Experiencing Loss

Topic: The experience of loss is common for those living with the outcome of a brain injury and for their family. The challenge with this journey is that unlike other losses (e.g. physical death), people are not invited to publicly mourn the loss. If we do not give expression to our sorrow, the grief will hold us in a place of darkness. This often leads to depression, substance abuse, destructive relationships and even disease. By giving expression to the pain associated with loss, one becomes free to embrace joy and life again ~ this is where the healing begins.

Janelle Breese is an author, speaker, and Registered Professional Counsellor with expertise in grief, loss, life transitions and brain injury. She is Editor of Headline magazine and the author of A Change of Mind: One Family’s Journey through Brain Injury and the upcoming book, Extraordinary Mourning: Healing for a Broken Heart.

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Question 1: When trying to deal with the grief and loss of my daughter who was hit by a drunk driver at age 13, and trying juggle the many jobs of caring for her afterward, I am often accused of living in the past. The present problems are a constant reminder and challenge created by the past incident. The people who accuse me of this are my friends and family. Its very hard to take. How does one deal with this? - S.
 

Answer: Thank you, S., for your question on how to deal with the expectations of family and friends when they believe we should be further along the grief journey than we are. This is a very difficult situation and certainly one that is quite common. First of all, each of us grieves in our own way and in our own time. There is no cookie-cutter approach to getting through the journey. When people have high expectations for others to ‘get over’ their grief or to ‘get on with life’ it is often their inability to be present to your pain. Secondly, they are likely responding to you in the only way they know. They are not living what you are; therefore, it is difficult for them to understand why you are not doing better than you are. Moreover, people learn how to grieve and mourn from their families. How our parents and grandparents grieved and mourned a tragedy is often how what we mimic. We learn from them and they learned from their parents and grandparents. That’s the bad news… our coping skills are often handed down to us. The good news is that we don’t have to do things the same way. When you see and understand it is not working, we can choose to do it differently.

In terms of brain injury and how that relates to grief and loss, I try to educate people on the layers of loss that individuals and families experience. One cannot forge through all the layers in one swoop. Coping with loss after brain injury is much like peeling an onion… there are layers and layers and lots of tears. Within these layers are primary and secondary losses not only for the brain injury survivor, but also for each person in the family. This extends as well to friends and colleagues.

Primary & Secondary Losses

After a loss – death, divorce, separation, or other painful transition – the person encounters primary and secondary losses. Catastrophic injuries are also ways to encounter primary and secondary losses.

Primary Loss

Primary losses result from the “event” or the “call.” In this instance, a brain injury is the event and the survivor experiences primary loss(es) due to the impact of their injury. The primary loss can include changes in personality, and cognitive and physical deficits. The impact of brain injury on the survivor’s life can be staggering and the day-to-day challenges from these life-altering changes can be overwhelming for everyone.

Secondary Loss

A secondary loss spirals from the primary loss. So for an individual living with the outcome of a brain injury, because of cognitive and/or physical challenges, they may not be able to return to work. This could result in a change in income for them. If the change in income is significant, there could be a change in lifestyle. This could mean they can no longer afford to take a vacation, go out to eat in a restaurant, or continue with their favourite hobby. These are secondary losses.

Others in the family will share in some of the losses with the survivor, but they may also have their own secondary losses to work through. For example, a husband or wife may have to leave their job to provide care to their spouse. Children may have to forgo participating in community activities due to financial constraints or because the parents are not able to get them to and from events. These are secondary losses.

A significant secondary loss comes with changes in roles and relationships. A spouse is often assuming the role of caregiver and children may be asked to take on more responsibility than they should. The interaction between family members may have changed drastically and they no longer have the same relationship.

Each person needs to explore their losses and find appropriate and safe ways to express their feelings of grief.

The grief journey is complex. It feels like a lonely path; nobody understands what you are going through. That is true. No one can truly understand how another person feels; however, those who have walked this journey never forget what they felt or experienced. They can be a tremendous source of strength and courage to you.

Understanding the grief journey and its connection with brain injury is important. It’s important because if you do not acknowledge the losses that arise from having a brain injury, it will be difficult – if not impossible – to move forward in life. This is true for the person who is living with the outcome of a brain injury and it is true for those in relationship with them (i.e. spouse, children, family and friends).

It is difficult to leave the past behind when unresolved grief lingers. There is no side-stepping the grief. It will continue to manifest in life in different ways. It’s important to choose to do the work; however, it is a process and it takes time to work through all the layers. I would encourage you to seek out the support of a counsellor or a group with similar experiences so that you can explore and work through your loss. The only way to the other side is to go through it.

In terms of how to deal with family and friends – you don’t owe them an explanation. They will see the difference in you when you have the opportunity to do the work. You need a safe, nurturing environment frees of judgement or criticism so you can do that work. Having said that, you do have to choose and be committed to doing the work. As difficult as it is to work through, I am confident that if you are “proactive” in seeking support of those who can help you work through this, that you will feel different about life and others will see that in you too.

I hope that answers your question, S. Best wishes for you and your daughter.

Janelle

Question 2: Hi Janelle, I was just reading through the Brainstreams website and I came across your information about experiencing loss. Anyhow, I was just wondering if you could advise me where to begin. I am a brain injury survivor of 31 years. I'm 57 now, was 26 and pregnant when I had an avm. I have done OK but there are days, like today, when I feel really down. I feel I'm always trying to please people and never know who I am. I choose my words very carefully so I won't be made fun of or put down. I know that my family care about me but treat me differently, but then, I tend to avoid conflict or back down from my own opinions. I used to work in administration but after my kids grew up was able to return to work as a support worker. My brother cut contact years ago making it very apparent that I was not good enough for his family, My other died twelve years ago and my father has alzheimers and is in hospital close to where I live. I notice that even where I work my coworkers do relate to me differently. I also feel more comfortable with people when they don't know 've had a brain injury. So I was wondering if there is any advise you could give me to help me relax and be myself with people.? Many thanks - S.

S., thank you for sharing your story. What I hear in your story is that you have suffered many losses. It is very challenging to work through multiple losses. Sometimes the losses happen at such a rate, that a person does not have time to adequately work through one loss before another tragedy or loss is sustained. The person may begin attempting to cope with their feelings of a new loss and feelings associated with a previous loss are mixed in. It’s like that old snowball effect. It gets bigger and bigger.

Certainly Sylvia, I can’t generalize on your situation but I would recommend seeking out the support of a good counsellor who has experience in grief and loss. He or she will be able to help you ‘unravel’ your thoughts and feelings about each loss so that you can move forward. Working with a counsellor does not mean that you have to commit to years and years on the ‘leather sofa’. Often a few sessions can help to shed some light on the situation and give you a new perspective. A counsellor is not immersed in the pain or family issues so they are able to listen to you, offer feedback and assist with problem-solving if needed, and help you to discover ‘you’ in a way that those close to you cannot. It is a worthwhile investment!

It sounds to me like you are feeling ready to do some work for you! You would like to relax and be yourself with others. The most important part of being ourselves with others is to truly love ourselves. That’s a tough one for people. Not many of us can sit around saying, “I love me! I love me!” The tendency is that if others are not happy with us, we think it is something that we have done. That’s a big mistake. Not everyone will like you or want to be your friend Sylvia. But I bet there are many people who love you and others who would like to get to know you and be your friend. Focus on those relationships… the ones that make you happy and accept you for who you are. I am sure you have heard the saying… ‘like attracts like’… well, this applies to relationships too. Surround yourself with happy, kind, thoughtful people and make a conscious choice to be as upbeat, thoughtful and kind as you can to others. You will begin to bring into your life, relationships that are whole and fulfilling.

There are many great books that can help you to work through the process and to learn to let go of the judgements that others impose. Some of my personal favourites are Homecoming by John Bradshaw; The Power of Intention by Dr. Wayne Dyer, and The Power by Rhonda Byrne. I have other helpful books listed on my website at www.lifelosses.com under Resources.

To help you relax, my first question would be is “what do you like to do?” Do you like music? Writing? Nature? Dancing? Sitting by the water? Cooking? We can do so many things to help us relax and to tune into who we are. Explore different avenues. It doesn’t have to be expensive either. Journaling needs only pen and paper. You can begin meditating by listening to your favourite CD. Pick up a paint brush and try your hand at watercolours. Do what makes your heart sing, S.!

Question 3: hi janelle i was very relieved to have stumbled upon an oppurtunity to read about you and in turn ask a question my question is is there any kind of recommended time or proccess one should go through before trying to date or take steps toward getting back things they have believed to have lost the reason for my question is that at age 23 i was a highly successful accomplished young man i owned acompany was engaged, had respect and admiration of family and friends exclled at sports and then in the fall of 2009 i had an hemmorhagic stroke due to anuerysm, which has left me without the use of my left arm hand or vision along with epilepsy as well as no abilityto drive work in the career i loved and spent 5 years mastering im at the point in life now where most attempts to get back some of these losses turns out to be futile im unsure as to whether this is due to not taking the proper amount of time to grieve or even grieving at all i guess im unsure how to grieve out wardly any opinons or suggestions youmight have would be greatly appreciated thank you!!

Hi M.:
Thank you for writing to me. You certainly have been working through a lot! Survivors of brain injury experience layers of loss. This is true for their family as well. The primary loss is the event… in your case the aneurysm. From the primary loss came secondary losses such as: loss of employment, loss of relationships, loss of lifestyle, and loss of independence (i.e. driving). Each of these losses will hold some feeling for you and to adequately grieve the loss, it’s important to give expression to your feelings. Grieving is about how we feel on the inside. Mourning is giving expression to those feelings and getting them outside of ourselves.

Sometimes we can give expression through talking and sharing our story, sometimes it is through writing (i.e. journaling), sometimes it is through reflection. Each person needs to find the way to express their grief that works for them. I encourage people to find a counsellor or support group to assist them in doing this work. There are a couple of reasons for this: 1) A counsellor is not immersed in your loss, family dynamics or day-to-day life so they are able to help you reveal the layers of your losses and to find appropriate ways to give expression to your loss. 2) Family and friends are often working through their own losses and do not have the energy or ability to be present to your pain.

Working with a counsellor gives you the opportunity to do the work at your own pace and to relieve your personal relationships from the burden of working through the process. It’s wonderful to let mom be mom and a best friend be a best friend. If in these relationships though, if the conversation always comes around to what happened or what the other person is going through, the relationship becomes strained and often begin to fall apart.

When you ask about steps that you should/could take before trying to date, I would encourage you to not focus on the dating or intimate aspect of a relationship. Instead, focus on building healthy relationships that bring joy to both sides. If an intimate relationship evolves from this, you can be sure it will be wonderful. Focus on being the happiest person you can be. Go out of your way to smile, be cheerful, and do nice things for other people. Ask for feedback from those you trust to see if you are giving as much to a relationship as you want back from it. In other words, do you ask about the other person’s life and really listen. Or do you let your mind wander and tend to turn the conversation to be all about you. These are things that all of us need to work on. When we are kind, loving, warm, open and happy… we attract the same type of people into our lives. Take time to nurture those relationships and allow them to evolve into true deep friendships and see where it goes from there.

I hope this helps. All the best,
Janelle