Poker – Playing the Hand that Pain Deals You

Poker – Playing the Hand that Pain Deals You

By Katie O’Leary

There is a common phrase thrown around in regards to invisible illnesses.

“You look fine.”

Katelyn O’Leary

This is a phrase has been the catalyst of so many rage spirals I cannot even keep track. Life is so cruel, unfair, and completely screwed up. But in this game of life, we each have a deck of cards. Playing cards that represent who we are through other people: our families, friends, work, memories, and the significant others who decide to pay or play.

My deck has always felt short. I am missing a Queen of Hearts and a King of Spades. Cards one through ten are spread out all over the world. Too many Jacks have played, and my heart and soul has been ripped to shreds from it. We win over the other cards, through chance, luck, or strategy. And we hope that those cards will stay in our possession, and make our night richer and better than ever. And just when you’re about to cash out, and you think you’ve finally found the winning combination of great luck and being in the right place at the right time – someone plays a joker card. And you lose that great hand. That hand you were going to plan your future with. The hand that was going to give you a tomorrow, provide security, understanding, and maybe even a family.

This is why I hate poker. I lose and lose and I have never understood the rules. The cheat. The “tells.” How I should have known how easy it is to lose your heart and for it to be clubbed into shreds. How my life has never been about winning – only surviving.

I see these people at casinos. Skeletal wisps of people, holding gallon jugs of coins and playing the slots. Alone, dirty, restless, and completely addicted to the idea that love and fortune is only a quarter away. Pain and destruction are also only one choice away.

I believe in fate. But I also believe we have a hand in our fate. I look back at all the decisions that brought me to California, to Keck Hospital. How I finally had health insurance and a good job, one that allowed me to get my hip checked. A job that allowed for a surgery to fix my hip cartilage. A surgery that triggered the end of the life I knew, and into the life I have now: a confusing mess of disorder and disability. The rage so intense, the berserker inside me is like a poisonous monster. I try to keep it locked up and tidied away. Always be positive. Don’t let it get to you. Find a way to cope. Find a way to remember the people in your life who matter. The people who see that monster in your eyes and recognize that it isn’t really you – it’s a growth. A cancerous growth of denial, rage, grief, and the realization that you will never be ok again.

How does anyone move forward with this? There is no drug for self-hatred and for the wandering mind on how your life will never be like anyone else’s. And maybe that’s true for everyone, but the real irony is that I have a nerve disease that will not kill me – but I most likely cannot bear children. And at the same time, a mother figure to me is dying from a nerve disease – and she sacrificed her own life and health to bring her children into the world. She knew what her future was, but she also looked down into the eyes of each of her children and she felt overwhelmed with how much she loved them. The tremors, the shaking, the pain was all worth it for the chance to create something so beautiful and rare: a family.

And then there is me. I’m not like this other mother. I haven’t fallen in love and married my soul mate – someone who has supported me all through the terrifying hospital visits and the loss of function in my leg. And I am scared beyond measure to try again. To try and find someone who will see my life and won’t be terrified of the possibility that I might need them more than other girls. That my problems have appeared in my 20s, and not in my 90s, like we all hope and plan – and that he will have to grow up too soon and take care of me.

But I already played that hand.

All I know is that life is a game of strategy and chance. I may be bad at poker, I may have played my best hand, the one I thought was IT, but I’m just playing the wrong game. I have to stop sacrificing myself and my feelings for people who are supposed to be “adults” in their mid-thirties, who cannot handle serious conflict because their lives were so much luckier.

The only game I am willing to play now, is RISK. I will move forward. I may lose conquests and suffer – but I know what is in front of me now. It may be darker and screwed up, but it’s my board. I’m not willing to lose just yet. I’m not going to retreat. And I’m going to take care of me, and not anyone else.

Game Over.

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Authored by: Katelyn O’Leary

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Debra McDonald

Wow, that was perhaps more eloquent than any other I’ve read here. If you don’t write for a living, you should. We need a voice in Washington. People who don’t have a clue what we are all go through every day are legislating what we can and cannot use LEGALLY to deal with our agony! I wish this author could take our cause to the people who really don’t know what their actions are doing to our quality of life. Please Ms. O’Leary, don’t ever give up! I didn’t meet my soul mate until I was 45 and I thank God for him every day.

Maureen

Katy, excellent writing and analogy. Thank you.
I relate to how you put our CP plight and you reminded me that once again…. Living in pain is tough and it is okay to keep focus on ourself and not stress over trying to exhaustingly appease those who have no empathy nor compassion for what we endure.
I had an old friend visit this week. I hadn’t seen her in 3 years. I stressed my body out to ke my head above water the whole time she was here but the day she left I fell apart with pain and exhaustion. Lesson learned, once again.
Keep strong.

Danny

Katie O’Leary, I am hurting for you so much. I’m hoping that by not looking for a “soul mate” anymore, one will unexpectedly come into your life and love you and care for you, like you deserve. I played the cards I had and that’s what happened to me. But, be careful what you wish for. After I was electrocuted in 1991 and had my life destroyed by the fried nerves and brain damage from the electricity at the age of 29-years old, I knew, without a doubt, the I would never find my “soul mate”, because the intractable head pain kept me in dark, quiet rooms 50-75% of the time. How could I find someone? Then, during one of the few times I was able to get out, I was with my brother, former sister-in-law and my toddler nephew (who has turned out to be my best friend and pseudo-son) in a restaurant when, from across the room, my eyes locked into the eyes of a girl from high school that I’d always wanted to date, and she happened to be recently divorced. We instantly connected and we’re were married within 2 years. She was such a wonderful caregiver – patient, sympathetic & supportive. I had something I never thought possible. Then, 10 years later, she was diagnosed with breast cancer. A single mastectomy was required. There were about 10 months of complications that caused her significant pain that her surgeon waited to fix. By the time he finally fixed her problem with another surgery, she was addicted to pain meds. Not like me, where I’m DEPENDENT on my meds. She was addicted in the truest sense of the word. Because of my damaged brain, my memory is terrible. It took years before I realized that she was stealing meds from me. No matter how I tried to “hide” them, she found them. I finally got a safe and that helped, but when I was having my worst pain, I’d take several doses with me to my pain room and, if I’d fallen asleep or had to leave the room for some reason she concocted, she’d go to the room and steal some. This has been going on for 10 years now. I’ve threatened to leave, I’ve orchestrated an intervention with her family, but nothing has worked. She stole from me today! Party my fault, of course, but it’s an unbearable situation. I now am envious of your situation. I wish I was alone. But when I took the marriage vows, I meant every word. So, I’m still here, trying to get her well. I guess my point is that there is always someone who has a worse situation. My pain is brutal, but I have 2 close friends fighting cancer. My best friend is dealing with pancreatic and liver cancer. It’s just a matter of time for him. He has a daughter he adores. Why do I suffer with so much horrible pain that’s not terminal, but my… Read more »

Cheri Furr

What a well-written, coursgeous, heartbreaking but inspiring story. I have had CRPS for 17 years and know all too well what it felt like to come out of surgery and feel like I had Samurai seords stabbing my inner leg and foot. I wondered how I could possibly be having pain there; after all, I had abdominal surgery! No medical “professional” or I would know the answer to that question for six months. After being sent for physical therapy and then to the Pain Clinic for nerve blocks over five months, I was told they didn’t think they could help me. Great, I thought. Meanwhile I had lost my job, my work friends who all commuted from different towns, my independence, been forced to apply for disability, could not drive, no longer had any kind of routine, and was mentally broken. I had survived rheumatic fever as a child, had my first surgery at the age of 14, was in the hospital with bacterial endocarditis for six weeks at the age of 18, and had already had five other serious operations since then. Each time I recovered within six weeks. Nobody understood why this time was different, including me. A neurologist diagnosed my CRPS after six months, and I got a second opinion from another neurologist who concurred. Then it was a year of experimenting with different treatments and therapies, all to to no avail. I began psychiatric treatment for depression. It’s been a long 17 years, but I fight every day and have accepted it. I was lucky, though, because I had already had my child, who was a senior in high school. She came home and laid on the bed with me every afternoon after school. I was able to see her play volleyball and basketball because her school was right across the street. And I have a wonderful husband who has helped me every day. I was granted SSA disability by a judge on my third try. I still have medical insurance. We had two incomes and had already saved enough money for our daughter’s college education and for her to have a big wedding. I’m grateful and realize how fortunate I am every day. But no one still understands what CRPS is, and I’m still told I “don’t look sick.”

Tim Mason

I love this article. Great thread! I have found a life without friends to be very good. Just acquaintances is fine for me. I am still working for now though. Shortening my work week to 4 days or shaving off an hour a day.
I do still get the morning greeting “Good morning, how are you?” or “Did you have a good weekend?” The thirty y/o and under are the worst. They mean no harm but some know my condition and that an occupational therapist has made several visits in the last few months to check on me.
I have an office and the EHS officer accompanied the nurse that came by on the initial visit. She began by asking me some HIPPA sensitive questions and I could see the EHS guy out of the corner of my eye with a black book starting to write as she spoke. The EHS guy is 34 and naïve to chronic pain and medications. I gave him a sharp look and he got up and left. If they can get your verbal PHI they your HIPPA info is free game. (Beware of this if you are still working). By the way, I am the oldest guy in the research lab at 59, have a handicap parking spot and use a cane as the week goes by.
I have been working a long time and know that you have no friends at work.
I find myself meditating on where I am on the spectrum of life.
Time is money and time is something we cannot buy.
I was thinking of starting a local support group and meet for coffee and cake and discuss our issues. Hard decision. I do have my aging hounds (wiener dogs) with gray faces that understand what I am talking about to them. I know they know because they wink back at me on particular questions.
Be well,

david

Katelyn i enjoyed your creative and insightful thoughts on playing the game and using the cards in dealing with pain. I think with time and determination people can and do become better at the game and i believe you will soon enough master the game.

Rebecca Belcher

Dear Katelyn,

I understand. I’ve had 3 failed cervical fusions, an operation that left my left arm/hand paralyzed by a doctor who lied and told me I had come in that way.

I’ve driven people away just because I’m in pain and it’s easier to not pretend to be happy. I hate when people say, “God only gives you what you can handle.”
“What doesn’t kill you will make you stronger.”
People try to understand. Normal people with supportive spouses, families etc. But we know they cannot understand. At the end of the day, it’s just us, alone to face yet another day.
Or the pain doctors whose offices are filled with people in pain. They look at some of us as “drug seekers”. Addicted to drugs that offer bandaids of relief.

I ask myself, why me? But, I guess why not me, right? Would I give this condition to another person? No.
Did I do something wrong to deserve “this hand”? No.

Am I angry? Yes! I’m angry. Then it boils down to a choice. I can choice to wallow in my pain and self pity or get out of bed and try to do something productive?

Some days, I choose the bed. Some days, I see something positive. We are a resilient lot. I have found I have much more empathy for others.

Did I choose this? No. Would I choose this to learn empathy?
Hell, no. It’s a choice. Every day is the same choice. Do I make this a positive day or a negative day.
Some days simply suck and I feel alone with my pain and anger as my closest friends?

Just realize, you are not alone, I get it. I admire you. I do understand.
I’m sorry. Do you play the hand or fold. It’s a daily choice. God bless you and all those in pain who are suffering today or tomorrow.

StevefromMA

You really put your story out here, Katelyn, and it’s pretty tough. I hope you can make things go your way whatever life throws at you in the future.

Jean Price

Wow…this article really touches the personal dark sides of pain and life limiting illnesses which CAN AND DO eat away at us! It’s like a black hole that can consume our lives! And it’s something I believe we all struggle with at various times in our lives with pain and decreased functioning! I was really fortunate to have some great teachers in a job, BEFORE my pain started. They helped me see myself…and others…differently! What I learned was “supposed” to aide me in helping other people, mostly seniors who were facing losing the ability to totally care for themselves! Yet, it ended up being MY saving grace, too! (I have always thought that pain and the things that cause pain can be like instantly aging..being unable suddenly to care for you most basic needs and king through many similar losses!). So, I will gladly give what I learned to whoever wants it here…even free of charge!! In the hope it can be a light in that dark hole we visit from time to time! The biggest thing I learned was about WHO I really am! Every answer I could come up with to this question was directed at what I DID, or what I worked at, or what described or defined my life situation…but not me! I even tried to say the things I really enjoyed (doing !) were WHO I was!! But there was that “doing” word again, so none of my “roles” were a good answer either! They were just “jobs” or tasks I had in life, and they all involved doing!! So every answer I tried to give was way off base!! Because….WHO I AM isn’t about DOING anything! It’s just about BEING ME! A one of a kind ME! I finally realized it was impossible to come up with any phrase or sentence which fit my “being”…and wasn’t about “doing”! I think I tried them all, and none worked! I am a nurse…nope, that’s what your job is! I am a a friend….nope, that’s just a relationship you have! (Hmmm, so I can’t put mother or wife or daughter or neighbor in there either, right!? Right! Those are all just roles and some are even just temporary!). Then okay, well, I AM a hard worker….no again….that’s just one of your values you live out! So, I AM NOW A person who lives with pain…NO, wrong again….that just says something about what you have to deal with in life, something you live with which, although it does impact you a lot…it’s not about WHO YOU ARE, NOT AT ALL! So , who am I, then.! (And who are you?! Do you know?). Finally, one of my teachers was kind enough to GIVE me THE answer! It turned out to be an ANSWER that fits ALL of us! One we are born with and die with…one so true and assured that nothing and no one can change it! Ever! It’s pretty simple really! The hard part is believing… Read more »

Ben Aiken Longtime

Thanks for removing my thoughts, are u anti…..religion!

Eve Rios

Katelyn. Thank you for sharing this story. It’s so well said. It mirrors my life and helps me continue forward knowing I’m not alone in my fight for living. Thank you!

Ben Aiken Longtime

Life IS a game of chance, and we have to play the “hand” we are dealt but, when the deck is stacked against you, the non chronic pain patients, I’ll call that a misdeal! I have played my “dealt” hand for a long time. I’ve taken the bad hands and overcome it the best I could, and I’ve played the good hands and enjoyed it while I held it. When the “dealer” is crooked. a liar, a blackmailer, and is dealing off the bottom of the deck, we can’t be dealt an honest hand. Once upon a time if the “dealer” was dishonest and “caught”, the dealer was shot! The CDC “mis-guided-line” is killing people and causing much unnecessary , avoidable, treatable, non cancer chronic pain. How long and how many people must suffer and die before the “mis-guided-line” is realized as a poor way stop illicit drug abuse? We, the chronic pain patients have been living a “tough” existence BEFORE the “mis-guided-line” was enforced. The care of any patient, chronic pain oriented or otherwise needs to be treated on a personal, individual basis. Patients with mild arthritis that has evolved into opioid treatment may not need 3 -80 mgs of oxycontin, per day. However, some health conditions due to the nature of opioid medication and after years or decades of treatment need the proper medication AND dosage as per their level requires. Sufficient medication for a chronic pain patient must be left to the professionals. Yeah, some “guidelines” are in order because the chronic pain patient is never completely free of pain therefore a limitation of intake of opioid medication is necessary. However to crucify ALL chronic pain patients with the same dosage of remedy regardless of their medical issues/history pertaining to their personal health condition is ignorant. WE tend to kill those who are blameless along with the guilty. The best case scenario happened to a JUST man, a little over 2,000 years ago. I won’t ever forget it.

Denise

Those of us with chronic pain have been dealt a crappy hand. I, too, could not have children. Hysterectomy at 33. Fibromyalgia entered my life 13 years later. And here it is thirteen years after that. Disabled, lost home, career, my own business, husband who “just stopped caring about me once I started getting sick.” I’ve lost everything, including life’s savings. Hard not to be bitter, Just want to be better! Now I try to find joy in the little things. I keep remembering the phrase, “No one said life was going to be a success only journey…”

Debbie

Sso thought this was an excellent but I did not like the description of the people playing the slots. It is very mean spirited.

I’ve had cronic pain for over 20 yrs ive seen specialist several of them I’ve had Dr an injections of all kinds steroids everything pain meds I can cope and live now people who are taking pain meds is said to cause this heroin addition it’s sad old people who have injuries like myself all the injuries and cancer and I have to hurt and try to believe it’s just addiction I don’t think it’s addiction I’m sorry but I hurt so bad I thank whoever is venting my opinion drugs has been around for years people saying pain med cause heron I don’t understand that

Tom Sorrell

You come 1st Always…okay
And with my chronic spine pain,
I come 1st too.
You are not alone.
I go thru same as you.
I have no social life because…well you know why. To the both of us,
Tom