The Veil

I have been wondering whether to write this piece as it can be hard to read for some and harder for many others to understand, but whenever I return to the question of intention I am convinced I am doing the right thing for the right reasons.

And here it is…

By now, after all these years, many of my friends and loved ones have all learned about my health challenges. It was just a mere concept to many people and a great many chose to simply ignore it. I really didn’t mind which way people chose to go as it was far more important for me to be able to accept what was happening and less important why they left.

Time went on…

For these and other reasons I rarely explained in detail the challenges I was facing and so my health simply drew a veil between me and the world that everyone else lives in. I could see out but no one can see in.

Many autoimmunes are forced into this kind of life and existence, tossed around by a sea of forces that no one ever really sees or recognizes. It’s mostly overlooked but nevertheless that’s how I live now. That’s how I exist now.

Occasionally someone will come along and dare to see the reality and look below the surface but they are rare and I have to be mindful of what the real intention is. Is it to appreciate or simply judge? At this point few people know the truth of day to day life and it is often usually only other autoimmunes that will see and understand the most.

Until.

One day an old friend contacted me out of the blue, feeling overwhelmed and confused that a close relative of his had suddenly been rushed to hospital facing a diagnosis of a very difficult autoimmune disease. My heart sank for him. My mind went back to my own decent into hell and panic. It’s not easy and there are so many more questions than there are answers. It can feel like the sky has fallen upon you as you slowly start to try and put some of the pieces back together.

As the months have drawn on and the realities are slowly lighting up like neon signs for this dear friend I can only do my best (based on my experiences) to console and support him. He aches and empathizes for the loved one going through it and although he doesn’t know it yet, he will be changed forever.

What he is witnessing is painful, soul crushing, maddening, frustrating, frightening, confusing and the ultimate cruelty, but the only consolation is that it is not happening to him. He is not personally facing the life sentence his loved one is. But it’s bad enough to have to bear witness to.

On that moment I realized that at last someone I know can have some idea what it’s like behind the veil. Although I dearly wish they didn’t have to. Things are not easy behind here and once you truly look inside you are changed forever.

For many who have been through, or continue to go through, some of the hardest things in the world to endure (pain, loss, trauma, torture) there are few people who will ever be able to comprehend what we go through. They may have smaller pieces that they try to compare them to, but it’s not even close to the full picture that many of us see.

Often times autoimmunes go silent because we no longer share a reality or speak a language most of the world can recognize. Because the world doesn’t understand we are often looked down on, pushed away and mocked.

I recall the reaction of one family member who claimed they were embarrassed by my illnesses and life. As I heard this I felt a strong emotion of shame, but not on myself. I felt shame for the lack of empathy and kindness for the family member in question. Who they were and how they acted revealed such deeply rooted issues that I never truly saw before.

After the initial disappointment though I felt nothing.

It is a sad truth that people never really appreciate something until it happens to them. As I became increasingly aware of this I realized the only thing to do was to quietly retire from interactions and further disappointments. So I did.

Now as I talk to my old friend I do my best to reassure him, comfort him and remind him that this will be a marathon and not a sprint. He will have his own set of unique challenges and pain from his own position, and this will need to be supported too.

My husband too has his own pain and challenges that he carries and no one sees. No one calls him offering support or an ear. He is on his own in many ways.

No one gets out unscathed.

There is never a time in which real love is so keenly revealed as it is when there is a health crisis. Those that love deeply will stay, no matter what; despite every impulse to leave. Despite their limitations and heavy pain they stay… that’s what love does.

I don’t blame or harbor any ill will towards those that have gone. Their choices do not make my days any less busy or challenged. I have to keep going with or without them. Thus we must choose carefully those we take along with us on this journey. They have to make for an effective team or they are simply dead weight.

My friend will, in time, see many things come to pass. The fear. The depression. The loss. People coming and going. The drug trials. The frustration. It will run the gamut of emotions and experiences for him and his relative.

  • All I can do is be there when he needs me. And I will, because that’s what the autoimmune community can do for our own, and we should do be able to do it well!
  • Gentle hugs

    Trish

    Hope

    There seems to me to be so many misconceptions around the concept of hope and how it exists within each of is that it is only at this stage of my life that I have had the time and ability to truly consider and address them.

    The common belief that hope springs eternal is no longer one I adhere to. Not even close. It is one of the most

    I personally believe that hope is like any other human emotion in that it ebbs and flows inside us like the tides on the beach. The time between losing faith and then feeling its return again is individual and can be highly variable.

    Human beings were never meant to survive entirely on their own reserves of hope, faith, love and all the other resources needed to sustain life, that’s why we have relationships, friendships, interactions and companionship, they act as a lifeline when our own reserves are gone.

    I believe that the function of hope is to sustain us during times when we really don’t know what is going to happen and what we will have to deal with. It’s our inner most desires trying to drag us through the constant day to day grind and anchoring us in times of hardships. I truly don’t know what will become of my life and my body as the years progress but I hope there will be a use and purpose for me. I hope. I must surrender to the unknown while holding on to something…

    Many years ago, after my first heartbreak, I was convinced that I would never love again, furthermore, I became increasingly convinced that I could never love again. I felt depleted and spent and I remained that way for many years. Alive but in some ways empty. Until the day that I started to slowly but surely develop feelings for someone new, only this time my feelings were tempered with the experiences of past wounds, but nevertheless it grew to become love. However despite the many years since I had felt that depth of love it had not stopped me from feeling it once again, despite it being somehow changed and perhaps even deeper. Love still arrived despite my lack of hope.

    Over the past decade there have been many people who have remarked to me that they have marveled at my strength to survive amid difficult circumstances and during some of my hardest struggles, but the honest truth is that I have never seen strength in what I have done or what I have faced, in fact if I was completely honest I don’t see strength at all in myself. I simply did what I could do and what I knew how to do. I am completely and utterly human in all aspects of my personality.

    There are many more times over the past decade that I have lost all hope in myself and my life, but I have still lived on despite of this. When I have been at my most empty I simply floated upon my husband’s reserves and it is his hope that has had to feed us both. It is also worth noting that love, hope and belief are things that undergo great transition and transformation over a lifetime and are very much dependent on our experiences to forge it and shape it.

    To try to clarify this I offer the example of someone about to go to university/ college. At the beginning of such an endeavor their hope might be to graduate with honors and then to find a worthy vocation. At the end of many years their hope may become to simply graduate and finish their studies and take whatever position they can find. The ability to accept either outcome, or an alternative, is the stuff of survival but is independent of what they might be hoping for. In my own case my illness was to ultimately prevent me completing my final year of study and also take away any career aspirations I once had. Wasted years and effort? Is it more important than where I am now and what I have today? Is there really an ultimate answer?

    Hope may not be eternal but it can be renewed.

    People may think that my partner and I just have this magical relationship that has never faltered and has endured all things but that wasn’t always the case at all. As I sit here today I can honestly say that both of us have doubted and questioned whether we could survive as a couple.

    Many of our close friends and family had urged us to separate for various reasons over the years, both of us have contemplated whether we could go on in marriage. Yet here we are. Was it hope? In most break ups it always seems like one person has lost hope more than the other, which what can make them all the more painful.

    Hope ebbs and flows and it can change without knowing when and how, but that is also the fundamental nature of life and the human condition which few can truly appreciate.

    Ironically, as a younger person I had many hopes but today my hopes are much fewer but deeper. I hope that writing these pieces that some people will feel a connection. I hope some people will see things they may not have seen before. I hope that some people might understand a new different way of living. This is amongst some of the few hopes I cling to today, along with the constant hope that tomorrow I will be able to do a little more or rest a little easier than today.

    I hope.

    Gentle hugs,

    Trish

    Should I?

    Note: I saw a documentary recently in which I marveled at the flora that somehow have endured in the most difficult of climates and have even managed to bloom and reproduce. It led me to the following piece…

    I was pondering a heavy question recently, which I have to admit that I still haven’t reached a comfortable position on but I have continued to wrestle with it regardless. The question, put very simply, is ‘should I be grateful to those who have stayed in touch since I have become this ill and incapacitated?’

    Admittedly there have been very few that have actually chosen to stay in touch, but at this stage of my life and health I feel I can now be less inclined to ponder their motives or question their decisions. I feel I am far more able to just accept their choice in a detached way. There is an old adage that says “it is what it is” and I find myself using this constantly in life now.

    For the few that have stayed in touch I prefer to think that they do so for the right reasons, which to me are because they enjoy talking to me, they have a deeper appreciation of who I am and they understand me on a broader level outside of my illnesses. Despite the fact that my illnesses now control a lot of physical abilities and choices, there is still another version of me that exists simultaneously and on another level.

    We coexist as best we can.

    One of the first things that illnesses and disability teaches you is how many things you took for granted. It is this painful truth that I now live with on a daily basis and I can never outrun. I took so much for granted previously that I find it hard to now witness these actions in others, so I stay silent as best I can.

    A person who bemoans driving to the shops can never comprehend the devastation of losing your ability to drive and the independence that comes with it. A person who complains of having to walk too far in the parking lot can never understand the agony of not being able to walk at all. It is a different perception and a different reality.

    For many of my former friends and loved ones I imagine I am the living representation of some of the things no one wants to ever be confronted with. So they look away. They go away. And I can understand it. I am sure I have done it myself in the past.

    Which then brings me to realization that for those that have stayed on, endured and persisted with me, I marvel at our new reality and the interactions we have! They are built differently than those I have ever had before and this is an amazing treasure.

    I will try to explain …

    years ago meetings and outings with a friend may include discussions of recent events, activities, achievements, goals sprinkled with a few deeper moments discussing feelings and emotions about things. A recent holiday can be dissected and retold over and over, as can a failed relationship or financial concern. They were often a way of pinpointing how you were in relation to your peers. Thankfully this has changed for me now.

    Today I get to speak with those that I keep bonds with on a range of topics and about the things that matter more deeply to us both. A find this far more rewarding. Perhaps because there is an unspoken understanding that we must make the most of our time interacting before pain and fatigue overtake us?

    Those that have stuck by know that there is no need for pretense and feel that they can let down their guard around me and speak openly and honestly on a range of topics. It seems as though they recognize that I have wrestled with many demons and so they feel less inclined for hiding anything or concealing emotions, knowing there is now a depth and strength to the human condition.

    After all this time being unwell and declining has weeded out those who are far more superficial or only interested in what I might be able to do for them. Of this I am truly grateful.

    I have always marveled at how my husband transitioned into my illness better than I did. He once said that what he gets from me is far more relatable and understanding than when I was more physical and able bodied. He sees me with the facade of my external self stripped away. I hope that is what my current friends treasure too.

    Reliving old times is all very well and enjoyable but the reality is we just can’t live there. We are not those people anymore and unable to go back. What I desire more than anything from my current special circle is that we are able to accept and work within the new reality and this version of me in a way that is respectful, treasured, rewarding and healthy. I don’t want pity, duty, false praise or obligation. I only make room now for honest and sincere interaction and acceptance and appreciation of the now… After all, that’s all we really do have.

    I am glad of all those people who were present at each iteration of myself, but I especially treasure those that are here for this version and who hold on because of the love and happiness we share today.

    Gentle hugs,

    Trish

    What I Have Learned From A Bed

    As much as I still hate it, the fact is that my health has confined me to my bed more often than I could ever have imagined. Even after all these years I am still the worlds worst at being confined to a bedroom, and I am not proud to admit that I do not make it easy on myself or my partner. It is my sincere hope that I will become better or make a peace with it eventually.

    Being confined to a bed is not the cozy, peaceful, fun, lazy or self indulgent image that many healthier people like to imagine. Far from it. I suspect that it is what they imagine because that is what they know. I only wish that it was how bed confinement was. Truly. But it’s not at all like that for me.

    When I find myself confined to the bed and surrounded by the four walls of my bedroom it doesn’t take long for my spirits to drop and my emotions to become unstable. Pure frustration is added to the pain and suffering I am already going through. It makes for a truly difficult time for me and my partner.

    When I find myself confined to a bed I tend to do two things a lot; suffering and thinking. When I am not struggling with the pain of the circumstances I will spend a lot of time in deep thought. This has proven to be my greatest achievement and my darkest demon.

    I can spend far too much time thinking backwards and remembering things I once could do and things that I wish I could still do now. It’s the worst torture imaginable! I have learned that it is best to distract myself when I feel myself sliding too deeply into the ‘what was‘ or it will only hurt me emotionally; but it is so easy to do!

    Recently I remembered myself back in my career and the countless hours I had spent doing planning, meetings and managing, all from my confines of my desk. I worked very long hours and, more often than not, I would work 7 days a week. I can remember I rarely had time for entertainment and relaxation because of the workload and my responsibilities at the time. This got me thinking about my current circumstances and doing some deeper soul searching.

    I have recently been training myself to see these current times as being more like my new job and my new working environment. Instead of spending many hours at a desk and computer in the middle of the city I am now shackled to my bed and room working every bit as hard, if not harder! This has become my current workspace. Every day that I would spend at my desk I endeavored to make the most of my time and the best use of my skills. That was my focus then and it is still my focus now. This is what I try to do everyday with every little bit of my strength and ability.

    In this sense I have always asked myself what things can I do and how can I make the most of my time, and ultimately my life. When I am crippled in pain or fighting some other debilitating symptoms I am invariably thinking and planning what I can do next. I am writing my blog in my mind or planning the next grocery list or project. I am even be scheduling visits to the vet or listing all the things that need to be done around the home.

    As well as planning I am also problem solving issues or difficulties that my partner and I may be facing in our lives and with the outside world. The problem solving and creating that I once did for other companies I now do for us from my home office. My bed.

    When physically able to I will fold washing, iron, peal vegetables, order groceries online, design home renovations, write business plans and develop ideas and suggestions which could make our lives better, more secure or more livable.

    I have never believed that it has never stopped being my job to contribute in any way I can.

    When I look at my time spent in bed as being doing my job to aid my body, and yet still do whatever I can to aid our lives, I feel less distressed when I have to face days, weeks or months without being able to leave my room. In fact it’s the only way I can bear it!

    From the confines of this bed I have managed to do, and to organize, things that I could never have dreamed possible and to achieve things that have even surprised myself. In fact even bedridden I am working harder than I ever worked before. It’s an endless job with never ending challenges and I can never know when I will ever get a break. Ever.

    If I am not writhing in pain and doing what I can to help this struggling body I am doing all I can to help my family, my relationship, my loved ones, my friends, my autoimmune community and myself.

    I know many people will never truly understand what I have described, and it is not easy to explain to people in general, but living outside the norm is never an easy thing to do and many struggle to do so.

    My job is not an easy one, it’s the hardest thing there is in the world to do, but I have always tried to do the best job I can every day.

    Gentle hugs,

    Trish

    Below The Surface

    A common misnomer is that chronically ill people lead boring, easy, relaxed, idle and dull lives. I guess to the untrained and uninitiated it will certainly be a life beyond their comprehension but it is never idle.

    It may seem dull that we no longer do many of the fun things that able bodied people can do, or as often, but it doesn’t mean that all of life’s inspirations, emotions, struggles and complexities magically disappear from us. The reality is that we now have to find different ways to do what everyone else takes for granted.

    To give this a little more context I will use my own journey as an example. Over a decade ago things became increasingly difficult health wise and seemingly overnight I found myself blind in one eye, weak, numb, unable to move, balance gone and suffering excruciating joint pain, however I was still a project manager for a multinational I.T. Company and I had many daily tasks to perform. I simply had to try and manage them as best I could and from the confines of my bed and I endeavored to do this for as long as I physically could.

    Each morning began at 6 am with preparations, status updates and then on to calls all over the world and meetings with staff and customers.

    For years I oversaw international projects and roll outs from my home base and since my husband and I were strangers to the city we were now living in, we had to do everything on our own. Cooking, cleaning, shopping, working, caring for our family, and everything else in between, these things still had to be done. There was never a dull moment and still hasn’t been to this very day!

    As the years have passed by there has never been a day in which I (or my husband) have idly sat by and squandered the hours away. The reality is that somehow you have to make room for everything whilst still suffering and struggling.

    Sadly this means it has been many many years since either of us have been on holiday and the opportunities to frolic and laze are few and far between. Despite what impression that people have of the chronically ill or disabled the reality is for people like us that we never have days off. Ever.

    We are always working hard at coping, surviving, maintaining and trying to make the most out of every moment of our lives.

    I often find myself unable to, and unwilling to, go into details of how we carry out our lives because it always seems that to most people (even those who should know better) it is beyond their experiences and comprehension.

    I have rarely explained the daily challenges and routines we face, or how they can often become even more painful or complicated in an instant, because it is very rarely truly understood. This has always caused us a great deal of communication obstacles with the outside world and is precisely why we don’t really tell anyone what we have faced together over the years. It can feel like trying to explain Greek philosophy to a newborn giraffe.

    I don’t bother detailing how we have tried to order and stabilize our lives and yet somehow still managed to renovate our home, build charities, start businesses and care for rescued animals… all whilst facing excruciating daily pain and hurdles. Sometimes I don’t even understand how we have managed so far!

    But these are the types of reality that many autoimmune sufferers face all day everyday and very few people have any idea of what it is like, and many more don’t want to know.

    There are so many individuals and families out there who are struggling with these diseases and have somehow still managing circumstances that would boggle the mind of the most skilled and talented entrepreneur!

    My husband and I have amazed even ourselves when we look back and realize the skills that we have had to acquire, the strength that we have had to find, the perseverance we have clung to, the patience we have exercised, the determination we cultivated and the love we continue to show in our daily battles. I could never have imagined such things were ever possible and achievable by two individuals. Yet hundreds of millions of people around the world have had to find a way, we don’t have a choice.

    Today was a real moment of reflection as I have looked back on all that my husband and I have faced and accomplished and I am truly lost for words. We have worked so hard to continue our daily lives and create a strong future for ourselves without anyone ever really knowing all that we have done and all we continue to do.

    From the outside it may indeed look like we have boring, house bound lives that most people may consider dull and uninteresting but just like someone standing on a beach and looking out to sea, they can never truly comprehend all that lies beneath the surface of these mighty oceans and all the mysterious that lie within.

    One thing for sure though, it is never dull!

    Gentle hugs,

    Trish

    Change Of Life

    One of the things I could never have imagined as being a product of health challenges and disabilities is the way in which I handle day to day inconveniences and dramas. I have so much more resilience and ability to prioritize issues that it amazes even me.

    Years ago I would worry about what people thought about me or what they said to me. Petty things that people said to me would see me investing far too much time and emotions. I worked hard to please people and I was often in the most destructive relationship, but not anymore.

    Today the things that people, even people I consider friends or closer, might say or do to cause annoyance or drama simply doesn’t make it through my emotional filter anymore. At most it might give me cause to shake my head at the trivial nature of those actions but then I quickly refocus.

    How is it possible?

    Over the past years it has become profoundly clear to me that many of the actions and emotions out there are just not worthy of my time or investment. It only serves to sadden or irritate and generally has no real purpose or long term value. I now value more meaningful and useful exchanges so I set a high filter for most of the minutia out there.

    I no longer need a large group of social interactions or the approval of many people so I can take much more from life on my own terms. I could never have guessed that illness would offer me this type of remittance as it is not something you could imagine from such difficult circumstances.

    When you are placed in these unique circumstances and under such extreme difficulties you can never see everyday things and experience as you once did and the way that many others still see them.

    For example many people my age are still trying very hard to appear in control, appear well off, appear smarter, appear more successful and appear better looking than their friends, relatives and peers. They can still be invested in appearing this way, and in competition with others around them, regardless of their age and circumstances. These things no longer have such meaning once you have faced with real life challenges.

    Illness redefines how you see yourself and how you see everything around you forever.

    Although I would never have wanted to obtain these attitudes, skills and knowledge through these painful and awful diseases but I am amazed by how much I have learned and gained.

    Comments on social media, passing remarks from strangers, social interactions and phone conversations are no longer processed the same way anymore, and they never will be. I don’t see the daily problems and issues the same as most people anymore because I compare them to a completely different set of criteria than most people do. I view everything through an entirely different filter now and I can never go back.

    What people think of me and how they value me has become meaningless compared to how I will battle on through each day and how I will manage some of the hardest challenges most people will ever face, daily.

    I also see and feel injustices and hardships in much deeper ways than I once did. I empathize with other people’s real pain and loss profoundly and have enormous respect for those facing such challenges, even if I am not close to them personally. I have also put real effort and action into the things I believe in rather than simply offer lip service or try to look concerned.

    Sadly, it can easily draw upon too much of my limited resources when I put myself to helping and aiding people, and causes, that I feel deeply for. Because of the price I will pay I am forced to choose carefully what things I commit to and who I put myself to pain for. However I don’t believe I could be my true self without trying to give my best, and all that I can, to those things I deeply care about.

    It will always be overlooked the real toll and sacrifice that the disabled and health challenged endure when giving their resources and emotions to people and causes, therefore we have to form a thick skin to people’s comments, expectations and actions. Although this is never fully understood by the outside world. For example people will happily say my kids come first with fear of backlash but the disabled or the health challenged are never given the same respect for choosing to care for their disability or their precious peace.

    I look back at all the things I have undertaken and tried to do for others since I have been so ill and I remember clearly the price I have paid. Whether it was fatigue, pain, loss of vision and balance, muscle strain, spasticity or any number of other physical challenges, they are all the real costs to the quality of my life (and my partners) even if it is never known to anyone else. I have had to endure the ignorance and cruelty of some who never appreciated the sacrifices but I have used those times as a lesson in my future endeavors.

    I never give of myself for any other reason other than to help in some way so I have never told anyone of the pain I may have endured, in this way I know I am always doing things for the right reasons. It is also how I retain my right to say no when I must. There will always be more things that I wish I could do to help than I will ever be able to do.

    The changes in life experienced by me (and many like me) are far more profound than most people will ever have to face or can ever truly comprehend but I am grateful for the ability to see through life and through much of the noise and unimportant everyday comments (and actions). Truthfully I would never want to lose this precious and life changing knowledge even though it has come at such a terrible cost.

    Even today I could quickly reflect on dozens of comments, actions, thoughtless words or annoying behaviors that I have encountered and yet I can quickly sift through them all to recognize what is truly important and what will add to my life and what is completely and ultimately meaningless.

    One of the biggest misconceptions that I have discovered since entering this world of autoimmune diseases and disabilities is that most able bodied people will often ostracize sufferers fearing that they will ask too much or be needy of help and assistance from able bodied and healthier people when the reality is the complete opposite. I have worked hard over the past decade to never impose or ask anything of anyone and to always do for myself!

    Many sufferers are proud and amazing people who have clawed our way through the most painful and soul destroying times of life and had to do so much on our own and for ourselves. It becomes a way of life and few people really know the battles, pains, anguish and fears that we have come to face to face with … and it is truly life changing!

    It is for this reason we don’t see the world, the petty words, the competitive behaviors and the cruel and thoughtless actions of others in the same way we once did because we are always facing far more important challenges every moment of the day.

    Gentle hugs,

    Trish

    Invisible (A Poem)

    Invisible

    (Poem by Trish Dyne)

    As I sat aching and numb with my tears

    My eyes showing pain

    after all of these years

    What will happen? What lies ahead?

    My heart beating loudly with the fears in my head

    Will I recover? Is my life at an end?

    She touched my hand gently

    and then softly she said

    What lies ahead we can’t know for sure

    We don’t have answers

    and we don’t have cures.

    The pain can be endless,

    so much will be changed.

    But as you can see

    there are worse things than pain.

    some diseases are accepted

    But with some it’s quite clear

    With ‘these’ awful diseases

    you will slowly disappear

    In time you are forgotten

    and in time you will see

    That all you have worked for

    or may have wanted to be

    May be taken from you,

    although no one may know

    How painful it is

    Because you can’t let it show

    To talk about invisible diseases today

    Is seen as lying and failure,

    So you may be forced to go away

    there is no medicine to help ‘others’

    be kinder or try

    To accept that there are things

    that can’t be seen with the eye

    And while there are many questions

    one thing remains true

    It’s not the disease that is invisible

    Its your suffering.

    It’s you.