Today I learned the shocking news that another Autoimmune fighter had passed away. It’s hard to know what to say when something like this happens and words just don’t seem enough.

She was a unique lady and she did everything with spirit and emotion. She even gave of her precious time and abilities to raise funds for MS research. She was a very giving lady.

I won’t pretend to have known her on a deeper level because that is the privilege that only a few get to claim, but I can say that the person I came to know was a fighter and a very genuine soul.

After the initial shock of such a terrible loss it seems inevitable that we find ourselves descending into the if only. A place where we can punish ourselves continuously with thoughts of ‘if only I had done …’ or ‘ ‘I wish I had said ….’. Years can go by in this place and I feel like this is an unavoidable state for many of us. I have spent many years there and I am sure I will do so with each and every new painful loss; even though I know in my heart that no good come of it and it changes nothing in the grand scheme of things.

Perhaps it’s simply the pain burning on in the undying embers of our memories like a smoldering fire, always ready to reignite when we fan the flames?

One of the things that connected me to this lady was how she too was in a wheelchair and we discussed some of the challenges that this presented us when trying to make a new life with our Autoimmune illnesses and disabilities. She shared a lot of her thoughts and suggestions and I appreciated them. Probably more than she ever knew… I should have told her that more.

We were both childless and without family support. These were very defining events for both of us and had very deep effects on both our lives. It was interesting to discuss these topics with her, even if we did so only briefly.

Typical of sufferers in our circumstances, we doted on our pets and our partners. Our hobbies and our passions were our ways of staying connected with the world. I wager that you will rarely see a picture of a chronically ill person without a companion animal close by. They become the bearers of the unconditional love that we crave during these life changing times; I can’t conceive of what my life would be without them!

later, as I looked upon her Facebook pictures, I realized that I will never know, and never knew, the real depth of the person and all that she had faced. Social media will never be able to show anyone the real story.

A smiling picture of a chronic sufferer at the beach (or anywhere) shows nothing of the pain it took to get there, or the years of suffering and the sacrifices made just to have 5 minutes on a beach and in the sun. It’s merely an image but it is not the real picture… pictures become merely echoes of a life, but are not the real voice.

As I looked at her pictures I began to think if only I had taken a little time to say hello this past year… I realize it wouldn’t have stopped what was going to happen but it might have let her know she wasn’t forgotten. After all, isn’t that what we want from our time spent on this earth? Isn’t that what makes our struggles and battles have meaning?

She was far too young when she passed away. It doesn’t seem right. But how many times have we had to say that about someone though? I believe I have said it too many times in my lifetime. It doesn’t get easier. Dying early is tragic. Losing your life at a young age to illness and disease is also devastating, and the grief never really ends. … my friend had endured both.

Very few people will ever comprehend all this unless it has happened to them.

People seem to think that the life of a chronically ill person is not a real loss. For example, someone may see a person who is now in a wheelchair due to illness and they seem to think that it is merely the same old life with the addition a chair… It isn’t!

It’s not just simply laying in bed, not having a career, taking a few tablets and maybe going out occasionally. It’s not like changing jobs or relocating abroad. It so much deeper, painful and profound… It’s more like dying, moving abroad and being inprisoned all at the same time.

It’s not just the same old life with a few simple addition like a chair and some medications. You don’t just go about your old life and resume where you left off.

…I truly wish it were though!

In truth it is the end of the old life. The loss of the old life. A completely changed life which now requires a wheelchair, medication, reinvention and acceptance are some of the requirements needed in order to be able to bring some life back and some meaning back.

Losing a fellow fighter is especially hard because those of us who fight illness and diseases have some idea of the battle and the strong forces that the person has had to face. Like losing a veteran who has battled many wars for many years. A fallen comrade.

But there is no memorial, no remembrance day, no last post or no tributes for those fellow fighters we lose along the way. There is, however, the enduring knowledge that for millions around the world the battle still goes on.

With deepest condolences,

Trish