one month post-transplant

We have come a long way in the last month: 

James is no longer on ECMO.

James in only on the ventilator at night. He uses a tracheostomy mask at 30% oxygen for twelve hours during the day.

James is no longer on TPN. He is being fed completely through NG feeds without nausea or vomiting.

James is no longer fighting infections.

James' major organ systems are all functioning within normal ranges.

James no longer has serious fluid overload.

James' various tubes and catheters have all been removed, (and James should be free from an IV pole by the end of the day).

James is awake, alert, and oriented. He can communicate with the team, and advocate for himself. We can laugh and smile, and find joy in our time together. 

James can move between his bed and the chair with minimal support. He has become a lot more confident in his own strength and endurance.

James has been able to leave the ICU twice. He was outside for the first time in six months, and had a lovely afternoon in the atrium.

James and I can imagine a future together again. We have a sense of hope.

Why be an organ donor? Organ donation saves lives. We are so very grateful for another chance at life. There are not enough words of gratitude. We are forever indebted by the generosity and courage of an anonymous stranger.

morning update

I thought I would give a brief morning update (and move away from all that doom and gloom). The team is still very concerned about James' lack of improvement, but also communicate an overwhelmingly positive resolve that James will recover with time. Sleep deprivation has made me vulnerable to that looming shadow of depression. It is more important than ever before to focus on the positive.

James is in the best possible place in the world. Toronto General is an international centre for multi-organ transplants. I cannot emphasize enough the exceptional and genuine care that James and I receive in a daily basis. We feel completely loved and embraced by the entire ICU and Transplant Teams. We will never be able to fully express our gratitude. 

We also have incredible communities of support. There are hundreds of individuals sending James and I all the love and best wishes in the world for a full recovery and a chance at a healthy life together. We never have to feel alone. Thank you to everyone for your continuous love and support. We really appreciate your generosity of energy and spirit during this difficult time.

It is painful to go through this experience without James by my side, but James' body needs time to heal. The sedation allows his body the rest it needs to focus on that healing. It means the ventilator can breathe for him without resistance. That allows for healthier gas exchange and regulation processes throughout his entire body. For now, James is stable on sedation, and I am grateful for that offering of peace and calm.

We can expect complications with re-transplant, but there is no reason to believe that James will not make a complete recovery. James has all the strength and all the drive to survive. We will get through this rough patch.

Edit: James' most recent bronchoscopy sample has come back positive for a fungal infection. His cumulative fluid balance is also a serious concern. He will get a nephrology consult to consider dialysis to remove excess fluid.

post-transplant day one and two

I have been short of words for weeks. There has been an intense desperation with the weight of a looming depression. We were holding onto a shadow of hope. It seems impossible to articulate these overwhelming emotions. James is completely exceeding all expectation for re-transplant, and long-term ECMO patients. James has a chance. We have a chance. We will experience joy and happiness again. 

James came out of the OR at around 10:30am, and I was able to first look upon him at 2:30pm.  We were told that the surgery was within the realm of expectations for a re-transplant. James had a lot of bleeding during the surgery. There was a lot of scar tissue from the first double lung transplant, and James was on Heparin (an anti-coagulant) to maintain the flow of the ECMO circuit. He required twelve units of blood, and has had several more transfusions to maintain his hemoglobin levels. 

We were told that James would most likely remain on ECMO for twenty-four to forty-eight hours to allow his lungs to rest. The sedation was also expected to last for at least several days. James had made it through the hardest part of his quest for lungs. We would have a long road to recovery ahead. 

James' strength, determination, and drive have never been more evident. James was awake within hours, and mouthing "I love you" and "What happened?" This was not the only incredible feat and indication of progress. The ECMO circuit was removed at 7:00pm! There have been a constant of team members in and out of the room to send James best wishes, and affirm that James is doing even better than expectations. 

This morning, James was already looking better (and a lot less swollen). He has been removed from pressure control on the ventilator, and is on pressure support. He is being supported with 40% to 50% oxygen. (We had been on 60% to 100% for the last three months, in addition to 100% oxygenation from the ECMO circuit). He is very responsive to my voice and external stimulation, and of course, full of wide-eyed smiles. My world stops to experience James' gaze.

James was taken off sedation early in the morning, but within the hour, James was thrashing around and screaming in excruciating pain. The sedation was started again, but James has developed a high tolerance in the last few months. He wakes every few hours in a lot of pain. The team is working on getting him a PCA for personal pain management control.

I am feeling a range of emotions. It all seems very surreal. I am filled with an incredible hope for our future. I have not felt this level of joy in a long time. We feel very embraced by our families, friends, and communities. We are surrounded by love, light, and support. I read every comment, and I truly appreciate all the blessings.

gratitude

I am short of words. Instead, I will focus on gratitude.

I am grateful for James.
I am grateful for James' strength and determination.
I am grateful for James' laughter and smile.
I am grateful for James' passion for life.

I am grateful for James' love.

I am grateful for organ donation and transplant.

I am grateful for activism and advocacy.

I am grateful for access to world-class medical care.

I am grateful for an exceptional team of professionals in the ICU.

I am grateful for feline cuddles and kisses.

I am grateful for sunshine.

I am grateful for hope.

I am grateful for friends, family, and community.

I am grateful for gratitude.

closing in

I want to write, but there are no words (or in the least, words that come easily to me). We go through the motions on a daily basis, follow a structured routine in a sterile environment, and hold onto remnants of hope. It is strange to accept this form of "normalcy". It has become increasingly hard to imagine that ever distant future together.

We live within the boundaries of this hospital room. These boundaries seems to extend to our dreams, creating a sense of limitations, or rather, a threat to our future together. How do I describe the sensation? The walls are closing in and there is not enough time in the world to make everything right again. It is a challenge to remain positive, and conceive of a different life. We haven't really had our chance. We have found a way to make the most out of our time, but it still does not seem to be enough. We want to live together in health without the constant shadow of death.

James' lung function took a steep decline on the day after our wedding. We were given permission to return home to British Columbia, and in that time, James and I started to nest together. We re-arranged furniture in the house, scrubbed the floors, cabinets, and walls, and weeded our way through the courtyard jungle. His lung function continued to decline at a rapid rate, and it was rare that James and I would pass a day without an appointment or test at the hospital. We insisted on creating a life for ourselves in Victoria. 

Every single day, James and I spent time in nature together. We went for picnics on the beach between appointments. We rode our bicycle through campus to find deer foraging on blackberries. We hiked along the water, and went swimming on Salt Spring Island. We went pseudo-camping on the family farm, and woke to the screeching of peacocks. We found a way to make the most of our time. It was still possible. It was still possible to focus solely on living, and on living together. 

This experience changes everything. James can no longer walk without extensive support, or stand long enough to shower or brush his teeth. It is difficult to finish a sentence without feeling short of breath and gasping for air. He struggles to breathe with all movement. He requires 100% oxygen support to turn to his side or shift his body weight in the bed. He is not able or allowed to move without the help of several nurses. His excess of tubing is clamped to the bed. He is stuck in the most literal sense. We are both stuck. It is no wonder that it can feel as though the walls are closing in.

How do we cope? How do we remain positive? We focus on hope for a live-saving and life-changing transplant. We focus on gratitude. There is a lot to be grateful for. We are grateful for access to exceptional health care. We are grateful for genuine care. We are grateful for family and friends. We are grateful for generosity and kindness. We are grateful for support and understanding. We are grateful for love. We are grateful for each other.

update

We made it through the long weekend without significant issues or changes. James remains as stable as possible. The long days in the ICU have become weeks and months. We are painfully aware of the passage of time (and the increasing risk of complications). We are forced to have end of life conversations of a different nature. James may not survive transplant. This is not the reality we chose to focus on, but it cannot ignore it either. 

There have been several transplants in the last week (including several lungs over the long weekend). We celebrate with our transplant "family" these incredible successes. We also feel the sadness of our wait.

James' days continue to be structured by physiotherapy. He is still able to do between five to seven minutes on the treadmill. He is improving in strength and endurance. He can now stand up with minimal assistance, and remain standing for a few minutes with support. He sits in a chair for four to five hours, and will dedicate time in the afternoons to more physiotherapy with arm and leg weights. I am incredibly proud of his commitment to his health. It is really impressive at this delicate stage. 

We have to really push ourselves to remain positive and focus on gratitude. This is a lot harder in practice, and is becoming harder as the wait continues to wear on our spirits. We need to believe transplant will be soon (without defining "soon"). 

What are we grateful for? 

We are grateful for access to universal health care. 
We are grateful for advances in medical science.
We are grateful that James is alive and awake. 
We are grateful that James can communicate.
We are grateful that James and I can laugh together.
We are grateful that James and I can smile together.
We are grateful for evening cuddles in James' hospital bed.
We are grateful for organ donation.
We are grateful for hope.

escape from reality

We have been thoroughly enjoying our daily escapes from the hospital. The rather unpleasant accommodations of a hospital ward room are reason enough to desire a change in scenery. It is lovely to be able to share in our own private space. We still have our morning routine. I arrive at the hospital with a thermos of tea, or rather, some tea to go with James' sugar and cream. James wakes up slowly to take his medications and prepare for the day ahead. He has physiotherapy in the afternoon three times a week, but otherwise, James and I brace ourselves for the cold, and head across the street to our little apartment. (We still go home for a few hours on physiotherapy days, but without the leisure of an entire day to ourselves). 

Ophelia prances around the apartment, and James and I collapse into bed to sleep the day away. I've become entirely unproductive around the house. My chores take several days to even reach a point of consideration, but it is completely worth a long afternoon sleep with my husband. Nights are long in his absence. We both have been missing the company of a warm body at night (for snuggling purposes, of course). These afternoon naps have become a dream to look forward to on sleepless nights. 

We both find our spirits are lifted by these hours home together. There is no ambition to do anything more than simply be together. The hardest part of the day is returning to the hospital, and once again, leaving James for the night.

James is slowly re-gaining weight with a little more solids each day to eat. He is also rebuilding his strength. He is able to walk further distances, and be active and awake for longer periods of time. These are incredible feats for a man with twelve percent lung function. There are limitations to his energy, because of weakness and faitgue, but there is always motivation to keep pushing through the breathlessness. It amazes me. I know, I know, I am always gushing with pride. It is hard not to be proud.

It has been a few weeks since I have written about gratitude. With that, I am grateful (in no particular order, and certainly, a non-exclusive list):
 
I am grateful for access to universal health care.
I am grateful for access to and availability of healthy food and clean water.
I am grateful for a warm and safe shelter.
I am grateful for the small comforts of home. 
I am grateful for Ophelia (my feline companion).
I am grateful for the ability to experience and feel happiness.
I am grateful for the ability to experience and feel love.
I am grateful for strength and motivation (both my own, and James' enduring fight to survive).
I am grateful for friendships (and the embrace and support of the transplant and Cystic Fibrosis communities).
I am grateful for James' organ donor and organ donor family. (James is 20 months post-transplant. We cherish each and every day that is possible because of this courageous and generous act of organ donation).
I am grateful for James.
I am grateful for gratitude. 

another day over and done

We had a very positive day today. I'm insanely proud of James in every respect. 

We started the day with a warm tea and morning cuddles. James had been in and out of sleep for the last few hours. This is very common with various early morning intrusions of pokes and prods. The doctors arrived at a reasonable hour with a disappointing consensus that James will need to remain in the hospital for at least a few more days. Discharge discussions and decision-making seem to be on hold. It is essential to determine a long-term nutritional plan that takes into account James' variable daily intake and gastrointestinal issues, and includes Total Parenteral Nutrition (TPN) as a prime source of nutrition. Of course, out-of-province funding further complicates the situation. 

James woke slowly with his computer as a companion. I escaped for an hour with some very dear friends from within our ever-growing transplant "family". These social excursions ease the isolation of the transplant process. I allow laughter to replace the loneliness. We completely understand each other. I feel a level of embrace and acceptance that has always been foreign to me. My expressions of gratitude will never be enough here. We never have to feel alone. We never are alone. 

James walked to the Transplant Gym for the first time in months. That's right, James walked to the Transplant Gym. Can you see my grin? I am aglow. This is an incredible feat for someone with serious limitations of breathlessness and fatigue. A precedence has been set. I will have to get some streamers for his walker.

In the afternoon, James was relocated from his o-so-private room to a ward room in the company of three other patients. We made the immediate decision to escape the hospital. It was absolutely wonderful to be home with James for a few hours. Ophelia pranced around the apartment with a playfulness that could only be attributed to a complete happiness and joy at James' presence. (I refute all accusations of anthropomorphism). I made a chicken soup, and James relished in the comforts of home. It was a sweet reminder of the relative normalcy of our lives out of the hospital (and a bitter tease to return back to a loud and crowded hospital room). The room change is less than ideal, but James will continue to cope with the same incredible strength and endurance.

Did I mention that I was proud of him? 

James is a superhero. 

gratitude and acceptance (and hospital update, take three)

James is ever so patiently tolerating the hospital experience. The long nights in hospital can lend themselves to some negative thoughts and feelings, but James is always sunshine in the morning. We both tend to leave our fears to late at night. It seems that loneliness begs the attention of our deepest emotions and allows sadness to make an appearance. We can spare a few tears here and there, but James and I take these moments as reminders to spend the days in fun and laughter. 

I am learning a lot about acceptance. It allows me to move forward with a lot more confidence in the present and for the future. It is almost a form of faith. We do not allow our fears to control our decisions. We move forward together with a focus on everything that is within our control. We are doing everything right, both for ourselves, and for each other; by ourselves and together. 

I write a lot about gratitude. We find gratitude for the perspective of our circumstance, rather than for the limitations of our circumstance. We do not take for granted our time together. We can be honest with ourselves about the realities of transplant, and still close our eyes at night without regrets. We find value in the important aspects of our lives. I fall more and more in love with James each and every day. He wrote me a card with a similar profession. There is something special here to protect. 

As for a health update, James started total parenteral nutrition (TPN) last night for supplemental nutrition through his portacath. There is a relief in knowing that James' nutritional needs are being met. This is currently a short-term solution for during hospitalizations. James may not be able to obtain coverage for extended care at home, because of the cross-province health care agreement that only allows for out of province acute care, rather than in home care (or chronic care). This is frustrating for a number of different reasons, but for the most part, I feel it is essential to optimize James' health status (including nutrition status) for transplant. This should be a shared goal with the Transplant Team, but of course, I also understand that there are limited available health resources (and it is certainly not ideal for James to remain in hospital). The fact that these are unprecedented circumstances doesn't negate the need to address the issues. We will work with the social workers on finding a solution prior to discharge. I will never be done advocating for James. 

James also went to the Transplant Gym for physiotherapy in the afternoon (and showed off his fancy shmancy IV pole). He completely amazes me with his ability to push through the discomforts of being in hospital, and continue towards the goal of transplant. He did a series of stretches and strength exercises, along with ten minutes of cardiovascular exercise on a stationary bicycle. He was exhausted (and nursing a headache), but still managed to get through the basic workout. That's some serious determination. Let's also take into consideration the fact that James has been in a hospital bed since Christmas. I'm insanely proud of him. Can you tell?

home with an update

James was discharged from the hospital on Monday evening. He was absolutely ready to be back in his own bed and the little space we have made into our home. We were very concerned about his blood oxygen saturation levels, but James' lung function appears to be recovering from the aspiration episode. We thought that James had become oxygen-dependent, but his blood oxygen levels have been slowly increasing to within a healthier range, and above the level that would indicate the need for supplementary oxygen support. James' shortness of breath continues to be severe in terms of the need for longer recovery periods and an ever-growing definition of exertion. These experiences are compounded by the fear and anxiety that are associated with the sensations of breathlessness. We are hopeful for that his shortness of breath and breathing difficulties will also continue to improve from the aspiration alongside his healing lungs. 

James' determination to work through the discomfort and pain of dyspnea continues to be remarkable. He is increasing in both strength and endurance at the Transplant Gym. He is now able to engage in cardiovascular activities for ten minutes without the need for a break and can complete twenty minutes on both the treadmill and stationary bicycle. He has also been able to increase his arm weights by a couple of pounds. These are more than noteworthy improvements. A few weeks ago, James was limited to only two to three minutes of cardiovascular activities between breaks and twenty minutes on either of the machines (rather than twenty minutes on both). James had even been exercising with the absence of weights for a few weeks. These improvements have been irrespective of James' frequent hospitalizations and recent aspiration episode. 

As for myself, I am coping within the realm of expectations for the given circumstances. There is a lot of grief and sadness to process. I give myself permission to experience the full extent of these emotions, but I also make a conscious effort to focus on positive experiences and moments of gratitude. My love for James does not ever seem to wane, but rather, I feel an ever-growing depth and intensity of love for him. James is a source of continuous strength and hope for the future. I would love to emulate his constant state of optimism. That is not to suggest that James does not also have moments of grief and sadness, but James always seems to have a positive resolve. He knows the importance of attitude for survival. There is not another option for James. James will have another double-lung transplant. Our dreams will become possible again. That is the only focus for the moment, and for the future. We will get through this. We have no choice.

a year and a half lungiversary

Our lives are always beyond prediction.

On November 9, 2009, James moved from Victoria, British Columbia, to Toronto, Ontario in hopes of qualifying for a live-saving double-lung transplant. He was oxygen-dependent and struggling to maintain his weight about 90lbs.

James and I met in Toronto in June 2010. We formed an immediate and deep connection. It took James 10-months to qualify for transplant. He waited another 9 months on the transplant list. On May 12, 2011, James proposed before heading into the surgery that would save his life, and allow our dreams to become a possibility. In James' words, "I came for lungs, and I found love." 

Tomorrow, it will be James' 18-month post-transplant "lungiversary." It would have been impossible to imagine that James would be on this journey again within a few short years, but James and I do not regret a single day together. 

We will celebrate and honor the memory of James' donor, and that very generous and courageous decision save the lives of others during a time of incredible grief and sadness. We are so grateful for the gift of another year and a half together. We wrote a letter to James' donor family with overwhelming gratitude for an incredible year of health and happiness. As always, there were not enough words to express our gratitude.  

James' life was not only extended. He was given a quality of life that was reminiscent of childhood. We went biking, swimming, hiking, and camping. We filled our lives with laughter. (We still insist on dancing and singing on a regular basis). Our wedding was a magical evening in a celebration of life. There may be fear and sadness to be waiting for another life-saving transplant, but that does not negate the happiness and joy of best year and a half of our lives.

two months in Toronto

It is hard to believe that James and I have been back in Toronto for almost two months. 

We want to be honest about the realities of our situation. We are still sorting through a lot of emotions about being listed for re-transplant. There are a lot of thoughts and feelings to process. The hope of re-transplant does not negate the fear and sadness, but James and I always seek to focus on the positive. We truly experience a deep sense of gratitude for one another. We hold onto every single moment of laughter and joy. We are very fortunate to have opportunity and access to advanced medical care. There may not be guarantees (and everything can change in an instant), but James and I can find hope in the possibilities of re-transplant.

James is back at the gym three times a week. The exhaustion and fatigue persists, but James perseveres through the aches and pains. He is looking forward to building back some strength and endurance. These benefits will be exceptionally important during James' post-transplant recovery period.

We have been spending a lot of time together. We don't focus on the disease. We reminisce about the last few years together. We laugh a lot. We even try to sing and dance. This also tends to result in laughter. It is not difficult to succumb to laughter. That is the power of our love. We have a deep and strong connection. It withstands the pain and grows through the struggle. It might be that newlywed glow, but I don't imagine that it will change any time soon. We try to imagine a different future for ourselves. It is a future that includes everything from the hours that follow, to the coming weeks in Toronto, and settling back into our little nest in Victoria. 

We find comfort and security in the presence of one another. We clasp our hands and touch our feet together at night. There is reassurance. We will wake again and share another day together. We have a lot to be grateful for.

gratitude

James is snoring away the afternoon (and early evening), and I'm left to consider the importance of gratitude. James and I make a conscious effort to practice gratitude in our daily lives. We write in a gratitude journal on a regular basis. We also share our gratitude with each other before closing our eyes at night. We mention beauty in nature, and wonder takes over for the night. We note privilege, and dive into political conversations. We appreciate literature and a love for poetry and language, and a dreamer emerges from within each of us. 

Gratitude seems to serve an essential purpose: It acts to ground us in the present moment. It becomes a defense against the negative. It reminds of all that there is to love about being in this world. It builds strength and resilience (in the face of chaos, and everything beyond our control). Gratitude allows for connection to everything essential in our lives (and in this world). It helps give voice to all our reasons to keep fighting to be here, for ourselves, and for each other. With that, I am grateful:

I am grateful for James (and the ability to love and be loved).
I am grateful for access to the basic necessities of life.
I am grateful for access to live-saving and life-enhancing medical care.
I am grateful for the opportunity to pursue post-secondary education.
I am grateful for poetry (and the beauty of words).
I am grateful for the changing of seasons (and the vibrant reds, oranges, and yellows in our window view)
I am grateful for laughter.
I am grateful for hope and optimism.
I am grateful for friends and family (and support and care in both the best and worst of times).
I am grateful for pumpkin pie and apple cider.
I am grateful for hand-knit gloves (and small labours of love).
I am grateful for warm blankets (and the comforts of home).
I am grateful for Ophelia (and feline cuddles at all hours of the night).

and of course, I am grateful for our feline friends left home in B.C:

love for st. michael's

St. Michael's Cystic Fibrosis Clinic in Toronto has an incredible history of life-saving and life-enhancing research and advanced treatment in the field of Cystic Fibrosis over the last 20 years.

When James arrived in Toronto in November 2009, St. Michael's resolved James' life-threatening gastrointestinal problems that were preventing him from qualifying for transplant. James become stable and was able to gain enough weight to become a candidate for transplant. St. Michael's helped save James' life.

We will always be grateful for the love and care at the CF Clinic. They are an incredible team of dedicated professionals and specialists.

Here is a video that documents and celebrates the last two decades:

(Do you recognize that good looking couple at 2:10?)

surprise from home!

James' good friend arrived on Wednesday in the middle of the night from British Columbia to surprise him. James was (and is) absolutely thrilled to have a friend from home. Our spirits are lifted. We definitely needed a good distraction.

We will head to Toronto Islands in the afternoon. I will update again tonight, or tomorrow morning.

We are sending out love, love, and more love.

Update: We had a great day (and that would be an understatement). It is lovely to take a break from hospitals and focus solely on having fun. We were filled with laughter and energy. We will sleep well tonight, but it is the good kind of exhaustion.

Here are some wonderful photographs from the day by our friend, Kendell, yogi and photographer (http://meandher.smugmug.com/):

James and I are very grateful to have an increasing collection of photographs together, but I should admit that I have always been hesitant about being the subject of a photograph, and I prefer to hide behind the camera. That being said, I love to be able to document our time together into a permanent collection of shared moments. We also have another friend back in Victoria with an incredible talent for photography. She generously made herself available last minute to take a beautiful series of photographs before James and I had to move back to Toronto. We love all these photographs. We love our friends.

no longer homeless!

James and I have good news to share. We signed a lease for October 15th. It is a 6-month lease (and month-to-month afterwards). We officially have a home in Toronto. It is directly across from the hospital. It has a single bedroom, a lot of closet space, and a bright view of downtown Toronto. We will also have access to an exercise room for James' physiotherapy and of course, for my sanity, to some extent.

We are meeting more (and more) wonderful people at the transplant gym. There is a very positive energy of hope and optimism in the room. We continue to enjoy sharing stories amongst individuals pre-transplant and post-transplant. The level of support and encouragement is incredible. There are no words to describe the courage in that room. I will often feel a wave of sadness watching someone struggle for breath, but there is always laughter in the background to bring me back into the present.

James pushes himself very hard at the gym, and tends to collapse into exhaustion back at home. He is sleeping more and more these days. I wake often during the night to check on him. His breathing has become very shallow and almost silent at night. It scares me and I will reach out to feel his skin for warmth. It is a significant contrast to the last year of gasping for air and loud snoring from a complete sinus obstruction. 

James and I want to share our gratitude. It is important to keep our focus on positive.

We are grateful for each other. We are grateful for each and every day together. We are grateful for friends, family, and community. We are grateful for hope and optimism. We are grateful for access to health care, and a team of genuinely caring experts and specialists. We are grateful for deep sleep, and of course, good food. We are grateful for feline friends and late night cuddles (both from each other and Ophelia). We are grateful for gratitude itself. It is an excellent reminder to appreciate the present moment.

These photos are from our temporary home. We are looking forward to moving into a more permanent living situation. It will be lovely to have more than a mattress on the floor, but of course, all you need is love, love, love.

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:
 

an update of sorts

I have to remind myself to keep writing. I've been exhausted, and sick, and it is hard to find the energy to do more than hide under the covers. The insanity and chaos (that is my life) continues. I will spare the details, but it really has been a crazy few weeks between holidays, illness, appointments, accidents, school assignments, and of course, a stolen wallet and broken computer. 

Stress seems to compound on itself (and create a false impression of exponential growth in magnitude). I continue to cope, because, well, I have to. I go through the motions. I focus on that which is is within my control (or in the least, provides the illusion of control). I remind myself of the importance of taking strides from one moment to the next.

I have also been cleaning and baking, and cleaning and baking, and cleaning and baking. James will be back on Thursday, and it feels wonderful to (finally) be preparing to share my space with him. I have not written (or talked) about the loneliness: I really do need him. (He helps me self-regulate). It hurts to love someone this much. It hurts to miss someone this much. The time did not go by fast, and I'm scared to let him go again.

I wrote (briefly) about gratitude a few posts back. It seemed incomplete at the time (as it always is), but there was something in particular I wanted to re-visit: my gratitude for tissue and organ donation, and by extension, for James' organ donor and family). I never imagined I would become so passionate about tissue and organ donation.  I still don't have the words to express or articulate the extent of my gratitude. (I cannot even begin). Organ donation is an incredible act of generosity.  It is more than a "gift" of life, or a "second chance" at life for single person. Our dreams for the future have become a possibility for James, and through James, for his family, and friends, and all of his loved ones. I am forever grateful to and for James' organ donor and family.

[On a not-so-aside: there was an important article in the newspaper this past week about dispelling the myths regarding religion and organ donation. This is a topic I would like to explore further in a future post. Specifically, I am interested in the conflict between death and/or burial rituals and traditions (halachot), and the obligation (or mitzvah) to preserve and/or save a life (pikuach nefesh). See: "Religious Leaders . . . " ].

Signing out for now. There is food to be eaten, chores to be done, and cats to be cuddled (and cuddled and cuddled).

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.