Not all who wonder are lost.. but maybe when lost we wander to the places and people we need most to help us remember we are not in fact lost or wandering alone. When we wander it is to gather pieces of us that make us feel whole and unbroken.
I broke a mirror the other day.. shreds of glass scattered all over my floor. So many different pieces that once made it whole misplaced.. forever separated from the unity that once existed. So much symbolism in a ordinary life occurrence that happens to most of us. When cleaning up the mess..I found beauty in each intricately severed fragment.. the light from my room hit each piece and reflected off each piece in a different way. Accidents happen daily..unplanned life much like a broken mirror can leave us in pieces that cannot form what once was. The pieces of us and our lives land with no plan.. there is no rhyme or reason to where they fall and scatter. We find ourselves in a frenzy to clean up the mess..get frazzled with making sure we get each and every piece.. hoping with the cleanup we don’t make the situation worse or even hurt ourselves more.
We all have endured countless broken mirrors in life.. pieces of ourselves scattered in places we have yet even to find. But many pieces we are able to find in people and places that make us whole again. When lost we wander..we set out to find what makes us feel whole. We embark on a quest to gather what remains to make us feel as we once did before the breaks. Like tiny fragments of light our pieces shine in those we find our way too. And those we seek out help to reflect light back to the pieces of ourselves that still remain..when broken I find myself in the same people and places I wander too when lost.
That same day I broke the mirror.. I found myself at the gym..I have to push hard to get there every time.. but I know what piece of me I will find while there.. and I know when feeling a little lost and off the path.. I have to wander to this point. It is no secret I hurt.. that is a feeling that I have come to accept about life now..I am exhausted from the moment I wake until I try to go to bed…but right around mile 2 something happens…my body shoots off every message to my brain to say.. okay enough.. time to stop… my brain even starts to agree.. and for a split second I almost call it quits. But then a piece of me resurfaces..and I push through the pain and the fatigue and keep going.. it is almost a high to realize you still have that control over your body and of your mind..I instantly in this moment remember I am stronger then the notion to quit and give up.. I will hit my mark and even raise it higher.. not bc I have too..but bc I need too..I need this piece of me.. this piece to fuel other moments just like these.. I need this reminder.. this light reflecting fragment to see who I am and just what I am capable of. That is one piece of me I have always loved..and that is one place I can always find it..even if it only lasts for the rest of my workout..it is comforting to realize that piece of me still exists..it is healing to remember that part of me.. even if I can only find it there in those moments of triumph.
When a mirror is whole it is easier to see yourself.. it is easier to see the image in front of you in a more desirable light..when broken the image gets distorted and skewed..and that is when you need to find the broken pieces of you in others.. they don’t see the cracks in the glass or the harsh sharp edges and dislodged fragments.. they still see the whole reflection and even if they see the breaks they also see the light that shines through them. So when lost.. when frazzled with trying to pick up the pieces of life.. don’t lose yourself in the mess.. wander to the places and people who already see you and who hold those pieces you so desperately are trying to mend back together. The pieces are there..when you feel as if you have lost them.. find your way to you. Whether broken or whole.. what was still exists..it may not be perfectly put together anymore..it may not reflect what you once saw..but there is beauty in each tiny fragment of you..and there is beauty in the places and people who help you remember you are not lost and never will be as long as they hold those pieces of you.
Reminders are a double edged sword..on one hand they keep us on task and able to stay focused on what needs carried out on the day to day basis. On the other hand they are a slap in the face of what was and what now is. I have a about a million reminders on my phone and in my calendar and planner..I can’t exist without them..I however think I could exist without the reminders of where life is now at. It’s a odd and funny thing to remember and always reflect on what once was. To walk around daily with a checklist of things I just can’t carry out that I once did and never took a second thought to appreciate. I use to have full days..days that began in the early morning and ended in the late night.. filled with activities and outings that I could master. Lately my days have been filled with the reminders I can’t exist with full days or even full weeks. With remembering who I was.. these reminders are crushing to my psyche. The spoon theory has become a way of life.. starting each day with a handful of spoons and delegating my spoons and energy to specific outings or things that need to get done.. lately I have been passing out my spoons too frequently and by the end of the day or week it reeks havoc on my health. I have to remember my gas tank is never going to be full and I have to gage my travel on what has to be done and what destinations have to be traveled to maximize my energy. The reminders of who I was and how I was able to pass out a million spoons a day..is a slap in the face for I always try to live up to that person with that stamina. I have come to realize I have a certain amount of energy for one or two things a week and those things being in a controlled quiet and sensory calm environment. Doing too much back to back takes days away and once again is a reminder I can’t keep up with the old me. I always hit this point.. always come to this realization I am no longer carefree and can pick up and make the most of my days. I now have to be calculated with my time and energy to make sure I get to the things I can’t miss. Simple things like choir concerts or trick or treating back to back wear me out and make me physically ill.. those are things I can’t miss nor do I want too.. and things that I once could do along with a million other things and not even think twice about or lose days in bed as a result of being present for three big life events in a row. Going to dinner with friends lately has been too much.. the lights the background noise and the over stimulation of trying to keep up in conversations just take a toll on me and make me hate the way my brain and body processes this once normal and fun experience. Once again these reminders these changes make me feel like I am falling apart and dropping the ball for those around me. Everyone should have a friend that can make it out to see them and keep plans.. and I once again am reminded I am not that friend. I let people down constantly and it eats away at me.. for this is not who I am or want to be. I have found myself lately getting lost in conversations.. saying the same phrase over and over again even if it doesn’t fit into that conversation. My brain can’t process what is being said to me and can’t put together a organized answer back to what is being said.. word finding issues and process time now has made me develop a defense tactic of saying awesome or amazing all the time and sadly sometimes those phrases don’t fit what is being said to me.. when this happens it makes me revert inside myself and not seek out conversations with others or makes me just stay quiet and not want to be apart of what’s going on. So I shut down and stay away.. the fear of not being able too keep up.. the fear of not getting what someone is saying.. makes my head spin and hurt.. but even more makes my heart and spirit feel crushed. Some days I wish my disabilities were visible.. so others could see exactly what is going on inside of me.. so I could never get questioned for being a baby or lazy or just a drama queen. I am actually none of those things and on my worst days.. no one even knows.. I deal in silence.. for I hate having this on my plate and never would want to put or force it on another’s plate. No one wakes up each day and wants to be a burden or dark cloud.. no one wants to continuously say no I can’t do this and then have to explain why you can’t do this.. no one would chose this and I’m realizing no one will prob ever fully accept this is the way it will be now. Going to the grocery store is an event I have to coax myself into doing.. it without a doubt is one of the most draining and over stimulating activities that has to be done. I have to give myself a pep talk to get out of the car to go in..and usually I can’t go there alone. I know on grocery day.. that is the only event that will take place that day.. I also know I have two stores I can only go too for things..two stores where I know where everything is and know the people who work there.. so I can find some peace while there. I’m 40.. a mom.. a grocery store should not be this big of a deal to go too.. but for me and my brain.. it’s a very scary place and weekly event. Cosmic bowling is a big no for me as are indoor jump places.. sadly tried recently to do both and ended up in the car most of the time and throwing up. I hate walking out of a place that is supposed to be fun and exciting.. I hate walking away from my child and memories to be made.. bc I am sick and can’t handle what is going on around me. I hate I can’t make it through a dinner at Applebee’s with my mom and daughter bc there are a million conversations going on.. as well as music and the noise from the televisions.. I hate that when I walk into a store or any public place with yellow lights.. I instantly start to feel a shift in my mood and my brain starts to gear up into overdrive. I hate that it’s a big deal for me to make it up to the dance studio to see my two best friends and get a hug from them..two woman on the bad days that pick up my child and give her experiences I just can’t. I hate writing this and complaining but the reminders at moments get to be too much. Do I have good days where I can pull things off.. absolutely.. but these days are a result of making sure the days before are as calm and as managed as they can be not to miss out on what’s ahead. And life as we know can throw us a hundred different curveballs a day and often we can’t micromanage those to make it to what has to be done. I hate making plans and getting myself excited for things I want to make happen. Recently had a trip planned to see a very important friend.. I should have been there today.. but because of the days that lead here I am at home..missing out on my friend and the time that we should have gotten to spend together. I hate the anxiety and depression attached to all of this.. the guilt and shame of not being the person I want so badly to be. I hate getting anxious when I know I have to be somewhere and the worry attached too what will happen or how I will handle the environment I must go into. I hate the days my hands won’t work and I drop everything and can’t even get the key in the door or get my money out to pay for things. Recently got my new car tags and for three weeks tried to put them on my car myself.. I dropped about a million swear words and lost my cool because I couldn’t get the sticker off the sheet and onto my car.. and eventually realized I had to ask for help. I hate the fact I can sit here and write all of this.. but can’t verbally say this or express myself that way anymore.. my thoughts get scattered and my words get juggled and mid sentence I forget what I was saying. I hate meeting new people.. for I don’t really have much to talk about and I freeze up and feel out of place.. I hate being asked what I do for a living and then have to explain what living is like this way. Believe me I hate more then anything not working anymore.. I love being a social worker and love helping others to empower themselves and not feel alone. And I especially hate most days I feel alone and cannot grab the inner strength to empower myself. I have made it to the gym four days this week and that is a huge victory for me.. but I pass out several spoons to get there and workout. I once ran six miles a day and played volleyball one night a week.. and now after the gym can’t do much more that day. This past weekend I had a very important birthday party to go too for a very special little boy in my life..it was loud and crowded..a hundred different people.. neon lights.. loud music and conversations going on around me..I spent most of that party outside.. had to keep leaving to calm myself down.. and my head hasn’t stopped pounding and my eyes haven’t stopped twitching since that day. Such an important day and life event and another reminder I just don’t live in the world I once did. Not all reminders are bad tho..I daily am reminded that I am Rory’s mother.. mother to a 14 year old girl that lives in this world with me and always has a smile on her face and a understanding in her heart for these moments..a wise insightful girl.. who no matter what loses hope or faith in me.. she never gets upset or mad for things we can’t do.. she never gets frustrated for moments where we have to leave or we just can’t be there. She is the queen of silver linings..she is the fuel for most days and the reason I push when all I want to do is retreat. I remind myself that all the bad this has brought to her life will one day produce good from her experiences.. I believe Rory will have a significant impact on others like me in the brain injury community and their families.. she has a way about her.. a knowledge and healing power that I remind myself will bring peace to others. I am reminded that my mother is there.. even when sick and dealing with her overwhelming and scary health struggles..she is the master of passing out spoons and never keeps one for herself. I am reminded daily she is present and will continue to be for the good and bad.. she celebrates the victories I think are foolish and ridiculous to celebrate. I am reminded that I have friends that are family and daily check on us and help us to carry out daily life.. and when I can’t be there.. they make it possible for Rory to never miss out on anything. I have this family of friends that understands and makes me feel accepted and loved even when I have to cancel and let them down..they never make me feel weak and never make me feel lacking..and every once in awhile they make me see me just as they do. I am reminded I have the most amazing doctors and therapist.. they always listen and never rush me when together.. they analyze everything that pops up and help me to regain my health and best quality of life. And I am reminded daily I am here and always have the choice to see the gifts around me.. to embrace the good days and moments even if they cost me other days and moments. I also remember how to climb and fight..I always remember my heart is the strongest part of myself and no matter what never fails me..as dark as it gets at times.. as hard as it gets.. my heart always kicks in and makes me get up. I also have a Daniel..through all of this is calm and peaceful.. never lets me for a second feel bad about what I can and can’t do.. never would let me feel guilt for things he misses out on or has to compromise on. He continues to choose this life and me..he continues to be my biggest fan and tries so hard to make me a fan. He daily tells me we will get through this..we always do.. better days are ahead and will always let me pick what sappy Netflix movie we will watch on my couch. He never complains about the restrictions or changes my health has had in his life.. instead talks about what gifts this life has brought to his. I am reminded daily I have a Kari..a Deena..a Amy.. a Jnell.. a Toni..a Heidi..everyday they make it there job to remind me they are there and won’t be leaving anytime soon… they never waiver or give up.. they make me feel better about unloading on them.. they show me grace and understanding that I don’t often think I am worthy of. Rory has a Belle..a Lilly.. a Irelynn..a Sydney… true friends that just like their mothers make it a point to bring her sunshine on the cloudiest days.. that bring laughter and a lightness to her and make her feel like a carefree kid. I am reminded we have a forever home at IlluminaTe..a place Rory and I find refuge in and always are greeted with a million hugs and smiles when we walk through the door… a constant in our lives.. that heals us both and brings forth indescribable love and support. So as in life..bad always comes with good..and with the hurtful reminders come the reminders of healing. I may remember the life I once had and the person I was..but the reminders of this life and who I am now and who I am surrounded with make me realize and remind myself this is where I am suppose to be.. this is who i am.. and instead of focusing on the cant’s I focus on the I will someday and I will with those around me that remind me I am never alone and I am never less then what I once was. At the end of the day.. I am reminded I had another day.. and that reminder is the best reminder of all.
Crazy to think it is already November..the hands of time tick at light speed these days.. before we even notice the day has almost ended and we are focused on prepping for what the next shall bring. The clock ticks a little slower in the morning when I enjoy my pre-chaotic cup of coffee.. okay who am I kidding multiple cups of coffee and stumble upon my fb feed that is filled with daily testimonies of thankfulness. I enjoy reading what my friends and family are daily celebrating and giving thanks for.. as well as taking a trip down memory lane and reading my past November daily posts of what I am most thankful for.
Much really hasn’t changed for me.. I’m am thankful for every tomorrow.. for every smile I get to see on my daughter’s face and for every big and little moment shared with those I love. I am thankful for forgiveness and second chances.. the ability to not only practice those but accept those as well.. and I am thankful for every moment I feel peace and inner acceptance. I realize November is the month we focus a little more on what we are thankful for…but just maybe if we carried November’s mentality over into the next month and year.. our thankfulness and gratefulness will produce even more to cherish and praise!
Yes.. I’m having another George Bailey moment.. smiling and mentally saying in my head.. that a boy Clarence… but just maybe if we focused on every day as a gift.. and lived if it were our last.. how many magnificent occurrences that we may look over or pass by.. would we consider miracles or moments that take our breath away.
So I’m thankful for another day.. a day as Rory’s Mom.. I’m thankful for every moment that made this day what it was.. every conversation.. laugh and smile shared with others.. I’m thankful just to be here and to know every moment.. every second is a gift and to be cherished! Also thankful I have a 56 pack of K-cups in my kitchen.. just saying! I also am very thankful for you!
To shop with a brain injury is a lot like playing basketball with a tennis ball..it’s frustrating..overwhelming..and just plain tiring..but this time of year one can’t let the stresses or stimulation keep them down! So sure enough my mom and I embarked on our mission..on our third stop we popped in and out of target at the speed of light..mom and I had both had enough of the holiday hustle and bustle..as we were driving off..I spotted a woman wandering through the parking lot..she appeared lost..confused and so overwhelmed..without thinking I got out of the moving car..in fact scared my mom so bad she reached to grab me and I sadly slammed the door on her hand (sorry mom..love you) I walked up to this soul..here she was one arm..switching her other arm between her cane and pulling her cart..I said can I help you..she smiled and said yes..we walked all over the parking lot..and then she stopped and said to me while she started to cry..you must think I am so dumb..I lose my car every single day..I was in a bad accident..have a brain injury..had a stroke and some things just never came back..and without thinking I said I get that..she looked at me and said..you too..and then I said yeah me too..then she said but you look so good..in a split second she corrected herself and said but then again you can look good and be sick..can’t see your brain..we shared our stories..had some laughs about us two tbi gals living in this world..we found her car and I loaded it for her..as I was about to say good bye and walk away she said can I ask you a question..I said yes..she said are you an angel..I said no..I’m a mom who happens to just love people..then she asked if she could hug me..and I said of course..while she held me close she whispered into my ear and said don’t ever let anyone make you feel bad for being you and don’t ever let anyone including your momma tell you..you can’t do something..I started to cry ..we said our final good byes..she apologized for my sister having to wait for me( which made mom smile) and then with a tear running down my cool cheek..I realized in fact I was the one who met the angel!!! Life is so amazing..amazing how our paths can cross with some of the world’s most amazing people..crazy two people struggling with one issue can meet in a random parking lot on a Thursday!! Life is good..and once again found what I needed at Target..just not in the physical sense!!!! Peace and love!!! Smile…I am!
This is a look back from my journal, December 21, 2013.
It’s invisible disabilities week.. a week focused on making those who feel invisible.. visible. A week to highlight and spread awareness on battles most never face or see. I am a proud member of the invisible disability club..I personally have been diagnosed with multiple invisible disorders or medically deemed disabilities…most of these I didn’t even know existed until they resided inside of my body and brain..most I can’t even pronounce. To be apart of this club.. you have to develop some pretty tough skin..you have to let the phrase..you look fine.. just roll off your back. You have to look past when others question.. are your struggles and health fights truly there or do you just need attention?? Sadly in life.. seeing is believing.. and for our club this makes the fight a little harder. You deal with some backlash.. when one day you can do things and then the next you can’t get out of bed.. you cancel a lot and at times lose friends and family because in their opinion you can’t just let it go and move on..they question why you are stuck on this and can’t move forward.. but the thing is this.. this is our life.. there is no moving past what is dwelling inside.. as much as we would love to not be stuck here..it isn’t our choice..as much as we hate to have our health dictate our lives.. it does..we have to listen to our bodies and accept a life and road we never wanted to travel on. Sometimes when you are stuck in the fog.. you get focused on your personal fights and forget to look around and realize there are others out there living this life just as you are. You may not have the same diagnosis or your club membership card doesn’t look the same.. but none the less.. they are traveling a journey they never thought they would have too.. they are grieving the old them.. they are stuck in between the world that existed and now exists.. trying too navigate just how to make it minute to minute and salvage the old to combine with the new. My dear friend Kara belongs to this club..her life has been forever changed and most will never even realize to what magnitude. Kara has multiple chemical sensitivity.. the world she lived in was turned upside down.. it turned into a world that she couldn’t exist in for that world could lead to numerous setbacks.. hospitalizations and as scary as it sounds take her out of our world. Multiple chemical sensitivity (MCS) is her bodies reaction to all chemicals.. perfumes..products and lotions used on a daily basis by us all. It’s a disability that leads to overwhelming reactions to these products as well as smoke.. exhaust from cars and cleaning products. Being exposed to these items and environmental exposure to them..can compromise her health and immune system on multiple levels. Every outing.. every interaction with any human..any environment..impacts her health and triggers multiple symptoms. I can’t imagine the fear and anxiety attached to this struggle..giving your friend a hug can lead to a hospitalization and long road back to her baseline. Kara has always been the life of the party or any occasion.. her laugh alone sparks a chain reaction of endless smiles and laughter. Kara has always been one friend that is there for you in every single way..always present.. always excited to celebrate her family and friends. Kara has always been the most amazing and influential teacher.. loved by her students and colleagues..always involved and compassionate about those she felt honored to teach and work with .. she has won countless awards and been praised for her amazing role in her students lives. Kara is a hardcore athlete..not many want to face her on the golf course. These things that have defined her and enriched her life.. now have taken a toll on her health and forced her to walk away from a huge part of her heart and being. Kara is still that amazing teacher.. she teaches me daily how to get up and deal with a shitty hand.. how to make the most of each day and to always look on the bright side. Kara is still that hardcore athlete.. she battles.. braves snd beats this disability every single day! At times on my own journey I have felt alone.. misunderstood.. isolated.. but I could always meet up with a friend and work through it. Kara however does not have this luxury..a freshly showered friend or the detergent on their clothes could wipe her out and force her to lose days. Going to the grocery store for Kara is like stepping into a war zone.. I can’t imagine needing a gallon of milk and the fear and anxiety that is attached to something most of us don’t even think twice about. The grocery store.. the gas station.. school events could literally make it unable for her to breathe. I may never understand all she faces or feels.. but I see her..we all are very capable of seeing Kara and seeing others who look great but internally fight a war we never will. For a long time I just saw life through the eyes of my disability.. I couldn’t see past the fog to get another’s walk. So today..this week.. the week to promote invisible disability awareness and education..I find myself looking outside of the fog to try harder to understand and support those that feel alone.. invisible and exhausted from this life long battle. We may not have joined this club for the same reason..but everyone deserves to be supported and encouraged with all they face. Kara is still the beautiful.. strong.. hilarious friend she has always been.. it is my responsibility to take the precautions to bring the party to her. It takes a second to educate ourselves to give those we love a sense of security and stability. It takes a second to see another.. to see the road laid out before them and to make that road a easier road to travel! I will never forget the friend that found her way to my hospital bed.. who filled the room with laughter and light when I didn’t even feel like laughing or opening my eyes. I know we both didn’t choose this.. I know we both wish life didn’t lead us here.. but my friend..I am happy to be in this club with you.. I am happy to get the chance to watch you climb and conquer..and I feel blessed every time you give me a hug.. for I know what that could do to you..true friendship.. one sacrificing themselves just to make sure you know you are loved and not alone. Let’s look past ourselves and our battles to reach out to all those that are trying to just get through the day as best as they can! Invisible… visible.. disabled..not disabled.. recovered.. remission.. actively fighting..we all can take the time and steps to acknowledge.. empathize..include and support those that are trying to accept changes and regain independence and better days! Hey Kara.. you got this..thank you for once again teaching me about your journey and thank you even more for letting me be apart of your beautiful story! And for the record seeing is not believing..believing is seeing! 💚