Recently, I have been thinking about the friends that I have lost over the past 8 years. I am sure that my fellow Painies have the same experience. As a woman we hold our friendships almost sacred. We share innermost thoughts, secrets and demons. We can share a look over a dinner table and burst into laughter over an inside joke. We can sit in silence and knowing exactly what needs to be said or done – without doing or saying it – and we know everything will be ok. I had a friend I never thought I would lose because I was sick. Recently, I saw over a social media network, she is socializing with another friend I lost to my illness. It made me sad. It made me lonely. It made me miss who I was. It made me mad. But mostly it made me want to scream. I am still here. I am still me under the pain. I am still here.
Painies have to sacrifice a lot to this condition. We’ve lost friends, family, spouses and children to this condition. Even those who have had bouts of pain and bounced back – seem to forget what it is like. Pain is invisible, not believed or understood. Those who surround us, don’t see what going to a movie can cost us. They don’t see us pacing around for hours – counting the minutes – waiting for it to stop. They don’t understand the deep sadness we experience because we can’t go to social events. They don’t comprehend the shame we feel for being weak, for being less than. That we stop reaching out, because we are afraid of getting our hands slapped. Yet, underneath all of this….we are still the people we were before the Pain. We are still valuable, vibrant and for some inspirational survivors. We are worth being friends with. We are worthy of kindness. We are just as worthy as those who don’t have invisible illness.
For those of you who have Painies in your life. A friend you haven’t talked to in a while, remember they are still there. No matter what the Pain has robbed of them, their very essence still exists and needs to be acknowledged. We as a Painie Community understand we are not always fun to be around and we may make you fearful. Please also understand that we don’t expect you to cater to or exclusively care for us. We just want you to remember – we are still here.
Our very person is not completely defined by pain. It is part of us, it creates an environment that limits us and makes it more challenging than other friendships. I can’t speak for all of us, but I think I can speak for the majority; all we want is a friend. Not a caretaker, a friend. Someone to laugh with, share secrets, watch a movie, gossip and just be. That can be done by phone calls, emails, quick lunch visits or coming over for a coffee. It isn’t much we ask for.
While I felt this letter important for me to write; I also want to mention that out of this illness I have been given the gift of true meaningful friendship too. I have found some very wonderful people, who treat me like me, not the crip. I also have nurtured and developed old friendships, which have been so rewarding. I have met some of the most amazing people through my Painie community, who provide me with hope, understanding, empathy and support.
So I thought I would write an open letter to a Friend. You can substitute your experiences with the ones written here. You can pass it along. Lately I have been remembering my life before kids, being at home full time and disability… and because I need to feel like I am still here. That I am me, not my illness.
I sit here 8 years into a disability, I never thought it would be this long. I miss you. I miss me. I miss the person I used to be. Lately, as I slowly creep towards the light at the end of the tunnel, I am trying very hard to get her back out….because I know she is still here.
I know your life is different. You don’t have children. You have a big job. You travel to exotic places. You to meet lots of famous and interesting people. You live in a more urban setting than I. You have parties to go to, cottages to visit, people to dine with and people to talk to. You have a full and busy life.
I live and work in my home. Almost all of my daily energy is absorbed my making sure the kids get to school, eat, have clean clothes, sleep, go to activities. Then my small energy stores go to cooking, cleaning and working. The rest – God love him – goes to my husband. By the end of the day I am so tired, physically, that it is all I have to give. But that doesn’t mean that is all I want to give.
I can’t go to restaurants, bars, clubs, museums or anywhere I would have to sit, stand or wait for any length of time. Although money is an issue, it is not the only one. I don’t want pity. I don’t want to be ashamed. I don’t want to hold you or anyone back. I don’t want people to see me looking like this. I also will pay the price for days after and there is only so much I can give. At the same time, that doesn’t mean I want to be alone. I am still here.
I have heard of you visiting other people’s’ children in the hospital. I heard you stay with a friend for a cosmetic procedure. I read all of the visits and time you have spent with those who have needed help. I don’t begrudge those people anything, at all. I just know I am still here too, and when did it become that I meant so much less.
I don’t really know what has happened. I am not sure where I have gone…but I do know ..I am still here.
I am still the girl
- who snuck into the Boys’ school with you, while we laughed “They brushed their teeth!!!”.
- who drove to Boston on a whim
- who held your hair while you let out the night’s debauchery
- who would spend a Saturday doing her own abdominal workout
- who danced in your bedroom to vinyl
- who was the first on the dance floor with you at school dances
- who was there for your first heartbreak
- who laughed at you, as you provided much comic relief during my mine
- who remembers the day she met you,
- who danced on tables in bars with you
- who danced on bars with you
- who danced anywhere with you
- who spent a good down payment for a house in certain Toronto Drinking Establishments
- who went to movies, watched movies, rented movies and discussed hundreds of movies for over 2 decades
- who stood with you while you got married
- who had you stand next to me when I got married
- who held your hand when your marriage ended
- who understands you buy more sheets than anyone I know and probably have about 100 different party dresses
- who knows you order your breakfast in a very particular way
- who knows you cannot survive without coffee and a lot of it
- who knows you tap your lip to find out if you have had enough
- who gets the logic that if you smoke organic or special smokes that it is better for you
- who knows what your last meal would be if you had to choose
- who knows you
- who chose you as family
- who never thought her children wouldn’t know you
I am also the girl who:
- still loves “Cherry Bomb” JCM and “You’ve Got a Friend” JT
- still needs to laugh
- has a sense of humour
- has other things to talk about than my disability and my children
- is holding on to the girl, who changed her hair cut when she changed boyfriends – which was a lot (me) and the girl who changed her hair colour with no rhyme or reason (you)
- speaks her mind…although it is not always welcome.
- misses who she used to be
- wishes, more than anything sometimes, she could take a 48hr vacation from this pain and live her old life
- is so very tired of feeling like a chore and not worth the smallest amount of time or effort
- wants to grab some moments in time back – where she could be free for a moment – and sometimes that is just reminiscing with an old friend who knows you better than most.
- is still more than a mother, wife and disabled crabby pants
- is still the teenager, the twenty something, thirty something and now forty something – all wrapped into one
- wants to scream, rant, rave and rage against the crappy hand I was dealt with my body
- wants to smash things into little pieces because of all the things it has stolen from me – my family, my friends, my work…….and some parts of me
- will fight this disability with everything I have got – which is a lot
- wonders what made you stop trying
- wonders what made you too busy to return a phone call
- still needs an old friend
- still needs a comfortable conversation, where things don’t have to be sourced and sentences are finished for me
- still needs a shoulder
- still needs someone to catch me….just once in a while
I guess I don’t understand what happened to me. The pain was and is sometimes consuming…..It has been eating into my body; to the point I was told in the Fall, if I didn’t get better….I wouldn’t see 50. I didn’t tell many people that – other than my obvious Painie group. My days have been filled with existing for almost a decade, to get through it the best I know how. This meant, I couldn’t do all the things that maybe you needed me to do. Maybe, you just became bored of me..pain is boring. I get that. I guess, you were the last one I thought wouldn’t ever have any time for me at all.
I know that at one of the worst times of your life, was the best time of mine. I was having a baby, got married, bought a house and had a great job which required a lot of travel. I felt uncomfortable discussing any of those things with you, because I didn’t want to hurt you. I wanted to include you in as much as possible without any wounds. Maybe I didn’t do a good job of that. Maybe you felt I had left you then. If so, I am truly sorry. That was not my intent. I just didn’t know how to balance your pain with my happiness.
After the second year of the pain; I know I stopped trying. I couldn’t hear anymore about other people getting time, when I did need you so very much. Selfish? Immature? Ridiculous? Maybe…..most probably. But as you know, I have limited family support, and I thought of you as my family. I had already lost 2 friends to this…..my heart really couldn’t take anymore loss. So. I stopped trying…that is on me.
I also couldn’t understand why phone calls stopped being returned. Every invitation was avoided, cancelled or just not responded to at all. Even recently, you saw a common friend and said “How are the girls? I have been so busy, I just don’t have the time to catch up.” When did that happen? When was there no time for our friendship? I lost my footing on that one.
There are some friends you don’t think you lose. Maybe you misplace them…..I am not sure. Every relationship has dips and arcs. Some of the friends I lost during this illness, did not surprise me. I just didn’t think I would lose you. It makes me sad. Because I am still here and I know you are still there too.
I know my situation is long term. I don’t know when it will end or if it will. I don’t know if tomorrow I will be vomiting all day from pain. I don’t know if I will be able to drive the car. I know that it is difficult to empathize with my situation. Honestly I am glad it is. I wouldn’t wish this on anyone. I know I cannot offer nights of shooters and dancing. Or dining and walking. Or shopping all day. But I can still talk…I am still here.
I sometimes look at myself very hard in the mirror, dig deep and try to capture a minute piece of what I looked like before. Who I was before.
I want my life to be more than Dr.s appts, medications, tests, hormone therapy, physiotherapy, etc. etc. I also know that my life is more than that. I am still here.
I want to be able to get an invitation and know for sure that I can go. That I won’t let my husband and kids down again. That I can volunteer at the school and really do the best job possible. That I can book a day to Grocery shop and it not be a window – where I feel ok – get as much done in this time as possible so I won’t fail everyone again. Then I do too much – suffer and yep – fail again. It is hard being a Painie. You are always falling down, you are always failing and almost all the time – you alone can get yourself up. Not only do people not know how to pick you up – but you stop letting them too. Just another person you have let down. Or if the person you thought would pick you up is not there – it hurts more than sometimes we can bear. It is a feeling of helplessness, loneliness, loss, shame, fear and self hatred that only us Painies could possibly understand. Why? Because we know, that if we didn’t hurt – inside or out – we wouldn’t need anyone to pick us up and we could do the picking up instead. We know that we are only strong in certain increments – not as a whole being. But we are still here.
I am not sure why I felt I had to write this letter now, maybe as I am pulling myself up from the wreckage and the kids get older and I get older, I am able to expand my focus. As I reduce my medication (eliminated 3 and have reduce pain meds 50% and migraine meds 75%), have a bit more mobility and now some of the flab is melting from my butt…….I can see that I really am still here.
Every once in a while we all have to stand up and scream, shout or yell. I am still here. Every once in a while – I speak something maybe I should keep to myself. I know from my other Painies that we share the same loss of friendships. I have been blessed with so much in my life. I don’t feel sorry for myself. I just thought I knew the friends that I surrounded myself. I knew the ones that needed me and would never give me back anything of substance. I knew the ones that were toxic. I knew the ones who have been good to me. I guess I thought I knew you and I never thought that 23 year old street youth (this is an inside joke to readers), would be 40 something strangers.
I do wish you well. I do love you, like I would love a sister. I hope you are happy. I hope your friends are good to you. I hope you have a lot of love in your life. I hope you have a lot of laughter in your life. I hope you see exciting, new things. I hope you find a true, true love. I hope your family is well and good.
I hope you are still there too.