It occurred to me today, in a moment of contemplation, that it might be confusing to others what they can or should say to me. Or how to act around me…

You see sometimes when someone you love goes through a life change or a life challenging event, it can be difficult to know what to say or do. Especially when you don’t have personal experiences that translate or prepare you for the next steps forward.

I know there have been dozens of times in the past that I haven’t known exactly what to do or say and there are no lessons in what to do when someone you care about changes or goes through difficult events. They certainly don’t teach it in schools.

Sadness, isolation, depression and awkwardness are sometimes the result of not knowing what to do or say when we (or someone we love or care about) go through something important. Something hard. Something unknown.

It was with this in mind that I pieced together an imaginary dialogue that I wish I had the ability to sit down and privately say to all my friend and loved ones. In the hope it would help make things a lot more ‘understood’. Especially from where I stand anyway.

Because I can’t take each and every person I love aside, I decided to write something that might do the job and serve the purpose that I hoped for.

Here goes…

Q: what can I say when I see you hurting or struggling. Me: anything you want! There is no obligation to do or say anything from my perspective. I don’t want sympathy or gifts. That’s not why I share my struggles. I share them because I want you to share my reality. That’s all.

Q: are you depressed all the time from being ill? Me: no. Not at all. Sometimes I can be sad and pissed off, sure. But that doesn’t mean I am constantly depressed. The same as anyone else. I still feel ALL the range of emotions that anyone else does. Including happiness.

Q: does seeing [me] enjoy myself and loving my life upset you? Me: nope. Not at all! Sometimes I can be jealous of a holiday or an outing that someone takes. But no more than when I was busy working and couldn’t do something I wanted. It is sad when I think of things I may NEVER do again, but it passes. I am just happy that others can do them and I would be sadder if they didn’t.

Q: are you bored being at home / bed ridden for extended periods? Me: nope. Never. When I am home or in bed I am fighting hard. I am physically challenged and exhausted from all that’s happening. Since being ill I have NEVER been bored. Sometimes I can’t keep up with the everyday things and activities… So, NO is the answer.

Q: do you think yourself ‘inspirational’? Me: not in the least. I am just doing the best I know how to do with a situation I didn’t choose. I would gladly line up for the cure and be ‘normal’ in a heartbeat. I don’t feel inspirational for going through something I didn’t choose BUT I am trying to make choices about how I see myself and life. I want to make choices that are helpful to me. That’s all.

Q: do you like going to doctors and having tests? Are they fun? Me: I HATE it. I avoid doctors and tests at all costs. Probably at the risk of my own welfare as I didn’t go to a doctor when I first lost my vision because I was afraid of losing my job. I find doctors difficult to deal with and exhausting to visit. And it is so hard when you leave without a ‘cure’ because I secretly want one. And. I fear them telling me things are worsening and finding new problems. Which they are doing quite often these days… So I don’t even like thinking about seeing them.

Q: has getting sick made your marriage hard? Me: yes, somethings are harder but on the whole it has made us very close and wonderful friends. It has pulled us together like friendships forged in battle. Both of us enjoy whatever we can, whenever we can!

Q: what annoys you the most? Me: I hate the loss of control of my body. I hate the side effects of drugs. I hate the pain. I hate the loss of independence and the person I was… Those are the things I struggle with internally and emotionally.

Q: what do you want people to know? Me: you might remember me BEFORE I got sick but I am NOT that person anymore. Please don’t compare me to that. Stop expecting that person to come back. Realize my life and personality has had to change and adapt to survive. I can’t people please or run after people like I used to. I can’t entertain or go dancing like I could. But I am learning to find things about myself that I can still like and treasure and I hope you can too. 😃

Q: what do you plan for the future? Me: I don’t. I have no idea what the future of my body holds for me. I have to live life one day at a time and accept change and last minute cancellations. That’s my permanent state of being. I can’t even tell you what tomorrow holds. I live day to day. If I feel capable, I try and do whatever I can. That’s how I plan my life these days.

Q: what can I do? Me: just keep being you. I love you. I accept you. I love that you are in my life. I laugh with you. I cry with you… That’s all I expect in return.

Q: why do you write about sickness and illness? Me: because I have been through life changing things. Things that many people may never know. I felt worthless for a long time and I have seen people suffer from isolation, rejection and lack of respect. I want to do MY bit to help stop that. I want to educate people about the realities for those with life long struggles. I want to help my fellow fighters to feel worthy and respected again. I want to give back to the world in the best way I know how. And I will keep trying until I can’t anymore.

Of course I can only answer for myself and I don’t want people to assume that I speak for others. These are MY answers and I hope they are helpful.

Gentle hugs,

Trish