A Northwest Lens On Myeloma: Recapturing My Passion

At the end of my previous column, I explained that the title of my column, “A Northwest Lens On Myeloma,” refers to where I live – the U.S. Northwest – and one of the passions in my life: photography.
I started seriously shooting photographs in 2009. By 2011, I was printing the best of my work and showing it regularly at regional art shows – first for judged prizes, and then for sale to the public.
Unfortunately, my myeloma diagnosis in 2015 significantly cut into my ability to participate in art shows. Between the time lost to appointments and the precautions necessary to avoid infections, particularly as I got further into treatment and closer to my transplant, I was unable to take part in as many shows as I had in the past.
Sadly, I also allowed multiple myeloma to interfere with the act of creating my art, and there is no excuse for that.
Most of my photography focuses on nature and landscapes. There are many reasons for this, but the simplest may be that I enjoy getting out by myself, often before others are out of bed, to take in the beauty of nature.
My wife and I regularly spend vacations and long weekends at the Twin Lakes in northeast Washington, and that is where I draw much of my inspiration. When I’m out shooting alone, I’m able to absorb nature, examine the light, and concentrate on interesting compositions. My full attention is on my environment and the photograph I’m going to create. I don’t think about work or other issues that may be vying for my attention in the real world.
Simply put, photography is very therapeutic.
Understanding this makes it all the more ironic that following my diagnosis I found it incredibly difficult to get out and shoot photographs on a consistent basis. I explained in my first column that the shock of the diagnosis – the fear and anxiety that I felt – paralyzed me and separated me from doing the things I loved. Photography was one of those things.
I knew intellectually this was happening, and my doctors and family encouraged me to reengage with my work, but I didn’t.
Up until my stem cell transplant, there was no physical disability preventing me from getting out as often as I had before my diagnosis, but I just didn’t feel motivated. I really can’t explain why I let multiple myeloma deprive me from enjoying a great passion.
I can only speak for myself, but I’m guessing other patients have found it difficult to engage in activities they enjoyed before myeloma impacted their lives. I think it may be natural to let such a dramatic change in one’s life deprive you of otherwise joyful things.
I know this isn’t true of everyone. We just need to look to the inspirational biking adventures of Ron Harvot and others in the Beacon’s discussion forum (here, for example, is a recent biking update from Ron, describing a 100-mile race in which he took part). I’m afraid I’ve not been so energetic, but I intend to change that.
Recovery from my recent stem cell transplant still prevents me from going to art shows, but I can return to producing my art. In fact, I have all the incentives I need. It is important for me to get out and walk and get some light exercise. Fresh, clean air is good for me. Quiet contemplation of nature is, as I said, therapeutic and helps me be more mindful of the beauty of each day I’ve been given. Maintaining good mental health and staying happy is one of my best tools to fight this disease.
I have every reason in the world to regain my passion.
But it’s not enough for me to say it. I must do it. And that’s where this column and you, the Beacon’s readers, come in.
I plan to include a photo with each of my columns. I hope to share something that is at least remotely relevant to the theme of the day. This may be harder with some topics, but I’ll try.
Also, because it is an important part of my life, I will occasionally update you on my photography.
I encourage you to hold me to these goals, to challenge me, and to help me make sure these are not resolutions that are easily broken.
In turn, I challenge you. Look at your life. Have you allowed multiple myeloma to rob you of one of your passions? What do you need to do to recapture that?
This cancer has taken so much from us already. We can’t let it deprive us of everything that makes us happy. There is so much in life I no longer control, but I have not lost control of my photography. I am determined to recapture my passion.
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I took this photo of the sunrise breaking through a tree in May 2016 during the break between my induction therapy and my stem cell transplant. It was one of the few early mornings that I got up early and out to shoot photos like I have in the past. The image is a great reminder to me why I love doing this and how rewarding it can be.
Photo copyright © 2016 Mark Pouley.
Mark Pouley is a multiple myeloma patient and columnist here at The Myeloma Beacon. His column is published once a month. You can view a list of his columns here.
If you are interested in writing a regular column for The Myeloma Beacon, please contact the Beacon team at .
Mark - Thank you for this great column. I am a caregiver; my husband was diagnosed with myeloma in April 2015, the same week that my father was hospitalized with an infection (and he passed away shortly thereafter). My husband, thankfully, is doing much better these days. I am a painter and the events of last year have left me somewhat bereft, and it has been difficult for me to continue to paint and pursue my passion. Even when I have the time, I'm just not feeling it. I appreciate your "challenge" to not let these losses continue to rob me of continuing to engage as an artist. I will work on it! Thank you.
Thanks for the nice column about your photography hobby! Maybe it is more of a profession by now too. The photo you posted is beautiful. It is nice to have an artistic hobby, I think, since it does draw one out of oneself and into a creative world. I like fibre arts, sewing, knitting, embroidery and the like, for the colors and textures.
Mark, thanks for the incredible photo and for your column. Made me cry because I have totally lost track of what made me happy before diagnosis. I have gotten back to work, which I do love, after treatment and and my stem cell transplant. And I have ramped up on exercise since the transplant, running a half and a 5K. But I don't remember who I was before diagnosis. What did make me happy? Yes, work and exercise. But also just a zest for life and the freedom to live carelessly. I have to think more about this. Thanks so much for bringing it up.
Rebecca
Wow, that is a stunning photo, Mark. You should definitely keep up with your photography! I love photography but have no experience. Maybe I should learn more about it and start doing it. Thanks for the encouragement!
I just want to thank you for the beautiful picture. My husband is 5 months post transplant with only a partial reaponse and now on daily Revlimid. He thought your photograph was beautiful and it has inspired him as well as me. Thank you for sharing your story. We will not give up.
Good luck in your journey. I'm almost 10 years post diagnosis. I live for the ups and tolerate the downs. Travel is my passion, and I've had the best trips since diagnosed.
I love where it takes me in my mind. I thought upon studying it "a smoldering sun break" than instantly realized it transformed the word for me, to a much more positive, hopeful feeling. (Far better use of the word smoldering). Rather than a precarious diagnosis, a calming, beautiful scene that expands possibilities for each new day. Thank you, Mark, for the uplifting gift of your work and words. I will dust off my cameras and engage in seeing what is already there for the taking!
Mark,
I don't know which I liked better, your column or your photograph. Both are outstanding!
Thank you for this uplifting column. Your photo is beautiful. I used to work in stained glass but have been unable to do so since my June 2016 diagnosis, which greatly saddened me. Hopefully I will be able to get back to it at some point, as I am doing well and heading towards remission according to my oncologist.
Dear Mark,
Thank you for your column. I share your love for getting up early in the morning and being by myself, absorbing nature and the landscape. I admire your desire to get back to those good times for you and to include this community in that challenge. For some reason that I don't understand, since being diagnosed with myeloma I can no longer read and enjoy fiction. Previously this was very important to me, but now I can't seem to concentrate when I start to read and I drift off and eventually give up. Like you, I feel there is no excuse for this, particularly as, for the fist time in my life, I have plenty of time!
I wish you well in your quest Mark and I love your photo of the sunrise.
Mark,
Thank you for the plug in your column. My forum thread on biking with multiple myeloma is really about goal setting and working toward it. As I said in my initial post, "in my opinion, we need to find something else to focus our attention upon and set goals for ourselves and push to meet them. Otherwise, we can be consumed by our plight and become mentally overwhelmed, a mental slave if you will, to this disease."
Whether it is biking, photography, music or any other activity, I believe we need to focus on that and set some type of goal or challenge to work toward it. It is therapeutic and will enhance our lives. As you said: "This cancer has taken so much from us already. We can’t let it deprive us of everything that makes us happy. There is so much in life I no longer control, but I have not lost control of my photography. I am determined to recapture my passion."
I look forward to you sharing more about your work in future columns.
Your words and your photograph captured the creative spirit at work again. Recently I have been able to return to writing poetry after writer's block of a few years dealing with myeloma. We do have to savor each moment. Thanks for inspiring.
Thank you everyone for the nice compliments on my photography. My ego was not diminished by the diagnosis and treatment; it always feels good when people appreciate my art. It really warms my heart that some of you found this uplifting and meaningful.
I didn't assume I was the only one that lost motivation after diagnosis, but I find comments from so many of you that have also suffered this fate comforting to know I'm not alone.
Mark - Wonderful and inspiring column. You are absolutely correct – we cannot let multiple myeloma take away the things that make life worth living. Like you, we still avoid crowds and crowded places in order to avoid getting infections, but slowly we are taking our lives back with visits and trips. We have "discovered" train travel and how much more pleasant it is than flying. While not as developed as Europe, we have found that train in the U.S. can still get us to places we have to go and places we want to go. For example, we have taken the train from Houston to El Paso three times following my husband's checkups in Houston. Recently, we even took the train from Albuquerque to Chicago. My point of this is that the train stations appear to be far less crowded than the airports and the trains themselves offer half rooms and roomettes where you have a measure of isolation.
While flying we have started to wear the 3M N95 mask and that seems to have curtailed my husband's respiratory infections (he experienced three upper respiratory infections after flying this year). This mask was recommended by one of the Beacon's readers.
Patty: I've never traveled by train, but I've always wanted to. This is an AWESOME excuse to move that up my list of things to do. Thanks.
I was so happy to see the photograph you included with your column. To me, it signifies hope and a new beginning – something that is possible every day. Thank you so much, Mark.
Mark, I will be looking forward to seeing your photography, and your future columns. It's wonderful that you are getting back into your love of photography, I wish you well. I too found it hard to get back into my life prior to my diagnosis. It's four years since my transplant, and I am now trying to put my myeloma in the background. However, as I write this now, I realize that my myeloma diagnosis is always there in the background.
Hello Mark, Your photograph of the tree and light represents the hope we all share in this journey of multiple myeloma. Your photography is amazing. I am almost 6 years post stem cell transplant, and I continue to find new passions and revisit old ones. I enjoy images but find that words are more my friend right now. Please keep writing and share your journey with us. Maureen
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