I’m pretty confident I didn’t sign up for MS. I didn’t take a number and stand in line to obtain a short fuse, memory problems, sensory overload, fatigue, numbness or pain. Yet, I’m the infamous owner of all and more. Sometimes I feel like the quondam image of me was long ago obliterated. I’d love it if someone could toss me a magical life ring. If I could just reach it, all these symptoms would be gone; but it’s just out of my grasp.
I am paddling toward the horizon but I never reach my goal. Every day is comparable to that. Some days are good, and some days are better; but then some days are just too much. I keep paddling through troubled waters littered with stress and anxiety, unanswered questions, heartaches and trying to explain symptoms for which words don’t exist.
When you have an invisible illness, there is a certain pain associated with not looking sick. Included are physical symptoms that you learn not to advertise. There are times when you feel really good…..so good – you absolutely overextend yourself. The next day you’re wiped out, literally. The life ring would come in handy about then. Still you keep going. I’m not sure how you persevere but you do. The way you feel is definitely inexplicable.
I was diagnosed with MS almost 20 years ago. Looking back, I wonder how I could have possibly come as far as I have. How was I a single mom all that time? I’m sure I did an acceptable job as a mom, but I wonder if it would have been different had I not been diagnosed with MS. Certainly all of us have wondered “what if?” at times for all sorts of reasons.
Then again, I feel extremely fortunate that I’m simply alive. I’m not sure what my point is, but I do know I have to keep going. As they say, “only the broken wave can know the ocean.”
You really can’t make this stuff up. I truly believe that. Some days your biggest supporter is your pet. Your greatest advocate, though, can be you. Difficult days can drain you, sometimes you feel unreliable, confused and just plain useless. It usually takes me the whole weekend to become whole again after a long week. And, stress can destroy you. Any stress.
I have a difficult time explaining that to anyone. Stress can drain anyone, but when you have MS, symptoms are magnified by a trillion. One would have to really sit and think about that to understand what I mean.
More than anything, I know that when you keep going good things happen too. If the goal was more difficult to obtain, the reward then is sweeter than you can imagine. Even though some days I can’t see the forest for the trees, I know there is a beach somewhere waiting for me to be on it.
In the mean time, I keep dreaming, believing, hoping and surviving. I keep going, long after I think I can’t.
In 1990, President George H. W. Bush described the initiation of the Gulf War as drawing “a line in the sand.”
Lines in the sand. We make them every day, for almost any situation. Sometimes we don’t realize we’ve created a line. Possibly, even frequently, we wish we had…. or we hadn’t, drawn that fated line….
The thing is, even if you’ve drawn the stupid thing, you can NEVER go back and erase it. You can’t stomp it out, use a twig to write “I love you,” instead. It will always be a line in the sand. Something on which you refuse to compromise.
The proverbial line in the sand is said to be, “the point beyond which one will proceed no further.” Similarly, a secondary meaning, “a point beyond which, once the decision to go beyond is made, the decision and its resulting consequences are permanently decided and irreversible.” Wikipedia.
I think this second meaning is more of the working definition I’m speaking of, the speculation that you can never go back.
Sometimes as parents, we draw a line in the sand for our children. Then the child crosses that line. Now what? You can’t go back and think to yourself, “did I really mean it?”
I know I crossed every line my parents drew, and my mom was considered an artist. I did it without even really bothering to think. If they said ‘No,’ well, then I was determined to hurtle that line. Looking back I don’t think it was such a great thing, just more of a challenge at that time. I’m not going to lie, I was a triple threat when it came to crossing lines (I was also considered an artist, adored calligraphy), which of course does not make it okay. I’m an adult now. I realize my mistakes, right?
The trouble is, that sand is full of watercolor emotions. Love, anger, relentless anxiety, that punch-in-the-stomach kind of pain, and forgiveness too. Anything you can feel, that sand represents. Draw a line in it, and all bets are off. Sand feels like a precarious balance between the conscious and the unconscious; what you want and what you think you want. Physically it squishes through your toes and runs like water through your fingers. Try to hold a wave on the sand. It won’t ever happen.
I feel having children is kind of like sand. You can build a sandcastle and it lasts for a little while but never forever. Kids never stay the same, even though we try to make them. Choices. Eventually they make them. You draw a line in the sand and dare them to cross it. When they do, you can never go back or change your mind. You have to remain strong and resilient like the waves that keep returning to the sand. Parents everywhere hope they make the correct choices.
Just so kids know, there was no instructional manual when it came to raising you. We did the best we could with what we had in our tool chest. I think all parents say that at some point to their kids but it’s so true. Staying the course, making a stand and continuity are the most difficult choices I have ever made. I hope and pray my kids will all be okay, God knows I do.
Sometimes I wish I could shake them and say, “Wake up! Listen to me! You need to hear what I have to say!” All any parent can really do is hope they heard you the first time. We don’t say these things for our health! (I’ve heard my mom say that at least 10,000 times). I heard you Mom. I hear you now. Is it so wrong to just want everything to be okay for your sweet babies? I think not.
I just wish there really was an Owner’s Manual for having a kid. It would certainly list the high alarm rate, the specific safety hazards and unfamiliar features which accompany said kid. It would definitely tell you about any technological advances a future kid could inherently have, basic operating instructions and any peripherals included with your kid, but most helpful would be the step-by-step EZ method of deactivating said kid until trouble has passed.
People like me, those of us who tote around a diagnosis of MS, will at times appear like you. I’ve heard it said that we resilient souls who have MS are like snowflakes, no two are ever the same.
That may be true but we all understand similar symptoms can sometimes mean the same thing. Its very hard to put into words. Most of us can understand a smooth surface, like a body of water without even the slightest ripple. It’s the beautiful epitome of quiescence. There are moments in all our lives that are frozen in time, a moment where you feel…… well, you feel perfect. But even pebbles can cause ripples in our souls and our lives.
The smooth surface of water, seeing it or languishing in it, creates for me a feeling I’d like to wrap around me as a cloak when I have exacerbations. Sometimes I have to go into my mind to accomplish it. The Ocean, even with waves, is my happy place. I am a Salty Soul at heart. When someone throws a pebble into the water, it sends little waves out in all directions. You just never know how big the ripples will become. Could be nothing at all, a normal symptom such as increased pain and numbness OR it could be more significant. Sometimes I feel someone has tossed in a boulder.
That’s how it feels to have an MS exacerbation. It’s a giant game of Clue trying to figure out what caused the symptoms to worsen, how to make them better, and if they will ever go away at least for awhile. I find that when I have no stress, my symptoms are miraculously wonderful. Even I sometimes forget I have MS when I’m in my happy spot.
Now some people progressively get worse, this we know is called Primary Progressive Multiple Sclerosis. I fortunately don’t have this kind, mine is Relapsing/Remitting; meaning that I’m fine for awhile, but then it seems I have a worsening of symptoms. I sometimes wonder if I have progressed to Secondary Progressive Multiple Sclerosis. It kind of sucks either way to be honest.
I was doing well for about a year. But within the last two weeks, I started developing weakness on the right side of my body and began falling to the right when I least expected it. I started falling into walls and tripping over things like my feet, chairs, floors, etc. Even my right heel on my tennis shoe showed more wear. This may be the worst exacerbation I’ve had in years. I try not to tell people what’s going on, because I don’t like to complain.
I have an invisible disease, and if you didn’t know me well, you would not even guess I have MS. That’s good I guess, but sometimes people just don’t understand. They forget you have a disease. You don’t want to talk about it. You work on the premise nothing has happened. Inside though, the idea of these worsening symptoms race around in your brain and you pray they don’t get worse. Your colleagues and friends have sustained expectations that you aren’t even sure you could accomplish if you didn’t have MS.
So it is, I am having my second of 3 infusions today. One thousand mg of IV Prednisone (solumedrol). It takes an hour to infuse three days in a row. By tomorrow I’ll be crawling out of my skin. I’ll probably be early to work after I make a new dust ruffle for the bed, weave new area rugs for the kitchen, clean the bathrooms, give the dog a bath and maybe the cats, limb up some cedar trees in the yard, wash my car in the rain, and vacuum it out too! Yuck.
For those who don’t understand MS, I’m seriously happy for you. For those who have friends or loved ones with MS, don’t worry, we’ll be okay! It seems to help to write about it and vent, per se. You can’t understand how we feel and that’s okay. It is nice when someone asks how you’re doing, just occasionally. You can’t know what the symptom of fatigue really is with this disease unless you have it. Urinary symptoms, visual symptoms, muscle weakness, pain, numbness, tingling and I could go on and on. It’s different for everyone and therefore a generalization is not possible. Fatigue is my worst enemy. There are no words.
I do find it comforting to talk with other people who have MS, compare notes, see what helps them and what doesn’t, talk about new medications and ones we have failed. If you have MS and you are reading this, please feel free to email me, I love feedback!
We can’t always have what we want in our lives, but I am blessed with so much, and I’m not bitter about this ripple on the water. At least I’m alive. I know my kids love me and still need me. Hopefully I’ll be here on this planet for a long time, I have so many plans and dreams left to pursue. I’m trying to find a way to live on a sailboat in the Virgin Islands, my happy spot. Until then, it’s life as usual. This too shall pass.
I experienced a very emotional day today. As if the rain was not enough, I went to the memorial of a woman I never met. She passed away on her 50th birthday from brain cancer (glioblastoma). She was an amazing woman, as I read daily on Face Book, an accounting by her husband (my ex brother-in-law ~ but in my heart he always will be just that). He told the story of of how she lived, which hit me like the proverbial ‘ton of bricks,’ and how he remembered his last moments with her. I shed tears openly for him, my nephew, and her teenage son.
I found that I also cried for MY son, life lessons, and the insanity that sorrow embeds in your soul.
My son is entangled in the conflict of his life, a contest of good versus evil. A potion of drugs continues to lacerate him from the person he used to be and the addict he has become. As I listened to the pastor, the prayers and the echo of falling teardrops all around me today, I wept too for the boy I raised. When you imagine a shameful family secret called drug addiction, you never imagine it will be a story about you and your child. It never occurred to me that my child could or would be an addict.
With too many young people succumbing to drugs like Oxycontin and heroin, to name only two, I KNOW I am not alone. I feel alone though. I haven’t seen my son in months. I don’t know where he is or how he is living. I do know he is using and I am panic-stricken that he is in the clutches of the most nefarious monster known to any parent. There are too many I know who have lost their children to this monster, the little boys and girls our minds still depict them as.
I am afraid of this outcome for my own son. I struggle to understand addiction and what it means.
As I contemplate the life of a very brave woman, who fought her cancer until the end, I wonder why? Why do some have to leave and others don’t? No one seems to have a reasonable choice or a good reason. She is missed tonight by so many and the sorrow of that is overwhelming. I’m especially heartbroken for her son.
To the ones who leave and don’t want to, who fight till the end; and to the ones who are trying to wipe out the pain with whatever poison or process they can – I don’t think we will ever understand what they are going through. If they could interpret or somehow define for us the agony of their sickness or struggle, perhaps we would be able to grasp a small piece of understanding. I know I’m praying for understanding.
In the same breath, how can we clarify the loss we feel when they are gone or when someone you love is bent on self-destruction? If we could only explain to THEM how much they mean to us, if they could only know in their heart of hearts the love we have in ours, would it make it all different?
My son is not gone, he is alive at least, and I am blessed to have that. I miss and love him more than he will ever know (all my texts go unanswered). A woman I never met is now in Heaven, with the brightest light enveloping her, warming her soul and she knows no pain. When is enough ever enough? The time we spend with our loved ones here on Earth will never be enough, we can never give enough love to our children, and we can never understand enough to make the pain go away before it is irreversible. Are we supposed to want less? Is that enough?
My heart breaks for those we have lost and those who are lost.
I’ve heard it said that the secret to happiness and success in your life is that ‘your goals must match your gifts.’ Actually, my cousin, a retired Green Beret, said this to me. His goals definitely match his gifts.
When you think about it, it makes perfect sense. If your goal is to be a prima ballerina, you’re a little overweight, think you’re a great dancer, and you can even point your toe shoes with the best of ’em; your chances of fitting into that tutu and living that ethereal moment on stage with The Pacific NW Ballet is most likely not going to happen. It doesn’t matter if the tights make you look great! It just isn’t very likely, right? If this is you, look for something you love that matches your gifts.
I think part of the goal is to find your TRUE gift. I’m convinced we all have at least one gift, if not a few. Some people find their gift early in life like Olympic gymnasts or swimmers. They know right away, hey, this is easy! If your goals are not realistic and don’t accentuate your given talents, it just isn’t going to happen for you; no matter how much you think it should.
We need to be realistic in our lives. For instance, “I KNOW” I can’t sing for the life of me. I am never going to cut an album with P!NK or even sing in a crowded bar because it would be disastrous. First of all, no one wants that kind of noise grating on their eardrums. Second of all, I am completely aware that I a not a good singer. Singing is not one of my gifts. I may be artistic, love to draw and paint, even love writing. Are they my best gifts? I’m not so sure yet.
So how do you decide? How do you figure out what your gift is, which in turn could indicate your goal? How do you find peace with happiness? As my retired Green Beret cousin said, “Some people just don’t know how to recognize their gifts.” I think when it comes to gifts, you need to pay attention to compliments. If someone told P!NK she was an amazing seamstress (and she may well be for Heaven’s sake), but the blanket she made looked more like a coaster, her seamstress days may be numbered, right? God gave her a voice that is a perfect instrument, a gift! Goal matches gift? Check!
I’ve not quite identified my own gift. Therefore I’m not sure what my goal in life is. I know I have lots of empathy for my patient’s I see every day. I know I spend quality time talking with some of the older people and really enjoy what they have to say and the stories they weave. I also know I can make them laugh when they may not have been so happy in the first place. It happens every day. I’m a medical assistant today and before that a medical transcriptionist, but I’m not sure I have the correct goal and the best gifts in place. I am going to need to consider this. I do know I NEED to find my goals and gifts to be happy and have peace.
If someone would pay me to paint watercolors on a beach in the Virgin Islands, I would be in Heaven. I haven’t picked up a paintbrush in years though. I’d love to write the great American novel. I have lots of ideas saved on Pinterest but I haven’t acted on anything yet. And I’ve often said if someone would pay me to throw tiny rocks or shells into the sea from my chaise lounge on the beach (with sunscreen on of course), I’d gladly sign a contract! That last was for my dermatologist who knows me well.
Sailing. Now there is something that excites me. I can see myself sailing in the waters of the Caribbean, seeing hundreds of islands, stopping to help a stranded boater who needs a tow, exploring the streets of some distant shore – listening to the story of a local character, sharing a smile and laugh. I’ve fantasized about owning a sailboat, living aboard, sharing sunsets with my husband and our kids who would come visit, rocking in a bay while counting stars from the cockpit, falling asleep to the gentle lapping of the waves on the hull. Those are the romantic notions.
I know of course that B-O-A-T stands for Bust Out Another Thousand.
How do I get to the goal of a sailboat? I definitely can’t afford one now. We could sell the house, Harleys, furniture and stuff that we’ve accumulated of course. We would still need to work until we are least 60 though, 8 more years for me. I’m not trying to wish away the years yet! I need to stay young, (which is relative because my kids already categorize me as old).
My goal is to help others, just as I have been doing but in a different venue. On the sea. I would love to sail to Grenada or Haiti and help people continue to simply live after natural disasters. I’d like to take a child who wouldn’t have the opportunity otherwise, for a sail and give them that feeling you only get from the wind in your hair. Freedom. Its what we all search for in the end.
I’d like to help people who don’t know they need help, listen to people who have stories to tell, get in touch with the feeling of exemption. I don’t want to have to be somewhere at a certain time, I want to write the stories that I hear and sail to places I’ve only heard of. I want to put my arms around someone who could use a hug, and wipe away the tears of years of frustration.
If I could simply save our Oceans I would do that too. I’d tell other sailors to take care, not to litter, and to think of the sea as part of the family, as trite as that sounds. I think I’ve just shown you a ‘piece’ of my soul, again. Goals and Gifts. Lets all search for our own.
From my heart to yours, may you find your gifts that get you to your goals!
Since I was diagnosed with multiple sclerosis, I feel like I have been engaged in surfing a monster emotional tsunami. I’m sure there are many people on this planet with similar emotional issues, those with PTSD, for instance. While I don’t know “how you feel,” I do know that there is an inexplicable emotional intensity related to things that happen in your life, whether from the past or the acute anxiety of right this second. Giant waves are generally destructive and I feel this one is no different.
I did not receive a diagnosis of MS until I was 33. Up until that point, the early years were relatively easy with kids. When I was diagnosed and my husband left, my baby was only 1 year old. As I have said, it was a blessing in disguise. My ex-husband was and still is an alcoholic, a running theme in my life. I’ve long since forgiven him because what he faces forever is far worse than anything I’ve experienced.
When the kids were little, I don’t remember significant levels of stress. I remember dealing with problems but not stress. I think my youth was definitely in my court back then, and in my case, not ‘wasted on the young.” I was devastated when he left me for another woman (and I use the term ‘woman’ loosely). I felt especially ravaged after having just been diagnosed with a disease I had never really heard of, small children to take care of, no child support, no job, our house foreclosing, and cars repossessed.
My hands, arms, and upper body were numb, I had a broken heart, and most of all I couldn’t type very well anymore. I had to find a place for us to live, figure out how to get another job doing the only thing I knew how to do, transcription, and try to help my children deal with the loss of their dad at home, and eventually from their daily lives. I also continued giving myself daily injections of Copaxone in hopes my MS would not get worse.
I cried myself to sleep some nights, I prayed I’d wake up and “feel” again. We made it through but I have to say I know what it’s like to stand in line at the food bank for your Thanksgiving turkey. I know how it feels to pay for groceries with food stamps and have your older kids say, “I’ll meet you at the car,” because they were so embarrassed when I would pay at the cash register. When they got home though, they were always hungry.
Eventually, Annie (then about 13), asked if I would teach her how to give me my shots. I don’t know if she wanted to help or if she wanted to poke me with a needle. I showed her how though and she was actually very good at it. She did it off and on for awhile and then lost interest, like 13-year-olds can. Sometimes the injections worked for a year or two before I would have an exacerbation (a worsening of my symptoms), and I would head to the doctor for the dreaded IV infusion of prednisone and hopeful antiinflammatory relief.
You might not believe it but looking back, the stress I felt was mostly financial and the tidal wave was much smaller then, if that’s possible. Child support was unmentionable, insignificant, and when I couldn’t make the rent, we usually had to move. I always kept my children in the same school though, they had one constant in their lives, and that was their friends. Some people do well with stress, and I think I used to be one of them. I wasn’t the best at cooking, I was not strict like a good mom is, but I know I did the best I could with what I had.
My last baby learned to walk on a soccer field watching his big brothers play. Medical transcription began to save our lives. Eventually, I could type again and it allowed me to be home with the kids, go to soccer games and practices, LaCrosse, and to the barn for the girls to ride their horses. I tried so hard to give them everything I could but somehow it never seemed to be enough. Keeping up with the Jones’ was harder than I thought it would be, the older the kids got. Eventually I was able to buy our own turkey dinner, and I got to go to school functions and conferences.
The most important thing to me was my children did not have to go to daycare. I’m proud of that. Looking back, life was happy even though it was hard and there were many things ‘the village’ around us helped my kids accomplish when I couldn’t. They all know who they are. Friends dads were the father figures the kids needed and I won’t ever forget them.
The hard part seems over, but in reality I have more stress now than I ever did before. Sleep comes more fleetingly, I worry more about all my kids more than I did then. No one told me the hardest part of being a parent was AFTER they grow up. Those six ‘adults’ are my life still. I feel blessed that they trust me enough to share their problems with me, call me in the middle of the night if they need to, let me share in new relationships with boyfriends and girlfriends, and even past ones I can’t stop loving. I wouldn’t trade it for the world; though this is all part of the giant tsunami that feels like my life.
Multiple sclerosis did not create this giant wave. My choices, life circumstances, 6 kids, my husband leaving me, and everything else I’ve experienced helped shape the wave, helped bring it into being. MS was not the cause, it just gave me the catastrophic rating of a Tsunami. I don’t feel sad I have MS, I feel like “I’m doing it.”
Because of my job, my husband’s job, and mostly my husband, money isn’t as worrisome as it was before, but the stress of making the money builds the wave higher and denser for me. I’ve realized that Kevin takes care of me more so than anyone ever has, in countless ways. I’ve also realized how grateful and thankful I am for my life and all I have.
Maybe instead of trying to beat the wave, I need to surf the wave, become one with the wave and thereby make it work for me, make the wave go where I want it to go. I don’t have to let it devastate me.
Everyone knows what insomnia is, I don’t think I need to define it here. We’ve all had it. Restlessness, can’t turn your mind off, too much caffeine all day, a crazy busy day or you just woke up from a nap an hour before you go to bed (duh).
I can assure you it would be easier to levitate; simply overcoming gravity would be much simpler when insomnia hits. I have no idea why this happens to me. Is it related to stress? Work? Children? My dog, Beckham, barking like a maniac at the heat coming on in the night, 3 milliseconds after I’ve finally dozed off? No clue. I have no idea why I can’t seem to fall asleep like normal people do.
On the surface, I THINK I’m exhausted. I work hard during the day at my job, at least I feel like I do. I also spend a significant amount of time in my car commuting to and from my job, I get home and have no energy to cook (and if you know me, you know I despise this horrendous task), and honestly no desire to do much of anything. I can’t remember how I used to take care of my kids after 5 p.m. back in the day. I can’t be positive I even did.
My sleep doctor says I need to stay awake until at least 8 or 9 p.m. Seriously? All I can think about are pajamas and flannel sheets when I get home. I haven’t always been this way. I used to be able to sleep when my head hit the pillow. Now, sleeping like that is a fading memory. Of course, exercise is an important thing to consider to get a good nights rest. We all know that. I do walk at lunch during the work day but I could probably put forth more effort. In the last several months, I have lost a significant amount of weight, 60 pounds to be exact. This has helped with back pain and knee pain, but I still don’t find the deep sleep of hibernation. People who do not have multiple sclerosis most likely also experience insomnia, but I wonder if their cure could be an Occum’s Razor; (the theory that the most likely solution to a problem is the simplest one). When you have MS, it tends to throw a monkey wrench into any possible answer for any imaginable problem. I think a visit to the neurologist may be in order.
Lately it has been very wet outside. Living in the NW, you’re secure in the fact that winter days mean the sun sets early, (or the clouds fade to black sooner than normal). It’s dark when I leave for work AND when I get home. Seattle is a beautiful place to live when the sun is visible, when you can feel the warmth in your bones on summer days; and the sky really is “the bluest blue you’ve ever seen.” The surrounding evergreens are calming to be sure. We have the beautiful yellows, golds and oranges of fall, the deep greens of summer and of course the clouds of battleship grey serenading the flooding rains of winter. The view from my bedroom is actually beautiful and I do feel blessed. The rain on the roof, wind heaving through the trees and a stormy night can set us up for a cozy night indoors also. This could make one sleepy and relaxed watching a storm outside the window, right?
Most nights I can fall asleep, but at 1 a.m. I’m wide awake and can’t seem to drift off again. Maybe I should just get up, clean the toilets, fold laundry, vacuum and be done with it. I could leave for work at 4 a.m. and never be late because of traffic again. Sounds nice but when I get to work I either need an intrathecal grande quad latte drip throughout the day or a nice nap before I go to bed! I can’t win for losing.
I think I understand “Snowbirds.” This is the time of year they all leave for the sun. I crave the sun and the light. Warm blue water, white sand beaches and the warmth of the sun every day. It could be that I am 52. I don’t feel like I’m old, but I’m sure my kids think I am. Is it age that keeps me from sleeping? Hormones? Too much time on my hands? I’m of the opinion its all of the above. I sincerely thought it would take a lot longer to get old. Maybe I’m just dreaming all this too.
I often feel as if I am ‘drifting in the current.’ Some days are spelled out and others are not. Go to work, come home, eat, sleep and do it again. To me this is drifting. While I have lived in Seattle nearly my whole life, with the last 22 years spent in Snohomish, I still don’t feel like I’m home. This could have something to do with being an “empty nester” and that my kids are all technically adults. It could be that I miss the chaos of having so many children in the house, fighting, yelling, laughing, slamming doors, and repeating those ghastly words, “Mommm…. what’s for dinner?” I do miss those days – did I just say that? – Was it my fault? Did I wish those years away?
I remember thinking, ‘I can’t wait for them to be self-sufficient, do their own laundry, clean up their own dishes, drive themselves to school,’ etc. Now they have their own homes, cars, phones, lives and significant others. Is this what I wanted? Time sure flies. I used to wonder how I would get through the day with my babies, picking up Legos for the 18th time, working feverishly to get the Play Doh out of Annie’s hair, and wondering how they could lose an ENTIRE box of Crayola Crayons in less than an hour!
Now I miss those days terribly. Is this why I don’t feel like I’m home? Is this why I feel like I’m drifting in the current day after day, hoping for any sight of land?
Recently, in fact only days ago, I had the pleasure of having my daughter and her fiancee stay with us. I hadn’t seen Jody since April 2016. Now, you might think that wasn’t so long ago, but it was a world away and a lifetime ago to me. In April I traveled to THEIR home in the Caribbean and lived aboard their beautiful sailboat, (named after Peter’s mom, Mary Christine). I spent a month with the kids, and I felt like the luckiest mama in the world. But when they flew away on a big ‘ole plane 3 days ago, I couldn’t even take them to the airport because I knew I would be crying all day if I did. I knew my work would frown on this display of tears. My husband took them, and thank goodness for that. Goodbyes are just plain hard, especially for me. I knew they were going home to my happy place, a place where I feel peace, and for them, I was happy.
The first time I ever went to the Virgin Islands was in 2008 with my husband. We stayed in White Bay on Jost Van Dyke, BVI. It was ON that trip my happy place became apparent to me. See my toes?
Three and a half years ago Jody and Peter set sail in Florida eventually ending up in MY happy spot. I met them in Puerto Rico and was with them as we sailed from the Spanish Virgins to the USVI, and on to the British Virgin Islands. On January 25, 2005, Kenny Chesney released “Be As You Are ~ Songs from an old blue chair.” That album resonated in my soul and the lyrics became ingrained in my heart. This is how I found my happy place. That trip was epic for me.
I came home and tried to explain to my kids, my mom and dad and my sisters. No one really understood. It was the one place where I felt I wasn’t just floating with the current; I felt like I was home. We were there for only 10 days, but in that time I began to feel my hands again. Something I hadn’t felt since 1997. My MS seemed better in this spot. Each time I go back, its the same. I feel like I’m home instead of drifting in the current.
The kids left to go back to their home in the islands as liveaboards, and are fortunate to have jobs working for a catamaran charter company, Aristocat Charters, in the BVI. While it was sad for me to say goodbye, I feel like I played a small part in their finding this place. During the trip to the USVI, my mom met us on St Thomas. We picked her up and she got to experience the Virgins with me. Now she understands. I’m trying to get my sisters there in 2017, who knows if that will happen though. I’d love to see all my kids there at one time, and perhaps when Jody and Peter decide on their wedding date, we all will be. It has only been a few days and I miss the kids and their sweet dog, Betsy, terribly.
So for the time being, I consent to drifting with the current and being pulled by the tide until I can be in my happy place. The calendar is open and I am actively anticipating my return “home.”
Check out the kids’ blog and follow along to see what they are up to; where the coconuts grow!
Peace is what many of us yearn for. It is also a struggle to achieve anything even close at times. For many, peace never comes.
One idea of peace is that feeling you get when you take a deep cleansing breath, the air fills your lungs slowly and it feels good, almost like you forgot to breathe for a moment, and then you slowly let it out. Ahhhhhh….. You’ve just completed some dreaded task like cleaning the toilet, right? Phew! Its over! Relief. I am sure you can insert an experience of your own and understand what I mean. Peace can come at the end of a workday, at the end of a workout, after a difficult life issue is resolved or just taking a deep breath.
Finding peace for me comes when I’m in my happy place in this world, the sunny Virgin Islands, when I am on a sailboat on the water or sitting beside it on a white-sand beach. This brings peace and happiness to my soul. Living with MS can be very difficult, its an invisible illness. For the most part, not many people remember I even have it. Hardly anyone asks, “how are you?” and means, ‘how are your symptoms, how are your hands, can you feel anything more so today?’ And why should they? Those who have an invisible illness don’t want pity, they just want someone to remember occasionally that we have other issues that we deal with. I NEED peace in my life.
Stress decreases the likelihood of peace and tranquility in ones life. For someone with MS, this can be synonymous with disaster. Sometimes I feel lost in my head, unworthy, not needed or burnt out. I have fatigue you couldn’t imagine even if I tried to explain, (but I will). People say to me in the morning, ‘why are you tired, you just woke up?’ I think to myself, are you kidding!? Fatigue is more than physical. It’s mental and emotional. It’s debilitating.
Fatigue in MS is not like you just ran a marathon and you’re exhausted and need to sit down and put your feet up for a few. No. Fatigue in MS is like you just walked across the United States in 1 month with a 50-pound backpack on, dragging bricks attached by ropes to your ankles, pain all over your body (in some cases), undergoing mental and sensory overload, enveloped by stress that you wear like an itchy wool cape in the blazing sun, numbness in your hands (in my case), and walking on legs that feel like Jello ~ all while you search for a 4-leaf clover, peace and tranquility that you can’t quite find. That feeling can be overwhelming and mind numbing, yet you’re still expected to be a good mom or dad, show up for work mentally and physically, and be the spouse or significant other you signed up to be.
So, mentally and physically I persevere. I tell myself I’m doing this, even though I’m sure no one close to me quite understands. I try to think positive thoughts, I tape pictures of sailboats to my refrigerator and nightstand, I visit the Virgin Islands whenever I can. I try to visualize and maximize my chances to be in my happy place. I try to overcome the feelings of being burned out and forgetfulness by thumbing through Island photos in my mind, reliving my memories of cruising and snorkeling, imagining the sound of those waves on those shores, the sunrises and sunsets, the starry night skies while bobbing in the Caribbean sea, and all the people I’ve met there ~ and lets not forget the Lobster! Retirement is a word I only dream about but work for every day. You bring about what you think about, right?
They say that each leaf a 4-leaf clover stands for faith, hope, love and luck. Well, I faithfully hope for love and luck to take me to my happy place very soon because I truly believe that the highest happiness IS peace.
For a peace-full journey, “Enjoy Four kinds of Peace“, by Rick Hanson, PhD, here.
