magnified by the inability to yell for help. I could not breathe...How could I ask for help?
Needing help and not being able to ask for it is one of the most pitiful situations we can experience in life...if I had been teetering on a cliff edge, I would have felt better than gasping for air as my husband slept soundly. Sometimes, I would start pounding the bed to wake him up, other times, he woke me with a sense of urgency after he realized I had stopped breathing for an extended period of time. But, during those dark times of having air kept from me, I would often nearly reach the point of passing out and my burning lungs would suddenly come back to life, opening for a raspy gulp of air.
Unfortunately, as my body went into a constant state of Addisonian Crisis due to constant misdiagnoses, this became my nightly scene. Sometimes this would occur multiple times per night. Eventually, I became terrified to fall asleep because I knew my body would fall into a state of deep sleep and the combination slumber with serious illness of my adrenal system meant normal functions would no longer be sustainable. However, with nearly non-existent blood pressure and depleted cortisol, I often had to fight to stay conscious during daylight hours.
Finally, the diagnosis came, after another Code Blue experience while in the hospital. My monitored symptoms set off alarms at my side, on the floor, and prompted a booming voice over the cardio-floor intercom to send medical staff scurrying into my room. However, I immediately realized that this body experience was similar to those that I had been having at home for weeks, without medical intervention. I do not know how I pulled out of those codes so often on my own, but my body was obviously not ready to submit to full shut-down mode. The way I see it, during that awful time in my life, my body was sputtering.
Back home, after my diagnosis, I learned that my "recovery" process would be painstakingly long and with alternating good and bad days. Most often, I would need some kind of assistance. The disappointment at not being able to bounce back, as if I had just recovered from the common cold, had been devastating.
I still felt like jello very much of the time; my vision and reflexes were not yet reliable enough to do the simplest of things, such as driving my children to school. Thanks to several of my friends and my mother, my youngest would have daily rides to and from school. Stefie didn't have the option to take a bus because the school was approximately 5-6 blocks away. This presented us with a stressful dilemma during stormy weather or on days when she was dragging from the incredible stress at home. Since she was still in elementary school, it bothered me to my core that she did not have a mom available to take her to school and to pick her up. At the Junior High level, my oldest daughter, Heather, had a bus available every day. Her bus stopped at only three houses down from our own, so Heather had reliable rides to and from school during this volatile time of never knowing whether I would be home or in the hospital from day to day.
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| My eyes are closed, as was often the case for photos and my youngest, Stefie, also has very sensitive eyes that really NEED the courtesy countdown before the click! But, this picture is to show the approximate time-frame as the kids were close to this age when I became very ill with undiagnosed Addison's disease, for too long. |
My oldest daughter, Heather, was in Junior High, at a pivotal time in her life. The way I reached out to her during my physically weakest moments was to have her come into my room, to lay with me and just talk. We did talk...about school, projects, friends, boys and boys and boys. Still, she kept a careful, guarded eye on all that was happening, she did not trust her life to remain stable because she had seen things crumble too fast. Teenage girls are already in a rough spot when things are going great at home, a teenage girl is always in the middle of some personal crisis, they do not need to have a home-life disintegrating. Heather went through phases of rebellion at the world's mistreatment, but she discovered that her mother would still be her mother, whether in good health or in suffering health. She still had a mother; it did not take long for Heather to learn to handle the hardships with grace; she grew up fast while figuring out how to grab hold of a good moment and make it last.
As my auto-pilot was failing, my husband's was coming to life. Even though he moved through the day with exhausting numbness for so long, he held the family together when I could not do anything as simple as carry a feather duster. The main parts, he held together. For his kids, he morphed into a man who began to be present for his family in a different way. Even though my complete downturn didn't last for long periods of time, they caused enough upheaval to create major changes in our family dynamics.
For all of us, life changed.
My health struggles were powerful and they created a ripple effect reaching out to those closest to me. Surprisingly, those ripples would also impact outsiders who were remotely attached to our lives. I learned that every life creates a ripple effect.
One of my helpers during this time had been my best-friend. She would cook full four-course meals for my family. Kelly would come over and clean my house. During my days of being healthy, I usually walked around the house with a dust-rag in hand, things stayed clean, but when I became dependent, I could not even wipe the dust off the surfaces in my house. After I became very ill and mostly bed-ridden, I would see dust floating in the light beams filtering through my bedroom windows and those floating specks seemed to taunt me. Dusting the house...this chore had seemed so simple, it required minimal effort, even if it was boring and tedious, I always did a great job of keeping it done. But, lying in bed, unable to walk around with freewill means that the dust piles up. Day after day, the dust increased and reminded me that life was moving forward while I was forced to lay there and watch it whirl around me.
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| Me and my best-friend, Kelly. This photo was taken a few months ago and I am so grateful to have a friend like her in my life. |
I laid in bed and would stare at the dust on the television, on the bedroom furniture, on the picture frames...things in our lives were literally falling apart and dust was collecting. Life felt reduced...as if I were being entwined with the increasing dust in my life.
Isn't the term "dust to dust" for good reason? Was I also slowly becoming nothing but dust?
I knew in those moments of staring at the dust that I didn't have the energy or the good health to tackle something so insignificant. Watching my surfaces become coated became indicative of how serious our situation had become with my decline. The little things, all the motions taken forgranted, I mourned their loss. I could only imagine when I would be able to walk around without a care in the world as my body cooperated again to allow me to do menial things such as wipe off a bookshelf or sweep the floor.
I laid there, not being able to communicate my inner sufferings to match my outer failing; I knew things in my world would never be the same again.
Fast-forward nearly ten years to the time I discovered my neck had collapsed and that I had a spinal cord impingement so severe that it caused a spinal cord injury in the form of a large lesion across my C2 section of cord. My hands were numb; my feet were numb; I lost fine-motor detail ability...could not pick up a penny off the counter. I dropped things constantly because I thought the object was in my grasp, but I somehow lost the ability to control that grasp. My feet and legs were not moving to my brain automatically ordering them to do so...I would look down at my legs in complete confusion because they would not move forward to take the steps I was expecting. Everything felt detached. Were these body parts really mine?
Surgery would be brutal. Double-sided cervical spine reconstruction would be necessary with three vertebrae rebuilt using cadaver bone and large metal plates put in front at my neck area and in the back of my neck area, both plates were screwed into place with large screws and bolts coming from front and back to stabilize my neck. This was literally a life-saving surgery. Before surgery, with the spinal cord injury had come moments when my breathing would stop and start, as if my lungs were not functioning properly, kind of like a mechanical failure. Regardless, that old horror of not being able to breathe revisited me in a different manner...simply because that part of the spinal cord controls our breathing function. As my surgeon told me, if my neck collapsed any further onto the spinal cord, I'd stop breathing and it would be the end.
After this surgery, I was faced yet another long, painful recovery. I would need help for many of my daily functions. Granted, I am one determined woman and did many things on my own, even after surgery, but the swelling in my neck from being cut open at front and back would become so dangerous as to not allow saliva to be swallowed. If I moved around too much, the swelling would get worse and I would almost suffocate from the minimal room I had for air to get through and my tongue was swollen and grotesquely discolored after surgery. I do not know if this was from an intubation injury or from the spinal cord injury itself, but it did not help matters in the least. I had a hand-full of problems on my plate after surgery, such as the staple left in my head from the halo that had been attached to my skull during surgery so they could flip my body from back to front for the double-sided surgery and keep my neck stabilized for the change in positions. The staple remained in my head for weeks, even as I tried to remove it myself with the staple-remover from my desk drawer and when that didn't work, I pled with my husband and daughter to just yank it out. Both refused to touch it. After surgery, I had been sent home with the staple still attached to the temple area of my scalp, my blood soaked hair could not be fully washed while in the hospital due to the staff not wanting to take a chance on moving my surgically reattached spine, so the staple became my nagging buddy for a while. Into the bone the staple set deep and could not be budged.
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| Several weeks after surgery and I am FINALLY getting the staples removed from my head and from the incision at the back of my neck. I am scared, but it is such a relief to get the staple out of my skull as my hair-brush kept catching on it. The incision at the front of my neck is also healing nicely. |
Accepting help with preparing my food, refilling my drinks, helping me to shower, to change clothes...all of it became necessary. My strong will and sense of independence meant nothing, it was left unfulfilled and floundering. A walk to the kitchen became a 500 mile marathon in the desert. Finally, I reached the point of being able to walk with my tray that held my plate and I would take it back to the kitchen, carefully balancing each step along the way since I did not have the ability to look down or sideways; I would set the tray down on the kitchen counter and have to leave it there. I could not stand upward long enough to do more than that little walk and the tray felt like a fifty pound weight that put pressure on my swollen upper spine to create pain and more swelling that I did not need.
I soon learned the swelling in my neck would be a battle that I would face for a long time...it did ease a bit, but the swelling then morphed into making my arms and hands go numb again. This probably lasted for a year after surgery. Spine reconstruction at this level is not for sissies, but even if you are a sissy and you require this surgery, you do not have much of a choice. The choice is, have the spinal reconstruction surgery or live for only a short time longer, until you become paralyzed from the neck downward with the inability to breathe on your own. After surgery, if I did too much, which was absolutely minimal movement, I would find myself with limbs that felt detached and as if hundreds of ants were crawling all over me, the same as before the surgery, and this was terrifying.
Regardless, approximately two weeks after my spinal reconstruction, my youngest daughter, Stefie, drove me to one of my business closings because I had an obligation and was determined to meet it. I put on my best clothes, with my daughter's assistance, and I went into that closing with my huge plastic neck brace around me, yet I tried to play it off by saying, "...it looks much worse than it really is." They did not look convinced. In reality, I felt humiliated at appearing weak, so I worked very hard to look "normal." With my purple, swollen tongue, this was quite an amazing feat to try to mask my condition. My clients happened to be a pastor and his wife of a local church; I will never forget their expressions and pleas that I just go home. But no, I stayed and did my job. I paid for it heavily once I was back at home, but I did my job. There would be more moments like this due to the obstinate side of my personality.
Often, I felt as if my family members were frustrated by me doing too much, but it also seemed they were conflicted within themselves because they also wanted me to get back to normal right away. All of us were struggling. All of us wanted our old idea of "normal" back, but it was long gone. Often, I would feel sad because everyone would leave for their day...just knowing that they had the luxury to be able to leave for a few hours of normal life while I was stuck inside of abnormal, well, it sometimes hurt. Those were hard moments in the beginning, but I also realized that each of us will have our own turn at being the one stuck in the body that isn't cooperating and we cannot expect others to walk in our shoes, so I let go of that feeling rather quickly, but it was powerful at the time it hit me.
However, my husband would take care every morning to provide me with at least two drinks at my bedside table...tea and water. He would put food next to the drinks and would take time to prepare quick-grab items at the ready in the fridge. My daughter would come in to see me before leaving for school and she'd make sure I had everything I needed before she headed out the door. I feel most regretful of this time because I know Stefie struggled deeply with not wanting to leave for school; she was terrified that her absence would equal my demise. However, I learned long ago, during my Code Blue moments, that the body would keep going for as long as it chose to keep going, but once it decides to stop, it has just as much power to quit as it does to continue. Stefie had not yet realized that she did not have ultimate control over my outcome on the level she imagined with a child-like quality...as if she were here and present, she might be able to ward off the worst case scenario. Yes, she might help me tremendously, but if the worst were to occur, the truth was, I did not want her home to witness it or to feel responsible for responding to an emergency situation.
My grandmother came to my house and stayed for a couple of weeks to help me during my recovery after the spine surgery. She was incredible. We are very close; she would sit behind me and even though I had on my cumbersome neck brace, she would lift the back of my shirt and gently rub my back and shoulders with such affection, as if she were trying to erase the pain. She gently took a washcloth and rubbed away as much of the iodine on my skin as she could. She succeeded in making me feel better. Her nurturing touch helped to relax my tense, enclosed, chopped up muscles. Throughout the day, she would quietly come into my room and we would lie on my bed together, she took great care to move with painstaking slowness so the bed would not move. Even though I could not talk much due to swelling issues, she would say, "I know you can't respond by talking much and you certainly can't nod your head, just blink and it will be the same as regular conversation between us."
That is love.
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| Me and my grandmother. |
In truth, I was surrounded by people who wanted to help, but many did not know what to do. Many people and churches prayed for me, I remained on several prayer lists for a long time. Not to make an excuse to not visit someone who is ailing, but sometimes it is best to leave the person alone so they can heal. However, I now know that someone who is sick can hugely benefit from a person looking around and seeing what needs to be done without invading the person's privacy. A person like myself will put up a fight to keep from being helped, but I must say, all those years ago, after my Addison's diagnosis, my friend coming over to wipe away the dust that tortured me had been a gift beyond her understanding.
For others, it might be helpful do do such things as preparing easy to heat up food, cleaning house, running errands to get groceries, helping with laundry, cleaning the bathroom, taking the kids to the park or getting them school supplies or their favorite food to have in the kitchen, changing the bedding...just dusting the furniture...it all adds up and is meaningful.
I am thankful for those who came to visit, and I appreciate those who brought in their gentleness and their smiles. I appreciated those who didn't ask me how I was doing while seeing me in such an awful state that was pretty evident of how I was feeling. I appreciate those who still felt compelled to ask how I was doing because I knew they were struggling with what to say, but they still came. And, I appreciate those who knew that my silence and withdrawal was nothing personal against them, but it was necessary for me due to the lengthy healing requirements of my bodily structure and of my mind.
To my family, I thank you for putting up with the potentially hundreds of trays with plates of dried-up food left on them in the kitchen during the time I could not do more than leave it there for someone else to handle. It was not an easy journey during this time to make that trek to the kitchen and back, but I am walking around near normal today because of the help I received back then. I am still lack fine motor capabilities in my hands and fingers, sometimes they cause me infinite frustration at their uncontrollable nerve-jumping that makes a rogue finger tap the wrong keys while typing, but they obey me on a level that is good enough for an outsider to never know there is a problem.
In fact, I have again decided to start sketching...I am a former art major of Visual Arts and Design for studies in Humanities, but I have not done a sketch in years. Years of studies at the university brought me untold joy, but the spinal cord injury put a long halt to all of my greatest joys...piano playing, art, and my growing love for embroidery, but I am starting back with these things and I just gave my youngest my first real sketch since my cervical spine reconstruction...I gave it to her this past Friday for her 22nd birthday. I hope she knows how much it means to me to be able to give that gift to her, it also represents a "thank you" for all she has sacrificed for me.
While sketching, it is painfully obvious to me that my nerve conductions are still a bit abnormal because my fingers are often difficult to control during precise movements necessary to finish a sketch. This makes sketching details, such as the eyes, a great feat. Before recently, I am sad to admit that I had been trying to avoid doing too many things that would put those harsh reminders directly into my path. But, I have gone through another phase of confronting changes in my body. For me, this has been liberating. Sketching reminds me that such detailed work for my particular situation is much more challenging than it had been during my pre-spine-surgery days, but I am moving forward. I can now finally understand the reason painting had become a stressful event...paint is more unforgiving than graphite and charcoal which can be reworked with the help of an eraser. Still, as I start to sketch again, I get into the zone of sketching as I listen to music and can almost forget about my problems, but then, that finger jerks out of control and sends the pencil in a shocking motion...I have to stop, take a deep breath and start erasing.
Sketching does put me in the line of fire with being frequently interrupted by uncooperative body movements, but I also know, with awe, that I am glued together with bits and parts that will never duplicate the real deal, but I simply keep the eraser nearby and clean up the pencil scratches caused by occasional involuntary jerking movements. Maybe the longer I keep at it, the less inclined I will feel like screaming in frustration when the charcoal pencil jumps and makes a mark I didn't ask for across the page. It's a good lesson, another step for me to take toward accepting my situation and doing all that I can with what I am given. I am so grateful that at least I can draw, and I can erase.
I'm amazed at what I am capable of doing after all that I have been through...my body is held together by parts from donors, by the engineering of man and by the surgical genius of a beautiful neuro-spine doctor. I marvel at the ability to open and close my fingers and to take a step up a staircase. It is amazing to be confident that my brain can send a message to lift a leg and it will obey the auto-order for movement. I know how much these abilities mean because I grew up with a mother who had a left paralyzed arm and a right paralyzed leg. I already understood the loss of these functions in a way that a lot of people don't because I grew up in a household ran by a mother who had experienced a loss of those limbs at age five from Polio, so I could not believe that my broken neck was going to rip my ability to enjoy motion away from me, only three years after losing my mother to cancer. I guess, in a way, it is good she was not around to see my struggle with my spinal cord injury and broken neck because it probably would have been unbearable for her to witness. Even though I missed her presence during my greatest moment of need, I am grateful because I know the main part of my healing took place because I did indeed have loving people caring for me and helping me during my worst moments, the best way they could help.
In many ways, I am still healing. Many people who have gone through huge challenges in life do understand that there is more to healing than just the scar that is an evident reminder of their health hurdles...those scars often stand for deeper hurts and deeper wounds and more severe consequences that might never completely heal or never be sealed closed.
I think back over what has been given to me in the minutes and seconds of my life here on earth and it is good that I had been blessed to be prepped early in life to be a giver and a helper. I can see that growing up with a mother who was a semi-hemi-pelagic from contracting the Polio virus as a child did prepare me for the battles ahead in life. Little did I know that by watching her overcome major obstacles, I would learn to do the same for myself.
Sadly, I also know that some people cannot receive help, even grudgingly, because they are angry at needing help. Instead of allowing people to be their helper, it is easier for them to make the helper their enemy, as if the person helping is causing their problems and created their troubles.
During the past decade of my life, I have become aware of this receiving end of getting help and have learned what it means to receive help graciously. "Needing Help" is like an address to me, it is not a place I want to visit and it is probably a place you would love to avoid as well, but when I am there, whether for a short visit or for the long-haul, I have found that it is better to plant some flowers while there instead of spreading weeds. In other words...be part of the beautiful scenery of "Needing Help." Choose to add to the delightful part of being in that place instead of using the lay-over as an excuse to spread ugliness. And no, I am not saying to pretend that you enjoy the loss of independence, but I am saying to try to make the best of it. For the harsh truth is...What is the alternative?
For those who care about you, they realize that the adjustment after landing in that place of "Needing Help" will create upheaval, but do not become the person who cannot see the garden of beautiful moments because you forgot your sunglasses! I am trying to put it nicely...ADAPT. When you feel trapped in that place of "Needing Help," reach for the sunglasses, help to remove the weeds, and search for the beauty while you are there because you might leave that place with an understanding about life that can only be learned while you are visiting. Indeed, I had to do some digging to search for the beauty during times of great suffering and needing help out of the good graces from others, but there is beauty in all things, if only you search for it. It might only be a speck, but it is there for the taking. I am thankful that my visits to "Needing Help" have taught me a lot about life and about people, there is so much for me to share in this area, but I am already full with emotion from putting these few things down to share with you today.
I have faced the fact that the people I love might not be there for me at every turn in the road. Even though our lives intersect with those we love, we each have our own life to live and our own paths to take. In moments of being alone with my failing body during those hard times, I realized that my family might not be there for me during my greatest moment of need, such as when I am gasping for air and can find none. I learned that we can each be in the same room, yet in separate worlds. That was a hard lesson for me to accept. My traditional Kumbaya ideals had to get a reality tweak. In the same token, I had to admit that I will also not always be able to be there for my loved ones at every moment they need me, and this is a part of life that we all seem to grapple with, sooner or later, knowing we are put to some tests on our own. But, I will always feel that to do our best to help each other out, here and there, as much as we can, well, that is a great gift to share with others, indeed.
I am grateful to have given help to others and to have received help from family, friends and strangers alike. For that is the essence of life, to be here for each other and to give something of ourselves as a gift to others. From simple actions such as an encouraging word to cleaning someone's house that is unable to do it themselves, there is a way to reach out.
A wonderful part of life is that we can still try to help others while suffering through our own hardships...this helps keep us grounded and prevents complete selfish behavior. Granted, there were times when I could barely utter a word, but I could still give a loved one a smile. Our past struggles, of all kinds, should not be erased because those moments are the ones filled with substance and grit, those moments make us the person we are today and the hardships we have faced and overcome or that we continue to face should not be overlooked. Each step through my pain and suffering has made me the person I am today...the woman who continually tries to build a good life. A good life is always available, in the midst of suffering, it is still present, it is just harder to acknowledge. But, it is there, you have to work harder for the good moments, but once you reach them and grasp them, they are sweeter and more precious than an easy-to-come-by good moment that you once took forgranted.
Yes, I have beautiful, wonderful moments. If they do not come to me, I go out and find them. I will not give up the search for meaning in all kinds of experiences, good and bad. Finding meaning gives you reason to keep going. Do not quit searching for meaning in all things...it may be the life-fuel you need to keep going for just a little while longer and to continue sending out your ripples.
you're such an inspiration. Your struggles and your strength continue to amaze me..
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