Just because you have a hard life, it doesn’t mean you have to have a bad life.
With challenges or disabilities, you can still have a great life.
– Ava Neufeld, age 9
When my husband Andrew and I began to conceptualize Alongside You, we wanted to serve the needs of our communities in different ways. While it was our goal to build an interdisciplinary clinic, we sought to create a place where I could use some of my skills as an artist and anthropologist to design an environment where I could work at my own pace. You see, 6 years ago, a car accident on a raining day left me with daily chronic pain.
It’s not something I like to bring up, but because it affects my daily life, I am learning to talk about it more as well as raise awareness of invisible chronic conditions. Just like mental health issues, chronic pain is an invisible illness. I don’t have any visible scars, a cast, a cane, or even a service dog to alert others about my condition. In the last six years, I have struggled with constant and never ceasing pain. Every. Single. Day. For me and so many others with chronic illness and pain, persistent pain makes normal activities excruciatingly difficult. For some, every movement or breath takes effort and every day choices are made based on a delicate balance between periods of rest and activity. Every day begins with the struggle to keep up with those around us.
At the Beginning:
The past 6 years have been a blur. At first, migraines where so intense that they would last 24-36 hours every few days. While life continued beyond my bedroom door, I spent my time with ice packed all over my head, heat on my back, with earplugs in and eye patches on, to rid me of all things sensory. Balance issues, cognitive impairment and physical mobility were so strained that I was in bed for months and months on end, rising only for short periods of time. Impaired cognitive functions such as critical thinking, organizing, memory, emotion regulation, and reasoning made simple tasks such as making lunches or setting the table, impossible. When I was not in bed, I focused on rehabilitation that consisted of physiotherapy, acupuncture, massage, trigger point injections, Botox treatments, and inner ear and concussion testing. I was prescribed neurological medication to treat acute neck, head, and ulnar nerve pain, but each had their own side-effects. After a year of being unable to drive and relying on our friends and family to take care of our children, we came to the realization that things were not going to drastically improve, so we hired a nanny who took over all the childcare while I rested and went to rehab.
It was a couple of years before I felt strong enough to manage the kids on my own. Having been and “absent parent,” for the last few years, taking back the reins of parenthood presented challenges of its own. My children no longer saw me as an authority figure and sought comfort from others. As I got a bit stronger and with a series of medication changes, new and ongoing surgical procedures (nerve blockers, trigger point injections, medial branch cauterizations and Botox injections) I have slowly been able to reclaim my role. I would be in a very different place today if it weren’t for the help of supportive family, friends and rehab therapists and counsellors.
Matters of the Heart
Though my body is adjusting to this new state of pain, my spirit is still trying to digest a complex set of emotions as a result of the motor vehicle accident. Feelings of stress, anger, isolation, disappointment, anxiety, depression, and hopelessness go hand in hand in the journey of someone who lives with chronic pain. There’s anger over lost time with family; grief over the career you once had; frustration with daily physical pain and low energy that prevents the beginning of new ventures; disappointment with not being able to be consistent with family, work and friends; guilt over the burden you place on others with no hope of returning the favour, and so much more.
What keeps me going? My faith. It has sustained me and has played a huge role in my day to day functioning. It has provided me with guidance and has uplifted me in the ways I needed the most. I have also been regaining my sense of self by journaling daily. Reading back over previous entries reminds me of where just how far I’ve actually come. My abilities as a wife, a mother, daughter, twin, and friend have forever been altered. My job not only consists of taking care of my children and home and building Alongside You, it now includes spending time trying to prevent headaches and acute back pain by diligently trying to balance daily rest and activity. This includes a careful regime of exercise, daily rotation of heat and ice, visits to rehabilitation therapists, and has even led us to renovate areas of our house to make them more ergonomically sound. Chronic pain follows me wherever I go and dictates the extent of our plans, where we go, and what we do.
What I’m Learning About Living with Chronic Pain
- The importance of approaching everyone with empathy
I have learned that because chronic pain is an invisible illness, others around me may be going through physical or mental health issues that are not immediately apparent. Would I turn back the clock to before my accident? Yes…and no. Of course, I would have liked being spared the pain and suffering caused by our accident, but it is because of it that I have learned so much about the human spirit and how to have more empathy for those with visible and invisible pain and have sensitivity when planning activities that are accessible to all.
“Be Kind. For everyone you meet is fighting a battle you know nothing about. –Toby Mack
This has literally changed how I interact with everyone I encounter.
- Try to make peace with your situation
This is the hardest thing I’ve had to learn. With chronic pain, there is no end in sight. You yearn for what you once were able to do and you grieve the things you have not yet done. With good and bad days, your pain is out of your control and there is no real light at the end of the tunnel. This can easily lead you to feel depressed and hopeless. What you can do, however, is to make quality choices. You can make a choice every day of whether or not you are going to let the pain take over or to do something constructive with your time and effort. You can make choices (however small) of the things that give you joy or help you cope with your pain. We will all choose things that are different – for some it could be a pedicure to avoid bending down, for others it may be a soak in the tub, coffee with a friend, or a skill you want to learn. It’s all about managing your symptoms and creating a better quality of life for yourself. It’s about having a life worth living.
“You either get bitter or you get better. It’s that simple. You either take what has been dealt to you and allow it to make you a better person, or you allow it to tear you down. The choice does not belong to fate, it belongs to you.” – Josh Shipp
- The need to educate others
Because chronic pain is invisible, it is sometimes difficult for others to understand what your life is like. Your husband, children, family and friends may have expectations of you that do not align with your abilities. It can be hard to let them know of the kinds of activities you are able to do or not to do, how long you can be active, and when you need to rest. Without people being able to gauge your abilities and tolerances, those around you may have unreasonable expectations of you. Those of us with unseen disabilities such as chronic pain, cancer, endometriosis, fibromyalgia, diabetes and more, know how much effort it takes to walk down the hall or the huge strain it is to complete simple tasks. Share your story with family, friends, and professionals. Describe your struggles. Your willingness to speak about your weakness can make yourself and others stronger. Adjust expectations. Remind your loved ones that some days you may be able to do a certain task, but the next day, you won’t. It may take some time for others to learn about your specific abilities and needs. Be gracious. Look up. Religious teachings or connection to your spiritual side can help us to reflect on our purpose, explore our spiritual existence, and meet like-minded folks who have the potential to be a group of caring people to add your support network.
“Behind every chronic illness is just a person trying to find their way in the world. We want to find love and be loved and be happy just like you. We want to be successful and do something that matters. We’re just dealing with unwanted limitations in our hero’s journey.” – Glenn Schweitzer
- Knowing it’s okay to ask for help
Let’s face it, it’s hard to ask for help, especially if you need help frequently. For so many of us, asking for help indicates defeat, stresses helplessness and highlights our deficiencies. Sometimes, people don’t know how to help those with chronic pain. Reaching out to family, friends, and professionals, however, can change your quality of life in a positive way! Do regular check-ins with your doctor or rehabilitation practitioners who can help you at different stages of managing your pain. They are there to help you find strategies and ways to cope. This will not only help you track your progress, it’s a great way to network with other local people and services that can help you in your journey. Stressing about things we can’t control does not help the healing process but hinders it (physically and psychologically). Make choices by asking yourself, “If I do this activity, is it going to add to me in a positive way or can I have someone else do it?” Handing over control may make you feel vulnerable, but get to know your limits so that you can participate in other things.
“At any given moment, you have the power to say this is not how my story is going to end.” – Unknown
- To live in the moment and celebrate small victories
“Courage does not always roar. Sometimes courage is the quiet voice at the end of the day saying, ‘I will try again tomorrow.” – Mary Anne Radmacher
Mindfulness, or having a heightened sense of awareness to the present moment, can be a tool to use with the management of chronic conditions. Practicing mindfulness has been proven to help decrease stress and anxiety[1], aid in pain management[2], increase quality of life in cancer[3] and Alzheimer patients[4] and ease symptoms among those suffering from persistent mental illness.[5] As we refocus our brain to be aware of the sounds, textures, smells, and what we see, we are actually giving our brain time to rest from being focused on pain. When we become more aware of our surroundings we tend to notice details and take pleasure in them. Something as simple as watching leaves fall, the wind blow, kids playing at the park, the crunch of fall leaves underneath you, can help you put your pain on the back burner for a period of time. Even that short amount of time can be restorative. As you relish in these daily experiences and are more mindful of how your body feels, there is an opportunity to take little steps forward. Take note of these small victories. These are little gold nuggets, ones you can look back on and remember them as stepping stones. It could be that you have been able to accomplish tasks that you haven’t been able to do in a long time: ride your bike, follows recipes, taking a new class, walk to the end of your block. Each of those little triumphs are golden nugget moments. Take time to breath, moment by moment, hour by hour, day by day. When you just can’t keep up, remember your small victories…they can reap huge benefits!
“The reason why people give up so fast is because they tend to look at how far they still have to go, instead of how far they have gotten.” – Unknown
I rolled my eyes at Andrew and others who suggested mindfulness to me because it’s not something that I knew about before, but it is something that has radically changed my wellbeing and I encourage you to try it. I did training in Mindfulness Based Art Therapy (MBAT) techniques as a way to use art in my own journey and now I use it with people in our art studio where I am the creative arts facilitator. I would love to have you at our Open Studio Sessions on Mondays or Wednesdays if you’re interested. Art is a great way of being mindful, and the research shows how effective it can be in our recovery. As an art facilitator, I hope to bring people together so that they can make meaningful connections with others.
Thank you for witnessing a part of my journey in reading this post and I hope it has been helpful for you in your own journey. Join us next week when we will share more posts about chronic illness.
If I, or anyone at Alongside You can be of any help please don’t hesitate to get in touch.
[1] Jon Kabat-Zinn. http://www.mindfulnesscds.com
[2] Kabat-Zinn, J., Lipworth, L. & Burney, R. J The clinical use of mindfulness meditation for the self-regulation of chronic pain. Behav Med (1985) 8: 163.
[3] Monti, Daniel W., Caroline Peterson, et al. A Randomized, Controlled Trial of Mindfulness-based Art Therapy (MBAT) for Women with Cancer.
[4] Quintana Hernández DJ et all. The affects of a neuropsychology program based on mindfulness on Alzheimer’s disease: randomized double-blind clinical study. Revista Espanola de Geriatria y Gerontologia [2014, 49(4):165-172]
[5] Herring, Daniel. Mindfulness-Based Expressive Therapy for People with Severe and Persisitent Mental Ilness. P.172. In In Mindfulness and the Arts Therapies: Theory and Practice. Laury Rappaport ed. Jessica Kingsley Publishers. 2014: 168-179.