As I powered through my hectic week between driving my kids around, meetings about my new book, training new speaking clients, and organizing social strategies for a new contract, it was the appointment on my calendar set for Friday afternoon that kept me going.
I like being a girl and being able to do girl things. Things like having my nails and hair done, visiting the makeup counter and trying new products; basically what I’ll call my Self Beautifying Treats, because that’s what they are. Treats. I am lucky to have wonderful people who help me with makeup and nails and hair. They have become my friends. Friday afternoon was one of those appointments and I couldn’t wait.
My day had been particularly harried and I arrived only a few minutes before my appointment. I walked in the door ready to let all the stress and excitement of the week roll off my shoulders.
I took one look at my friend and knew something was wrong. “I love you, and am dying to see you, but are you sure you should be here?” I asked.
My friend explained that it was the tail end of a cold and they were truly feeling much better than they looked. With that I turned off the alarms in my head and melted my cares away.
Saturday I woke up feeling feverish, and with a minor headache. I told myself I was imagining things. Sunday my headache required ‘round the clock pain relievers. Monday and Tuesday were days I slogged through. Wednesday I drove the kids to school and then drove myself straight home and planted myself on the couch. I could no longer deny it. It was not in my imagination. I was sick.
This was a month ago. A whole flipping month ago.
Whatever virus was hanging around my dear sweet friend was so bad it took me out of the game for a month. And that’s not the worst part of this story. (I know, right?)
Remember that little headache I mentioned early on? It never went away. All the nasty respiratory stuff resolved giving me false hope that I could return to my previously scheduled calendar of activities, but nooo. This pesky headache grew and festered and wreaked havoc on my brain. At one point I found myself in a meeting unable to make sense of what the people around the table were saying.
I panicked and drove myself to the emergency department. Let me tell you nothing instills confidence that you are getting the best help possible like seeing “altered mental status” scribbled across your folder.
I was sent home after being cleared for all the possible major catastrophic life ending events and was told I just needed to rest.
The following evening my 12 year old son desperately wanted to play a game with me, read: It was past his electronics curfew and he needed someone to entertain him. He caught me at a good moment because I was layered 6 feet deep in mama-guilt for having been so sick for so long. I said “yes.”
My son headed over to the shelf and picked out a relatively simple spatial relations game “CirKus”. His grin was ear to ear as he carefully set up the pieces of the game. He was unsuccessful in his bid to get his older sister, who was way to preoccupied with her fan fiction, to stop her activities and join us, but that did not diminish the pure joy he felt.
My husband Michael confirmed the rules of play and I did not comprehend. This was not unusual. It generally took me a round of play before my full “Type A” condition took hold and I was able to strategize my win. Youngest player went first. My son’s large brown eyes took in the board and the pieces. A grin formed at the edge of his mouth as the plan he envisaged laid way for his first move.
My husband is more of a plotter. While our son was formulating his plan Michael was visualizing every possible move the boy or I would take and how he would master the board by dismantling our plans. He picked up his brightly colored green game piece and placed it in the sweet spot he sought at the epicenter of our son’s plans. His successful placement was verified by the preteen’s grumble, low enough to hint at an impending voice change and high enough to remind us of the little boy he still is.
Then came my turn. My mind was blank and my heart began to race. I like to play games; rather I like to win games. I also strategize, though my strategy lay not in how to block but in how to build on the whole for a win. (Sounds like the topic for a political book to me.) Today there were no thoughts. I looked at the board and I looked at the shapes and I could not understand them. What was I supposed to do with them? Where did they go? Were they supposed to connect? How?
The synapses in my brain were firing and pumping as hard as they could. I could feel them, but no connections were being made. I started to sweat and became very agitated. My head was pounding. Michael showed me how the pieces worked and somehow I made it through the game. I lost by a long shot.
The vision of my file in the Emergency Department labeled “Altered Mental Status” flashed before my eyes. Clearly my status was altered, but why, and how could I get this headache, now going on a solid month, to quit?
I went back to the doctor. She was out of ideas and sent me down to the Emergency Department once more for a spinal tap to rule out viral meningitis. With that ruled out we left the Emergency Department, head pounding and no more answers.
Michael tenderly navigated me around the snow that had fallen outside of the hospital and helped me into the car. I love the way he takes care of me and nurtures me. As he leaned over me to buckle my seatbelt he stopped to place a kiss on my forehead. His face was etched with fear. His hazel green eyes, normally sparkling and mischievous were cloudy and dark. His love and concern for me were creasing his face. He looked like he felt the wear of every day he had been on this planet and, no matter his level of exhaustion; he was determined to find an answer and relief for my pain.
The next morning I awoke with the familiar throbbing in my head. I had a full and exciting day ahead of me working with one of the non-profit boards I sit on. My pain was increasing by the minute. Michael suggested I call the doctor’s office in hopes that they may call in a stronger prescription to put an end to my pain.
The doctor’s office team was neither warm nor patient as my slow firing brain cylinders attempted to get the information out of my mouth that would lead to the relief I was in desperate need of in the form of a call from the on-call doctor.
Michael and I were parked in a surface lot in downtown Denver at the heart of the massive hustle of body, automobile, and light rail as Denver woke up ready to take the world by storm with her many entrepreneurial ventures. I sat there in my car, a shriveled remnant of myself, exposed to a world pulsating at normal around me, and sobbed unintelligibly into the phone. I was desperate for them to help me, and certain that was not their goal.
Michael took the phone from my hands and made clear the nature and urgency of the request.
My body began to lose the steam that was propelling me forward. I leaned deeper into the safe haven of Michael’s torso as I climbed out of the car. He supported my weight and carried me forward toward our meeting. As we exited the elevator the company CEO moved towards me, worry on her face as her long wavy blond locks took flight behind her. “Dafna, what happened? You’ve lost your glow.” she said.
Those 4 words were the hardest words I’ve ever heard. I’d lost my glow? My glow was my everything. My glow was my passion and my ability to engage others in the work of my passion. My glow was my ability to make people at ease and feel welcome and wanted in my presence. My glow was the super power that made my children feel more loved than any human on the planet. My glow was what attracted a man like Michael who’s own glow made me blush and humble. Worse than the headache, worse than seeing the words “altered mental status” on my chart, worse by far than all of that was the assessment that my glow had disappeared.
By late that evening I was admitted to the hospital. My condition was given the label “Status Migrainosis” and the word “Headache” was scribbled in the diagnosis section of the patient information whiteboard in my hospital room. I felt like it was mocking me. “Headache?” I could hear the nurses giggling in the hallway as they called for some Tylenol stat. That didn’t happen of course… at least I don’t think it did… but what did happen was a constant stream of doctors and nurses pushing this and that in my IV and giving me all manner of pill, and capsule, and caplet, by mouth, and constantly asking me to rate my pain from 1 – 10 on the pain scale.
I had no idea what meds they were giving me but I left that in Michael’s hands. If he told me to take it I knew he trusted it would help me get better. I could not, however, rely on Michael to answer the 1 – 10 pain scale question.
How did I feel? Really [expletive]… [another expletive]… lousy. None of the pain scale smiley faces could come close to describing how I felt. Worse, I feel inclined to put on a brave and strong front. As a mother, a person in leadership positions, a friend, I feel this need to always exude an “I’ve got this” attitude towards pain, disaster, chaos, what have you. I thought about how to answer and replied with a 7. A 7 reflected to me a point worse than midway, better than all the way…somewhere in the middle? I didn’t know and the pain scale made my head hurt.
The medicine had started kicking in. My head no longer felt like it was being split in two by an axe but I felt very, very badly. The nurse wrote 7 on the board and determined that I should reach a 4 before leaving the hospital. 4? How had she come up with that number? Did she know what 4 meant for me? Did she know that by my definition of the pain scale, I had not felt below a 5 in over a month? But really, a “Headache” should have a 30 minute cure with a couple of Tylenol right?
The morphine and steroids they gave me the first night seemed to be doing the trick and I was very motivated to get out of the hospital. The clock was ticking down. In just two days’ time I was scheduled to be a keynote presenter for the Daniels College of Business Executive Leadership Summit. I was so excited to present to this group of leaders from my Alma Matter.
As a bonus, my amazing publisher pushed up the publication of my book so this impressive audience would be the first to lay their hands on a copy. The book was shipped straight from the printer to the Park Hyatt Beaver Creek, the beautiful location of the Summit. I was determined to get out of that hospital bed, though it felt so good, and make my way through the steadily falling snow to Beaver Creek.
As day turned into night it was clear that I would not be leaving the hospital. I hatched a plan that involved a brown curly haired wig and figuring out how to swap the IV from my veins to Michael’s. Alas, it seems, I may have found the limit to his love for me.
Plan B was to teach Michael the workshop tool we designed together and to have him Skype me in to the hotel ballroom from my hospital room.
Michael headed out into the snow in the middle of the night and pulled it off. The emails of thanks and gratitude began rolling in even before Michael returned from Beaver Creek with the first copy of my book that I had ever felt in my hands. I loved the blue of the cover, the red that marked Colorado, the weight, and the pages, and there on the cover was my name “Dafna Michaelson Jenet”. I’d done it. I’d written my book. I’d gotten my book published and even as I lay there in my hospital bed people had the book in their hands. They were reading my words. They were also, hopefully, hearing their own stories retold in their head.
Skype-ing in to that session took everything out of me. I’d managed some makeup and framed the camera shot in a way that made my hair seem normal. I threw on the sweater I had worn when I was admitted to the hospital, a knobby red wool wrap, over my hospital gown. I securely pinned it into place so as not to give anyone viewing the Skype broadcast a different kind of show.
I took a few deep breaths and powered through the pain. I promised to deliver and by G-d I was going to deliver. It worked. As the skype ended I crawled back to bed, my pain level a 7, but the nurses had heard my presentation through the door and declared me cured. My discharge paperwork had been completed. I had until 7:00pm, before the shift change to be out of my room.
I was floored. I was in pain. I didn’t know what meds I was on. I didn’t have a plan of treatment. And I didn’t have my advocate. Michael was still in Beaver Creek serving the leadership of DU.
I found myself alone, weak, and scared. What the staff interpreted as healing was simply me doing what I do, delivering what was promised to the best of my ability even through unimaginable pain. I wasn’t asked what my pain level was anymore, both a relief and a slap in the face. I was also informed that the doctor would no longer see me.
I refused to leave until my husband could come and get me although a cab was offered. My strength, my dedication, my level of commitment which had served me so well in the past, failed me and left me both literally and figuratively out in the cold.
In the past, when physical and medical elements challenged me the path laid before me and course of action I took made sense. They were opportunities for me to educate myself, be decisive, and take action.
Lumps in both breasts = mastectomies.
Family history of ovarian cancer = oophorectomy.
Torn hip labrum = labral repair and physical therapy.
None of the procedures in and of themselves were easy or pain free, but the actions were decisive and my body was left stronger so the work I live to do could be accomplished.
Where were my actions plans here? Where was the explanation of the root cause of this ailment? What do we do to stop it? What do I do to avoid it? What do I do to obliterate it from the planet? I wanted at least some of these answered before I left the hospital. Was that really too much to expect?
Or was the diagnosis scribbled on my board “Headache” not really that important to solve? One can live through a headache, but I have the deep need to be functional too. Weird, right? Oh, and what I wouldn’t give to make the pain go away.
With no answers from my medical team I asked those who suffer from migraines what I should do to get better? I shouldn’t have. They, as my medical team had said, explained that I needed to let my brain rest. Then they told Michael I needed to limit my screen time. Michael jumped to action and immediately took away my phone and computer and iPad. I wrote this by good old-fashioned pen and paper and poor Michael had to figure out how to read my handwriting to type it. (This is a secret ploy to get him to return my toys…um, technology.)
All of the sudden I was cut off from my world. I mostly text, don’t talk. I don’t know anyone’s phone number. I read my newspapers online every day and can’t watch TV now anyway, but now I have no idea what’s happening in the world. My email is my communication center. I had no way to follow up and let people know I’m not ignoring their requests. And then my calendar, which tells me where to go when… I had not a clue what and who I was missing. Michael became my secretary and I could see the migraine spreading in his own poor head.
Truth be told, it had been a week before I was admitted to the hospital that I started struggling with reading, let alone comprehending, anything longer than a tweet on my screens and even they were somewhat muddled for me.
My best bet to beat this thing was a dark room, no sound, ice for the frequent sweats, and here’s the big one: a clear resting mind.
The simple medical advice of “relax your brain” sent me into an anxiety filled cycle of nothing. I was isolated and terribly lonely. I tried to convince myself of the merits of life before technology, but failed miserably. I love technology and the connectivity it has brought to our lives not to mention the information and dialogue this free sharing of information provides. In one fell swoop I felt devoid of input. I felt like I was isolated in a white room with no doors, or windows, or sound. I was truly frightened.
The sudden forbiddance of any screen driven electronic input of information into my brain panicked me and caused my anxiety to start spinning. How would I let anyone know where I was and what was going on with me? How would I do my work? How would I launch my book after having it drilled into me how important that first week on the market is? Even bed ridden work could get done via those screens.
As the days in the hospital passed I filled my time with fashion magazines. My intent was not to think but to relax my brain by looking at the pretty new clothes being launched for Spring. But they did make me think. The 70’s?! We are really bringing the absolute worst fashion decade in history back in vogue? And Bazaar. And InStyle? I’m off of technology for 3 whole days and the entire fashion industry has decided to collectively commit suicide.
It was all too much to bear. I sit here and write this tale of illness, pain and fashion woe, for you dear reader for a number of reasons.
1. Take time to rest the brain.
And “this first step is a doozy” (Groundhog Day reference intentional as that has been my life lately). Man does indeed plan and G-d or Universe does in truth laugh. The real question I ask you, and continue to ask myself, can we find answers in the laughter and a renewed method or system of doing our crazy connected lives for the future? (Nope, not giving up Facebook.)
When I cried on the phone to my dear friend Rena, she said, “You, of all people, will come out of this and teach us something or help us make something better.” I was touched and honored by her words and indeed had already sent some emails to see how I may become a citizen advocate for our statewide insurance program. Is that the answer?
Or, is it the true figuring out to the steps one takes to those words I feared so much: “rest your brain.” Yes, I’ve stopped screen driven input, for now, but I can’t stop reading and thinking. Yes, I meditate and I pray, another form of meditation, but in and of itself it is, apparently, not enough.
All of our brains are on overdrive, not just mine. Can we be more purposeful in recognizing when we need relief and when we need to refresh? Not unlike a stuck web browser, occasionally our brains need a good reboot too. Perhaps those stand alone emergency centers popping up across America should be offering “Quiet Rooms” with refreshing brain massages to reboot you for your tasks at hand?
What are your answers?
2. The Universal Pain Scale is a one size fits all solution to very individual needs.
Know your pain scale and then define it to your caregivers whether or not they ask you. If the arbitrary number they assign you does not feel right, speak up. This is not about showing bravery; this is about getting the help you need. I’m still working on this.
Here’s the pain scale I devised after leaving the hospital which defined my pain ranking, because we all know the really good comebacks come just one minute too late for the battlefield:
O: I feel just fine.
1: I have a headache and a good massage would probably release it.
2: Persistent head pain. Time to take Tylenol.
3: Tylenol is not working and I’m trying to keep my head together by applying pressure. I need to lie down.
4: Alternating acetaminophen and ibuprofen to keep the pain at bay. Having difficulty concentrating.
5: I’m really miserable and it feels like my brain is separating from my skull.
6: Feels like my skull is being pulled out from my skin. I can’t understand what people are saying to me.
7: I am ultra-sensitive to all light and noise. I want to hide under the blankets and have my head removed.
8: The sensation of a light rail train rolling across my skull may provide the relief I seek. I can’t respond to questions. I can’t explain how I feel.
9: My head has exploded and the bits and pieces are trying to find their way back together. There are saw blades cutting into me with every move.
10: I cannot see. I cannot hear. I cannot speak. Please don’t talk to me. I am not capable of making a decision.
I know personally how hard it is to answer the pain scale question and you will get asked it at some point in your own medical care. I suggest you think about it on your way to get help and when you give a number on the scale explain what that number means to you. When they set a number goal for you clarify that your understanding of achieving that number is the same as your medical team’s understanding.
3. Get an advocate
All patients need an advocate at all times. Should you find yourself in need of hospitalization or emergency care, and I hope you don’t, always bring an advocate with you. As you know, I have the advocate of the universe in Michael, and not just because he is my husband. What makes Michael a good advocate is:
– He asks questions and makes sure he fully understands the thought processes and next steps of the care team.
– He makes sure my concerns and fears are voiced coherently and responded to.
– He validates and recounts the accurate timetable of events. (This is very important when “altered mental status” gets slapped on your folder.)
– He makes sure my total needs are met, like ordering meals and helping me to the restroom, to getting the nurse when the bell ring goes unanswered.
If you don’t have a Michael in your life as a friend, spouse, or family member, know this: Every hospital has a Patient Advocate on staff. Call on them for help so you can better understand your care and communicate your needs. Just let the nurse know you’d like to speak to a patient advocate, it is your right and the nurse will connect you to the right person.
4. Please, please, please don’t go to work sick.
I’ve been staying out of the vaccination debate (mine have had their shots) but the resultant problem is the same. My Self Beauty Treat friend may have had a tiny bug. They did not want to let down their clients and wanted to be able to pay their bills. With every positive intention in the world they got up, used all of their strength to get dressed and make their way to work for the full roster of clients that lay ahead. I was the last of the day. Perhaps the other clients were at the top of their game health wise and the bug did not impact them. Perhaps they too got sick, but didn’t know why. Perhaps my immune defense system was down just enough for the perfect storm to begin brewing inside of me. And perhaps it wasn’t my friends’ bug at all but another well-meaning soul who went to work when they should have stayed home that day that made me sick.
Vaccines help the weakest amongst us from contracting deadly illnesses. People staying home when they are sick prevent the rest of us from catching that which may not kill us, but may take us out of circulation for way too long. For me so long that it’s well past time for another Self Beauty Treat.
I know good and well that this too touches on the bigger picture of paid sick days for those of us who are hourly or contract workers. Perhaps there is space here to formulate a “community cares” fund to help people who need a day off to heal to also meet their financial obligations while healing at home so they are stronger and not spreading illness.
5. And for chocolate.
Because chocolate. Now I know you were hoping for a marijuana cure to appear here as I do live in a plant friendly state, but sadly marijuana is shown to be the trigger of migraines more often than its cure and at best there is some evidence to suggest it can help them from starting, but again, not curing them once they take hold. So, as I said, Chocolate.
I now open this up to you with a few questions I’d be so grateful if you’d take the time to answer:
1. (Totally selfish) What are your best migraine busting and avoiding tools, tips, tricks, or magic spells?
2. What ideas do you have for making it possible for the sick to stay home and stay financially solvent? Bonus points for non-government based solutions. And no mudslinging either, ain’t nobody got time for that!
3. How would you change the universal pain scale so individuals could better explain their unique level of pain? Funniest and most useful tool wins a free signed copy of my book. ;)
Thanks for reading and taking the time think about these conundrums. Here is to your good health!