4 months ago

James and I were married on July 2, 2012. On July 3, 2012, James' lung function took a sharp decline, and continued to decline rapidly over the next couple of months. Every day together is a reason to celebrate. Today, James and I celebrate our four month wedding anniversary. These are the vows that continue to hold true to each and every moment of our lives together:

I make these promises to you:

I promise to love you throughout our lives together.

I will care for you with trust and respect.

I will offer support and encouragement for your individual growth, and for the fulfillment of our shared dreams.

I will celebrate life’s joys with you, and comfort you through life’s sorrows.

I will provide you with strength and hope for the future.

Together, we will act in ways that show compassion for all humanity, and respect for the earth and all living beings.

We will create balance in our lives, practice gratitude, and be sensitive to each other's needs.

We will build a home and a life together that is filled with love, happiness, and peace.

I love you.

Let’s get really, really, really old together.

imagining a future

First, I feel to need to mention that sleep is incredible. It seems to that sleep, in addition to exercise (as I wrote about in a previous post), is also essential to obtaining any sense of normalcy in my life, that is, in terms of my ability to cope and function on a day to day basis. It is wonderful to finally be able to sleep again. James has been discharged from the hospital, and I suppose that all I needed was the comfort and security of knowing James is safe (and sound asleep) beside me.

I have been working really hard to re-frame my thinking, and I suppose, to some extent, to challenge the intensity of this grief, or in the least, to make more sense of it. I mean, I understand that that some degree of anticipatory grief is within reasonable expectation. James and I are navigating through a very scary time in our lives. We cannot avoid end-of-life discussions and decision-making. It is impossible to completely negate these fears (without knowingly lying to ourselves). Rather, James and I make all attempts to speak with a language of hope and optimism. I try to dissuade my feelings of grief with a focus on gratitude for each and every day I still get to hold James in my arms. James is still alive. I also allow myself time to grieve, because I believe in honoring a need to truly feel the true extent of my emotions. That being said, I need to be cautious about my tendency to become overwhelmed with emotions, and the depression that seeks to engage with any or all opportunities of vulnerability and fragility. 

I think that I am also grieving for a fundamental change in our relationship. This involves the ability to imagine a future together (as the title of this post alludes to). This is hard to explain, and I'm not certain whether I will be able to accurately articulate or express it, but I will make an attempt. I also believe that it is not something that is lost. It is a change that James and I can control. We just need to find a way to re-claim it within our current realities. We need to allow ourselves time and permission to grieve for the future from our dreams, but at the same time, there is need to create a different dream for ourselves. We may still be processing all this rapid change, but James and I should not limit the ways in which we imagine a future together.

Let me explain further. When I met James, I really had no ability to imagine a future for myself. I truly could not conceive of a future without the throes of depression. I didn't know that this level of love and happiness was possible. On the other hand, James was oxygen-dependent and struggling to gain enough weight to qualify for a double-lung transplant. James depended on the dreams of a future for survival, but it was difficult to remain positive with recurrent hospitalizations (and not to mention, the loneliness of being a in a foreign city). We both struggled to find hope. James and I did something incredible for one another: We imagined a future of our dreams together. We created dreams based on a hope for a shared future. We gave each other reasons to live. (I think it is important to make a distinction here. We gave each other reasons to live. This is different than being each others reason to live). We gave each other reasons to keep fighting. Thus, I truly feel as though imagining a future together is a fundamental aspect of our relationship.

This photo was the first of us taken together, a few months after James and I met, and already imagining the possibilities:

Here we are again in our first photo together post-transplant with endless possibilities for our hopes and dreams to become realities:

Our wedding was a testament to the possibility of these dreams. It truly was a celebration of life. The future of our dreams never felt more possible. It was only two short months ago, but James and I have spent few days since outside of hospitals. We went immediately from entering the next phase in our lives (and the beginning of our lives together) to a devastating crisis of potential death. I do not believe that we were naive, but there was certainly an illusion of health, or in the least, a sense of stability. James had an incredible year post-transplant with few to no complications. We were not prepared for his rapid deterioration.  

We both agree: We feel simultaneously very old and very young. We have had a lifetime of experiences in our two years together. 

That is also another important part of all this to place in context. In many ways, I think James and I were still recovering from the trauma of his first transplant (and the following year of long-distance relationship). I had emerged from the severity of my depression in our first year together (and the ECT that left permanent blanks in my memory), but the recent death of my Bubie left me feeling fragile (and vulnerable to another episode of depression). There was a lot of transition and change (to say the least). We were still putting the pieces of our lives back together. 

Now, James and I must create new dreams for ourselves, for each other, and most importantly, together. Some of these dreams may be the same as those from the past. We can find a balance between living one day at a time (and from one moment to the next), and creating a world for our future together. We don't need to let go of them all. It is the hope for something different that makes imagining a future together possible. We need that hope to the same extent that James and I need to focus on gratitude for every shared moment.

another return to blogging

I often return to blogging after months or years of absence with a comment of observation that I only tend to resort to writing as a method of coping when I am struggling - and I am struggling, but not with depression. This is not a depression. This is a profound and overwhelming grief, or rather, anticipatory grief, at the rapid deterioration of my husband's health (and the difficulty of finding hope in a desperate attempt to focus on living). I deeply resonate with Dr. Kay Redfield Jamison's distinction and description of the differences between the experiences of grief and depression in "Nothing Was The Same." I am at a loss of words for this incredible pain, but I know that it is different than the lure of depression.

I also have a need to document these moments. I need to know that this was real. I have a deep fear that I will look back at these few short years, and I will not have memories. I am afraid that these years will be lost in a lifetime. I am afraid that I will lose James (and with him, all the love and joy and happiness that defined our relationship and that I have known). 

My former blogs have been mostly private, but I have decided to import blogs relating to James' journey with Cystic Fibrosis and Transplant (and our journey together in the last few years). We have also launched a fundraising website. The brief details of James' decline and status are written in the "Updates" section. (We have also linked to a facebook page in hopes of taking advantage of the social media network). 

That's all for now. I will make an attempt to write more in the coming days. Here are some photos from the magical night that was our wedding (because we are still glowing from that evening, and it is important to draw on those moments of happiness and joy for strength and hope from within the darkness):

update?

and thus, the pattern continues: I write often for a few short weeks (with apologies and a commitment to write more often), and then, I disappear for several months. I tend to return to writing during the difficult times. I don't necessarily have the words, but I know I need to find some form of expression.

James' departure a few hours ago was the hardest it has been to say good-bye. I know that these feelings of abandonment and rejection do not reflect reality in any form. These are neural firings in my brain, familiar pathways, and so forth. It was the first time in many months that I have allowed myself to completely feel, and in doing so, fall apart with the intensity of my emotions.  

To some extent, I have been feeling numb, or rather, not allowing myself to feel, because of a fear of overwhelming sadness. But, distraction can really only function as a temporary coping mechanism. I know I am still mourning the loss of my Bubie. It is going to be a long process, and I cannot imagine that it will get easier in the near future. The joy and happiness of planning my wedding conflicts with a desperate sadness, that is, the awareness of my Bubie's absence, and the knowledge that I cannot share these moments with my Bubie ever again. The grief comes in waves, but there are still days that it feels completely surreal, and I reach for my phone to share a story or a laugh. In her last days, I remember thinking to myself that to hurts to love someone that much.

I share a similar sentiment towards James. Separation from each other becomes painful in relative comparison to the love I feel in his presence (both from him, and towards him). He's healthy, and alive, and I don't want to take a single moment together for granted. It is difficult to express the gratitude I feel towards James. He has changed my life in ways I never thought possible. He has changed me. I cannot wait to spend our lives together as husband and wife. I never want to be far from his warm hands or sweet embrace.

My focus is taking care of myself. I have been going to the gym three times a week, and I follow a sleep hygiene routine. I've also been relatively good about reducing food allergens, and making food choices that contribute to feeling positive and healthy. I am going to Israel for a week to celebrate my grandfather's 90th birthday. It will be wonderful to celebrate with all my family. When I return, I will only have two weeks left of my degree (with four assignments in that short time to complete, and an exam during the exam period). 

James will be back in British Columbia for about six weeks. I will then (hopefully) spend a week with him on the coast at the end of April or beginning of May. We will return to Toronto together for his 1 year post double lung transplant anniversary, and for the final stages of our wedding plans. The wedding date is set for Monday, July 2, 2012. More details to follow . . As always, I end this post with an intent to write more often.