and the nausea continues

We are on day five of nausea and vomiting. I wish there was more to write about, (or at least, more positives). There is some discouragement and disappointment, but James and I both know that it will pass, despite all the discomforts and misery. Every day is still another accomplishment; a day closer to transplant. We have to stay focused on that goal. We will get there. We have to get there.

These nausea and vomiting episodes slow the pace of time in the hospital. Respite comes in the form of sleep. James sleeps on and off throughout the day, between discarded basins, and cold washcloths. I sit and knit, and listen to James' laboured breath, and watch for the rise and fall of his chest. There is a peacefulness to these moments. 

I love to hold James' hands in my own, and comfort him with back rubs. I wish there was more that I could do to ease his pain and discomfort. I know that my presence brings him a sense of security, but that doesn't seem to be enough. I remind him often that he is surrounded by love. We are grateful for all the prayers. We will get through this. We have to get through this.

gratitude and finding strength

[As with the previous entry, I wrote this in the evening, but I was unable to post, because I only have internet access at the hospital].

It seems as though I may be establishing a routine that actually involves writing on a regular basis. (It also seems to be that lack of internet access could be a great source of motivation to write). I love to write, and I wrote in journals throughout my adolescence, but I would eventually become too critical or judgmental of my writing abilities to continue for any length of time. (Perfectionism was a great barrier to many of my pursuits). My online blogs have almost always been private to protect the personal nature of my ramblings, but I am starting to understand the strength and support that can build within online communities.

James and I launched a fundraising website a few days ago. We are so deeply touched and overwhelmed by the incredible generosity of friends, family, and anonymous donors. It is impossible to even begin to articulate our gratitude. It is reminiscent of writing James’ donor letter to the family of his organ donor. There were not enough words. There are not enough words.

I was weary of asking for help with the knowledge that so many of us are already struggling with student debt, month-to-month daily living expenses, and so forth. We are so grateful for access to universal health care in Canada. We know that our struggles pale in comparison to a large percentage of the population. We want to be able to give back. We will find a way to give back.

We are also very grateful for support and encouragement during these extended hospital stays that easily lend themselves to disappointment and frustration. James and I feel very displaced in our own lives. We lack a certain sense of control over our lives. There are a lot of uncertainties. We move through our days from one moment to the next with the knowledge that we cannot take our time together for granted. There are days that it is harder to laugh (and easier to cry), but James and I always find comfort and security in each other. We both agree: We would do this over and over (and over) again as long as we had each other to hold. The strength of our relationship continues to build irrespective of the challenges that we face. This is a love that extends well beyond the depths of fear and sadness. We have been through this before. We can do it again.

As for a health status update, James was sleeping when I left the hospital tonight. He was comfortable and calm, but I was reluctant to leave. He had a dystonic reaction to his fourth dose of the anti-lymphocyte globulin (thymoglobulin), but it resolved with a short break from the treatment, followed by a dilution and slowed delivery rate. I left him with food for the evening, and stumbled down the hallway in my own state of exhaustion. It is hard to let go of his hand and return to this empty apartment. I eat dinner in silence, turn on my computer to write, and crawl into bed with the hopes of even a few hours of sleep. Ophelia doesn’t leave my side.

Here we are in the morning (with dark circles to compliment our eyes), cuddling up, and waiting for the doctor:
 

gratitude

I have written in a gratitude journal off and on for the last few years. focusing on gratitude has been part of a conscious choice (and process) of learning to 'be' in the present moment. in the depths of my depression, it has helped to bring awareness and connection (and voice) to the part of myself that wants to 'be'  in this world. through gratitude, I start to (re)experience moments of beauty, wonder, happiness, and well, everything positive and possible in this world.

today, my thoughts of gratitude are often in connection with James. with James (and in part, because of James), I am very much a different person. this relationship has been a catalyst for change (on many different levels), but I will leave that introspection for another post. for now, I will start my gratitude journal with this: I am grateful for James (and for our relationship). 

in following, I am grateful for the experience of love. that is, the ability to love, and be loved in return.

I am also grateful for my place in this world. I make an effort to focus on gratitude, rather than the shame and guilt that so easily comes from (and with) being aware of this position of privilege (and sometimes, a position of power). I feel a deep sense of gratitude for availability and access to resources that provide the daily necessities of life, including, but not limited to, clean water, fresh food, warm shelter, safety, and health care. 

in that, I am grateful for a health care system that has supported me though the darkest moments of, well, (my) darkness, and given my fiance the opportunity to continue to 'breathe' (and allowing for a future together). and so, I am also grateful for each and every individual that has helped me through this journey, and James, on his own.

I am grateful for the opportunity to receive a post-secondary education (and the freedom to pursue a path of my own). I am grateful for the ability to learn, and to engage in critical discussion, and dialogue with and about the world.

I am grateful for the children that I work with (and everything that they teach me about 'being' in this world).

and I am grateful for gratitude. there is more to write, but I will end here for today.