Sometimes in life you have to get a little lost before you are truly able to find your way.

Archive for the ‘Work’ Category

Thank you and Screw you!

To the kind stranger on the bus, my appearance must have matched how I was feeling the other day when you offered me your seat. It was a long ride and you didn’t have to do that. I want you to know how very grateful I am for your genuine kindness. Thank you.

To my beloved furry friends, you have been by my side during every high and low of this remarkably long journey. You never waver. We celebrate together, we get knocked down together; and get right back up together…we endure together. You embody all that is unconditional. I love each of you so much. Thank you.

To my Coworker, you are just awful. Daily you put on your little show of friendship while undermining me further and further. You betrayed my confidence and revealed sensitive information regarding my medical condition to our boss all in an effort to take my job. How do you live with yourself? Screw you.

To my Doctor, Thank you for finally being the first to not give up on me. To not tell me that my only option is pain management with narcotics. To commit to finding the real answers, no matter what it took. For not being afraid to admit that you don’t have the answers right now, but we’ll figure it out together no matter how many specialists we have to work with. Thank you for being so committed to helping me stop just surviving, and finding a way to start living again! Thank you!

Dear random person on the street full of judgement and ignorance, you don’t even know I exist. You have no idea I overheard your horrible conversation the other day about the guy from your office who was “annoying the crap out of you” because your boss had agreed to give him a special schedule because “he freaking has headaches or some shit.” You said “it’s a freaking headache, get over it already! If I whined and asked to go home every time I got a headache I’d never get anything done!” Then I heard you say the word “cluster.” You even said that you had no idea what it was! You admitted that you are not educated about what this man is going through, and yet you have no problem judging him or your boss for his need to have an altered work schedule? I highly suggest that you do look up cluster headaches and I pray that you will never have first hand experience of what your co-worker is going through as it is one of the most painful headache disorders known to man! Screw you!

To my Dear Friend, you have been there for me, been there with me, literally, through so many difficult times, and equally, I am so pleased to be able to say, through so many wonderful moments over the years. Ours is a bond that is seemingly unbreakable. I am so grateful to you for so many, many things. Thank you!

Dear Wonderful Coworker, Thank you for being so fair, and brave. We hardly knew one another, but you saw something unjust taking place, and you came to me with the truth just in time for me to save myself. I am so grateful to you for your amazing strength of character, your grace and your selflessness. Thank you!

To my Boss, I know you are still young and fairly inexperienced. I make some allowances for that. Only some. Rather than comment on the past, I will wish you better for the future. I will hope that you will learn from the mistakes that have been made. I will hope that my life will have impacted you significantly enough that should you again work with someone with a chronic illness, you will remember how much more effort it takes to do the same work, and that he or she is coming to work sick/in pain everyday, so if they are calling out sick, it’s because things are really, REALLY bad, and that your remarks questioning the veracity of their claim are entirely inappropriate. I know not everyone who suffers from chronic conditions is a paragon of truth, so of course, use your discretion, but that, I would hope, would already have been done before you hire. Going forward, please keep in mind what people go through. Try to imagine walking in their shoes before you hit them over the head with them. Screw you!

To my Family, I know that my illness has taken a great toll on you all, but you have supported me in so many amazing ways. I know that you have not always agreed with all of my treatment options, but you’ve recognized that all options had to be explored. I know that above all else, it has been so difficult to not be able to fix any of this for me, to not be able to make me feel better, not to be able to make it right or lessen my pain. But you have all been with me along this journey, sometimes literally!…but always supporting me in ways that I have needed. I know you hate all the medication, but thank you for finally realizing that I have exhausted all of the other options. It is not ideal; I do not enjoy it, but I accept it and it makes me better. I am grateful to each of you for all the many ways you have helped me pass the point of just existing, just surviving, so I can get back to living. Thank you.

To my Love, this battle has taken perhaps that greatest toll on you. You have had to live it with me every day. Through every high and every low. Every dashed hope, every failed treatment. Every insurance battle and long night in the E.R. You have weathered all of my positive moments and my hopeless crashes and burns. You’ve played chauffeur, nurse, (despite your fear of needles!), even cook and maid when I could get off the couch for months on end. You’ve gone to extremes I would never have asked or expected. There were good moments. There were not so good moments. But you loved me through all the moments. Each and every one. I am so grateful for the many ways you saved my life. Sadly it cost us our life together.

To myself, thank you for getting up and tackling each day as an opportunity. THANK YOU!

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Invisible Disabilities

People in wheel chairs, or on crutches, or with an oxygen tank or seeing eye dog deal with their injuries/disabilities every day. They also deal with the responses of the people with whom they interact. These responses might vary from insulting, though well-intentioned attempts to help to cold indifference. On average, most people are considerate of the needs of people with noticeable disabilities. What happens though, when that disability cannot be seen? What about the many people who suffer daily with invisible disabilities? People with severe limitations on their activities for work, play, or simply getting through the day? If you can’t see a disability, are you likely to treat it with the same regard that you would an obvious disability? Would an employer treat the two the same? Would an insurance company? A neighbor? A family member?

Millions of people suffer with invisible disabilities…fibromyalgia, migraine, renal failure, sleep disorders, diabetes, severe depression, attention deficit disorder, or any of the many other potentially debilitating psychiatric disorders. Their limitations are real. Pain. Fatigue. Dizziness. Inability to concentrate. Sensitivity to light or sound. Chained to their medication to avoid painful or even lethal setbacks. As real as these conditions and their associated limitations are however, there still exists a resistance to fully recognize or respect their truly disabling nature. If a person with an obvious disability goes to the grocery store, or out for dinner, it is unlikely that the validity of that disability will be called into question. The same cannot necessarily be said for those who suffer with invisible disabilities, however. More often than not, when a person suffering from an invisible disability exhibits “normal behavior” many people tend to judge them, and even accuse them of faking their condition, or the extent of their limitations.

Yesterday a news story broke that could potentially end Michelle Bachmann’s 2012 presidential run. Normally I would be overjoyed to hear this news. It’s no secret that I don’t exactly love this candidate. What does Michelle Bachmann’s presidential run have to do with invisible disabilities, you ask? The story is centered around the question of whether Ms. Bachmann’s debilitating migraines could potentially render her unable to perform the duties required of a U.S. President. In the wake of this breaking news, I find myself actually identifying with this woman. A woman with whom I disagree on just about everything.

Ms. Bachmann now has, and has had, a staunch group of supporters. She also has a great number of individuals and groups opposing her. I, myself, could not fathom having this woman as president. However, my personal politics aside, this question is one of huge import, and for me, great personal significance. The story was allegedly leaked by some of Ms. Bachmann’s own staffers who had become concerned in recent months that she could, in fact, be dealing with a disability so severe that she would not be able to carry out the essential duties of the presidency. How then, has someone suffering such a severe disability managed to hide her incapacitation from her constituents for so long? The answer is not only simple, but more common than most people could ever imagine. Migraines, like so many other disorders, are invisible disabilities. From the perspective of the average observer, Michelle Bachmann, like millions of other people suffering from invisible disabilities, manages her life, and her pain, behind closed doors, quietly, in secret. She deals with hand she has been dealt, and walks out into the public with a strong face, no matter what she is feeling inside. And given the nature of this latest news story…it’s no wonder why she does so.

So where does that leave her, or the voters or the rest of us who suffer from invisible disabilities? We have laws about discrimination based on disability. But there are also protections for potential employers (in this case, the American public) to ensure that any candidate for any job must be able to adequately perform the essential, core duties of the job, with or without reasonable accommodation. (“A reasonable accommodation is any change in the work environment or the way things are usually done that gives an individual with a disability an equal employment opportunity.” – http://www.ada.gov/). From personal experience I know all too well how invisible disabilities can affect both job performance, and the ability to secure or maintain a job.

I suffer from severe, debilitating migraines as well. I can say with frustration and honesty, that this condition has rendered me completely incapable of performing my job in the past. To boil down decades of medical history to just the relevant facts, suffice it to say that I began to experience migraines as a teenager. These painful events proceeded to worsen over the years until August, 2000, when what started out as a “normal” migraine turned into an intractable, daily headache that has not ceased for even the smallest moment. It is not anything that most people can see. I don’t have bandages or assistance of any kind, but this condition has limited me in many significant ways. I cannot drive at night, lie down, enjoy many foods on a long list of triggers, take any kind of hormonal birth control, use the computer for long periods of time, plan any activies when there is a storm coming or going (due to sensitivity to barometric pressure), plan a full day of activity without significant breaks, go to loud restaurants or bars or concerts without ear plugs, exercise for anything more than short intervals, have a candle-lit dinner.

Several years ago I found myself, after many years with my company, at home, unable to work, collecting disability benefits. First, short-term. Then long-term. Eventually I was laid off. I felt not only frustration and uncertainty about my future, but a loss of independence and a sense of defeat and hopelessness. Previously I had led a very successful career. I had been a subject matter expert in a highly competitive field; someone called upon for advice and important decisions. I had a great sense of accomplishment and competence. My medical condition however, seemed to rob me of those things. After several years off from work and a great deal of medical and emotional therapy, I returned to work. Not in my field of expertise, but in a position that allowed me to reenter the workforce, get my bearings, and build my confidence. When I applied for my current position I said nothing of my medical condition. I hid my disability and current physical ailments from my potential employer in the same manner that Michelle Bachmann, and a long list of U.S. presidents have done. In the few months since I have been working I have been forced to face the continued effects of my condition. I am certainly better now than I was years ago when I was forced to go on disability. But many of the ways I had learned to manage my condition are no longer options for me. I cannot take breaks when I need to. I cannot stay away from fluorescent lights. I cannot take certain medications when I need to. And what I feared most, that my migraines would again interfere with my ability to do my very best at work, has come to fruition. It is not only my own sense of inadequacy, but my superiors’ opinion of my abilities and my commitment to my job that are burdening me.

In addition to enduring this pain in silence, I am faced with uniformed judgment. I say uninformed, because my superiors do not know why I sometimes call in sick to work, or have to leave early, or forget things or fail to accomplish all of my tasks in a set amount of time. I could tell them. I could have told them when I interviewed. But I did not want to be judged the way that Michelle Bachmann is being questioned now; I chose to hide my ailment so that I could be judged on my merits and qualifications rather than my physical limitations. I do not claim that this silence is fair. To my employer or even to me. Perhaps they did have the right to know before they hired me. Perhaps I have the right to seek reasonable accommodation. But what might seem like easy answers become very complex when the far-reaching effects of invisible disabilities are considered. While employers shy away from saying no to a blind person, or a hearing impaired person, or a person in a wheel chair, invisible disabilities are treated quite differently. There is a great deal of judgment. There are accusations (spoken or unsaid) that the disabled person is either lying or exaggerating or even just trying to get out of certain responsibilities or seeking special treatment. Any normal activity is often seen as proof that the disability is not true…”Hey, I saw her at the movies the other night…she didn’t seem too disabled to me!”  While our societal sensitivity to visible disabilities adequately protects many visibly disabled people from these judgments, the same cannot be said of our sensitivity, or lack thereof, to invisible disabilities.  What the person commenting on the movie-goer might not have stopped to consider is the fact that perhaps she had had to wait to see that movie for a day when her pain was lower. She didn’t have the freedom to see it whenever she wanted. And while she watched she had used ear plugs and sun glasses to mitigate the effects of the light and sound in the theater. And when she went home she was in so much pain that she had to take medication that makes her feel terrible. But she goes to the movies anyway, not to be a martyr or to prove that she can, but because when you are faced with limitations, you do what you can to lead as normal a life as possible, even when there are negative consequences.

Returning to the dilemma facing Michelle Bachmann and her constituents, there is certainly a vast difference between my situation and hers. The well-being of our nation and the world does not rest on my ability to do my job. But if elected, it would rest on hers. Though she claims her migraines are not an issue, and while I would like to say that it is completely unfair to disqualify her based on her medical condition, I don’t believe it is, even with my own experience in mind, or perhaps even because of it. I know as well as anyone that this condition is not only real, but can at any time, under any circumstances render even the strongest individual incapable of rational thought, concentration, decision-making, even simple movement. And while those things are factors for most any job, they do not carry the same significance that they do for the president of the United States. In the past, Bachmann’s migraines have caused her to be absent from the Minnesota Senate for up to a week, miss multiple Hosue votes, and frequently retire to her congressional office with the lights out waiting for the attack to pass. Personal politics aside, the truth of the matter remains that if Ms. Bachmann’s condition is as severe as it has been reported, it is unlikely that she is physically capable of successfully carrying out the relentless and unforgiving responsibilities of being the president of the United States.

For me, it raises questions about how I will approach future job-seeking efforts. Perhaps I will be forthcoming about my medical condition and honest about the reasonable accomodations I will require. I will risk losing many opportunities, but perhaps find myself suffering less, and accomplishing more when the right opportunity, and the right employer come along. The same might be said for Michelle Bachmann. Politics aside, it could well be that this particular job just isn’t one that can offer the reasonable accommodations that her medical condition requires.

For the public at large, I hope this debate will open a dialogue about the unfair treatment of people with invisible disabilities. I hope that compassion will begin to replace criticism and distrust. I hope that everyone who suffers from disabilities, visible or invisible will be afforded the same respect and opportunities they deserve, and that they will be judged based solely on their merits, qualifications and skill. I hope I will live to see a day when those of us with invisible disabilities will not have to bury them behind lies to seek fair evaluation.

 

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