See, I can be positive!

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My husband wakes me up with a kiss on my forehead to say ‘goodbye’ before he leaves for work. He is smiling and asks me how I am feeling.  This is the hardest question for me to answer.
My lower back is stiff and painful.  My legs refuse to respond to my subconscious directions to move. My big toe joint are on fire and my lower legs are swollen just enough to make them too achy to ignore. The back of my neck and upper thoracic area is on fire. I smile anyway.  My mind goes back to something my husband said in the car a few weekends ago.  “You know what would make me happy?” he said.  “To hear you say that you feel great – not to hear you list off all of your problems and pain – not to hear you dwell on your problems all the time.” But, I can’t lie, and darn it all, I don’t dwell on my medical problems. The cells in my body do that for me. Thus, I am forced to be consciously aware of my pain all of the time, even with diversion.  I briefly think about a worst-case scenario: What if something happens to me later on – he would not be able to advocate for me – “Well, she said she felt fine earlier,” he would tell the doctor/ambulance crew.  So, do I lie to make my husband happy before he goes off to work, so he can have a good start to his day, or do I honor my body, and tell the truth?
I decide to change the subject – I roll over as carefully as possible, peel myself out of the bed and go to the bathroom, telling him that I’ll be right back. By the time I return, he forgot that he asked that question, and the conversation moves on to dinner, and what we need at the grocery store. So he leaves, thinking I am fine since I didn’t complain, and proceeds through his day with now idea how I struggle.
My husband comes through the door, always grumbling about the stupid drivers he must dodge in order to safely navigate the twenty-six miles from his workplace. I empathize.  I used to commute by car too, before I became a medical train wreck. The question is asked again, “how do you feel?” This time subterfuge is easy. I tell him all the things I did; factoids form the silly TV shows I watched, gossip about friends and neighbors. No mention is made about the searing back and leg pain, the stabbing pain still in my neck, alerting me a migraine is just around the corner, or a series of uncontrollable muscle spasms that rendered me unable to drive. I did enough things around the house to make it look like I was busy and actually accomplished something housewife-y – more than watching TV while laying on heating pads, doing stretches to try and loosen my tight muscles that squeeze the nerves that most likely cause my back and leg pain. Or, that I napped for three hours. Of course, the medications that I took to try and maintain some quality-of-life are not mentioned either. Hubby curls up on the couch with his laptop and cruises the net, completely immersed in reading his techno-geek websites. My condition is no longer a concern, or so I think. Then around 8:00p.m. he announces that he has made me a nice warm bath, to help relax my back and legs. Perhaps I will sleep better, he says. Without my verbalizing about the magnitude of my issues, he knows, at least to some degree, how I really feel. I underestimate his ability to perceive my aches and pains. After my bath, I tell him what he wants to hear. “I feel great! Thanks for thinking of me.” It is still a bit of a white lie, but I do feel great – and loved.  For a few moments I am pain free, and I smile, for real this time.

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To Suffer in Silence?

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Often, people like me with chronic pain issues like to put on the brave façade and try to push themselves through each day, thinking they are making themselves stronger for suffering through it all. Are you kidding me? Who is going to pat you on the back at tell you what a great martyr you have been at the end of each day? No one! Someone told me one – “if you don’t care for yourself, no one else will.” This is the absolute truth.
For example, I went back to college to get what I though was going to be a Master’s degree. Due to some logistical errors and blatant lies by administration, I ended up with nothing but another Bachelor’s degree. Had I been a bit more self-empowered, and had a few less surgeries, I would have walked out of that university with the Master’s degree – but that is another story.
I went back to university after my third back surgery. Sure, sitting in those wooden, auditorium seats was just what my back needed for a speedy recovery, but it was the drive to do what I had always wanted to do that got me there and kept me there. I soon learned that my chronic pain (first migraines, then, nerve damage in my back) interfered with my ability to focus in class, to recall material for tests, to study effectively, and to just plain sit still in class. I had heard about a program for disabled students that allowed them extra time to take tests, to study in special groups, and to record class sessions – but I wasn’t disabled! I just couldn’t sit in a classroom without being in excruciating pain and/or discomfort. After struggling through a test in that I could not complete as sitting in the same position for 50 minutes without tears was nigh impossible, I sheepishly stopped in the student disability center to find out exactly what was athe university’s definition of “disability.”
Pride swallowed, and two weeks later after two notes from my back surgeon and my neurologist were faxed into the disability center, I had the distinctive advantage of being a disabled student. Again, my disability was invisible to most – those that knew me well could see the differences in my eyes and skin color when I was having a severe migraine, or notice how my left leg turned inwards when I was experiencing lack of control of the nerves in that leg.
I did not take advantage of this gift of “disability,” but I used it wisely to the got the extra time I needed on tests, the ability to take tests in a quiet place away from the rest of the class, and to take part in special study groups. However, the most empowering gift endowed upon us disabled folks was the ability to report those professors who scoffed at “people like me,” chided us in front of the whole class, about how we were slackers looking for a handout, and made jokes about how we were allegedly taking advantage of the system.
Sometimes coping mean using the strength to admit to yourself that you need and deserve the extra help, and not just gritting your teeth and suffering through the pain.