Illness vs. Health

"Take a rest; a field that has rested gives a bountiful crop." Ovid

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Still feeling a bit downtrodden and listless today. This week's illness has taken a toll on my physical strength and spirit - both of which will recover soon, I hope! Nighttime spasms have been the worst I have ever experienced. Body signals of illness are so different now. It's hard to identify when I'm sick as opposed to just having an off day. The symtoms of an UTI were unmistakable before the accident. I suppose over time they will become more clear. I hope the preventive measures I take will continue to keep these infections few and far between. I just started taking a natural preventative recommended by my urologist's office.

I remember thinking two nights ago when the spasms in my legs awakened me with a squish and cracking sound, that this must be similar to electroconvulsive therapy before medication was administered in advance of the "shock therapy" to prevent severe seizure activity and broken bones. I wonder if this is why I feel like I'm in a fog? The image of a woman who had been treated the day before with ECT at a clinical site when I was a nursing student, during my psychiatric rotation, came to mind. She was slowly walking in the hallways with a vacant stare - as though she was in a "not there" state.

Thought the fever was gone but I feel it creeping up again. Another day of rest may be in order. Ugh! I am ready to get some things done!!! Maybe my body is saying it's better to spend some quiet time reading and writing. I'm tired and with no energy. Should be better by tomorrow or Sunday. Will certainly be glad when the mental cloudiness lifts.

Growth vs. Stress

"The rung of a ladder was never meant to rest upon, but only to hold a man's foot long enough to enable him to put the other somewhat higher." - Thomas Henry Huxley
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Post Traumatic Growth (PTG) vs. Post Traumatic Stress Disorder (PTSD)


The interesting question posed on the "On Healing" community forum by Dr. Dan Gottlieb (Christopher & Dana Reeve Foundation website) this week addresses the phenomenon of Post Traumatic Growth, in contrast to the more commonly addressed issue of PTSD. Dr. Dan asked forum participants to share their thoughts on the subject, both positive and negative. I have been pondering this question for several days and will attempt to share from my perspective.

I remember vividly hearing my physicians and attorneys discussing my "catastrophic" injury. Catastrophic...hmmm, "what are they talking about?", I remember thinking. To me, this injury was just another challenge in what had been a long series of unfortunate events. Of course, to the people uttering these words, the visible nature of my spinal cord injury was the only part of my life experience in their awareness.

Only I knew about the troubled thirty two year marriage left behind four years before my accident, the nearly successful suicide / homicide attempt by my husband the day after I asked for a divorce, my grandson's birth during the same time in which my then husband was in the hospital recovering from his injuries, the untimely death of this grandson at seven weeks of age from SIDS, my ex-husband's second suicide attempt, my daughter's spiraling down bipolar psychopathology after her son's death, two home break-ins, four moves, and three job changes.

What have been the take-aways from literally losing everything, including nearly losing my life during this protracted eight year period of time? I will start with the positives because they are the first things that come to mind. It will take a little longer to consider the growth inhibitors / stressors.

Faith. I have learned that some things are not controllable and now know that I will be cared for regardless of where life's circumstances place me. From the moment I realized that I was going to be crashed into, as I prayed out loud, I knew I would be taken care of. I remember hearing the words "it doesn't matter". My interpretation of that phrase was that whatever happened, it would be ok...and it was.

Life is Precious. There are no guarantees in life. Life itself is tentative at best and can end at any given moment. How has that changed the way I live? I say I"I love you" much more frequently than before my accident. Every time my youngest daughter or I leave to go anywhere, we always say "I love you" and "be careful".

Kindness of Others. My family and friends were treated with unbelievable care and kindness by total strangers. Every difficult situation requiring help, it was there.

Patience. Waiting has become a way of life for me until recently when I resumed driving. Waiting for transportation, appointments, return telephone calls, obtaining new or needed equipment, learning new ways to do things, for my changed and often uncooperative body.

Compassion. For others and myself along with a deeper understanding of how disabilities impact those who have them. Also for those who do not really understand the full impact of disability and are able to see life only through their own eyes.

Forgiveness. I don't believe most people awaken with an intention to kill or injure another human beings. Bad things happen in every human life and forgiving those who may have caused an accident or injury frees up personal energy for healing. Remaining in the past or becoming bitter hurts the grudge holder rather than punishing others.

Gratitude. Every day for the recovery I have been blessed with and for friends and family who love me and that I love.

Grief and Sadness. Grief over losses and sadness that may follow as massive emotional and physical adjustments are made are a blessing in disguise - they open up space for necessary change. To quote a phrase from the 70s production "Free To Be, You and Me" - "It's ok to cry, crying gets the sad out of you."

Love. Life is unpredictable and fragile. It is important to let others know what they mean to you at every opportunity.

Resilience and Persistence. Giving up is not an option even when it appears exceedingly attractive. Turning the impossible into possible is only accomplished by bouncing back from bad things and working hard to overcome, accept, or adapt to continuous change.

Mindfulness. Focusing on the present moment and appreciation of surroundings is a blessing that I frequently overlooked in my former, hurried, multitasking life. I am able to take the time hear and appreciate others' life stories more fully since my accident.

Adaptability. I am amazed at how the body adapts to massive changes and continues to function and how creative people can be at finding new ways to accomplish tasks.

Now, the negatives / stressors (growth inhibitors):

Feeling overwhelmed
Physical challenges and changes
Disgust and procrastination of B&B care
Role and identity losses
Limitations
Unpredictability of body
Failed expectations
Needing help
Lost dreams

I am certain that I have left out things, but this is a beginning...

Mistakes vs. Madness

"There are no mistakes, no coincidences. All events are blessings, given to us to learn from." - Elizabeth Kubler-Ross

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I have been struggling with worsening depression and frustration about its lack of improvement. Nearly two weeks ago, as a result of several coincidental factors, I ran out of my prescription antidepressant. The thought occurred that this might be a good time to discontinue the medication since I was not really feeling any improvements. I asked myself why I should keep taking a medication that, obviously, was not helping to relieve my symptoms.

Not one of my most intelligent decisions!!! I thought I was doing ok, but started noticing that I was becoming intensely impatient, irritable, unable to concentrate on anything productive, and so on. Additionally, I experienced three migraines almost back to back - highly unusual for me. I might have a migraine once every three to six months, not three in a week.

OK, I told myself, it is time to take some action to get my antidepressant prescription refilled and that it could not wait until my doctor returned in another week. Mission accomplished. I was able to get a refill and paid the pharmacy to overnight the medication. When it arrived, I noticed that the refill was again a different brand of generic medication and went online to verify that it was what had been prescribed.

I noticed that the generic I received last month was impossible to find through my online resource. I remembered looking up last month's generic and noticing a dose difference - 200mg instead of my dose of 300mg. I brushed it off as a typo and continued taking the medication. I kept digging online and finally found the medication from last month and it was listed as a 200mg tablet. As I consider this whole situation from a global viewpoint, I can now see what happened and why I have been feeling so terrible these last few days.

I have been underdosed for the past two months and then made a decision based on the lack of relief experienced on the lowered dose that the medication was not working, so why take it? My nurse self is giving me a lecture about common sense right now!!! No wonder my feeling of depression has deepened! Yes, I'm seeking help, but this snafu communicates to me that, at least for right now, I need this medication.

Lessons learned - I will seek a second opinion and review of meds before ending a medication cold turkey. I know better than this! Additionally, I need to listen to my body! It was trying to tell me that something was wrong. And finally, I will continue to watch my generic refills even more carefully and question every change. Advocacy starts here!!!

Change vs. Surrender

"I was neurotic for years. I was anxious and depressed and selfish. Everyone kept telling me to change. I resented them, and I agreed with them, and I wanted to change, but I simply couldn't, no matter how hard I tried. Then one day someone said to me, 'Don't change, Don't change, Don't change...I love you as you are'. I relaxed. I came alive. And suddenly I changed." - Anthony de Mello

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Acceptance. Is acceptance a by-product of change or the result of surrendering to "what is"? I know one thing for sure, it is elusive!!! Today seemed like a lost day to me, full of unfulfilled intentions. After missing a night of sleep night before last, I planned to awaken early to attend the 7:30AM service of a local Methodist church. Instead I awakened to my phone alarm in the midst of a disturbingly bizzare dream that had to be completed. I departed back into dreamland.

My next awakening came when I heard my daughter say she was leaving to play paintball with her boyfriend and his family as I said my "I love you" and "Be careful" goodbye, our standard post-accident farewell, indicative of our rudely acquired knowledge that life is tentative, at best, and we should never miss an opportnity to let those close to our hearts know that they are loved. Again, I drifted off to sleep to try to complete that confounded dream!!!

Just before reaching my destination, I heard the sound my cell phone makes when it receives a text message. The message read "want 2 meet me 4 coffee this afternoon?" "What time? Where?", I text back. We set a time for 2:30PM and decide on a location. I looked at the time and decided I could rest for another hour or so, allowing for the hour and a half or two hours it would take me to get ready to leave my apartment. I closed my eyes.

No more dreaming. Instead, I awakened to a pounding headache and queasy stomach an hour later. Another cancellation by my uncooperative body. I drifted off to sleep, blocking the light with a blanket over my head and noticing that our dog had curled up next to my side. He seems to know when all is not right, a primitive sixth sense?

Final awakening at 6:30PM and I noticed something unusual. My right side, the most functional side of my body which is usually tight and drawn up in an overuse knot, is totally relaxed. Both legs are relaxed and not spasming and the only ache I feel is in the left S-I area of my hip. Even though I am thinking "I need to get up to take my meds and drink some water and see if my urine drainage bag is about to burst", I could not move and disturb this peaceful, relaxed sensation that so rarely occurs.

It felt so nice that I lay quietly and enjoyed the rarity of almost total physical

relaxation...absorbed in its pleasure...remembering...and forgetting the remaining intentions of this day. Maybe this is an example of what it is like to surrender, to accept "what is", to enjoy the surprise visit of the unexpected, to be mindful of the present and receive its gift.

Optimism vs. Depression

"Grief is depression in proportion to circumstance; depression is grief out of proportion to circumstance. It is tumbleweed distress that survives on thin air, growing despite its detachment from the nourishing earth. It can be described only in metaphor and allegory...Grief is a humble angel who leaves you with strong, clear thoughts and a sense of your own depth. Depression is a demon who leaves you apalled." - Andrew Solomon, The Noonday Demon: An Atlas of Depression

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Which came first - negative thought or depression? Should the depressed get rid of the thought, change perceptions, or treat the depression chemically to energize the process OR should the negative or depressed thoughts be acknowledged as just thoughts and allowed to drift by...noted but not bought? OR should one spend weeks or months in talk therapy or years in analysis? OR just learn to live in melancholic "dys"harmony? Who really knows? The data indicate...is not a "one size fits all" solution. Perhaps there is no real solution.

What puzzles me is how an usually optimistic outlook becomes derailed. I remember a children's story about a young train engine who finds a way to jump the track and run amok in the fields and is reprimanded by his elders when evidence of his departure from the expected norm is found on his wheels - the telltale grass. Now that was a random thought! I don't believe that feeling depressed is comparable at all. All I know for sure is that I'm there more often than not lately and I prefer to be back on track.

So what am I doing? Reading, reading, reading, seeking help, and doing my best to "fake it 'til I make it". I'm sleeping too much or too little, eating too much or not at all, exercising too little or too much, making plans with friends and canceling plans when my body acts up, trying to make sense of a senseless time. Will keep you posted on how this mind train is running - on or off the track. After writing this paragraph, I know why that random thought occurred - I'm "running amok"!

Murphy's Law vs. Mindfulness

"Unease, anxiety, tension, worry - all forms of fear - are caused by too much future and too much presence. Guilt, resentment, grievances, sadness, bitterness, and all forms of non-forgiveness are caused by too much past, and not enough presence." - Eckhart Tolle

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Murphy's Law challenges the virtues of being mindful and in the present. Today, I would gladly take a little more past or future and a little less present! I awakened to find that my catheter had failed and I would need to change the linens. I stripped the bed and Rebel, our mineature dachshund, wanted to go outside - immediately.

As I rolled to the laundry room with bed linens and wet clothes, he sat impatiently by the front door. Upon returning to my room to throw on some clothes so I could take Rebel outside, I narrowly missed the "gift" he deposited behind my wheelchair. As I cleaned up that pile, he squeezed out another deposit that my wheelchair found.

After taking the little sweetheart outside, I returned to the laundry room to find that the spin cycle on my washing machine wasn't working and the blanket I washed from my last catheter mishap was floating in soapy water that would not drain.

Next on the agenda - cleaning my odorous tire tracks from the carpet between my room and the living room. Rebel was in the kitchen pointing toward his treat container as I'm muttering "I don't think so!" Welcome to the present!

Victory vs, Retreat

"Start by doing what is necessary, then do what is possible, and suddenly you are doing the impossible." - Saint Francis of Assissi

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Life as an adult with the bodily control, or lack thereof, of a toddler can be a little complicated. I was glad to have been invited to have dinner with two of my friends. It was a spontaneous invitation and my body was being cooperative, so I accepted and began immediately making preparations for going out. Spontenaity is one of the things I miss most since my injury.

I arrived at the restaurant, one of my favorites, near the apartment that I lived in when I was first discharged from rehab. It was close enough that I could wheel there in my powerchair to pick up carryout or stay there and listen to music while I watched hurried people order, eat, and rush on with their lives. I remember wondering on more than one occasion if they heard a note of one of the songs or even tasted what they had ordered. Patience and an attention to everyday blessings have been one positive spinoff of living with paralysis.

Interestingly enough, as I reflect back about this restaurant, it was also the one that I was unable to step foot into years ago because of an association that I formed following a tragic multiple murder and attempted murders committed by a teenager from my neighborhood. No, it didn't happen at this establishment, but my family and I were eating dinner here when I started getting messages on my pager from my staff in the Pediatric Intensive Care Unit about the children who were going to be admitted to our area for care. I remember becoming physically ill every time thought about having a meal at this restaurant for several years. It reminded me of the stressful aftermath of that horrible crime.

Times certainly change. This particular evening, I ordered one of my favorites with grilled vegetables. While we were talking and waiting for our food, we were nibbling on our home made, warm yeast rolls. After taking one bite of my roll, I realized that I was going to have to make a quick exit to leave or make an attempt at tackling using a public restroom for the first time since my accident or have an embarrassing bowel accident for the first time in public. While my friends talked, I excused myself and decided to give the restroom a try.

I was relieved to find that the restroom had a large handicapped stall and rolled in to begin the challenge. I ran through a mental safety checklist in a matter of seconds. I positioned my wheelchair at an angle with the toilet, placed my reacher so it was available, evaluated the toilet seat height (would I be able to get up if I sat on it), made sure my cell phone was reacheable, and placed my yoga-thonged feet directly beneath me while I positioned my suprapubic catheter to the side, out of the way.

I stood carefully, holding onto the grabrail with my best functioning right hand and used my left hand to slip my bottoms down, then, transferred to the toilet. It was just in time! This would have been an unbelievable mega-embarrassing mess! Toilet paper is hard to hold and use even with my stronger hand, but I did it this time. Note to myself - add wet wipes to youe purse contents!

One of my friends came into the restroom to check on me. The process, necessarily, took time to figure out how to accomplish the task at hand and stay safe. I told her I was ok and began re-dressing, careful to keep my balance. I returned to my wheelchair and headed to the sink to wash my hands. When I returned to he table, I was celebrating a small, invisible victory. I took a few bites of my salad and began trying to jump into the conversation.

We were at the restaurant talking for nearly three hours! I wondered if they had any idea about what happened to me during the half hour I disappeared into the restroom. I am certain that they had no idea about the physical and logistical choices I was involved in making that would either keep me there, hopefully, or force me to leave abruptly, at the mercy of unpredictability. I had not prepared an exit dialog - evidence, perhaps that I chose to make a potentially impossible situation possible.

Aloneness vs. Lonliness

"Lonliness does not come from having no people about one, but from being unable to communicate the things that seem important to oneself, or from holding certain views which others find inadmissable." - Carl Gustav Jung

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As a card carrying intravert, I value time alone to re-energize before participating in another social interaction. Aloneness is unlike being lonely. It is a time of rest, relaxation, and reflection, a time to catch one's breath outside the everyday hustle and bustle of life. I know from experience, however, that it is easy to slide into this comfort zone and stay there to the point of isolation, absorbed in my own activities and thoughts.

How is aloneness different from lonliness? For me, it is the difference between a peaceful, comfortable time filled with what I want to do, whenever I choose to do it in contrast to a gnawing, empty longing...an ache that must be painfully endured. Lonliness is a vaccum that cannot be filled by superficial encounters. As Jung exlains so well in his quote, it is an unfulfilled desire to be heard and understood. It is an empty heart wanting to be filled with love and understanding...an intimate understanding that transcends spoken language.

Lonliness is a drive that nudges us toward relationship in the hope that the vacancy we harbor will somehow be filled. Hidden behind this nagging gap is the human desire to be known and accepted or, even better, cherished for who we are. The mistake I have made is in believing that another person can somehow make me complete.

Since my accident, I have become acutely aware that this void must first be endured as the quest for self acceptance is tackled. It has been easy to fall deeper and deeper into the chasm of feeling alone and unloveable as I'm trying to make peace with this broken, uncomfortable, and unpredictable body that I'm not particularly in love with right now. I feel like a stranger in a new land. How easy it is to forget that we are more than our flesh and bone selves and the roles that we believe define us.

Independence vs. Dependence

Independence Day, 2009

"Independence? That's middle-class blasphemy. We are all dependent on one another, every soul of us on earth." - George Bernard Shaw, Pygmalion, 1912
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The issue of independence and dependence surfaces at some point in time for every tetraplegic, complete or incomplete, regardless of functional recovery. Shaw's quote from Pygmalion really speaks to interdependence. As a newly injured tetraplegic, these concepts merge into being simply dependent on others for survival and healing. For some, recovery means remaining dependent for life. For some, it means gradual recovery of some independence by feeding oneself or interacting with caregivers to establish a daily schedule. Others may resume a great deal of independence by finding ways to do things differently. Regardless of the degree of functional recovery, the issue of dependence on others resurfaces, sometimes, several times a day.

I was so excited to finally have a vehicle to drive! For the past three and a half years I had been almost totally dependent on public transportation to get to physical therapy and doctors' appointments. My power wheelchair became my transportation for grocery shopping once my caregivers were eliminated. I soon discovered that having a new mode of transportation required a whole new skillset and reverting back to dependence at times during the process. Each time I drove my tango red freedom machine, new challenges presented themselves.

For example, the first time I made a deposit at the credit union drive-through, I discovered that it was hard to grasp the deposit container without dropping it on the ground beside my car. The first time I dropped the container, I thought "Oh, yeah, I can't walk!" "How am I going to pick it up?" Just as I picked up my reacher and was trying to figure out how this would work, a woman in the car next to mine offered to pick it up for me. Dependence again!

This same day, my SUV needed gas. Next challenge! Which side is the gas cap on? How far away from the pump should I park? How much room do I need to allow for my ramp? Would I be able to open the gas cap and handle the pump handle? What about the debit card slot? Is it reachable from my chair? I parked a little close, but it worked. Everything else worked ok. I was so proud of myself! It doesn't pay to get an inflated head!!! I failed to pay attention to the power level on my chair. As I tried to drive up the ramp into my van, the power lights started to flash and my chair came to a stop halfway. Now what?

I looked around the area for someone who might be able to help. A man two rows over saw me and came to ask if he could help. He stepped up on the ramp and pushed my chair as I summoned what power was left and was able to get my chair into my vehicle. I felt so embarrassed, but he quickly let me know that it was no big deal. His college roommate was a paraplegic and he was used to helping him out from time time. Another round of dependence, softened by kind words of understanding.

I am certain these examples will not be the last that I experience in which I will have to ask for or rely upon the kindness or help of others. It is amazing to me that caring people seem to always be around when I need help. Without faith that this is true, I would not be able to continue my quest for as much independence as possible. I feel like I have to surrender the interdependence Shaw speaks of. What can I possibly have to offer my able-bodied rescuers on this experimental journey?

LOL: Tetra Tales

Kick Off Day for my new blog about life as a tetraplegic with truths (and sometimes humor) buried within it's content. A very dear friend once told me that, perhaps, my life purpose after my accident is to find a way to share the humor in everyday activities as I navigate this new territory of living with paralysis. Maybe she was right. Perhaps not. Spoken humor is so much easier to capture than in the written word. I'll let you be the judge of her wisdom. Humor is the way in which many, myself included, make seemingly unbearable life situations and pain tolerable...by temporarily distancing ourselves from the discomfort and looking at the situations we find ourselves in through the eyes of an observer who chooses to see the cup of life as mostly half full rather than half empty. So on with this journey of trials (and sometimes smiles), one baby step at a time.