Everything can change in an instant. We've all heard this, brushed it off, and thought it never would happen to us. Until it did. Sometimes life can negatively change gradually though. The gradual change can kick you just as harshly as instantaneous change. There's a quote from C.S. Lewis that says, Isn't it funny how day by day nothing changes but when you look back, everything is different?" This is SO true. Living with chronic illness, I have experienced both instantaneous and gradual changes in my body's functionality, which as you can imagine has affected my physical abilities and lifestyle. Many times, people say, "There's no way I could go through something like you go through." Well, you may not have a choice at some point in life. I certainly didn't have a choice when my body turned on me. So how does one navigate a new physical normal where you can never return the old you as much as you try?
Know that you are so much more than your physical disability or illness. In God's eyes, you are created in His image and His love can never be overwhelmed by mere physical status. Many times, when a disability is developed or illness occurs, that is, unfortunately, the first thing that people notice and comment on, and they get frustrated when things do not improve or they cannot help tangibly. Questions like "How are you feeling today?" and "Can I help you?" are the first things from their mouth combined with a certain look of pity in their eyes and their actions. While these questions and their concern are well intended and grounded in thoughtfulness and love, they tend to forget to see beyond your broken body and ask about friendships, hobbies, work, activities, family, relationship with God, and what other challenges you may need help or prayer for in life. This constant focus by others on your body's ailments can be discouraging, drag you down, and morph your perspective of your identity. Yes, you have a disability or illness, which is a huge part of who you are. It will guide your actions, word, interactions, acceptance or denial by others, and abilities. However, the foundation of your identity must be found in the Scripture in Hebrews 12:2. Fixing your eyes on Jesus is vital to remember who you are: a human loved deeply and created in the image of God with a soul, a personality, interests, passions, traits, and uniqueness. There is so much more to you than your physical challenges, and this truth must be clung to when your identity is threatened by your physical status.
Your body can ruthlessly rob you of many abilities, but you still can control many things in life. The human body has a miserable capability of wreaking havoc without consent, and typically in the most painful ways that rob us of our most beloved abilities. However, there is still much in our control even when the body's functionality collapses. Examples of what is within our control are our sustained trust in Jesus, our attitude response, our management of our side of relationships, our activities, and our rising above the disability's impact. As tempting as it can be to simply give in to the ravaging of your body and just melt onto the couch daily, try to not sink so low, and let your body tell you that you're too broken to do anything. Almost no one has absolutely no ability to do anything, including you, otherwise, you wouldn't be reading or hearing this blog post or trying to find out how to adjust to a new normal. Strive to adjust your attitude moment by moment, strengthen your spiritual life, and set up and seek new activities or adaptive ways to do old activities you loved. There will always be something in life that you can do, and there will always be decisional crossroads where the choice is yours. Get up, chin up, and regain the reins ensuring that God has ultimate control.
Don't get dangerously caught up in reminiscing the good old times of the past. This is one of the most difficult actions to implement as grieving the old you can be immensely overwhelming and sometimes completely unavoidable. I struggle with this day after day. There are days when I will scroll through my photos or social media and get caught in a cycle of daydreaming of what could have been, what should have been, and yearning to be the old me again. I miss me, I miss all I could do, I miss my happier demeanor, I miss having the friends who bailed just because of my illness, and I miss feeling like I fit into society normally. Dwelling on these desires tends to cause roots of bitterness to start to grow, and hatred toward myself builds quickly. Some days I despise who I am. In these times, God has to intervene and help me simply live in the moment and love the moment that He has granted me now. One of the biggest pieces of advice I have for those who are new to a disability or illness is to try to look back at when the disability or illness began simply to see just how far you've come now. Don't look back at life before your disability occurred or your illness worsened because you'll likely only see how much you've lost. I often have to force myself to look at photos from surgeries and hospital stays or read old journaling from where I was at the low points of my life to compare to where I am now. For instance, if I am trying desperately to get back to my ability to hike mountains, figure skate, and test to see if I can physically perform any of the duties of my old job, then I will only frustrate myself, break my own heart, and invoke feelings of anger and deep sorrow due to the loss. However, if I back up my thoughts to where I was physically when I was recovering from major surgery and couldn't even sit up or get ready for the day independently, but can now do everything independently with confidence, travel, cook and bake, work part-time, spend time with loved ones, and enjoy the outdoors in my wheelchair, then I can be encouraged by how far the Lord has brought me and how much my efforts at rehabilitation, both inpatient and daily, have paid off. Simply living one moment at a time and not allowing your mind to drift back and dwell in the past will make you lose appreciation for today and have no drive for finding the potential that today holds.
Look for opportunities to use your disability or illness to reach others in a similar boat. Humans naturally seek out those with similar desires, passions, situations, and hobbies. There's something special about connecting with those who are also suffering physically. You can build each other up, guide one another through medical scenarios, creatively find ways to adapt to life and understand each other in ways that able-bodied folks cannot. Even the Bible speaks in 2 Corinthians 1:34 to comforting one another with the comfort we have received. There are ways you can connect with other people who are suffering via social media presence and specific social media groups, support groups at hospitals, friends of friends, and in-person interactions. These people do not have to be in the same situation that you are in but can be anyone who has physical challenges. You can learn from one another and edify one another in wonderful ways, and this can provide great purpose to the suffering in your life as you lift each other and encourage one another in your faith. I started a social media page where I educate people, have connected with so many people in similar boats who battle medical conditions and have made very meaningful, long-lasting relationships with fellow warriors and caregivers alike. Using my illnesses and disabilities to help and love others had turned something terrible into something purposeful.
Find adaptive and creative ways to still do the hobbies and passions you once loved, but be okay if you can't do them the same way or at all. For instance, I loved medicine. I still do. I studied it for 4 years in college and graduated with honors on the Dean's List to be an emergency flight nurse for helicopter transport. Those dreams crumbled when my health worsened to the point that pursuing additional collegiate school beyond my bachelor's degree in Medical Support would be impossible. I just can't seem to let my love of medicine and desire to help others go, so I created a social media presence where I could educate about chronic illnesses, bring awareness to various disabilities, and support other warriors through advocacy and tips on navigating the healthcare system. This has helped quench my burning desire for involvement in the medical field, though I doubt it will ever be extinguished. I can still do hobbies I love such as cooking and baking, have picked up a love for singing, and maintain my long history of delight in exploring the outdoors; I just do it adaptively and at my speed. In 2020, I found a new outlet for creativity and pleasure through writing and chorale music. Discovering new hobbies and designing new ways to enjoy old hobbies can bring happiness and variety to a mundane day that might be otherwise filled with medical care and boredom.
It's okay to grieve your new normal! People too often try to suppress the grief of others through comments dripping in positivity or redirecting the sufferer from their grief because it makes them feel uncomfortable. Grief rubs others wrong because happiness is much more acceptable and comfortable to society overall, and when a person is out of their comfort zone, they do what they can to change things to get back into their comfort zone even if it means they diminish someone else's emotions. Humans like to fix things if they sense they are broken. Even the DSM-5, which is the book of official diagnoses for psychological illnesses, created a new diagnosis in 2022 of "prolonged grief disorder." I have such a problem with this because every human grieves differently and in different ways, and to force humanity into a box that squelches emotion is so wrong. Grief about losing your body's ability to function does not mean you are broken, no matter how long you grieve or how you grieve! Grief is a normal part of being a human, and should not be squelched or stuffed away by you or others. Taking time to grieve, but trying to not dwell on the sorrow is a lifelong process, and should be accepted and allowed.
Recognize that it's the little things in life that matter. Sure, that bucket list seems enticing, but when life flips upside down physically, the viewpoint of bucket list fulfillment can turn from enticing to daunting. It's okay to have a new, more reasonable bucket list. While I still hold out hope for checking off big dreams such as seeing the Swiss Alps, visiting Banff National Park in Canada, and going on a helicopter tour, there are more reasonable activities that I can pursue like going to Yellowstone National Park and enjoying a delightful day out with my family or friends. At the end of the day, it's the activities like serving the Lord through work at church, cuddling with my service dog, celebrating a dear friend's birthday, traveling to Colorado to meet my little adopted niece, and shopping with my mom that warm my heart and fill my memories most. Sometimes we want to build a checklist of monumental things we did in life, but in the end, this is futile and not what we will ultimately treasure when all is said and done.
Don't base your hope and joy on your circumstances or acceptance of others, but rather root them in Jesus and His promises. If you try to glean hope and joy from circumstances and acceptance, then you will always be disappointed and brokenhearted. It is guaranteed that people will drift away from you when they see that you're different, and they will forget to look beyond the physical differences to see your personality and heart that made them come to love you in the first place. Excuses may arise for their absences or they may just drift away silently, but either way, it will hurt you deeply. I've experienced this loss of friends, and it's one of the most painful things to endure, especially as it was nothing was your fault that triggered them to leave your life. However, there will be those that remain in your life no matter what occurs, and their love will be such that they will adapt alongside you to your new normal and they'll be happy to journey through life with you through thick and thin. These friends and family are treasures. Circumstances will shift and break your dreams if you cling to them too tightly. It's perfectly wonderful to make dreams and plans, but hold them loosely, knowing that God will guide your steps for what He knows is best for your life as He works to fulfill His plan and make all things work together for the good of those who love Him. Set your mind on the things of eternal nature, the promises that never fade, and most importantly, on Christ who is the same yesterday, today, and forever.
I hope these may help you or someone you know learns to navigate a life filled with new normals.