Another page turned,
365 days of memories
fresh in my mind;
like too-thick paint
on an oil-slicked surface.
I wake to the problems
of so many yesterdays,
yet resolve to remain resolute
in my desire to see hope
where I once saw darkness.
It’s hard to lift my chin
and I search my heart for praise
clutching a half-full glass,
trusting it will never be empty-
rather, overflowing with counted blessings.
As I do with poetry, I’m going to explain the thoughts behind the words I chose. I wrote this poem on the first day of the year. I admire those who approach the new year with such a strong sense of hope and excitement for what the next 365 days might hold. I want to hope- I really do, but if hope was a candle’s flame, reality would be the wind gust gathering the strength to snuff it out.
I woke up on New Year’s Day, hoping my heart would feel giddy anticipation for the promise of a new year; a clean slate of sorts. Instead, my consciousness noted the fact there is no clean slate – my slate is already filled with the stuff that’s happened the last year, and it’s too gunked up to be wiped away. Before the end of the year, I received a confirmed diagnosis of the culprit of my younger son’s pain: juvenile arthritis, specifically, ankylosing spondylitis. (He is an amazing kid who happens to turn 10 this week.) The new year doesn’t change the fact I’m left with choices that don’t feel very much like choices at all. The first seven lines of the poem speak to this.
Even under the weight of reality, I still want to hope and remember the ways I am blessed. I spent most of 2015 in a suffocating darkness where I could see no reason for my next breath. I don’t make resolutions, but I do resolve to do everything I can to not go there again. Praise is a chore at times, but I want to trust with all my heart that under the thorns of my burdens lives a joy I couldn’t fully appreciate without the struggles. The last part of the poem is a pep talk to myself to not let my past hog-tie my future and take away my ability to experience joy.
May you find peace today, tomorrow, and the days following- even during trying times. Have a beautiful Wednesday!
I’m so sorry to hear about your son’s diagnosis. I hope that there are effective treatments to help him going forward. Best wishes.
Thanks, Joanne. The medication they are looking to put him on has some serious risks, but I’m praying the benefits outweigh them.
Love the poem. So sorry to hear about your boy’s diagnosis. I will pray for him. Happy New Year.
Thanks, Tessa. I appreciate the prayers for him. By the way, I visited your new blog earlier- I like the positive vibe and the dedication of it to your mother’s memory.
I had a lot of joint and back pain problems when I was in my early teens. There were times I couldn’t walk. The doctors thought it was herniated disc, and, fortunately, the doctor I had at that time didn’t believe in on doing back surgery on young patients and instead prescribed exercise. I started ballroom dancing when I was 16, the smoothness of the dance seemed to help. I probably could have done most any smooth exercise, swimming, cycling, lots of walking, but dancing was fun and the structure and challenge of the training helped keep me and my short attention interested. I really got into it and by the time I was 20 I had to choose between becoming a professional dancer and going to college. I chose the university, but have danced since.
I was still having back problems and it wasn’t until I was in my late 20’s they finally figured out that I have ankylosing spondylitis. My sacroiliac joints are fused, and my spine has spurs, and one doctor was surprised I could walk at all. The last doctor I had worked with me on the ankylosing spondylitis almost 30 years ago told me to ride a bicycle, and that’s how I got into racing. I don’t know if anyone has to go to the level of dance or bicycle riding I went to, but for me lots of activity helped to it under control when I was young, and now it’s slowed to a crawl. I live with chronic pain, but I can and do pretty much anything I want to.
I’m so glad you took the time to share your experiences with Janna . . . it may be just the HOPE she needs to hang on to.
In my case the AS did most of it’s damage in my early teen years and then slowed way down. I had very progressive doctors in the 1970’s to prescribe exercise instead of drugs and surgery. AS is now the least of my worries, but it does cause chronic pain that I’ve learned to live with (strong coffee and exercise are my drugs of choice). However, once you learn what AS can do, getting diagnosed with it can be mentally devastating. I hope my experience will give Janna a glimmer of hope after all she’s been through.
Your story is encouraging, Timothy. I had been told that exercise is important to retain mobility, and it’s great that you found that to be true, even though the issue wasn’t diagnosed until years later. I haven’t encountered anyone with this, so I really didn’t know what to expect, long-term.
I think AS is hard to diagnose because many of the symptoms could be other things as well. My son’s issues started when he was eight – they thought it was plantar fasciitis, then they said it was a growth plate issue in his heel. Then nearly a year ago, a dentist referred him to a TMJ pain specialist and in April, she told me it wasn’t TMJ- his left jaw joint has significant deterioriation. She is the one who suspected autoimmune disease. But even with that, it took multiple trips to the pediatrician and multiple blood tests before they saw it and referred him to a rheumatologist. He also tested positive for HLA-B27 antigen which has a strong link to ankylosing spondylitis, as well as other issues, such as uveitis. With the diagnosis, I read up on the disease and I’m pretty sure his initial heel issues was the first symptom of it. He used to be active in sports but it got to where he had trouble walking so he doesn’t play anymore. We used to go hiking, but now he can go about a mile before he’s limping. It’s been so hard watching the change. He had an MRI just before Christmas and he as active inflammation in his sacroiliac joints and his L5 in his spine. The possibility of fusing has frightened me, but in your story, I have hope that he will be okay. Chronic pain isn’t what I hope for, of course, but I don’t want him to allow this to limit him. He just started physical therapy this week and we’re working on core-strengthening exercises at home. He will be starting on a new medication in a few weeks (he tested positive for TB- it’s not an active infection, as his lungs are all clear, so we had to begin that 9-month long treatment regiment first… after a month, he can begin the other medication.)
I think the most difficult part is seeing him withdraw socially. He says he doesn’t have many friends because he can’t keep up with them… they are running around playing tag at recess and he tires easily. I am hoping the new medication will alleviate the pain and allow him to participate more. (The NSAID he’s been taking since November hasn’t done much good.)
Thanks again for sharing your story, Timothy. I’m not sure many people who read this post can truly relate to it, but I know you get it 🙂
The HLA-B27 is a big indicator. I get heal pain, and have found the supports you put in shoes helps a lot. When I was 8 years old I had a very rare disease in my knees. I had no strength in them and had to waddle around like a duck. It took over a year to get a diagnoses and I was the subject of many medical conferences. I know exactly how he feels on the problem with keeping up with friends, as I couldn’t even do things with friends and had to take a lot of teasing for walking like a duck.
After I was diagnosed with AS, I’ve wondered how much my knee disease was related to the AS. It’s good they are finding your son’s problems early because then you and he can work on finding things that help.
Ballroom dance and/or ballet may be good for him if he’ll consider it. They are smooth, build strength, stamina and coordination without the impact of other sports and more rigorous activities. They are social and a good male dancer is always loved and appreciated by the girls.
I had to laugh at your comment about dancing… I’m not so sure I want him to get the girls’ attention just yet, haha! I was thinking of seeing if there was an evening or weekend yoga class he could do. I think there’s a good chance your knee issues were related to AS. It’s a hard disease to diagnose because many of the symptoms could be other things.
I can see that what you don’t need is another bit of wisdom, or advice, in your comments here. But that’s what you’re going to get. Only it comes from a different, slightly warped, angle. My own! That line ” if hope was a candle’s flame, reality would be the wind gust gathering the strength to snuff it out.” Well, sounds like the flame has not been snuffed out yet. What you have to do is stand between that flame and the oncoming wind. Maybe it will only be a breeze. You can’t wake up and “feel giddy anticipation for the promise of a new year.” You have to do that every morning. Every day holds promise. Take it a day at a time. Your son’s diagnosis may sound insurmountable but maybe Timothy can help you with his story. Ask him if you can email privately. Reach out. He’s a great guy and has helped me a lot- though on a much more superficial level of my photography. I feel for your son, losing his friends. I never had many friends and became quite the loner. I hated it when I was younger, but now I embrace it. I love having the freedom I feel, now. I’m awkward in social situations but have realized that I have other strengths. Sure it took me most my life till now to realize that but neither you, nor he, can give up on life. We deal with what we are given. I live with constant pain, too, but mine came from stupid decision when I was younger. Two motorcycle accidents that resulted in two knee operations that, at times, make it difficult to climb stairs or hike or get up from the ground when I am taking a low level angled shot. I also have chronic back pain that some mornings is debilitating. But I will not take medication and would advise you to please, read up on anything and everything your son is prescribed. There are too many drugs that are lately rushed to market with too many negative side effects. OK, I’m going to quit for now. I hope you can gather some bit of wisdom from these ramblings.
I had my share of motorcycle crashes. One injury was bad enough the doctor said I risked losing my right leg below the knee. I think he was trying to get me to nurse it along and let it heal before I started walking on it and riding again. But I was injured a few days before I started my freshman year in high school, and it sucked so bad to be on crutches the first week of school as a freshman that I ditched the crutches and took my chances. While it can be difficult to live pain free, there are a lot of activities that can make it pretty easy to live with AS or the effects of old injuries drug free. I currently don’t have any prescription drugs, which is probably a miracle given all the health issues I’ve had throughout my life. I rarely take pain meds, but there are times I do take ibuprofen.
BTW Janna. If you and/or your son want to email or call me, my contact info is on my photo site. I’m happy to help in anyway I can.
Thanks, Timothy – I appreciate the offer and will definitely keep that in mind. He’s in pain, but so far, his movement is still good, so I’m thankful for that.
Thanks for sharing your thoughts and perspective, Emilio. We have some things in common – I didn’t have many friends growing up, and I still avoid social gatherings. I was shy and nerdy…my skin was too white, my hair too curly, teeth too crooked, etc., etc. I got used to being alone, and I miss it when I don’t have alone time. My son handles it all well, most days. Three times a day, we’ve been doing stretches that we learned in physical therapy and I’m looking into yoga classes now. He’s also scheduled to talk to a professional about the psychological issues of everything he’s dealing with right now. And I’m praying. A lot.
It’s difficult for a kid- of any age- to feel different. I hope he’s able to talk to a professional about what he’s feeling. And I hope you have found a professional who actually knows what they are doing! And who actually listens!
Still looking for someone… I have to keep coming back to it because there are so many out there it’s overwhelming.
I have the same experience in my personal history. And whatever the doctor’s specialty was is how the patient was diagnosed. I can’t begin to tell you how many different medicines were prescribed. Maybe that’s why I avoid them as much as possible now.
It’s true that some of the side effects are worse than what the medications treat. It’s scary!
Some definitely exacerbate the condition they are meant to treat.
May 2016 bring you many blessings Janna. xx
I don’t have the struggles left over from 2015 like you do, but I have some. I don’t know if you saw my theme for the new year, but it’s based on a quote from r. h. sin: make peace with your broken pieces. That’s my guiding approach for 2016. I can’t stop anything from happening (or not happening), but I can make peace with the things that were less than what I had hoped for, especially those that I don’t always understand. If I can make peace, maybe it will be easier to move on and to be more hopeful about what’s ahead. And of course, it helps to know that others are there cheering us on through the good and the bad.
I think many of us carry residual from the prior year… some years are worse than others. Making peace is a good way to look at the things that happen that are beyond our control. Here’s to a peaceful 2016 then, Deborah 🙂
Best wishes for coping with your son’s diagnosis. Timothy’s experiences with the disease may help you decide on the right approach. In the meantime, wish your amazing little guy a Happy 10th!!!
Thanks, Nancy. I’ve had a couple months to process this (before the definitive diagnosis came in). I’ve cried and felt overwhelmed, now I think I’m ready to do what I can so he leads a “normal” childhood… well, as normal as it can be with all the doctors and medications, etc. Appreciate the birthday wishes… he’s super excited to be in “double-digits” now!
Oh Janna, I’m so sorry to hear of your son’s diagnosis! I’ll keep you both in my prayers
Thanks so much for the prayers, Jennie. I’m hoping it will get easier now that the ghost we’ve been chasing has been identified.
Love the words, Janna, and even more the thoughts of resolve and hope contained within.
My prayers that all will turn out well for Timothy. He is blessed to have such love surrounding him in the family.
– Eric –
Thanks for the kind thoughts and comment, Eric. I hope you are doing well and your new year is off to a joyous start 🙂
Happy birthday to your son! That’s not a fun diagnosis for a ten-year-old, but it helps to have a name for one’s pain. (In my experience.) Praying for the best medical care and help for him. Thankful for Timothy’s experience and hopeful outlook. I trust there is hope on the horizon, rising like the sun to warm you from head to toe.
Thanks, Patti- I appreciate the prayers. The diagnosis does alleviate the frustration of suspecting something is off, but doctors not seeing it. What I hope is that my son will focus on what he can do and not what he can’t, and that this is never an excuse to not try.
With your encouragement, that’s exactly what he’ll do. It took me a while to come to that place. I no longer let what I can’t do ruin a perfectly good day.
I hope so 🙂
I’m sorry about your son’s diagnosis. I have rheumatoid arthritis, and while not the same, I can empathized with what he is going through. There are some wonderful new treatments for arthritis, and I hope your son and his doctors can find the one that can help. I also wish for you the peace you seek.
Thanks, Tara. He will start a new medication soon, and I do hope that there will be some peace in February.
You and David. So many of his Psalms start out with lamenting his predicament. Then he pulls himself together and faces God with praise. Finishes by proclaiming the victory he knows God has in store for him. He is a real person who lived on this earth. A friend of God. You are in good company.
I hadn’t thought of this in terms of David’s approach to praising God, Paula. But I do like his Psalms because of that… I can relate to the despair of falling so short and the amazement that God could love me anyway.
Lovely poem, Janna. Odd how many people start a new year off with scratching still on the slate from the previous one. I know it must be some relief to finally have a diagnosis for your son, and I can feel how scary such a diagnosis might be (for you as well as him). Nevertheless, medicine has made great strides in many illnesses, and I’ll keep praying your son’s case will one of them. Best wishes to him as he moves into the double-digit realm, too!!
I appreciate your prayers, Debbie. The medication side effects and risks are quite scary, but I am praying that those are rare and the benefits will be greater than the risks. Certain things from 2015 are still thorns in my side, so I’m hoping those will be resolved. It won’t be a clean slate, but it’s about as close as I can get.
That sucks! … but now you have something to work with.
That is true, Widdershins… the ghosts we’ve been chasing have been identified.
So sorry of the diagnosis… yet a new year can mean a lot of great things to happen, and looking at the positive side brings more positive harvests…
Good point, Bjorn… looking at the positive tends to shift our thinking so the negative loses its hold on us.
I’m so sorry to hear about your son’s juvenile arthritis. Praying that there would be help ahead, and that you’d find strength for tomorrow.
New year’s is often an anti-climax I find, as it can just feel like any other day.
May your hope increase as you lean on God and take things one day at a time.
Thank you for the prayers, God Girl. I’m just tired and some days I don’t feel like I have the strength to do it, yet I manage to get through each day. Anti-climax is a good way to describe New Year’s- I like that 🙂
That’s hard. Life can feel like an endless battle, hey? Praying for God’s strength and hope as you put one foot in front of the other…
Thanks for the prayers, God Girl.
Happy new year!
And oh no just read the whole post about the diagnosis 😦 so sorry! ❤
Thanks, Marc-Andre. I hope you have a happy new year, too!
Thank you ❤
It’s a beautiful poem, Janna, and it speaks to me of strength – even when times are tough and the darkness has marked us. May your cup never be empty and you get to count all your blessings. Thanks, as always, for sharing with us.
Thanks so much for reading, Mel. I much prefer to see light and hope. It’s just that sometimes it takes more effort, I think.
Peace to you in this time. I’ll remember you and your son in my prayers. Good on you for resolving not to return to the dark times, and for your willingness to take up the chore of praise. I suspect you will not be disappointed.
I appreciate that, Allen. When I remember all the little things that are good, they lessen the impact of those things that cause pain and sadness.
Peace and Blessings Janna and I can relate to the carry over. So my resolution is to let go (try) of all the things beyond my control and like you seize the joy where it is found. I don’t know too much about AS except that it often strikes young males and I so hope for some healing resolution in medicine. Prayers for you and your family!
Thanks for the prayers, TDM. New years are difficult for me because of the expectation of ‘new’ but it’s really just the same old 🙂 At any rate, I hope your new year is off to a good start. Hard to believe it’s already 20 days into January!