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

Posts tagged ‘love’

DWD – Dating While Disabled

Are you the kind of person who just meets people anywhere you go? The supermarket, dog park, pharmacy? Or are you the bar-going type? Online dater? Doesn’t matter does it? Because all those conversations start off pretty much the same way. Hey, how are you; what’s your name; what do you do? Ahh…and it was going so well. Oh I’m actually on disabil….see ya! We’ve all been there. We’ve all had those thoughts. The “who is ever going to want to be with me? Who would ever put up with this insanity? Why would anyone choose to be with someone in my condition?” thoughts. Many won’t. Some will, but for the wrong reasons. Because they have a need to fill and taking care of you does that. Trying to “fix” you does that. But here’s the thing…there are people out there who don’t care what you do. They don’t care that you aren’t “able,” that you can’t work, that you live with pain they cannot imagine. Hard to believe right? If you can’t quite get there…let’s go back to that dreaded question…”what do you do?”

Why does our profession count for so much? How did it come to define who or what we are? When we lost our ability to work, did we stop being who we were? Or what we’ve always been? Did the person we are suddenly cease to exist too? No dammit! Ok, so yes, it sometimes feels that way. But the REAL answer is NO! We are not our job. Let me repeat that. WE ARE NOT OUR JOB. I used to work as a public outreach specialist for an environmental consulting firm. I was good at my job. I didn’t always love it. It challenged me. I traveled. I helped people. And there were parts of it I couldn’t stand. But the job was never my identity. Yet somehow, when we are stripped of our ability to work, no matter what that work is, we DO feel stripped of such a big part of ourselves. Partly because it strips us of our independence – but that is different and we HAVE to make that distinction. Partly because some of us truly love our jobs and we miss them. But that doesn’t change WHO we are or WHY we loved that work.

What if no one was allowed to talk about their jobs when asked who and what they are? How might that change the dynamics of dating, making friends, all kinds of human interactions? How would you answer? How DO you answer? I’m tired of answering with “well, actually I’m on disability so I don’t actually do anything.” Well that’s total B.S. Anyone on disability knows that being on disability is a full time job. I manage my condition, deal with insurance issue after issue after issue; doctor’s appointments, pharmacies, billing issues, coding issues. It’s exhausting. So no, I don’t do nothing. But all that stuff that fills an absolutely inordinate amount of time – that’s not who or what I am either, any more than my former job was. But here’s the real gem – it doesn’t determine my value either – not to myself, not to anyone worth my time.

Sounds like a bunch of idealistic B.S., I know. Everyone judges right? Wrong. There are people out there who don’t run. Who look at me as a person, rather than a liability or a charity case. There are people who see strength where others see failure or, my favorite – someone “working the system.” Please. If any of those people had ever tried living within the system – they’d drop that opinion real quick. It sucks. I didn’t want this. I didn’t choose this. This is not who or what I am. And it’s not who or what you are either.

So here’s my challenge. Answer. Answer the questions we all dread. What do you do? Tell me about yourself? Who are you? What are you? Leave former careers out of it. Leave disability out of it, if you want. This isn’t about lying or deception. This is about getting to the part of you that isn’t your disability. No one is going to fall in love with your disability – they’re going to fall in love with YOU. So dig deep. I have a feeling you’ve forgotten much of what ought to be in those answers. Let people see you. The REAL you. Not just the labels or the past or the stereotypes. Write it down. Scream it out loud. Tell it to a stranger. Tell it to yourself. Remember it. Believe it. Do. Not. Let. It. Go. Again.

Here’s to truth, denying jobs as identities and to the REAL YOU!

Remembering is a Mixed Bag

Six years ago my fiance died. Every year at this time I struggle to understand what I’m supposed to do. How do I best honor and celebrate his life; how do I best live mine; what is the right way to remember him?

LIVE. There are certain answers that are true for all of us. (us being everyone who’s ever lost someone they love) Somewhere along the way (a LONG way down the road) I realized that the way I honor him is by living the best life I can.  That sounds absurdly simple when you read it, but that came after years of making my life about his life, our life, the one we had, the one we were “supposed to have”, and about his death. I also realized that I must do it for me, not for him (that part took some real getting used to). Each of us who has lost someone must live fully and take comfort in knowing that those who have passed have a beautiful front row seat to watch all of our accomplishments, and that they are with us for each of life’s tougher moments.

The inscription reads: "For a Lifetime of Memories - Valentine's Day - 2001"

REMEMBER. Remembering is a much more personal game. Pictures, shrines, memorials, cemeteries….it’s a mixed bag that is certainly not a one size fits all deal. Six years later, I have consolidated my pictures of Mark to one collage and a couple of other framed photos (the albums not included of course). I save looking through his memory box and mine for anniversaries like this one, and what would have been our wedding anniversary (six months apart, nearly to the day, coincidentally).

FIND THE COURAGE TO SPEAK. What I love most, and what brings me the most joy and comfort, are the moments when I can just sit and open up enough space within myself to let him in and talk to him. It is easiest when I head up north to Rochester and I can sit at the cemetery where his body rests. It’s as if there is a gate there that opens up a direct line to him. It’s such a gift. I can only hope that everyone who is dealing with such a loss can at some point find a similar gateway. I don’t usually offer advice on this topic, but if I have any, it is this: find the space within yourself to let them in and the courage to speak. The rewards are endless…for you and your loved one!

This one’s for you Baby….it’ll always be our song!

Tough Love Sans the Love?

There are times in all of our lives when we have to accept and when we have to dole out some tough love. Sometimes we don’t realize when we’ve become stuck in a rut or when we have been running in circles because our attitude sucks and has trapped us. These are times when we need the people we love to step up and give us a good swift kick in the butt so we can get moving in the right direction again. Likewise, we have to do the same for those we love every now and then.

But when it’s your turn, remember, it’s tough LOVE. It’s meant to be a form of brutal honestynot just brutality. Your goal is to help push your loved one forward gently, not to knock them down with an iron fist. Remember, they are in need of your help because they are already suffering in some way – find a way to be strong and tough without leaving bruises or scars. You can give tough love and still be the soft place to land. Those who are best at it always are.

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!

Where is home?

The concept of home is a challenging one for me. There are so many ways to interpret it. Where I was born, where I grew up, where I have spent the most amount of time, where I
feel most connected to (geographically, that is), where my friends and family are, where the man I love is. If only all of those things could be in the same place! But of course, as the case is for most people, they are in quite different places for me. I was born and raised (for most of my childhood and adolescence) in northern Massachusetts. I went to school six hours away in Pennsylvania. I moved to California, a place I had fallen in love with as a child and somehow “knew” was the place where I belonged. I spent 6 months studying abroad in Tanzania, a place I had known I would go to since before grade school. I lived in New Hampshire while I got my Master’s degree and got engaged. I have lived in Virginia for six years, during the most productive time in my career as well as the most painful moments of my life, and all the moments that followed while I put myself back together.  My friends are scattered far and wide across the country. Most of my family is scattered along the Eastern Seaboard from top to bottom. I am not married. I have not worked in my field for three years. I am in transition. But where will I find myself when I begin the next chapter? The place that feels most like home? (Sacramento) Or somewhere closer to most of the people I love – perhaps here in Virginia?

People always say “home is where the heart is” and “just follow your heart; it will always lead you home.” What if my heart is scattered in all directions, pieces of it residing in the places I love most, California and Tanzania, and pieces fumbling around trying to keep up with all the people I love all over the country? For a time, I was convinced that I could not be happy anywhere but northern California. Then it came time to go, and the ties that bind me to the people on the East Coast fortified themselves, and I chose to stay. The pattern has repeated itself. I find that now I am, for whatever reason, inclined to stay here, though I still ache to be back in Sacramento. My mother always taught me that home is where your friends and family are. I know this is the reason I’m still here. And perhaps it will keep me here. But I’m not sure if it will ever convince me that this place is truly home.

Small Wonders

For all those who have lost loved ones, I hope you find some comfort in these words.

In loving memory of Evelyn Marion Small Colvin and Helen Small Barter

Small Wonders

There are some things, some people,

that are like fixtures in our lives.

We always know where to find them, 

and just how they will be when we get there.

They are permanent; they have a place.

They are timeless, and elegant…

the perfect balance of wisdom, beauty and grace.

Without ever meaning to, 

or perhaps ever knowing that they do, 

they serve a purpose in the lives of others.

They are a sort of beacon about which we orient ourselves,

and come to know our own places in the world.

They serve as a standard by which we measure

not just our own worth, 

but the good of all that surrounds us.

We come to rely on them.

We depend on knowing where to find them, 

and just how they will be when we get there.

But when they move, or are gone, 

it takes time before our own lives make sense again.

This is the time in which we heal.

Marriage…is it about religion, offspring or love?

A few days ago (March 11 to be exact), the Maryland legislature voted to table a bill on same sex marriage. The bill had passed in the state’s senate on February 24 and Governor Martin O’Malley had vowed to sign the bill into law if it came to his desk. The bill now goes back to the state’s judiciary committee where it will stay until the legislature reconvenes in 2012.

I’m going to try to keep this short, but I have some very strong feelings on this matter. Same sex relationships have existed for as long as we have been keeping history. This is nothing new. It is not wrong, or disgusting, or unnatural or any of the far worse words that have been used to describe it. It is also not a choice.

Over the years I have heard countless arguments about why same sex marriage should not be legal. I’ve yet to hear a single one that stands up to even the lightest bit of reason.

Argument #1. “It’s blasphemy.”

If that were really true, and you believe that God made us all, then he wouldn’t have made anyone homosexual. Also, if you take the time to really study the Bible in its historical context, you’ll realize that it tells a story that has  been told and retold over and over throughout centuries and translations, and that if you go back far enough, the truth is that sodomy does not refer to the practice of anal sex. Sodomy refers to the act of rape. Same sex relationships at the time that the Bible was written have been documented to have been wide-spread. The crime was not in the sexual act, it was in the forcing of one individual to participate in that act without consent.

Argument #2. “It betrays the sanctity of marriage.”

Really? Marriage is about the union of two people who love and honor one another.  Whether those two people are a man and a woman or two men or two women, that love and honor is still the basis for the union. It is still cherished and valued the same way.  Betraying the sanctity of marriage is not about the two people who enter into it, but about how carefully they choose to enter into it, their commitment to one another and to their marriage.

Argument #3. “Marriage exists for the purpose of reproduction.”

Oye. Ok, so then this isn’t really a gay/straight argument at all is it? This is about whether a couple is marrying for the purpose of producing offspring. So under those guidelines, if you do not know if you want to have children, or if you are unable to have children, you should not be afforded the right to marry. Period.  And while we’re at it, if you have married the love of your life and have either chosen not to have children or learned that you are unable to have children, you forfeit that right and the state should then come in and nullify your marriage.

Argument #4. “They have civil unions; why do they even need to get married?”

I can hardly address this one without shaking out of my skin with anger and frustration. Simply, it is a Human Rights issue. The minority should not be treated with any less respect, dignity or access to freedoms, rights and privileges. Two people who love each other should be able to choose marriage and all of the challenges, rights and privileges it affords them, no matter who those two people are.

There are other arguments, I know. But those are the four big ones I typically run into. I don’t claim to know everything, but I do know this. The same sex couples that I know are wonderful, genuine people who love each other. And from where I stand, there is not a reason in the world why they should not have the opportunity to enter into marriage, to love and honor one another and be afforded all of the respect, rights and privileges afforded to any heterosexual couple. Currently five states and the District of Columbia have legalized same sex marriage. The tide is changing…slowly, but it is changing. Like all human rights movements in our country’s history, this will be no quick event. Down the road though, we will look back on this and see the error of our ways, and be thankful we’ve righted a terrible wrong.

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