Chronic Pain Lifestyle

Love Suffers

     I fail to sympathize with people who tell me about their bad days.  Bad days?  What could possibly have happened, I really can't imagine anything so bad that anyone would have to tell a person with chronic pain that the toll collector took too long to give them change, or that their boss yelled at them.

      I get smoked when I am forced to endure on the top of my pain that some tiny thing in some tiny person's life, that things didn't go perfectly for them today.

    Soon, some of the people with whom I'm enrolled in this pain clinic will tell parts of their stories.  I hope you hear something that you'd like to hear and develop a new connection.

      We're all here to try a novel approach to pain management: since the med's don't work, what would happen if one were to remove all...Yup, ALL MED's?  Could it possibly hurt worse?  We're under the care of a pain doc at one of the world's best hospitals who believes the opposite.  He believes that most of your and my pain will disappear.  Getting to the point of no med's is hellacious.  More follows...God bless us all, Colin

I'm Off For Two Months

     Things happened too fast.  A few weeks ago, i was examined in Baltimore at Johns Hopkins Hospital in Baltimore.  There, they offer an 8 patient comprehensive pain clinic that lasts roughly 2 months.  Yesterday I got word to get my rear-end down there Monday, Oct. 1.  Today is Sunday morning and a whirlwind of activity is bouncing me this way and that.

     How do you pack for two months?

     Coincidentally, I just bought a new mobile phone, a Blackberry, which is either the dumbest smart phone in the world or is owned by the dumbest user on the planet.  Of course, my entire phone book from my old phone wouldn't transfer, so the kids are doing data entry one name at a time.

     Also, our Health care plan changes on ...you guessed it: Oct 1, my day of admittance.  So my wife and I are shooting off to Baltimore not knowing whether or not my new insurance carrier will pay.

     A 2 month program!!!  Oh, I can't get my new mobile "device" to recognize my computer.  I'd like to post daily to fill you in on what the doc's at Hopkins are doing to me; could be a good read.

     Does this sound like complaining?  Truth is I'm just afraid.

     God bless.  How many people would love to have these problems?  Jesus, have mercy...I may even find relief of my pain.  God bless us all, Colin

Finally, Our own FORUM: http://www.careplace.com/group/591

    After many back and forth emails, I've found a great place for us to get together in a forum format!  GO HERE: http://www.careplace.com/group/591

     The sign-up is a snap, and we have managed to stake-out some private ground.  I'll be checking in daily.  Please let me know what you think.

    Since we'll be part of a pre-existing Forum, CarePlace, there will be new people who already are members of CarePlace.

    If you get lost in the site, our group has the same name as this blog, Chronic Pain Lifestyle.  Our rules apply: if it's on your mind, and you want to share the forum is OPEN.

    You may, of course, join with a screen-name to protect your anonymity.  I do not have access to the membership list.

    Don't expect much in the way of my input for about a week, but lob a topic up if you'd like.  God bless us all, Colin

AGAIN, THE URL : http://www.careplace.com/group/591

A Must Read: KATHY SPEAKS UP.

        Regular readers have noticed posts from Kathy, and here's the latest.  Please remember Kathy in your prayers.  Her quiet dignity is only evident when she speaks about herself and her condition; most of her posts are funny.  If you're lucky, as I am, you'll shoot her a note and get to know her.  If you'd like to send her an email send it c/o [email protected] and I'll be sure she gets it.  If it's private, please say so in the memo line.  God bless us all, Colin

PS. Thanks, Kath!

Dear Colin,
Share whatever you want of the following. I hope there are not too many typos.

I've been reading the posts and keeping everyone in my prayers during this last bit of time. I'm hoping Wanda is improving and we are all hanging in there. I have been struggling somewhat with my health and missing my father. It's been one year since his death and I'm echoing the normal refrain of, "I can't really believe he is gone." I know where he is and don't wish him back in his pain-filled body but am selfish enough to wish I could still talk to him face to face. I'm working on a post about him but it is slow going as the tears fall freely and frequently and typing is also hard and painful for me.

I've been having a great deal of difficulty breathing as it has been very hot and humid here. To top it all off our air conditioner died and apparently left a DNR  notice as part of its "advanced directive."  It could not be revived. We had to seek an expensive replacement. With my additional medicines we are really being pinched. I can tolerate being hot, sweaty, uncomfortable and irritable but the AC has become a necessity for me to have a chance of breathing when humidity is high, the air is still and there are air advisories out warning those with breathing difficulties to stay indoors.

I've finally had to admit that the breathing difficulties are probably not just my severe asthma but may be the LAM kicking in. Not being able to get my breath is terrifying and I struggle (ironic choice of a word) to stay calm. Pursed lip and abdominal  breathing, prayer, calming cognitive techniques and meditation are useful but don't help the oxygen intake and CO2 exchange as much as I would like and it is hard not to panic.

God is the only one keeping me steady. Having a disease that is both rare and yet grossly under diagnosed presents its own challenges. Do I take every opportunity to educate the many doctors I come in contact with? Do I speak out and try to tell others who may have the disease and don't know it? Do I try to continue political action for LAM and other orphan diseases? Does anyone else even care? Do I really bother with taking routine health measures when not much is known about the disease and here in Iowa and if I die today maybe not even an autopsy will help them learn just how I died? I try to just keep breathing and recognize only God knows how long I have to live. But, He really cares about what choices I make and how well I care for the body He gave me. I have to keep going for as long as HE wishes me to.

I try not to second guess myself with each sharp chest or abdominal pain. Is it a lung collapse? Chyle and fluid build up?  A ruptured blood vessel or further obstruction of my lymph system or just a blob bursting in my lungs as a cyst collapses?  I just pray it's not a lung collapse and try to rest for a while. The fatigue is so great sometimes. I know that is part of LAM  but think it could also be from many other things including just living the battle we all face in dealing with chronic pain. That daily battle is draining in and of itself.

As for the "regular" pain it continues in many places and I play little word games trying to find new ways to describe it just to distract myself.  I'm sure amongst all of us we could write a lengthy volume containing only descriptive words categorizing our pain. What is a normal level on a "good day" for most of us would drive many people to oblivion in short order. We've long surpassed the 1-10 pain scale, most of us exponentially, I imagine. My hand, wrists and arms have that strange combination of burning fire and numbness/unresponsiveness many have experience and some have described much more effectively than I. You know the appendages are there because they burn, itch, throb and seethe (the word I use when it seems as if the flames of the pain reach out and surely must be visible) but remain numb and somewhat unresponsive when I try to use them. Typing is a particular challenge  and I long for a voice activated typing program that really works.  In brief I'm doing what we are all doing and hanging in there. That is a choice we all make daily. I'm proud of all of us.

I could identify so easily with "Sarah" and found her post moving, disturbing and completely in line with what I experience. The inequities in the health care system are all too apparent when you have run out of options. People use distancing and disdain in an attempt to feel they will always be exempt form inadequate treatment. Considering how many people are just one paycheck away from the slide into poverty and loss of what ever health insurance they had "cornered" it is a short-sighted, foolish way to view others who have run out of time, money and options. It is a national disgrace we have allowed things to come to this stage. I don't know how to change it. I hope we can all come to our collective senses and figure a way out of this mess.

In the meantime, those who are more fortunate should at least keep those of us in the "less fortunate"  category in their hearts, prayers and forefronts of their minds. Being sick and disabled and trying to get even minimal health care takes much more time and effort than successfully accomplishing a full time job that counts as "work." (One you are too ill to work at.) Sarah you have done a great and touching job of voicing what facing those frustrations are like.

I may get to go to NIH in late July for the somewhat reinstated LAM basic protocol. I am grateful and terrified. How much do I want to know about how sick I am? None the less those of you who wrote your Senators and Representatives back in late Feb. and early March have the undying (bad pun) thanks of the LAM women who are suffering with this fatal disease. It made a great difference and while grossly cut, the LAM research will continue in a small form. What they learn about us is helping others with hormone driven cancers, diabetes and even atherosclerosis. Many of the cell proliferation mechanisms are interconnected. They have found insights into and treatments for other rare diseases while studying us. Maybe sometime they will find something to help "Lammies." Meanwhile we LAM women continue to be "lab rats" (since lam cells haven't been able to be grown in any lab animal.) I salute the bravery and persistence of my fellow LAM sisters. Keep us all in your prayers.

That's my update -- hurting, worrying but still breathing and loving with the grace of God.I'm thankful for the many years of love I've had, my husband, great kids and the life I'm given each day. Who needs food, freedom from pain or being able to breathe when I have those gifts? Actually I do but I'll take what God gives me. It's all His to give. Take care everyone. God bless.
Breathe in peace, Kathy S.

Morning Prayers with a Marine, Semper Fi.

       Every morning a Marine, a deacon from my parish visits my home to pray with me, hear an act of contrition and offer me Holy Communion.  Truth is, I'm not always awake.  Some mornings, say after a painful night, he'll shake me by the shoulder, just enough to make sure I'm awake, offer me a blessing, and put the Host in my mouth.  One half of an hour later, I get out of bed with the Host still in my mouth. This comforting ritual, if not always as deeply spiritual as I might hope, is a nice way to start the day, with my first thought of The Father, Son and Holy Spirit.

     Call him Ted and let me tell you about him.  He's a Marine who survived one of those horrific landings in the Pacific (ironic name, huh?) in WWII, survive one particular morning.  His special mornings began almost 60 years ago; a beach landing, all of his fellow Marines killed except for Ted: the lone survivor.  If you've read much history of the Pacific Theater in WWII, you've read of these many D-Days, human waves under blistering fire sent charging-up a naked beaches on some atoll. Naturally, taking enormous casualties, then being called on to do it again and again.  I can't imagine anyone surviving this. 

     He reminds me of this story often. He's never mentioned his own heroism, only that it was a miracle he lived. The way he describes that morning is as if he feels guilty for having made it out alive; on the one hand guilty, yet on the other grateful that of 400 men one day, all but one was killed. 

     Ted feels so deeply touched by this miracle that he's since committed much of his life to helping other people.  He speaks from a faith so deep that he describes Christ as "the only eternal truth in this world."

     If I tell him that my doctors have given me a bleak prognosis for recovery, he's shocked and says, "Only God knows that."  When I'm awake, we chat and I feel "weak" complaining.  This morning though, I confessed to him that not only was I down in the dumps, but was in a lot of pain; really struggling to be a good husband and father and that my faith was waning.

     His idea was that we pray again for my complete recovery.  I lost my temper a bit.  I told him two things: first, that God had given me many opportunities in life and that now, if I chose to see it this way, my pain was also an opportunity.  I'm in pain because He's got some task for me that required my pain.  Then I explained this blog.  I see this blog as my responsibility to try to help people who are in worse shape than I am.  I told him about the beautiful emails I receive from you from all over the world.  Many shock me giving the writers and photographer of this blog far too much credit.  Comments roll in, other blogger sites that I participate on send touching praise.  I sometimes wonder if this blog is one big prayer; certainly not better or worse than any other prayer, just big.  I think I overstepped when I said that I see this post, and every other one in the blog, as a calling.  Sure, we're all hurt here, but we have the chance to offer some goodness.  As with all human endeavors, I and we at this blog sometimes do it well, sometimes poorly.  His will be done...

     The second thing is that my pain is also my penance.  As I've said before, life is good to me; God has graced me in ways too numerous to count...now, I owe. 

     Two birds with one stone that is really two steps:  we write, as best we can to share His grace because we feel pain, which I'd rather not have;  and in my case, penance due for sins long since past and still to come.

      I told Ted I wasn't going to pray for my pain to be lifted.  I have pain because I need it to do as He will have me do.  I'm done now except for one thing: this gentle, faithful tough old Marine said to me as he left, Semper Fi.  I took this as a compliment, particularly coming from him.  I said, Always Faithful. 

     He wiped a tear and thanked me for the strength I'd given him.  I hadn't give him a thing...my back hurt.

     His will be done, regardless of our intentions.  He uses us as he sees fit.  He touches people through us.  God bless us all, Colin

   

A Year in the Life of Chronic Pain Lifestyle And BIG NEWS!!!

        One year ago, Chronic Pain Lifestyle didn't exist.  I'd thought about creating a blog that had a very loose, free and easy, editorial agenda, but didn't know a thing about blogging.  Nothing at all.  I strongly felt that the web already served the community of sick and disabled people with hundreds of medical sites, both informational and through patient forums. But there was a hole, a gap.

    It was the forums where I thought a fresh approach might help people like myself.  I'd been a regular contributor to COFWA, which had provided me with a strong if opinionated support group.  COFWA threw me out, literally tossed me from the membership for asking if any other members had experienced a decrease in sexual activity due to pain.  Apparently there was a rule against the topic of human sexuality.  My post wasn't specific nor was it prurient.  I'm a happily married man with four kids, but struggled to maintain a normal (sorry) physical relationship with the woman I love.

     An acrimonious mud slinging campaign was followed by my being asked not to post again.  I don't think there's anything wrong with that, but felt that I was singled out.  Many people wrote private emails to me offering suggestions.  Others publicly stood-up and asked why this topic was off-the-table when nothing else related to our condition seemed to be. 

     So I created a blog with the idea that any topic or question that might help would be published.  I drew one line:  mean spirited personal attacks against any commenter or writer wouldn't be published. 

     In any case, no one would ever be subjected to "mob" justice.  People would be allowed to post anonymously.  Firebrand attacks simply wouldn't be published.  I wanted to create an "anything that's bothering you relating to your condition" would hit the page.

     If something made you feel good, bad, sad, happy, confused, embarrassed then I consider it germane.  Personal experiences, disappointments and achievements all made it.  Opinions, whether popular or not, were fair game.  Spirituality was welcome, even encouraged as a healthy practice;  lack of spirituality was treated exactly the same way.

     I made wonderful friends.  Anne joined me almost immediately as a co-author continuing to publish her work in a special category, "Anne's Corner".  She's become a great friend and partner in this enterprise. 

      The beautiful pictures that bring life to our posts are the generous gift of Dorothy Gantenbein who gives us the opportunity to use her work.  Please visit her site, www.dorothyphoto.com , you'll be amazed

     Then, Wanda came aboard with her unique world view; I count myself especially graced to have such wonderful people as Anne and Wanda working so hard to make Chronic Pain Lifestyle a special place

     The first week was humbling.  If 8 people stopped in it was a lot.  Compare that now to our regular daily readership of over 100 readers.

     Getting back to the idea of a forum, as a gift from Heaven, I received an email from a woman named Jenny Desmond (Jen D)    at a fantastic forum called CarePlace.

http://www.careplace.com/community/16

      Three things attract me, and I hope you to this lively forum:

1. Numerous open forums on many, many topics, most especially, chronic pain.  I've been peeking at the exchanges from the bushes, and have already joined.  I strongly encourage you to give it a try as well.  We're handicapped on our site by the inability to respond to questions in a timely manner.  No such problem here.
2. Very high quality discussions and numerous responses.  As I mentioned, the board is lively.  I did not recognize many participants since Jenny first contacted me.  Please mention, when you post there, that you were directed from Chronic Pain lifestyle.  If there is enough interest, we'll create a directed link between the pages, so we've got to know when people from here went there.  I think this will create a better Internet experience for all of our readers, AT NO COST.
3. In increased capability to create chat rooms without having to leave the site.  This will allow us to schedule interactive live events, public and private, with ourselves and Doctors, Lawyers Accountants, etc. on topics that are specific to us.  Since we'll have screen names, anonymity is guaranteed.  Feedback on this topic is greatly appreciated, so please let me know.  Several well known authors have already expressed interest in speaking to our group.

     But, the proof will be in the pudding.  Jenny and I are hammering out the final details, but if you want a head start, sign-up and go.  Please keep us in the loop.  Obviously, the greater the number of participants attract more widely known experts.  Hoping this works out, even for one person, I am, Colin.  God Bless.

I'm Praying as Fast as I Can.

       Dear God,

         Hi, God, it's me, Colin.  I have a question for you; I know, I should know the answer by now.  If I say a Hail Mary, but don't think about what the words mean or how those words are significant today, is this a prayer?  What if I just mouth the words but don't kneel, is this a prayer?  Do the words have to be said out loud for this to count in my "lifetime prayers total?"

     Is it a prayer if I smile at my wife?  It's a rainy, cool day, my favorite, and I smiled this morning when I woke-up and looked out the window.  I didn't thank you, but I was happy; is this a prayer?  My eldest daughter is going to college next year and just yesterday she stayed home from school; we had breakfast together.  Did you make this happen?  Glory be...?  (Is that a prayer, too?)

     I'm writing this because I pray more now than I used to.  Reflective moments often become transitional thoughts that progress from reminiscence to happiness leading to gratitude praising Him for all of the wonderful times, special people and unique gifts that have been bestowed upon me.  In this respect I'm not unique.  A beautiful hymn, "Precious Memories" offers thanks to God for all of the quiet and loud special moments in our lives.  That hymn makes me teary.

     I think this is a function of age.  I turned 48 last March; 48 wonderful years.  Just like all of us 48 years of ups and downs, births, marriages and deaths have passed through my life, but I feel old.

     How many Thanksgivings remain?  Who's next for the train to the sweet by-and-by?  How many more seconds will tick before my first grandchild is born?  Which of my Children, I've got 4, will marry first?  My wife, Karen, is on the fence concerning if when and where we'll retire.  Will she finally agree to move to New England?  Will I spend my twilight years on a porch overlooking the ocean, drinking coffee and shooting at seals?  Will Fred Flintstone and Barney Rubble finally compete against Ralph Cramden and Ed Norton in a game of cheater's Monopoly?

     It's a hell of a good life despite chronic pain.  Thank you, Lord and may I continue to expand in my capability to live in the splendor of your world, thankfully praying and learning, finally to love myself and others as You will.  Despite the pain that rips the fabric of my life, help me mend the lives of others not forgetting that You have erected a "Bridge Out" sign on the road on which I'd been traveling.  Give me the strength Lord to change directions, change with my surroundings and with constant pain as a new companion, find a way to offer-up my pain to help others who suffer more than I do.

     I just read Wanda's piece.  I think it's humbling, do you?  God bless you girlie; prayers for a good outcome to your upcoming surgery.  Annie, you'll crush these sons of bitches who are causing you misery on top of your pain; you've come too far for anything else to happen.  Kathy, thanks for the kind thoughts and emails; I pray God you get a satisfying breath every now and then.

     Hi Val.  Please send me another picture of the happy little pup; the last one didn't show the face!

     A long list could follow; it should follow this short one. People, His servants, angels to me, I've come to know and love in just one year.  God put all of you in my life and I'm a lot better off for it.

     Holy God, of course the silly questions I posed at the begining of this article don't matter a whit.  What matters is saying thanks, to You, and to each and everyone who has read this little blog.  You're all helping me get better. Bless all of you, Colin 

         

An Open Letter to Kathryn--A message to COFWA

    This letter is to a woman who sends great emails.  I hope Kathryn, that you read this.  I've tried email but my letters get kicked back.

   Dear Kathryn,

           I'm sorry for being such a terrible correspondent; you've nonetheless sent me many funny, sad, touching, and hopeful emails over the past few months, yet I rarely respond.  I read every one of them.  I wish that you would accept the invitation I sent you to post these messages on the blog.  I understand if you don't want to, but in that case may I post them without using your name?

           The greatest gift I receive writing this blog with Anne and Wanda is the people I meet, like you.  Straight from God, people like you have found your way from my in-box into my life.  It's miraculous how many people write to me, from all over the world.

           I hear about their triumphs and struggles.  I know about their families as they know of mine.  Sometimes they're lonely, or so beaten down by pain, that they despair.  Who could blame them.  I often write about faith, or perhaps a state of grace.  I deeply hope that everyone finds the contentment that I know He wants us to have.

            I started this blog immediately after I'd be heaved out of a chat forum that was a place of friendship and comfort for me.  I decided that since all of the people who seem to be afflicted are mature, that any subject that relating to our maladies was fair game.  If a reader was offended, they simply had to "turn the page".  I thought this blog would be a place where we could talk honestly and openly about anything that bothered us.  I couldn't have been more wrong.

            We become something else entirely.  It still hasn't been a year, but nearly 12,000 people have read our little blog, which also happens to be ranked 80,000th out of 55,000,000 blogs.  It's become huge and I still know nothing about technology.  My friends and readers are from nearly every country in the World.  That's my gift.  And I meet five new people a day, each with a unique story.

            It's a cool, crazy, beautiful world.  Again, I invite you to join us.  Your message is yours.  If you wish to share it, you have complete control over your content.  We don't make money.  We get the rewards I mention above,  God bless you, Colin

----------------------------------------------------

Dear COFWA members,

     Each and every one of you has a story to tell.  I've come to believe that nothing happens coincidentally,  Should you ever wish to write your story here, you are welcome to do so.  You folks carried me through that awful first year.  Please drop me a line at: [email protected].  write COFWA on the message line.  You may write anonymously. God bless, Colin

The Mother of Invention

    You never know what you are capable of until you do it.  Years ago I had a mentor at work who became increasingly frustrated with me because I was always asking his opinion.  This went on for months; I'd have an idea, but before doing it, I'd run it by him.  Finally he blew his stack.

    "How should I know!" he bellowed.  "JUST DO IT!...For Christ's sake, do it...screw it all up, fix it and make it work.  I don't pay you for thinking, I pay you for doing."

    In these pre-Nike days, this was, the most brilliant piece of advice I'd ever heard.  At times I was a human wrecking-ball and at others, a genius.  Think about it, it's so simple.  My reputation became special.  I was a "get it done" guy.  I also learned that my mistakes were quickly forgotten.

    I was freed from the fear of messing things-up and rapidly became a leader.  This simple piece of advice, once I put it into my toolbox, made me wealthy.  I'm not saying this to brag, but instead to point out how rare the "doers" are.

    I've never failed to encourage the people with whom I worked to act as I had been taught.

    Now think about two other things: this blog and lastly, you.

    When I was diagnosed with arachnoiditis and fibrosis of the spine it was a relief.  Prior to that i didn't know what was wrong with me; something that caused me to become inert.  Pain is pain, but this was something totally different.  A whole new scale that was of such a severe magnitude that i became unable to follow-through on the simplest of tasks.  I also began to become afraid that I'd lost the will.

    I joined several arachnoiditis forums and was promptly tossed.  It's no small thing to get eighty-sixed from a self-help group, but I managed it.  I hated the snivelers and whiners, and they hated me.  But there wasn't one darned page in the entire sphere that I could find that was devoted to fixing the little things that make-up our lives; there was no hope; no fun.  Sure we have problems, boatloads of them, but I wanted to talk to people who still wanted to have a rich, fulfilling life.  People who found happiness, joy and contentment, despite pain.  So I made this blog. My co-writer, Anne, joined me and we launched in May, '06, neither one of us knowing a damn thing about how to build a blog.  We messed it up...colossally.  We still do.  But we do it.  Imagine, there was a group of people who felt as we did.  We found readers!

    By many measures, we're doing very well.

    Now, how about you?  Think of a time when you were a kid, standing on a bridge over a lake, waiting to build-up the courage to jump.  Why not?  What could happen; you get wet?

    Count to three, but jump on two.  God bless, Colin

A Young Woman's View of Her Father's Illness

     As the New Year awaits sunset, I share an essay my 17 year old daughter, Sarah, wrote on her college request for admission to Amherst College.  I ask myself, "How much more love can be visitted on one man?"

“Young as she is, the stuff
Of her life is a great cargo, and some of it heavy:
I wish her a lucky passage. "
From The Writer by Richard Wilbur,

Amherst

Class of 1942, 1987 Poet Laureate of the

United States

 

            

            I will never again mistake one of life’s ordinary, everyday inconveniences for a genuine problem. My life was close to perfect; I had never experienced hardship of any kind, and my family and I were happy. Before I really had a chance to appreciate my life and my family, everything changed. Three years ago, my father lived an ordinary but happy life. He got up every morning, put on a suit, and went to work. On the weekends, he usually ran back and forth between the different sports games that my siblings and I played in, and when it was warm outside, he and I would play catch in our front yard for hours. On one snowy day three winters ago, everything came to a screeching halt.

            On that infamous day, several inches of snow had built up and frozen on our roof, and the ceiling in my parents’ bedroom had begun to leak. In an attempt to get the snow and ice off the roof, my dad, who was home with only my younger brother, leaned out a window and tried to smash the ice into pieces and knock it off the roof. When my mom, my sister, and I returned home, we found my father lying on his bed in absolute agony. He had thrown out his back trying to clean the roof. Three failed back surgeries later, he is now disabled and must deal with a back condition called arachnoiditis that will not ever improve. He is forty-seven years old, and the life that he once led is over. Life for my father is now a daily battle with pain. My strong, fearless father now spends more time lying down in bed than doing anything else.

            At times, I cannot even tell that my life has changed. I still spend my days at school, doing homework, or going out with my friends. However, there are moments when I cannot even remember what my life used to be like because so much has changed. The past three years have forced me to grow up very quickly; I am no longer a child, for instead of allowing myself to be taken care of by my parents, I must help provide the care. I play a major role in caring for my younger siblings; I have to help drive car pools, supervise them while they do homework, help them get ready for bed, and make sure their everyday lives run smoothly. I also have to care for my father who needs help with even the most ordinary of tasks, such as driving to the store or making himself lunch. There are no lazy weekend afternoons playing catch, there are no family vacations, and there are no trips to the movie theater because my dad cannot even sit through a movie. Business as usual does not exist; there is nothing normal about the way our family functions now. The truth of the matter is that my dad has a problem that none of us can fix.

When I look at my father, it is impossible for me to complain about my life. He has to experience pain all the time without any real form of relief. I have my entire life ahead of me, and there is no telling what may be in store for me. My father has the rest of his life ahead of him too, but he knows exactly what awaits him. He works to find ways to carry his burden each day, and he does so without self-pity or complaint. Although both our lives are now so very different, my father has taught me that we are still blessed. We have come to appreciate the extraordinary comfort of life’s ordinary pleasures. Despite how heavy our cargo may be, it cannot sink the ship. We will find safe passage together.