It’s June and I realize that, once again, another year is half gone and the goals and hopes that I had planned for this year (as simple as they are) are slipping through my fingers. And that is very hard to acknowledge.
This year has been mostly hard and terribly painful, physically, which can also make things hard emotionally. It’s called reactive depression. Everyone gets it.
I get tired of telling my husband how hard this is and how hard it feels, and it is way much harder to tell my friends and loved ones how much it hurts. So i don’t.
It can become quiet hard not being able to talk about your life and experiences. Imagine if you could tell no one your ups and downs or, even worse, no one wanted to know.
The feeling that the pages of your book are being torn away, day after day, no matter how much you try and fight against it by finding simple dreams and goals to hold on to, no matter how hard you try, it still keeps slipping between your fingers.
… So I have gone quiet.
I hope that one day I will have something to celebrate and something to share about going (insert place) or doing (insert activity) that will make life more meaningful and feel stronger. Anything at all would be feel amazing!… but until then I don’t think anyone wants to know the day to day pain and worsening challenges that have occupied so much of this year. So much of the past decades.
Every year is a year I take seriously. I am always trying to make life have some meaning and create some happy or joyful things, even with illnesses. I believe everyone with health issues does. When even those little things are taken from you it can be hard to describe their impact.
So I don’t. And I go quiet.
Sometimes the hardest things to say are the things you don’t say at all.
I can’t remember how many times I have seen people either describe their relationship this way or tick that box on their personal status. But it can evoke a great deal of confusion and usually means that the person prefers not to explain, or it may be difficult to explain, their relationship.
I started to think to myself “aren’t all relationships?” I know mine is. All my relationships can be described that way, even though some are extremely rewarding and precious.
Illness can also make relationships complicated, in many different ways. Sometimes in ways I have not known how to prepare for or to handle.
A friend recently changed their Facebook status to ‘its complicated’ and I felt like it described my entire life. I didn’t want to interfere, so I decided to wait until she felt comfortable in sharing more details, in the end we only want our friends and loved ones to be happy, and only they know what their happiness will look like.
I then began to think about complicated relationships and I realized that by far the most complicated and complex relationship I have ever had is with myself.
It has had many ups and downs. Highs and lows. It has been incredibly challenging and I always hope that it can, and will, be better.
One of the hardest part about this relationship for me is the idea of self worth and value.
Having not grown up with encouragement and validation, or spent a lot of time around people who encouraged feelings of self worth and value, it has fallen on me to try to forge and piece together a notion of self esteem and self worth from what I have read, what I have witnessed in others, and what I hoped might be possible for myself.
I also got some help building a sense of self worth through some very painful experiences and people who tried to make me question my value. They are also sometimes the most memorable and profound ways to learn.
When someone tries to make you feel worthless, inferior or if they are behave coldly or cruel towards you that’s when a healthy and strong sense of self worth usually kicks in, lifts you and reminds you they shouldn’t be able to break you. A healthy sense of self worth and self esteem is that guiding light that always guides us back to safer, kinder shores… if it is working.
Trying to build such things alone is like single handedly building the pyramids… Only harder.
Trying to build a healthy self esteem later in life and whilst being chronically ill is … indescribable. Unfathomable.
But it still needs to be done. The rest of my life depends on it so I will do my best. Always.
As I watch the news this year I am shocked and horrorfied by what people can and will do to each other and to the earth. There are no depths that some will not plummet. Regardless of social status.
It is ironic that it now seems as though the middle classes can be more moral and principled than the other ends of the scale, often for very different reasons. Yet it is rarely the rich or well off that suffer the most abuses and pain but they can leave a greater amount of damage and affect on the world at large.
But perhaps I digress…
We are now a long way from the peace rallies of the 60s and the Live Aid of the 80s. So where are we now? Can we possibly comprehend anymore?
As we have become more globalized and connected we can no longer claim ignorance to the pain and suffering going on around the globe and the damage we are inflicting on the earth.
I am reminded of a quote that always comes to mind during times of confusion and chaos; which says
The only thing necessary for the triumph of evil is for good men to do nothing. Edmund Burke
It still feels true, even today.
Greed, curruption, terror and environmental damage becomes normal and acceptable only when people no longer challenge it. When good people let it happen.
Keeping a strong moral compass is as simple as remembering the right things to do, the kind things to say, the love and respect we deserve and the love and respect we must contine to show. Show to everyone.
Remembering to value the earth and those who are in our lives. It begins in our homes and we carry it through to our grave.
Just as explorers like Columbus, Magellan and Cook navigated the globe with the use of their sturdy compass and instruments, we can all find our way through difficult times and rough waters with the aid of a strong moral compass and a resilient heart.
Even as someone who may have health challenges and disabilities, we can still vote, we can still join together to support those causes and those principles that will do the most good and benefit our loved ones and this precious planet. The ideals and causes that are bigger than one person.
When we allow someone else to think for us, to scare us, to intimidate us, to exploit us and to make decisions which jeopardize such precious and fragile things, all precious and fragile things, then I believe we will collectively lose our way and we will have to be present for the slow erosion and demolition of all that is wonderful about this planet and all the living things upon it.
In times of pain, disappointment, anger and loss, I suggest us all to stay steadfast and ever more devoted to our ideals and principles. Hold each other closely and show the best of our humanity and hopes.
Today is MS day and I would like to say that having neurological diseases are some of the most challenging diseases I have ever encountered. Why? Because of the unpredictable nature of them and the many ways they can affect everyday life.
For example. I am currently sporting bruises from where I have fallen over, not because someone has tripped me or pushed me, but because for no reason at all I will lose my ability to feel or move my legs. They may also become weak and contort in the most painful ways; also known as spasticity.
My vision will come and go and also become blurry during time of heat and exhaustion. Therefore I must always try to stay cooler and not exert myself too much.
And the fatigue! Like trying to run through wet cement.
I am also prone to swallowing issues and I will become unable to swallow for periods of time, making it difficult to eat and drink.
The nerve pain and neuropathy is truly awful! The feeling of electric shocks down your limbs or a blow torch on your skin. This can come and go without warning and can be extremely challenging to control.
For someone like me, who felt embarrassed of being in a wheelchair at first, the challenges were very real. However, like many people, I had to come to terms with that, but it’s still something I wish was not my reality. I am sure most people would prefer not to rely on a wheelchair to move around.
When I was younger I remember the feeling of walking through those carnival tunnels that tipped and moved while you were trying to make your way through them. Or. When trying to walk around on a small boat in rough seas. This is my daily existence and there is no cure. It is also the reason why I can fall over and can no longer drive. Balance issues are very common.
This year I will go to a urologist to see what can be done for my bladder dysfunction. It is quite difficult when you are forced to go to the toilet at least 10 times a night or have constant ‘accidents’ because the nerves that control your bladder don’t work properly.
Put simply, the brain is the most important signaling device for almost ALL bodily functions, even the ones that you are unaware of. And it is common for me to have irregular breathing and heart rates, which will happen without notice.
Yes. Neurological diseases are NOT easy and there are so many symptoms that it is almost impossible for me to list in this piece but there are also the most wonderful, brave, hard working, kind, caring and humane people you will ever meet who are affected by these diseases, and I feel so blessed to meet them.