Just over one year ago, I wrote a post which I now believe may have been a premonition. On one of the last days of 2015 I wrote No Fear Campaign, 2015 and I have thought back to that post as well as revisited it so many times throughout this past year.
I was fueled with courage at the beginning of the year, but I had no idea why I would need it. And then the bottom dropped out of my life and I REQUIRED that courage more than ever. I suffered so much loss this year, I made a huge transition, fought a difficult battle, saw several new doctors, visited the hospital, started physical therapy, home care, and have been exposing myself to many new faces, new experiences, and could never have imagined any of this just one year ago. It’s true that this year, I’ve been in constant crisis management. But it’s also true that I’ve been managing my own crisis. That might seem like a given, but illness doesn’t always allow us that luxury.
Last year, the messages to be courageous seemed to jump out everywhere: Have no fear, do not fear, I am with you, be not afraid. If God wants you to hear a message, you will see it constantly whether it is on Facebook or Twitter or television or out of your home or in your Bible- if you feel like there is something that keeps popping up in front of you repeatedly, that message is JUST FOR YOU! Truth finds you. You can try to ignore it, but if God wants a message in front of you, He will repeat it and confirm it. It’s not a coincidence. And I am so thankful I grasped the message to have courage when I did. It truly saved my life this year and courage continues to change how I move forward.
Things are so hard now, SO HARD. But I’m planning to beat fear once again, and go to my sister’s wedding… in 7 days. This is possibly one of the scariest things I have ever attempted. And yes, I am afraid. As it comes closer, all of those I CAN’T thoughts are terrifying at times.
These posters were made around the end of last year. Around the same time that I wrote No Fear Campaign, I wrote a few other, fearless-themed posts. In one piece, I said: “The strength comes for the step you need it, not days or months ahead.” That is what I am counting on for this wedding adventure. And it helps give me peace that God will strengthen me and my body to do what needs to be done when the time comes, for my sister, and for me.
Whatever trials wait for you tomorrow, and paralyze your heart with worry today, I hope you feel comforted remembering you can call on that added strength and courage at the moment you need it. You aren’t walking your path alone.
~Peace be with you~
“Freedom lies in being bold.”
― Robert Frost
If you are shopping for a loved one with a chronic illness, long-term illness, or disability, you may feel unsure of their needs, wants and special daily circumstances. Here are a variety of gift ideas meant to inspire, comfort, entertain, and are still appropriate for someone who is mostly confined to their home or uses a walking aid, if applicable. Here are several gift ideas along with advice and links to help you shop!
*Starred shops are run by disabled sellers.
Streaming video allows your chronic friend to watch movies and television any time instantly from anywhere. Especially on those bad days when doing nothing but resting is the best and only option, distraction therapy like settling in to watch great movies and television is a wonderful gift they will certainly thank you for. Netflix, Amazon Prime, or Hulu Plus are a few of the most popular video streaming subscriptions, and they all cost about $100 per year. The Amazon Prime subscription also allows access to a wide variety of ebooks, audio books, and music, alongside streaming video.
The Amazon Prime 2-day shipping feature is an great option for anyone who has trouble getting to the shops. In certain areas, Amazon has rolled out Fresh, a grocery delivery service which is another fabulous gift subscription.
An audio book subscription to Audible is a sweet gift in my opinion! If your loved one is like so many of us with chronic illnesses, reading becomes a tricky task due to blurry eyes, migraine headaches, brain fog, and more. Audio books can make reading enjoyable once again. It may or may not be on my Christmas list this year (hint dropped!).
My sister asked me what I wanted to do for my birthday last year. I told her that if I had been well enough, I would’ve wanted to invite friends over to make sandwiches to bring to hungry area children. I used to do this type of thing in high school sometimes, and last year fantasized that it might make for a unique summer birthday gathering that my friends would like to participate in (being my awesome friends). I was really only thinking out loud, and then asked her what she wanted to do for her birthday (since our birthdays fall inside the same week).
When my birthday came around, I went to stay at my parent’s for the week. On the day of my birthday, my family gave me a small photo album filled with pictures of smiling children. “How cute…What is this?” I asked, curious what my family was up to. My parents and sister had arranged to spend the day volunteering for a back to school program called Give a Kid a Chance which prepares underprivileged children for the coming school year. My family donated goods, packed backpacks and checked little heads for lice. They spent their entire Saturday volunteering for this wonderful program in honor of my birthday!!!! I was crying, they were crying, we were all emotional as they shared the details of the day. It is absolutely one of the most heartfelt and most humbling gifts I had ever received, (which others received) and I know I will never forget their beautiful selfless gesture.
When my mom explained why they did it, she said, “Volunteer work has always been such a big part of who you are. After you couldn’t help in the community any more, you turned your attention to caring for people online. Your sister told us what you would have wanted to do for your birthday, so we did this because you would have been doing this if you could have.”
I didn’t realize how much I needed a wake up call until that moment. I felt like a doorbell was being rung to the door of my soul that a warrior part of me had to close in order to stay alive. To fight the illness, I had to know my enemy, and get in the trenches with him. But the price was that a piece of me had to be shrouded away, protected in that way, while I fought through the very worst of it. My family didn’t know how much I desperately NEEDED this reminder of my core, of who I am.
No one had spoken of my former self out loud in what felt like years. Their gracious act and words were like an unlocking spell. Something awakened inside of me on that birthday that started a transformation- which is still in progress. I am so thankful and fortunate for them, for having the ability to see the good in who I am now, and for never forgetting the person I have always been.
I woke up the following morning with this poem trickling from my brain:
In the time and space between
dark rooms and restless painful nights,
you might have time to count
too many stains on the paint.
The time between forgotton breaths
may have left you wondering
who you used to be.
Did the air sneak your old life out?
Under the door?
Through the cracks in the floor?
Like Russian dolls,
the top one falls:
And mama sweeps it away.
Those who recall that ghost,
tip toe beside the host of the demon.
They bring pieces of the past,
until at last you remember.
The apparition waits outside.
Now, you can smell her perfume.
There are times during the fight that we must lay down our old lives and find a way to nurture today, without looking back or too far ahead. But I’ve also learned that reminders of your past can boost your spirit in the midst of a struggle. Wherever you are in your journey, I hope you have someone in your life who sees the strength in you and reminds you of it.
Blooming Beauty is by one of my favorite artists: Peggy Wolf. Check out her gallery on Etsy, you’ll love her as much as I do.
Over the last 10 years of chronic illness, people have told me that I will be healed if my faith is strong enough, that I am being prepared for something greater in my future, that all of this pain, loss, and disability will be given a special meaning some day. But, I believe that our lives are meaningful even in the midst of the darkest struggles. We don’t have to wait until life becomes perfect to attain purpose and perspective.
In the first couple years after I was diagnosed, college friends told me praying harder would heal me, one suggested the sins of my parents or grandparents may be expressed through my illness, family members sent me books about focusing on God’s healing promises, and I was prayed over for healing at church more times than I can count.
I was so angry and frustrated at everyone! God wasn’t healing me, I was getting worse! Why didn’t they understand? But no one did… I felt all alone to face this new monster eating away at my body and taking down my dreams and abilities one by one. I had such a strong confidence in my purpose, in my “calling,” and I didn’t know why those passions would be given to me, if only to be ripped away.
I do believe God has the power to heal my body. I also believe that healing can come in other forms as well. I used to pray and pray for my body to be healed, for the horrible pain to go away, and for my life to go back to the way it was. Of course I did. Of course I want my pain to go away and for life to be easier. Everyone in pain wants that! As life became a one-day-at-a-time struggle for survival, talking to God changed also. My heart desired to be of service to others (on support groups, online, in my relationships, etc.). Over time, I realized those prayers overtook the ones begging for physical healing. I believe there are different kinds of healing beyond physical wholeness that I hadn’t thought about before chronic illness, or during my first years living with it.
In each of the instances with my friends and family, they were showing up in the only way they knew how to offer hope and support. I’ve since learned that the people who show up are the ones to hold onto- sometimes they take some time and guidance to figure it out though.
During the storms in life, it is so common to be told that when the storm lifts, we will use what we’ve learned to help someone else, or we will have a greater sense of clarity. Well, when the rain doesn’t let up, when your body is constantly beating you up, if you are terminally ill, there is no waiting for healing to make use of your life today. Loss of health forces us each to look at our mortality and time in a new way. The desire to make a difference in the world doesn’t stop just because one’s legs, nervous system, or liver is failing. For so many remarkable individuals I have met over the years, illness can even inspire a new-found purpose, passion for growing in new ways, and redefining success based on what they hold most precious vs. what society has told them is of importance.
If you feel as though your purpose has been lost, and you don’t know why your life has taken this sudden detour, please know that you are not alone, and you are still on a path that is your own. You have not been forgotten. Your life still has meaning, even now- even in the mess you feel you are going through. You don’t have to wait for the perfect body and perfect life to be useful. If I had waited for that kind of moment, I think I would be waiting for eternity! Even in the middle of your struggle, your story matters. What you are going through matters.
You might be waiting for an important test result to come in, for doctors to finally diagnose you after years of unexplained illness, for the medication trial to become available, or you might be waiting to see if your surgery heals without additional complications. You might be waiting for a loved one to return safely from a dangerous trip overseas, for important news about your finances, or you might be waiting to see if your friend will recover from cancer.
Waiting is a helpless feeling, no matter how much we can “help” the situation…the feeling that we are not the ones in control of the outcome makes us feel useless. Not knowing the outcome causes anxious, nervous impatient feelings that, for me come in waves which are accompanied by a racing mind.
For a person who started out bread to be the go-to person for fixing and fast problem solving, it seems life instead has been teaching me about patience, seeking guidance and waiting out storms. Instead of giving me problems to solve, I have problems that can only be solved through the healing of time.
Even though it is a useless feeling to wait, wait, wait, I don’t believe in waiting we are supposed to throw our hands up and stop seeking guidance. There are always more calls we can make, more specialists we can see, ways we can take care of our health, and people we can reach out to. But, if you have been waiting on something that weighs on your heart, there is only so much you can do to push the pace of the answer you so desire. Sometimes we can spin ourselves into a frenzy trying to get the answer we want to come to us faster, when some things are out of our hands. Praying, quietly seeking guidance and listening are also useful actions- though exceedingly more difficult to choose.
I am waiting for some very important answers in my life right now…Some answers that will forever change life as I know it to be. Maybe you remember a stretch of time like that from your past, and how you felt. How did you fill those long days waiting for tomorrow? Because of so many years of chronic illness, it feels as though waiting has been a regular part of life. Life with chronic illness teaches us to find the good, useful, and gratitude inside of the seemingly unlivable. These years of health struggles have taught me to lean into my faith and seek spiritual guidance. I am so grateful for the support and wisdom from those I respect, and I hope to be molded during this trial – what is God teaching me in this moment? …Because nothing is ever wasted.
Earlier this year, I wrote that “strength comes at the step we are on. Not weeks or months ahead.” As I work on waiting, and asking for patience, I try not to dwell on what challenges might come tomorrow. If you remember, my opening post for 2015 was a “No Fear Campaign.” It makes me want to shake my head when I think of the year God has been preparing me for!
About waiting, many say, “Just give it to God” as though it is as simple as forgetting about your heartache with your spouse, or your worries with your family, or your daily physical struggle with health that I know so many reading this are living with. I’m sorry if anyone has said that to you without compassion for what you are going through.
The past couple weeks have felt like an avalanche in many ways. When all of the rubble and dirt fell over me, and I went sliding down the hillside into the valley with the mound, even though I’m covered in a whole pile of dark unanswered questions, underneath, I’m praying, and studying, and being still (listening). Hopefully, this trial of waiting will lead to growth from that soil and rubble. My story is not finished. God is not through with me. Waiting is not doing nothing, waiting can be the most growing period in a person’s life. I am asking to be transformed during a time in limbo.
What did you do or what did you learn while you were in a season of limbo?
“Patience is power.
Patience is not an absence of action;
rather it is “timing”
it waits on the right time to act,
for the right principles
and in the right way.”
― Fulton J. Sheen
“But those who wait on the Lord shall renew their strength;
They shall mount up with wings like eagles,
They shall run and not be weary, They shall walk and not faint.” Isaiah 40:31
“What we are waiting for is not as important as what happens to us while we are waiting. Trust the process.”
― Mandy Hale
My good friend at one of my favorite blogs, Findingoutfibro wrote this amazing post below!
Finding the good in your struggle and using it positively is definitely something to be celebrated; however, when others forget the good you choose to share is born from the daily struggle you STILL live in…that is where the problem lies. Please continue reading:
The danger of being viewed through the lense of the “inspiring cripple” archetype is that it was created by ableists as a tool used to invalidate those who are struggling. It means that people expect things from you that you weren’t even capable of before disability, muchless after. It’s such an unhealthy way of approaching people who are ill, as if we are not trying hard enough unless we can plaster a fake smile on our face and say we’re doing well, when actually we are struggling in ways that only a small percentage of the population can understand. The notion of the inspiring cripple does not leave room for the uncensored reality of the chronic illness spectrum.
If you are able-bodied and do not experience mental illness, I am not your inspiration. If something I say or write is helpful to another spoonie, then that is why I am here and it makes me happy…
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A young woman I met during my freshman year of college told me about her recent struggle with Leukemia. She said that she had just finished her second round of chemotherapy; earlier that day her cancer-free results had come in! She was back on campus full time and took a seat beside me in class. My expression of shock and concern must have been obvious as she introduced herself. I stumbled over my words… “Um..wow…I’m sorry….I mean, congratulations…or…well….YOU LOOK AMAZING!” I blurted. She rescued me explaining that she had been trained in Biofeedback. Because of deep breathing and self-hypnosis exercises, she didn’t lose her hair, she never became ill from treatments, and she believed Biofeedback was helped put her stage 4 cancer into remission.
Biofeedback is a therapeutic training method used to help people learn to gain better control over their Autonomic nervous system functions. Our Autonomic systems function automatically, without any guidance from us. In Biofeedback and Neurofeedback therapy, patients learn how to do the impossible, and influence the automatic systems of the body.
It’s the ultimate in mind over matter.
Heart rate, blood pressure, sweating, skin temperature, circulation, digestion, and muscle tension are a few of the ways we can learn to take some control over our bodies.
For those who suffer from neuropathic pain, diabetes, phantom limb pain, or post-cancer pain, learning how to increase blood flow to the legs, feet, and hands can decrease freezing or burning pain sensations. Increasing blood flow to the extremities can also stimulate healing in the bones, muscles and nerves where there is atrophy.
Those who suffer with Anxiety and Depressive Disorders can benefit from Biofeedback or Neurofeedback by tracking progress through relaxation, muscle release exercises, sleep training, and fight or flight therapies.
Some of the tools used along with the EMG Biofeedback device are counseling, CBT, meditation, breath exercises, guided imagery, visualization techniques, music therapy, self hypnotism training, muscle relaxation techniques, focus exercises, etc.
Some people describe Biofeedback like playing a video game on the screen, but the remotes are your vitals, and you control them with your mind. Each program is different based on the patient, their specialized needs, and the Biofeedback trainer. Some therapists use counting, some use visualizations, others use music; everyone is different.
Biofeedback has been utilized by Physicians, Psychiatrists, Psychologists and Counselors for many years and is an evolving method. Biofeedback is used to help those with neurological disorders, chronic illness, terminal illness, learning disabilities, stress, mental illness, chronic pain, sports injuries, sleep disorders, migraine conditions, brain injuries, fainting disorders, pregnancy training, Autism, and Neurofeedback has even more applications.
It is a non-invasive therapy. Like any physical therapy, it is not a shot, a pill, a surgery or quick fix, and it does require patience and commitment from both the patient and the trainer. Once these skills are learned, they are a part of you and your “tool belt” forever.
Just 10 years ago, around the time I did my Biofeedback training, it was a rare therapy. Now, it is becoming more widely available as a non-invasive option.
I am a believer in Biofeedback as a coping mechanism for reducing the emotional and stressful toll that illness and pain cause. It’s not a cure or a quick fix I’m sorry to say. I wish it was… Biofeedback has helped me daily for the past 10 years to keep going, to manage the inevitable stress and spiraling thoughts that come with high impact intractable pain, and it has taught me how the brain and body can work together holistically to grab hold of the “pain cycle” pattern. If you can physically manipulate it, they can teach you how. We have so much more influence over our bodies than we realize. It’s an incredible science!
When I first met my Biofeedback therapist, I didn’t believe a word she said. Shortly, she became my Yoda, and I was her Han Solo willing to soak up all of the mind bending, wisdom she had to offer.
If I can answer any of your questions, I invite you to share them below in comments.
Thank you Cindy Howe from Ragtop Designs for allowing her awesome Yoga Zentangle Girl artwork to be featured today. She has so many magical pieces in her shop Artworks Eclectic on Etsy. Please go purchase something special for your home or a gift for the holidays!
Those with chronic illness, chronic pain, and disabilities are all heroes to me. I know yesterday was hard. The holidays are always a challenge no matter where on the spectrum of disabled you are, celebrations push us to our limits.
We mentally feel pushed to be up and feel grateful or in the spirit of the season. When pain and illness bombards our thoughts constantly, at times it can feel like a mountain to climb to find a hint of the same holiday spirit we once felt. Physically, we are pushed to do the things we really want to do like spend the time with the people we most want to see, bake, shop, go to sporting events, etc. Some in the “Spoonie” community cannot leave home any longer or their illness is such that they are now confined to a bed, yet they still find ways to express gratitude and the spirit of the season (heroes).
Many push to try to do things we’ve always done despite our declining health like cook, or play a sport or game with everyone else. Even though I’m confined to a bed in a back room while the family is having dinner and festivities, this year I pushed myself to change into something cute. Honestly, changing clothes took away from my energy and added to my pain; I know I could have used those spoons to spend more time with a loved one later on. When I was still able to cook, I overdid it in the kitchen and my pain would spike. The truth is, some of our actions aren’t for other people, some things we do are just for us- and it’s healthy! I have spent the last few holidays either in days old pajamas or in the hospital, so changing clothes helped remind ME of who I used to be. And I’m so grateful I had some extra spoons to do something so frivolous this year and still have some quiet moments with a few loved ones as well.
I know spending time around your family takes so much courage for fear of getting bumped and pain skyrocketing, eating a bite of something that triggers your body to become inflamed, or an unexpected noise setting off a migraine or cluster headache- these are some of the sacrifices you make for LOVE. You are brave and you are warriors. If you always listened to the will of your body, you may never open your eyes each day. Your body tells you NO!!! But your heart calls. Your heart is always stronger. And I admire each and every one of you. You teach me courage. During the holiday season, we make many sacrifices: trading spoons for love of others and longing for who we still are inside. Balancing emotional needs and physical needs. Always juggling.
That is why those with chronic illness and the disabled are my heroes.
“Courage doesn’t always roar. Sometimes courage is the little voice at the end of the day that says I’ll try again tomorrow.” ― Mary Anne Radmacher
Articles to Reinvigorate your Spirit:
Have you ever thought that you are the best friend you know? Are you the most responsible, caring, compassionate, shoulder-to-cry-on kind of friend who drops everything to be there for the people you love? Have you ever wished for a friend like yourself?
I used to think that. Although I so adored the people in my life, there were times when I felt some of the things I did for them went under-appreciated. When I had problems in my own life, when I needed someone to make me feel better, I felt empty handed. Sound relatable?
I was a doer, a giver, I needed to be needed. I set my life up so that I was the go-to person for all of my people. I was the Olivia Pope of my world. Even when I moved to a different state, within months I was the one person anyone who knew me could count on. I constructed a safety net for everyone else, but when my own life turned upside down in the form of chronic illness, I felt there was no one to lean on.
Even after illness set in, things did not change. In fact, I felt that no one had a grasp of anything I was going through. For the first time in my life, I was desperate for some care from others and it seemed that no one knew what to say or do for me. Looking back now, some people were generous, and a few did reach out to me. I think it’s because I never learned how to ask for help before, I couldn’t recognize a gift of compassion and I was too prideful at the time to see when people were trying to be there for me.
I was so programmed to say, “No thanks” and “I’m fine” when people tried to help me out. I think I probably pushed them away without meaning to. I didn’t fully learn the gift of receiving until later on.
Sometimes tragedy is like this. The harder things get, the more clarity we can find.
You get so accustomed to being self-reliant and needed by others for so long that when it is time to accept help from another person, it’s like a foreign object that you naturally repel.
People who cared about me wanted to be there for me, but I usually shut them down. There were those who never knew what exactly to do or say, but they tried to just be in my life. I know now that the people who stick around in uncomfortable times are keepers.
Letting loved ones know how exactly they can help makes the people around us feel less powerless. If you give your loved ones specifics, they can learn how to better help with your complex needs. Hints and mind-reading definitely doesn’t count.
I know from personal experience that receiving help and asking for what you need can be a humbling experience. It’s lovely to help others but it can be humiliating when you’re the one who needs the help. That is the first thing I had to try to accept. You will have anger about it…try not to take it out on those giving to you. Don’t say things like, “I’m sorry you have to do this for me,” or “you will get tired of helping me,” or “I can tell you don’t want to be doing that for me.” Don’t critique their attitude, or predict future resentments. Instead, lead with gratitude. Say “thank you.” Your appreciation makes others feel positive.
Gratitude isn’t only an emotion, it’s also a state of mind, and a form of personal expression. The great thing is you can choose to be grateful even at times you don’t necessarily feel that way.
You already know how good it feels to do for others. Learn to be a gracious receiver.
Remember, you are worthy enough to accept the very thing you do all the time for other people. If the situation were reversed, would you be there for your loved one in the same way?
It has taken me a while to learn that lesson. I am still learning… Those who give of themselves are always teaching me to be humble.
I had to consider why my life had always revolved around being helpful, yet I could not receive the help offered to me. To top it off, I was too prideful to ask for help.
When I was finally able to say “thank you” and mean it from the bottom of my heart without resentment, anger, shame or fear: gratitude swept over me and lit up everyone in my life like Christmas lights.
Before, giving and being needed was how I defined myself. Learning to receive showed me the love everyone around me had to offer.
This lesson has been such a challenge; I am still learning to receive and to appreciate the blessings in my life, but the gift of gratitude has been a life-changing lesson. I believe learning to receive with a grateful heart makes a person a more understanding, more compassionate giver.
People love you and are there for you, too. Maybe not in the way you want them to be, but they might be exactly what you need. You are worthy of their love and their help. Please don’t miss out on receiving the blessings that God is trying to bring into your life.