We were isolated from family. My mother was AMAZING - but was she going to live with us for the next few years? No. She had her own life to live - and I had reassured her endlessly that I would be fine. Friends? Well, you certainly find out the people who are important in life. Those that will be there for you. Many others dropped away as things became hard. On reflection this was a hard but invaluable life lesson. I was unable to drive - I'm still not legally able to drive a manual car (which we had at the time). Now of course I drive an automatic but it was a good 8 months before we were able to replace our car.
Consider - you cannot walk... you cannot drive... you have two children under two. Four precious friends picked me up and gave me lifts to toddler groups or play dates when I was able. And when I got my car the freedom was liberating!
When asked how I was I responded, "I've got two wonderful, healthy children, I'll be alright". Other mums would say "I don't know how you manage". That phrase would come out on automatic pilot hoping that that would end the conversation about me as anything deeper would promote an emotional response which I so wanted to conceal from the outside and because what would happen if I admitted I wasn't alright? I wasn't thinking about how I felt - I always responded about my physical symptoms and how I was expected to be getting better. So even though I wasn't I could still behave like I was.
When Little Man failed his health checks my heart and my mind broke. I'm not prepared to talk about the details of Little Man's illness but it did involve his brain - a form of hydrocephalus, and at 18 months we nearly lost him. So much pain and fear... yet running alongside wonder and love in the miracle of life. He was only 8 weeks old when he was diagnosed. [Thankfully, LM's condition improved once his skull fused and after some tough times he overcame the challenges of the first 2 years of his life.]
I put myself under too much pressure to 'soldier on' and I felt enormous [self inflicted] guilt about the trauma I put my family through and what I was causing them to miss out on in life. But if I'm completely honest, without my family I would not have survived. I am a mother first and foremost. I had children to get up for and a reason to keep fighting for things to get better. My children needed me and I was doing well in fulfilling their needs. But on reflection, my anxiety had become an obstacle in my recovery (compounded by very real health concerns for my boy) meaning I lost perspective and worried excessively.
Two operations later with little improvement (each with additional pain and lengthy recovery) we sought a second opinion privately. This was my epiphany. When the endless search for things to change ended. And it was not a miracle cure or a magical drug...
Acceptance was the key.
Of course, acceptance was a process. Probably a two year transformation. It took time to come to terms with this new normal. I mourned the loss of my mobility and this took time. I mourned the loss of the life I was going to have, the woman and mother I was going to be and this too, took time. I underwent counselling as part of a Pain Management Programme, which was life changing in how I view and value myself. And after that grief came acceptance.
Acceptance: that my central nervous system is damaged and my pain receptors having received acute pain for so long are frazzled and stuck on high. They feel extreme pain even when they shouldn't. There is no miracle cure.
Acceptance: that my pelvis, left hip and soft tissues are damaged and cannot be mended. A replacement will be required at some point anatomically but this will likely not improve pain levels due to acceptance of #1. There is no miracle cure.
Acceptance: that life has changed beyond all recognition. My career is no longer an option. Financially we are markedly worse off. We have been through an awful trauma which has taken its toll on us all and this cannot be undone. But our life continues, I can give more quality time to my children and we are grateful for that. Why should it follow that our life should be unhappy because of some unhappy and challenging elements in it. We choose how we respond, challenge ourselves and grow.
Acceptance: that the accident was no-one's fault. No-one is to blame or should feel guilty. Life happens in the blink of an eye. Many, many people are in far worse situations and we are thankful for being able to live our simple life. That we need to rebuild our lives, be kind to ourselves and slowly things must improve. Guilt is a waste of energy.
Acceptance: that love prevails. My best friend... yes we love each other. He sees past my physical incapacity. Everything has changed and yet the important things remain - our love and the essence of who we are as people, how we want to be as parents. It is a deeper love to be nurtured, beyond the physical or surface. It embodies how we live now in a far greater way than it would have done had the accident not happened. Our minds have been refocused on what is truly important and what brings happiness in life.
Acceptance: that I am a good mum. That throughout my illness and recovery despite it all, I was and am a good mum. I always loved and fought for my children. I failed for a while to look after myself. I have learnt from that and am a better mother because of it.
Acceptance: that we must look after ourselves in order to be best placed to look after others. We must be kind to ourselves. This is not the same as being selfish. But consciously thinking you did something well, or you deserve a cup of tea in the sunshine, or will buy that magazine you've been craving - all contribute enormously to our mental well-being.
And that was the beginning of consciously appreciating the Simple Things.
Nearly seven years on we have lots of joy in our lives. I am thankful for the changes that experiencing those years have stimulated. Yes - I suffer from crippling pain. I am and will continue to be physically disabled. We manage our life - what we do, how we do it with this in mind and of course it places enormous limitations on us. But. There is so much good in my life and I am free to really SEE and embrace it.
It's not always easy... sometimes I need to refocus and remind myself what is important in life. Sometimes how other people are able to live makes me question the choices we make - but that would happen anyway. I have time... So I love with all my heart and I am loved completely in return... and I do feel blessed.
J9 x
To read the first in this series My Disability Journey click here
Thank you for sharing your story, Janine. I didn't comment on the other post but I read it with great interest. I wanted you to know that I understand a lot of what you are going through because I live with PTSD. For me, it's the result of very traumatic pregnancies and births, due to serious complications. I was told it wouldn't happen again after the first time, so we had a second baby but it did all happen again, the complications. The whole experience was horrible and terrifying, both times, and obviously I'm done having babies. But the fear and stress and anxiety have not gone away and I don't think they ever will fully dissipate. My first child was also born with serious health problems, which are ongoing. He is generally healthy but he needs a lot of monitoring and medical checkups and tests to be healthy. When I had him, I went home to be on bedrest until he was six weeks old, only leaving the house for his medical appointments or my own. I had no family nearby (other than my husband) and friends weren't too keen to help out when they realized how big our problems were. I became very isolated and I learned to be alone. A year later, we moved across the country to a place where we knew nobody. So I've learned to be alone, and while it's sometimes lonesome and I crave support from others, I also know that I've been through things most people can't even imagine and it has made me appreciate my life and my little family all the more. I'm sorry you've been dealing with this situation for so long. I wish you all the best with your recovery, physically and mentally. I'm always around if you ever want to talk about it.
ReplyDeleteI am sorry to read that you also suffered PTSD around the births of your children. Me too. In the western world of modern medicine, the general public tend to take pregnancy and childbirth for granted. The expectation is that our medical system will enable everyone to birth safely, successfully and without injury (mental or physical) but it does happen, I found it very isolating because people in general could not grasp that childbirth is still a dangerous thing.
DeleteDiscussion of maternal or perinatal death or serious complication seems to be a taboo subject in society - how dare we even suggest that childbirth should not be the happy thing that it is painted to be? Yes, having a family is a reason to celebrate but not at the expense of ignoring the traumatic effects on families. The fact that no one wants to talk about it or even listen (too confronting for others perhaps?) makes it even more isolating and difficult for someone to work through the grieving and healing processes.
Doctors refused to diagnose my PTSD at the time because it was considered a condition that only war veterans experience. Later, it was diagnosed correctly but the delay in diagnosis prolonged the agony.
You are right that "most people can't even imagine" what you have gone through which is so isolating in itself. I wish people would just listen and accept, not judge, and commit to being true for the long haul - not just while it is convenient for them.
I am so sorry to read that you have suffered so much and send healing hugs xxx
Thank you so much for sharing your story here Janine, as I am sure that it will be a great help and inspiration to others who are going through difficult times in their lives, whether the situation is similar to yours or not. What you said about friends is so sad and so true, but finding the people who really are there for you is wonderful. I cannot imagine what you have had to deal with, but I am so glad that you are coming through and that I can get to know you a little and be inspired by your story. Thank you. xx
ReplyDeleteYou have poured out your heart. I'm at a loss of words to respond to this, everything I want to say sounds useless. I started to read your first post on your situation, but I'm sorry, I couldn't read it. It's enough (for me) to read this second post to understand the incredible difficulties you've been living through. A terrifying ordeal that no one can possibly appreciate unless it's happened to them. I'm so glad for you that you were able to bring yourself into a place where you can still enjoy life and can share it with your loved ones. It must take incredible discipline to stay rooted there, and I admire you greatly for what you have been able to work through ... both physically and mentally. I think the things you have said here will resonate with, and help others who are maybe going through troubles of their own. We really don't know what people are dealing with on a daily basis in their private lives, do we. I imagine these posts have been very difficult to write, and I just want to say thank you for sharing. Wendy x
ReplyDeleteLike September Violets, it's hard to find words. They all seem quite inadequate in the face of what you've been through. You do have my utmost respect and admiration though, you have achieved so much to be able to write these words and share your story, so thank you.
ReplyDeleteS x
I found this post quite inspirational, in reading about your journey through your trauma and your acceptance. I'm glad you are happy with the important things in life. I'm so sorry that you have so much pain and difficulties. Thank you for sharing your story, I have found strength and good advice in your words. Wishing you and yours the very best.
ReplyDeleteYou are so right about acceptance after dislocating and breaking my elbow back in 1994 it took me quite a while to accept that it would lead to the end of my police career at 24 I felt there was anything else I could possibly do on the positive side I would never have met my best friend and husband if I hadn't been injured. We celebrate 20 years of marriage this year. And then about 8 years ago we had to accept changes in a lives again when my husband was diagnosed with psoriatic arthritis. This diagnosis has changed our lives completely and with three children we have had to make many changes. What I find is that we have to do what is right for us as a family and not worry about what every one else is doing. There are just some things we can't do anymore. But we spend lots of quality time together and that has made us stronger together doing what we can when we can. It has taken a long time to get to this point and we have good days and bad days but acceptance that we cannot changes these things is one of the biggest things we have had to deal with. Thank you for sharing xx
ReplyDeleteYour optimism is so amazing, Janine! Of course, self-acceptance really helps in dealing with things. Admitting your limitations can lead you to appreciate the skills that you do have. It opens up your mind and understanding that you don’t have to explain your condition to other people.
ReplyDeleteJason Hayes @ DECORM
You're right. People expect that every disability should be obvious to the sight of the human eye, but they're not. Mental illnesses exist, and they are much harder to pinpoint. You can't expect everyone to be as understanding, and I think that's what makes a mental illness, like depression, difficult to deal with. In any case, I find your acceptance of everything very inspirational. I'm glad you chose joy and that you keep on choosing it above all else. Thanks for sharing that, Janine! I wish you all the best! :)
ReplyDeleteBrad Post @ Jan Dils