woman standing in doorway looking out

Catching Up With the Year I Missed While I Was Seriously Ill


In December of 2013, several media outlets had put together their usual roundup of that year’s hot topics, trends, and newsworthy items. While others watched with amusement or recollection and even dismissal at things they’d already seen one too many times as they had unfolded in real time throughout the year, I sat enthralled, soaking it all in for the first time. For me it was like watching a documentary on the History Channel — occurrences based on truth in another time and place where I couldn’t quite envision myself.

For a while I kept an ongoing list on my phone of things that had happened that year. The list grew as I learned more and more of the things I had missed while I was “gone.”

…Nelson Mandela died… Boston marathon bombing… Olympic athlete Oscar Pistorius shot girlfriend… Edward Snowden NSA leaks… Angelina Jolie double mastectomy… Glee star overdose… Lance Armstrong admits to doping… Three missing women are found more than a decade later — Ariel Castro… The Harlem Shake (admittedly, I still don’t know what this is)… 

It was clear that the year 2013, as most other years, bestowed upon the world both great strides and significant chaos. And while the existing world expanded to welcome a new Pope in Argentina and a newborn royal heir in London, the world in which I lived shrank to one little insignificant hospital room where everything of note revolved around the fantasies and hallucinations created by the monsters in my mind.

It was the beginning of that year, January 2013, when I began feeling symptoms of an unidentified ailment. By March I was completely overtaken by the illness that would be identified as anti-NMDA. My conscious memory of that time period mirrors the path of the disease, as it began to fade a few days before I entered the hospital in March and then gradually returned once I was released from rehab that August, leaving little more than a dark void peppered by incoherent dreams in between. And even as I began to pick up the pieces and recover, I don’t feel as if full awareness really took hold until the end of that year.

During my time in the hospital, there came a point where I no longer even had the means to access what was going on in the world around me, not that I could have retained the information anyway. Easily annoyed and quick to anger, my cell phone use was monitored and the television was removed from the room, so as not to ignite the pit of anger bubbling just under the surface at all times. And although it seemed as if my brain was always moving 1,000 miles per hour jumping from one topic to another, I had no power over what it chose to focus on at any single moment and I certainly did not know how to slow it down or control the chaos. I’m sure this is the reason I couldn’t sleep for any significant amount of time and why I had struggled to comprehend even a simple half an hour sitcom. Oftentimes, I couldn’t recall when I had last eaten, who had been to visit me that day and even the names of my family members.

Although, to be fair, in that highly tenuous state of mind, how on earth would I have been able to wrangle my fevered brain around the latest worldly happenings that included twerking, catfishingSharknadoMiley on a wrecking ball and the mad antics of Toronto Mayor, Rob Ford? Well, maybe I was better off missing some things that year… And thanks to media and modern technology where everything is captured on camera and documented, I didn’t really miss out on these things. So when it came to dwelling on the year’s current affairs that I had blissfully bypassed, eventually I followed suit with the largest grossing film of that year and just “let it go.”

Alternately, the more significant deficits that cannot be recompensed and continue to weigh heavily on my heart are newsworthy on a more personal level where photos and Facebook posts combined with imagination are not enough to sustain real life memories and experiences… The pride of watching my youngest sister, Brianna, accept her college diploma as she graduated from nursing school… the treasured family memories formed at my older brother, Shawn’s wedding… the joy of learning of my best friend, Monica’s second pregnancy… These are the things for which I struggle to let go; the things that are harder to forgive of the cruel thief that is encephalitis.

When diagnosed with a serious illness, we tend to think the world stops in its tracks — and on a personal level it certainly does to an extent. But the world does, in fact, continue to spin around us and eventually you will come around to find that everything has changed. Those around you have gotten married, had children, moved away, passed away, gotten a promotion. Technology evolves, records are broken, fads come and go and history is made every single day. It can be hard to imagine that time doesn’t stop when you do, and even harder to adjust to a world that seems to have moved on without you.

But when you do find your way back and once again join the land of the living, please consider this: embrace it. I urge you to dwell less on the things you missed, for however important, that cannot be changed. Instead, I challenge you to contribute, to be present, to open your eyes to the awesomeness of an ever-evolving journey and make your own mark so that even as the world around you continues its course, your personal imprint will forever remain.

Just please, don’t twerk… and will someone please explain the Harlem Shake?

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mother hugging two sons while on the sidewalk

10 Lessons I Learned Parenting My Sons With Sensory Processing Disorder


It’s been eight years since a team of therapists from early intervention diagnosed my oldest son with sensory processing disorder (SPD). Before that evaluation I had never heard of sensory processing disorder or the acronym SPD. At that point in my life, our family life seemed so chaotic. Most nights I would get into bed feeling utterly exhausted. I felt hopeless.

Today our world is totally different. My oldest son has gone from severe SPD with a major speech delay to pretty much being like any other typical fifth-grade boy — who loves to talk. (My daughter says he’s making up for those four years he didn’t speak.) My youngest son was also diagnosed with SPD when he was 18 months old, and today he no longer exhibits symptoms.

In the past six years, I have talked to thousands of families from all over the world through my nonprofit, SPD Parent Zone. A majority of those families are just starting out their journeys and feeling the same hopelessness I had felt after my son was diagnosed. I started SPD Parent Zone so I could make it a little bit easier for those who followed in my footsteps. I wanted to provide them with answers and hope.

Here are lessons I’ve learned that I share with those families:

1. Believe in your child!

All our children need is for one person to believe in them. I always felt if I didn’t believe in my children then no one else would. Sometimes it’s going to be very hard to believe, but keep on believing. Even if your situation looks extremely hopeless, continue to believe.

Believe in their diagnosis, not their prognosis. Believe they are more than their labels. Keep pushing forward and block out all the negative comments from other people who don’t understand.

Remarkable changes will happen. Believe that it’s possible. When you believe, you begin to take action. When you take action, you bust down those walls. Most important of all, when they see you believing in them, they will begin to believe in themselves. That’s when the miracles happen!

2. Believe in yourself!

Always trust in your intuition. We intuitively know when something just doesn’t feel right with our children. Sometimes we talk ourselves out of it, and other times well-meaning people like doctors or family members can lead us away from our intuition.

No matter what, always trust in that feeling. The doctors and teachers are experts, but you are the expert when it comes to your child. No one knows your child better than you do. Trust in that and act on it — the sooner the better.

3. Surround yourself with people who understand your child. (This is a biggie!)

I’ve found the saying, “It takes a village to raise a child,” to be so true. Finding that village can sometimes be very hard, but if you keep searching, you will find them. It took our family a couple years to find the right school and team of people for our children.

When we found those people, our children began to instantly thrive. There are people out there, and they will make your life so much better. If you are having trouble finding them, check out the STAR Institute’s Treatment Directory for a list of the experts who live in your area:www.spdstar.org/treatment-directory.

It’s also extremely important to surround yourself with people who understand you and what you’re going through. There are countless families all over the world going through the same situations you’re going through. You are not alone. You are amazing! You can learn valuable lessons through those people. If you’re having problems finding them, please contact me anytime. I’m more than happy to help you find them.

4. Never give up!

Some days my kids took two steps forward and 10 steps back. I wanted to give up many times, but their therapist told me that regression is all part of the process. Focus on how far you’ve come, not how far you have to go. Keep pushing forward a step at a time. All of those small changes will turn into big lasting changes in the end. Nothing will get better if you don’t work at it!

5. Research, research, research.

Knowledge is power! Try and learn as much as you can, so you can understand your child and help them get better. I spent endless night after endless night researching SPD online and through books. It can be really overwhelming at first. A great way to learn is by asking the experts: parents of kids with SPD, therapists, teachers and doctors. Families who have been through it have learned through lots of trials and errors. Ask them what they’ve learned. View STAR Institute’s Research page for more information. www.spdstar.org/landing-page/research

6. Make yourself a priority.

One of the hardest and most important things to do is to take care of yourself. As a parent of a child with special needs, we feel guilty taking time for ourselves. It can be a challenging task to be a parent of a child with SPD. Taking time for ourselves allows us to feel refreshed and recharged, so we can handle the roller coaster of emotions and be present for our family. It is not a selfish act. It is a necessity.

7. Get into their world.

My daughter taught me this extremely valuable lesson early on. Whatever my son was doing, my daughter would be right beside him doing the same thing. When my son was younger, he loved to spin. My daughter would stand right beside him and spin, too. Every so often he would look over at her, and they would fall on the floor laughing hysterically at each other. Then they would get up and do it all over again.

She went into my son’s world and pulled him out. Follow your kid’s lead. Do what they’re doing and don’t be afraid to get silly. It will help them learn to trust this sometimes scary world.

8. See the world through their eyes.

By putting yourself in their shoes, you become much more understanding of their feelings and needs. I just couldn’t understand why my son was such a picky eater, hated his fingernails clipped, screamed when we would wash his hair and screamed when I flushed the toilet. It all made sense when I learned about SPD (pun intended).

It helps both of us when I look at the situation through his eyes. I have more patience with him. This is why it’s extremely important to surround yourself with people who understand your child. It might seem like they’re a bad child and misbehaving (especially in school). If you have someone who understands them, they’ll be able to give your child the tools they need to handle the situation appropriately.

9. Don’t listen to the naysayers!

Pretty much everyone I have talked to has spoken about naysayers. And many of them have said that the naysayers have turned out to be people who are closest to them — family and friends.

When my children were a lot younger, I received a lot of unwanted parenting tips from total strangers in the grocery store, at the mall, restaurants and public restrooms. It was tough. It’s especially tough when it’s people who are closest to you.

I’ve found the people closest to you are trying to be helpful, but they just don’t have the correct information. Don’t worry about what they say! You have to believe in yourself and believe in your child. Just keep moving forward and ask the advice of the experts!

10. Be thankful!

Concentrate on the things you do have, not what you don’t. Whatever you focus on grows. Focus on the positive and the positive grows, focus on the negative and the negative grows. No matter what your situation there is always something to be thankful for. Just think. There are many people who would love to be in your situation. Be thankful for all your blessings.

Bonus: 11. It does get better, and there is so much hope!

For about the first year after my son was diagnosed, every doctor and therapist we went to said he was the most severe case they’d ever seen. He was kicked out of preschool, all the baby classes and different sports teams. I was terrified for his future and felt so hopeless.

Fast forward eight years, he’s been at the same school for the past five years. He plays on the basketball, baseball and football team. He has tons of really great friends. I’m not saying all of this to brag. I’m saying this because I never ever thought any of this would be possible.

After his diagnosis, my hopes and dreams for him were to just be able to eat more than three foods, sleep through the night and be able to speak. I feel my son is so successful today because we did all 10 things above.

I’m definitely not perfect and neither is my family. We have good days and bad days. It’s taken a lot of work to get here, and we’re still growing each day. I say this because I know that if we can do this, then so can you! I truly believe that. You got this!

child holding pumpkin with spider on fall leaves, halloween

I Saw My Son With Autism Not Dressed Up for Halloween. His Teachers Saw Something Else.


I am one of those people who truly loves Halloween — not the spooky, scary side of the celebration, but costumes… oh yes I love costumes. Give me a reason to dress up, whether it’s halloween or a theme party, and I am 100% committed. When I was a child, I bugged my parents for months leading up to the big day of October 31 by evaluating every possible costume I could potentially dress in that year. By the time the actual date rolled around most of my family was exhausted by my obsession with perfecting just the right attire for the big night.

Like so many parents, I looked forward to sharing these experiences with my own children. When I had my first son, I was elated to be able to dress him up in costume; he was an adorable 4-week-old pirate, a 1-year-old lobster and a 2-year-old Cookie Monster (even if he wouldn’t keep the head on). It wasn’t always easy figuring out how to maneuver a baby into these ridiculous ensembles, but the pictures are treasured, and my love of halloween, costumes, and trick-or-treating remained.   Then my son turned 3, and it all came to a screeching halt. 

While we had been engaged with early intervention and various therapies since my son was 18 months old, it was right around his 3rd birthday that we received the official diagnosis. Our son is on the autism spectrum. Nothing had changed yet, everything had changed. Many of the simple day-to-day ritual or family outings that most people take for granted were already not part of our norm for a variety of reasons, including our child’s sensory issues, meltdowns or challenges in large groups of people. Yet somehow the notion that Halloween would no longer be a cause for fun and celebration was simply not something I had considered.

That Halloween when my son was 3 we just barely got him into a t-shirt that resembled a pirate costume. He had the hat, eye patch and sword in the wagon next to him, but it was enough to feel as though we were a part of the day. Then last year, when he was 4, it became apparent that my grand plans for family-themed costumes and our first opportunity to attend a halloween parade at his pre-school were simply not going to go as planned, or at least not according to my expectations. The parade included every grade of the elementary school from pre-k through third, and it was wonderful. The kids looked great, the parents were out in full force, cameras were flashing at every turn, and the school did a wonderful job. When my son’s class came out I waited with anticipation. I had not been able to convince my son to wear his costume to school but sent a note to his teacher that morning explaining it was in his backpack and that I thought there was a good chance seeing the other kids in his class dressed up would make him want to participate.

As his class entered the parade every single child was in costume… except my son. He was wearing an black Adidas running outfit that was to be the underneath of his costume. I could feel or at least imagined I felt other parents wondering who the poor kid was whose mom forgot about the parade and costume. I could barely choke back tears as I realized yet again how different our experience was compared to other people’s, but I proudly stood by clapping and waving and taking pictures of my little guy.

Needless to say the actual night that followed also did not go according to plan; my themed family costumes of Ghostbusters with our younger son dressed as the Stay Puff Marshmallow Man did not appeal to my older son. We tried again and again to no avail, and by the end of it he was so out of sorts (and so were we) that we never even made it out to trick-or-treat. This was not my finest moment as a parent. I had focused so much time and energy on creating a Halloween experience that would meet every Pinterest expectation that I forgot to focus on what was really going on in the mind and world of my child. He doesn’t like costumes, he doesn’t like to pretend he is anyone other than who he is, he loves imaginary play, but we can’t call him Captain Charlie or Superman because then everything goes downhill. I may not get it, but I can and have certainly learned to accept it.

The following Monday I received several pictures of the school parade via our parent email with countless notes from his teachers, aides and therapists all telling me that due to his sporty retro-sweatsuit combined with his good looks they all decided he was dressed as Ben Affleck from “Good Will Hunting.” I laughed and cried with these notes because it humbled me and made me realize that how we choose to look at a situation and how we choose to celebrate regardless of what is the “expected norm” matters more than what we think should happen.

His teacher told me she was so proud of how my son had walked in the parade, how he stayed with his class and held hands with his two friends the entire time. He didn’t freak out at the number of family members crowding the area or cheering and yelling. He simply stayed with his group and smiled the whole time, and he had fun doing it.  

So here we are in October yet again. Normally I would have started thinking about costumes at least a month ago, but this year I have decided to step back and see what happens. My son told me he wants to be an astronaut, and I think that is great. We will go pick out a costume together, he may or may not wear it and we may or may not make it out to trick-or-treat. If we make it out that night and he is not in costume, I will not worry about what people think or if anyone is annoyed at giving candy to a child who is not dressed up or may not make eye contact. None of it really matters to me any more. The realization that we are creating our own family memories and traditions that may look nothing like what we thought they would but are uniquely special in their own right is all I need.

Image via Thinkstock.

girl dressed in a pink bird costume.

Kmart Australia Features Girl With Down Syndrome in Its Latest Commercial


Playtime has never looked more inclusive, thanks to a Kmart’s latest commercial. The 30-second advertisement features a young girl with Down syndrome dressed in a pink bird costume playing with a boy wearing a dinosaur costume.

Girl wearing pink bird costume

“We are thrilled to see Australia Kmart getting onboard with inclusive advertising,” said Kathyrn Driscoll, president and founder of Changing the Face of Beauty, an organization dedicated to promoting inclusivity in advertising. “Brands can change the way people with disabilities are perceived by valuing them as consumers in their advertising.”

This is not the first time Kmart Australia has featured inclusive advertising. In March, the retailer’s catalogue featured children with disabilities. Since then, every catalogue has featured at least one child with special needs. This month’s catalogue features a differently abled girl on multiple pages playing with a variety of toys.

Image of a Kmart catalogue of different children playing with different toys.

Will inclusive advertising make its way over to the States? A spokesperson for Kmart U.S. replied to The Mighty’s request for comment saying “[T]he United States is not associated with the Kmart in Australia.”

You can watch the commercial below.


Woman listening to music lying on grass

5 Songs to Help You Through the Tough Times With Apert Syndrome


Famous musician Elton John once said, “Music has healing power. It has the ability to take people out of themselves for a few hours.” Music has definitely been a constructive outlet for me to help get me through a rough day. There have been playlists for songs to get you through depression, songs to get you through anxiety, songs to get you through chronic illness, and many more. But I have never seen a playlist of songs to get you through the struggles and doubts of living with Apert syndrome. And trust me, they exist. Here are my top songs when the reality of living with Apert syndrome brings you down.

1. “Born This Way” — Lady Gaga. Gaga says it all. “Whether life’s disabilities, left you outcast, bullied or teased. Rejoice and love yourself today.” This song has been a mantra to me ever since I first listened to it. With its catchy tune and uplifting lyrics, the song speaks out to the truth the world has to see. We are all human and we are all born this way. Gaga’s self-empowering anthem has definitely helped give me the strength to see that our differences shouldn’t matter.

 

2. “Brave” — Sara Bareilles
I wish this song was around more during the period when my life was consumed with surgeries. Even if it wasn’t, it still provided as a useful boost. I listen to the song and I can feel what Bareilles is trying to say. You can be whoever you want to be and be able to speak your mind without having to worry about what anyone thinks of you. Let your voice be heard and fill yourself with the courage to be brave. Most of all, fill yourself with the courage to confidently say, “I have Apert syndrome and I’m proud.”

 

3. “Fight Song” — Rachel Platten
Again, this song wasn’t there for me when I had my surgeries. But it still counts. The lyrics are enough to motivate anyone and give them a purpose to keep going. After all my surgeries, they’ve given me full power to move forward from it and carry the strength and endurance left to never give up, no matter if people are still judging you.

 

4. “Part of Your World” — Disney’s “The Little Mermaid”
Everyone needs a little Disney in their life, right? Although I am not, nor have I ever been, a mermaid, I feel I can relate to this on a bit of a similar level. When I was little, I’ve always had a bit of yearning to be just like my peers. I knew I was different from them, and the reception I’ve been given all my life because of my Apert syndrome has made me feel like I was from a different world.

 

5. “What Doesn’t Kill You Makes You Stronger” — Kelly Clarkson

Although Apert syndrome is certainly not life-threatening, living with it has felt on some occasions like you have been beaten down and wiped out. People with Apert syndrome go through a fight every time they have to go in for a surgery and also during school when they’re trying to find acceptance and kindness among their peers. It’s a struggle because anyone with Apert syndrome can probably tell you they fear the inevitable time when they have to be wheeled into the operating room for a surgery, or when they’re trying to look for a good group of friends to sit with in the cafeteria at lunch. This song gives off the positive and inspiring feel that no matter what, we can become fighters and through every surgery we’ve ever had to deal with, there is a chance we become stronger.

There are definitely more that I can think of, but these are the top five that have helped me through some trying periods when my Apert syndrome makes me feel inferior from my friends.

If you have Apert syndrome and you feel inferior or are struggling with an upcoming surgery, just take a listen to any of these songs. They can really help lift you back up when life knocks you down!

People and solitude concept. Alone woman looking through window waiting back view indoor

A Window Into the Isolation of Lyme Disease and Chronic Invisible Illness


Isolation even sounds like a lonely word. To be isolated is to be set apart, to be alone. Lyme disease is an isolating illness. Like a deserted island in the middle of a vast ocean, Lyme patients are an island to themselves.

Facing the diagnosis of Lyme disease thrusts you into a frightening world. Setting you apart from mainstream medicine, the medical help that is so desperately needed is often unreachable. The common, flawed medical opinion sets the patient apart from understanding. Apart from sound medical advice. Apart from a clear path to wellness. Apart from any real hope.

This
 is Lyme disease. Living life in a proverbial box that has invisible bars preventing any means of real escape. The bars of chronic illness. A silent prison.

Solitude is something that I struggle with on a daily basis. Lyme disease has a way of forcing isolation upon you. You do not feel like participating in life in general. Most of the time just carrying on a normal conversation is exhausting. I am isolated not because I am physically alone, but because I do not have the energy and endurance to interact with my family and friends.

I spend many of my days in silence. Not because I do not have anything to say. I just simply do not have the energy to talk. I am often thought of as being a quiet person. My Lyme fatigue and pain have played a huge role in dictating this silence.

It is all I can do most days to put one foot in front of the other. To do the things that have to be done. Simple tasks to be sure, but necessary pieces of daily living. Things like going to appointments, taking care of my young children, doing the laundry and cooking simple meals.

Small talk takes too much energy. So, I rarely participate in surface chats. More often than not, I find myself completing certain tasks with tears running down my face. This is exhaustion, pure and simple. It is the voice that says, “I can’t go on.” I try to block out that voice quite often, instead choosing to listen to the voice that says, “I must go on.” To quit would be to give up entirely. I cannot afford to give up. My family depends upon me.

One of  my sons recently mentioned that my husband told him I used to be a vibrant person. That in past years I was very energetic and enjoyed life to the fullest. When I heard this, it made me terribly sad. Lyme has slowly taken away so many bits and pieces of my life. When I look back over the landscape of my life I can see the steady falling away of the things I used to love most in this world. The special “extras” in life that make living so colorful and worthwhile. Lyme is a thief. It takes and it takes, but it never gives back.

During a recent extended weekend I gained a new perspective of the isolation of my chronic illness. I spent several days with my extended church family. I was in a crowd of several hundred people for the better part of four days. Yet, I felt alone. Alone with my pain. Alone with my struggle to keep up. Alone with my thoughts. Alone with my fatigue. Alone with Lyme. Just alone! Though this was absolutely no one’s fault, it is the truth!

As I sat in this gathering, a place filled with much love, friendship and fellowship, I was not physically alone. I accepted many smiles, hugs and even an occasional kiss on the cheek. But, when it comes to the daily inward and physical struggles that go hand in hand with Lyme disease, these experiences are often accompanied by a very strong feeling of isolation.

During this particular weekend, I was approached by several friends. Each friend in turn told me how well I looked. One person in particular was not even aware that I struggle with Lyme disease. Upon learning this fact about my life, she commented that I always looked like I was doing so well! That I looked so put together and healthy. This is a common misperception that goes hand in hand with invisible illnesses.

This is the mask of chronic invisible illness. I put this mask on every time I go into a public place, to any social event. Even when I am just out running typical everyday errands with my family. I might look well on the outside; on the inside I am literally falling apart. I am a master at acting healthy.

The myriad of physical struggles that I face each and every day go unnoticed by virtually everyone around me. It is a silent epidemic that drains me of all necessary energy. It is my reality. So at the risk of sounding like a habitual complainer, here is a ticket to my inner struggles. A trip through my everyday realities. A window to my isolated world. A window looking into the struggles of chronic Lyme and chronic invisible illness.

  • No one sees my struggle to get out of bed every morning.
  • No one sees the constant muscle spasms in my arms, neck, shoulders, back and legs.
  • No one feels the deep toothache pain in my knuckles, toes, ankles, hips, knees, elbows, shoulders, and spine.
  • No one feels the constant tremors that wrack my insides. Most of the time, I feel like I’ve scarfed down five espressos in a matter of minutes.
  • No one hears the constant ringing in my ears. Think of cymbals being clashed right next to your ears and then dealing with the repercussions of that event all day long. Only there are no cymbals, the ringing is just there.
  • No one feels the constant migraine like headache in my temples and gripping the circumference of my head. Like heavy hands with an iron grip.
  • No one feels the buzzing, electrical-like jolts that travel around the base of my skull and up over the top of my head.
  • No one feels the side effects of the many supplements, tinctures and medicines that I take for my treatments.
  • No one feels the tightness in my chest and throat. (“Thank you bartonella,” said with extreme disdain.)
  • No one feels the squeezing, crushing pain of costochondritis in my chest.
  • No one feels that awful smothering feeling that stifles my breath. (“Thank you babesia,” said with much sarcasm.)
  • No one notices that my left foot drags slightly when I try to walk too fast.
  • No one feels the numbness of my toes and fingers. (Thank you Raynaud’s disease — not!)
  • No one feels the numbness over the left side of my face, remnants of Bell’s palsy from years before.
  • No one feels the nausea that is my constant companion.
  • No one feels the clenching pains in my stomach before, during and after every meal.
  • No one feels the fogginess and strange thought patterns that cloud my mind minute by minute.
  • No one realizes that my heart is beating over 100 beats per minute as I sit quietly listening to a speaker. (Thank you, tachycardia.)
  • No one knows that my blood pressure is often either way too low or extremely high. Often jumping between one extreme and to the other in a matter of seconds.
  • No one feels the faintness, the dizziness when I stand.
  • No one feels the tension and searing pain that builds in my lower back and shoots down my legs due to bulging discs.
  • No one sees the terrible ache in my neck from severe bone spurs and osteoarthritis.
  • No one feels the bone deep ache in my groin or the bulge near my hip joint.
  • No one feels the intense pain from the curvature in my middle spine.
  • No one feels the intense itching of my scalp due to psoriasis. Or the crawling feeling that creeps over my skin and makes me silently squirm with itchiness all day long.
  • No one sees the constant insomnia that accompanies me to bed each and every night.
  • No one can feel the crushing fatigue that demands I lay down. That makes every movement, every word I speak, every task I try to undertake a form of torture. Fatigue that insists I must go to bed right away. That insists I cannot go on.

No one sees or feels these struggles. I don’t expect them to! I rarely talk about them. These are simply the isolating sensations of every day life for me. They are inner struggles, inner sufferings. They are my “normal.” They are the many pieces of the puzzle that are Lyme disease.

Dealing with these symptoms on a daily basis is difficult at best within the confines of my own home. But, when I try to step outside of my small world and actually function and attend social gatherings, these symptoms escalate to mountainous proportions. When I try to engage in any kind of social activity, my life quickly becomes a nightmare. An extreme version of “A day in the life.” Like one of those terrible reality shows where drama lies around every corner. This is what it is like when I try to be a part of life. I pay for it. Plain and simple. I have to pay for it, every inch of it! Gone are the days of living spontaneously. Every activity must be calculated and planned for.

As isolating as it may seem, I have come to enjoy the peace and quiet of home. I manage best when I stay inside the small compartments of resting and quiet days. I literally live for the days when I can actually rest. The days when I do not have commitments. Those days are my version of heaven on earth. Days when I can let my constant guard down and just be. Days when I do not have to wear the “mask of wellness.” Days when it is OK to be sick.

Everything else outside of that small box is a struggle. This is what life is like with Lyme. You lose contact with friends. You lose contact with family because at the end of the day when the choice is presented between a phone call and a bed, you take the bed hands down every time. When you have that chance to meet for lunch or invite someone over for dinner, you cannot handle the consequences that go along with the commitment. You choose rest over socializing. This is chronic illness. This is chronic late stage Lyme.

On the flip side, while I do find being in a group isolating, due to the many silent struggles I face with my illness, I have learned that sometimes, I need to make the phone call. I need to reach out to others instead of  climbing into bed. I need to put my struggles on the back burner, if only for a moment. (Even though in reality I really can’t truly set them aside. They are chained to me whether I want them to be or not.) I can hand my worries to God and step out in faith. That is what I did during that recent weekend gathering.Even though it was very difficult and I will pay for it for quite a while. It was nice to be a part of the group in some small way. To be in the “crowd” so to speak. Lyme disease can feel very isolating at times, because so much of the struggle is silent and hidden from the human eye. It helps when you are surrounded by family, friends and fellowship. Even if they can’t see the inner struggle, they appreciate the effort I made to be there. Isolation is often a frame of mind. I just have to learn a balance in sharing bits of my struggle with others to help them understand my limitations.

Isolation in chronic illness is often unavoidable. It comes with the territory. I have accepted it. Even though I often worry about sharing too much, about being a burden to others, I can make all the difference by being willing to share my journey — by letting others into the small compartments of my life and then letting go and realizing that everyone has struggles. Yes, we are all different. But we are also all human beings. That is what brings us together and keeps the isolation at bay. We need each other in some small way. Like that familiar quote, “Friendship isn’t how much we talk. But instead, how much we are there for each other in times of need.”

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